Thursday, August 27, 2009

Thyroglossal Duct Cyst, Sistrunk Procedure, Personal Experience

This is what I looked like a couple days after surgery.

And the following picture was taken on 11/12/09 at the request of this post's followers

The top line was the incision to remove the cyst. The bottom line is a dimple caused by the drain that was put in right there.

First Day of School 2009 (for Toki)

So here's the big day. Last year it was Toki that looked beat up. This year it was me. What a first day of school impression we make. Any guesses who's it gonna be next year? These little fellows were so excited to be in the same class together again. Two years of preschool and kindergarten, not to mention the same soccer team the last couple of years....I hope they don't get sick of each other.

Fetal Position

And this is what you might look like when tending to 3 super active, lovable, frustrating boys and a wife who can be as equally difficult and has had a thyroglossal duct cyst removed. Is that a knife I see? Needless to say it has been a rough week for someone else besides myself. He did eat like a King thanks to the Relief Society. What a huge help those dinners were.



And so here is the picture that freaked me out. During a week at Jackson Hole back in July I noticed this lump in my neck when scrolling through my digital camera. I looked in the mirror and sure enough there it was. That would explain the discomfort in swallowing that I had been having that week. I played it off as fatigue and a continuation of symptoms after chocking on a chip the weekend before. It never occurred to me that something might be growing inside me. The second I saw it my stomach dropped. Scary thoughts came into my mind and I couldn't talk to anyone about it. I finally got the gumption to tell Chris and I felt better afterwards for a little while.

That Monday I saw a random family practitioner I'd never met before. After 20 seconds of seeing me he said, "sorry can't help you. This is for an ear, nose, and throat doctor. The receptionist will help you get connected with one." Gee thanks? That was helpful. Can I have my copay back? I was a bit disappointed with that meeting but later would be thankful because they led me to one of the best doctors in this field and if you are in need of an amazing Ear, Nose and throat doctor/plastic surgeon whose specialties include cancer of those areas, I'll be more than happy to give you the name of one that comes highly recommended and who did not paralyze my face or vocal chords in surgery. Side note.....don't talk to people before surgery who are eager to tell you about their neighbor who had neck surgery and lost the ability to blink or move one side of their face.....who does that?

The initial diagnosis was this thyroglossal duct cyst. It is rarely a malignant tumor. I had three doctors guess it was that from the CT and MRI that was done. Even the MRI tech. said it was cystic in nature. But regardless, I was fretting the entire time until I met with my surgeon yesterday and received the results of the biopsy. It confirmed that in fact it was a cyst and just that. Mine however, had grown into the vocal chords and my doctor who originally said that it didn't need to be removed right away or ever if I choose, said he was glad we took it out. And left it at that. The entire duct was removed. It was attached to the base of my tongue, which would explain the pain/discomfort that I feel involving my tongue, to my thyroid at the base of my neck. The part of the hyoid bone that the cyst was attached to was removed and more muscle and tissue had to be manipulated to get back into my voice box in order to get the rest of the cyst out. Most people do not have a thyroglossal duct since it usually disappears at birth. For some, like in my case, it does not disappear and poses this congenital risk.

What to Expect After Surgery (Sistrunk Procedure, removal of thyroglossal duct cyst)

And for those who have done an internet search for this type of cyst and surgery and found hardly any personal experiences on what to expect, which is what I found, I write this section for.

I stayed over night at the hospital. For many it is same day surgery. But since mine was a little more extensive and had a drain, I was admitted.

When the doc. says 1-2 week recovery and adds nothing to that, he probably just doesn't want you to worry more than necessary.

I however would add that it feels like someone has slugged you in the neck several times and warn you to be on top of your pain medications. I had no idea what to expect and have practically no experience with pain meds. including for the post delivery of my babies. I didn't think to ask for pain meds and the nurse who attended me did not have any experience with patients like myself and didn't offer me any or educate me on the different choices I had. In the wee hours of the morning I finally asked for some Tylenol. And stupid us didn't realize I was going to choke on it. Hello, duh? My neck and throat were swollen and constricted. But I wasn't in my right mind to have thought I would have problems swallowing things and he left me to choke on these large pills. I finally worked them down but not before doing some damage. I began bleeding for the next few hours, my neck swelled up even more which caused me to not be able to talk anymore, and it was hard to breath. So I highly recommend that you discuss pain meds. with your attending nurse. Something liquid or able to be administered by I.V. at regular intervals for the next couple days.

Luckily the extreme pain only lasts for a day or two and it goes down dramatically after that and I stopped taking pain meds. after only a day in a half.

I had to sleep sitting up for a few nights. My salivary glands were in overdrive and I would choke if I was leaning back. It was really hard to swallow and for much of the time I was spitting everything out. After a few days I could sleep in more of a reclined position.

It still hurts to swallow, laugh, cough, sneeze, and yawn. Icing helps. Ibuprofen helps.

I feel dizzy. It's slowly going away.

The first couple days my sense of smell was also in overdrive. Everyone smelled and it could not be helped.

I noticed someone did a search on eating after a sistrunk procedure.
As far as what to eat.....rice in broth, soft foods such as mandarin oranges, anything soft and chopped up, as long as you're on pain meds. you can probably eat quite a bit. After getting off of those in a couple of days just stay away from chips, popcorn, hard candies, pretty much anything you wouldn't give a toddler and poses a choking risk. Which may happen anyways....at least for me I was choking quite a bit even on water.

So you may expect a painful first couple of days and a few very difficult nights, then quite a bit of easing up after that. Every day gets better. It's been a week for me and today is nothing like that first night. Still have a week to go I think.

Let me know if that helped or if you have any questions. I like to be helpful even if it means sharing gross things.

351 comments:

  1. Wow, Nancy. I kept seeing comments on Facebook about a surgey - I guess this is what was being referred to. Yikes! So glad you found this. Take care of yourself and get well soon.

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  2. Holy cow! Glad it all ended up ok in the end. Did they remove part of your hyoid? You'll have to tell me how that feels when you are all healed up and the inflammation/swelling is gone. Again, glad its over and you're ok.

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  3. That looked painful! I had half of my thyroid gland removed becuase of a cyst on one side of my neck about 4 years ago. I don't think my surgery was as involved as yours, though. It was also benign. You can hardly see the scar now. I hope you heal quickly!

    In answer to your question from my blog (long time ago!) wetsuits do make you more buoyant, says Reed.

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  4. Wow! Nancy, I'm glad that you were quick to get care and everything looks like it is on the mend!

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  5. Oh my! This sounds awful. My neck is itching looking at the pictures and reading your post. It is good you had Chris and the relief society to help out. I am glad it is not more serious that this but is still sounds bad.

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  6. Thanks for the messages. It was an awful time and when I'm in the pits I try to remember that my nerves weren't cut and that it wasn't cancer. I can deal with the rest. Just can't wait for the pain to go away especially since I'm coming on 2 weeks.

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  7. i don't know why i am just barely reading this. i am glad that things went well and that you are doing better. i'm glad that your family is surviving too!!! take care of yourself!

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  8. Ahh, that would explain the little bandage in your soccer uniform picture. I guess I haven't been blogging for a while. I'm glad everything turned out OK.

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  9. Hi
    Thanks for the post im booked in for this operation on 2nd october and i'm real scared. I have lived with the lump in my neck all my life and every time I get a sore throat it flares up infected. I'm still unsure about whether or not to have the operation. Are you glad you had it removed and how long did it take for the pain to subside?
    Also could you talk after the operation?

    Thanks Jon

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  10. Could you please tell me the name of the surgeon who removed your cyst? I have one that was diagnosed 10 years ago, same as you I was told that I did not have to remove it, so it set there, not hurting or anything thankfully, but will not go away. A name, phone number or name of the clinic will be appreciated. Thank you. Joseph

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  11. Jon, I am so glad that I had the cyst removed. It had grown into my voice box. The doctor originally said that I don't have to get it removed right away; it is not an urgent surgery. However, once he got in there and realized where it had grown into, he was really glad I decided to get it removed right away. The surgery went really well. He was able to remove the cyst with success and without harming any nerves or doing any damage. For me, the pain was really bad but I think only because I didn't start the pain meds. until it was too late. So stay on top of those. After a couple days, the bad pain subsided. After about a week, I was feeling so much better. I am going on 4 weeks now and I am feeling fabulous. There are a couple quirky things. I still have some swelling. The residue causing me to feel like I'm going to choke on my drink. But I think it is easing up. I still get sore throats at night. Visually, things are looking amazing! I don't think I'm going to have a scar!! I am so glad I got the surgery even though it was scary and it does have risks. Things that I was suffering with before are gone such as dizzy spells and light headedness and nauseouness. I believe the cyst was putting pressure on an artery or blood vessel. But don't have anymore of those problems!! yippee.
    I checked into the hospital. Was given relaxing meds. before going into the surgery room. I was then given anesthesia. I woke up, asked for water, talked to the doc. and was sent to recovery. I did stay a night at the hospital because I had a drain put in since the cyst went deeper into tissue. The hospital stay was......well as you can expect....not that fun. Good luck. The best advice I can give you is find a doctor that is experienced and highly recommended.

    Azagram....send me an email and I'll send you that info.

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  12. Thanks for getting back to me and i'm glad your feeling better, in my case it is a little different as i have had this cyst all my life and it is only noticable when it becomes infected which can happen a couple of times a year or less. Other than when its infected i have no symptoms at all. I am terrified of hospitals and surgery but deep down i know I should have it removed as it may cause more problems in the future I guess. The surgeon scheduled to do the operation is head of the ENT department so Should be good. its just at the back of my mind i'm thinking that ive had this for 34 years and no big problems so why go thru with the operation.
    Well I will let you know if I go thru with it and thanks very much for the info .
    jon

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  13. I can relate to being terrified of hospitals and surgery. I was as well. And I'm realy glad it's behind me. Good Luck and I hope things work out for you.

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  14. Hi Lucy,

    just one last question was the stitches they used disolvable or did you have to have the removed and if so was it painful.Sorry for all the questions but i just want to know exactly what to expect.

    Thanks Jon

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  15. Dear Lucy, Jon just one more attempt to see if I can have a name of the clinic/surgeon so that I may contact them with my cyst. I did e-mail you Lucy, but I have not received a response. Thank you very much. Joseph

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  16. Joseph, just sent that email your way. Sorry for the slow response.
    Jon, the stitches were not disolvable. They were removed a week after surgery and it did not hurt. The nurse was real gentle. After the stitches were removed he placed strips of tape/bandages to keep the incision together. I was instructed to remove them in a week. Right now it is scabbed over but looking really good. I'll have to post up a picture soon.

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  17. hi
    i have just had the exact same operation on sept 11th in the uk, i aslo look like you like some has tried to strangle me and worse, i have been put on a vitiam drink as like you can not eat ,the pain is subsideing now but is still very swollen and very bruised. it was s uch a relief though when the stiches came out cpl days ago as due to the swelling they had pulled so tightly,i wish you all the best on your road to recovery as i know exactly what you are going through
    hugssssssssssssss
    aj

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  18. HI
    Well its only 11 days until im scheduled to have my surgery and must say I'm really scared and still in two minds whether or not to go thru with it.
    Lucy thanks for all the info it has helped me alot.
    Aj was the pain really so bad? And did they not give you any painkillers to help you ? If they did which pain killers were most effective?

    Thanks for any info jon

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  19. Hi Lucy hope all is well and your feeling much better.
    Sorry to keep bothering you, but could you please tell me how are you finding it to eat and drink now?
    Also my doctor said there is no risk of complications if I choose not to have the operation other than cosmetic ? But after reading your blog about your vocal cords this is obviously not the case.
    I guess I should just get the dam thing removed!

    kind regards Jon

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  20. Eating great. I still find myself having trouble drinking. I either have to hold my breath or cough afterwards so as not to choke. I think I still have some residual swelling. But nothing bad at all. The surgery location has healed up nicely and it looks like I'll barely have a scar if one at all. Yes mine grew into my vocal chords. Who knows how long it's been there and what else it would grow into if I just let it fester. Wish you the best in your decision and a good recovery if you decide to go through with it. Take care.

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  21. hi jon
    i will say that its a diff experiance for everyone and everyone feels pain at diff levals.
    for me the first 10 days were pretty bad i could only just swallow water, but like i said before when the stiches came out that made a big difference , mine was attached all over the place inside they had to cut part of my tounge and take out the hyoid bone. the bruising has nearly all gone now but it is still healing inside its not painfull now just uncomfortable, i still have problems eating they said it will take another cpl weeks, i didnt have a choice to have mine removed it was very extensive and was causing damage inside my throat.
    you asked about pain meds they were giving me morphine as soon as i woke then went down to codine, and like all others above there is going to be just a small thin line no real scar as such
    i wish you all the luck jon and in making a decision one question i would ask yourself though what is the risk if there is one if u dont
    take care
    aj

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  22. Hi Lucy,Aj
    Thanks you two for your replies its really helping me come to terms with what this operation involves.Aj my surgeon has not mentioned to me anything concering complications such as tongue or vocal cord problems . So that is a little worrying as I have had this cyst all my life and its been infected and swollen on numerous occasions so that makes me think my op won't be so straightforward.
    Anyway my operation is only 3 days from now and to say i'm scared is a undersatement.
    I'm pretty sure I will go thru with the op unless My nerves get the better of me.
    Anyway I really hope you and lucy make full speedy recoveries.

    King regards Jon

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  23. Thank you for your personal take on the op & recovery. My op is due on 5th Oct & am trying not to think about it. My lump is quite large & uncomfortable so the surgeon said it had to come out ASAP. I was hoping to go back to work after a week, but am unsure as I deal with customers on a daily basis. Is 7 days too early to go back to work & deal with the public? I also have to travel for work and have to fly & then go to a cocktail dinner function 2 weeks after the op. Am I being realistic in aiming for this, or will I still look very bruised & be in pain?
    Sara

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  24. hi sara
    like with pain everyone heals diff too, at 7 days i still looked like lucy in her pics my stiches didnt even come out till 10 days.
    in a way your own body can only answer that question for u .
    even now 2 half weeks i still have some bruising theere not much it looks like i guess faint love bites, the best person to ask your question too is the surgeon doing it, as they all have there guidelines they work too.
    im 2 half weeks in and only just eating some foods, if i talk too much i loose my voice.
    hope it helps
    aj
    p.s wishing you all the best jon and a speedy recovery

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  25. Hi all
    When only a day to go and i have gone and got a slight cold, do you think they will still operate?

    kind regards Jon

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  26. OH really? That's too bad. Call your doc. and let me know what he/she says. I'm curious to know.

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  27. I won't find out until I go the hospital in the morning but sure I will let you know. I really hope they can operate tomorrow after all this worry.
    Lucy how are you feeling now? You nearly 100%?
    regards Jon

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  28. Hi all,
    Well im out of hospital and its all done,and to be honest its not half as bad as I thought it would be.The waiting around before the op and then this morning when they took out the drain was the worst things but all in all not to bad. I had the operation at 3pm yesterday and by about 9pm I had a sandwich and drink and although a little painful to swallow not to bad.
    Lucy I decided not to mention the cold as I was determined just to get the op out of the way. And they were running late so didn't really check my breathing or anything like that so got away with it. Not sure if they would of cancelled if they had known.
    Sara good look with your op and don't worry these things are never as scary as you imagine.

    Kind regards Jon

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  29. what a relief that things went well and you are on your way to recovery!

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  30. Hi Lucy: I've never posted anything on the internet before so I hope I'm doing this correctly. I had thyroglossal duct cyst surgery September 24, 2009. I too had a drain tube but my doctor sent me home from the hospital the same day. The drain was removed 3 days later. I have several questions that I hope you can answer for me because I can find no information nor pictures for the questions/problems I'm experiencing. I'm 12 days post-op. and I had the Sistrunk procedure. My throat is still sore when I swallow. I can eat and drink okay but just to swallow my saliva is uncomfortable. Also, I have a large, hard lump under the incision area (the stitches were removed on day 7) that is about 2 inches long and protrudes under my chin quite a bit. The area around my incision is numb to the touch. I had no bruising at all! Did you experience any of these problems? My doctor will not see me for another month so I don't know whether to call for an earlier appointment or to just let this thing run its own course. Also, were you on antibiotics after your surgery? I was on them for 10 days. Any feedback you can give me will be greatly appreciated. I'm afraid my neck is never going to look normal again. Thank you, Judy

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  31. Hi Judy I had the operation on the 2nd october so only 5 days ago. I had the drain in overnight but they took it out in the morning. It was about half full with blood I guess about 15ml. How much did you drain? .I have not been given any antibiotics tho, what did were the antibiotics called that they gave you?
    I get my stitches out in two days but still have a hard 2inch lump under my stitches but it is only 5 days for me. From what I was told the lump will completely dissapear eventually its just a matter of time.
    My appointment with the cosultant is a week on friday exactly 14 days after surgery. If I was you I would make an appointment, as i can't hurt to see the doctor for reassurance and just to make sure things are progressing well.

    Anyway good look anddon't worry i'm sure its just a matter of time!!
    regards JON

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  32. Thanks Jon for responding so quickly to my questions. My doctor had me on penicillin, 500mg twice a day. I am 63 years old and had a heart attack in '06 so that could be the reason he felt I should be on the antibiotics. I drained very little over the 3 days the tube was in me, like 3 cc's per day or 1/2 inch of blood. I thought maybe that had something to do with the hard mass that I still have, because I didn't drain enough. Is your throat still sore when you swallow? I would think my discomfort would be gone by now but it's not. I would like to stay in touch with you since your surgery was so close to mine. Hope you don't mind if I keep checking back with you. Good luck to you also, hope all goes well. Thanks Judy

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  33. Hi Judy,
    Yes your welcome to check back with me ,I would like that also. From what I have read the drain is used sometimes not depending on the surgeon and if he feels there will be bleeding. Before I had my op the surgeon told me that I may or may not need a drain and if I did it would be just for 1 night.Its 6 days now and the swollen lump in my neck hasn't really changed in size. As for pain with swallowing I feel I was lucky as after the first day the pain went as its not a problem for me now,But if you read lucy and sara's posting I guess the pain when swallowing is to be expected. My a[ppointment with the consultant is opn the 27th oct now and not the 14 days after surgery as promised.So i'm just going to play the waiting game on the selling and hope it comes down, Anyway good luck with your recovery and don't hesitate to leave any messages . I check this site daily.

    kind regards Jon

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  34. I didn't have a lump after surgery. That would be concerning. I had the drain over night because my cyst went into my voice box and they had to go deeper into tissue and for 5 hours or so I was filling my drain every hour due to choking/coughing. The hard to swallow pain was really bad for a couple of days but by a week I was feeling a lot better. Not to say that first week wasn't uncomfortable. I had my surgery late August and am feeling fabulous. The surgery location only hurts to a good whack by my kids or accidental rough touch. I called my doctor when I began experiencing pain in my lungs/chest. He didn't think is was clotting but more a muscular thing and it would be gone in a week. He was right. It was probably caused by another choking/coughing spell. Whenever I feel unsure about something I tend to call the doctor and try to make an appt. if we think it is necessary. I hope you feel better soon!

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  35. Hi All: I will be 3 weeks post-op this Thursday. Jon, the lump in my throat below my chin and under the incision is now about 1/2 the size of a large egg. With each day I see a slight decrease in the size, thank God. I still have discomfort when I swallow, but each day that too is improving. I find it's the worst when I wake up in the morning. The pain when I swallow seems to be worse on one side of my throat verses the other depending on which side I slept on. Did anyone else experience that? I called the doctor with my questions but was told everything I was concerned about sounded "normal" and they would see me Nov. 3rd. It's comforting to hear from others since it appears none of us really knew in advance what to expect after surgery. I just wanted to hear what I was going through was normal! I thank you again for your responses. I do wonder if my swallowing problem is because I'm healing slower than you "youngsters". Again, I'm 63. Anyone have an opinion on that? Hope everyone is doing okay and I will look forward to any updates that are posted. Thanks, Judy

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  36. I really suffered with the swallowing. The first couple of days were really, really painful. The first week was super rough. Sorry if this is gross, but I was spitting out my saliva because it was too painful to keep swallowing. However, as the weeks went by, the swallowing pain decreased exponentially. But there was discomfort for a while after. I'm better now but still have to cough after drinking as not to choke. I'm thinking I still have swelling. I'd say it took about 6 weeks to feel almost perfect, and I'm still at that almost stage. Take care of yourself and I hope your recovery goes better. I used lots and lots of ice packs.

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  37. Thanks Lucy. Hearing what you experienced makes me feel so much better. I have days where I think it's never going to be over, but you have given me hope. Hope you continue to improve until you're back to 100%.

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  38. Hi all
    It's been 9 days since my op and all went really well although the cyst was larger than he initally thought with it being the size of a mans fist. Drain was only in overnight, and I was released from hospital day after op. The cut was about 11cms and the stitches came out after 5 days. Yes there is a hard lump where the incision was made. My surgeon told me that it was just the swelling and that it should go down in about 6 weeks. I was also concerned about the numbness but he reassured me that it will mend/go away in about 12 weeks. Eating in not really a problem although am not great at chewing yet, but still have difficulty swallowing saliva... with the worst being when I wake up in the morning. Bruising is still there but is now yellowing so I know that I am on the mend. After all my concerns, it was much better that I thought. Ice packs are great! I got to drive the car yesterday as I can move my neck without it hurting! Good luck to all going through the procedure.
    Cheers, Sara.

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  39. Hi Sara: Your cyst was the size of a fist?!! Mine was only the size of a walnut. God bless you. How long had you had yours or do you even know? Could you see it when you looked at yourself or could you just feel it? I'm not sure how big 11 cms is, what is that in inches? My incision, now that the swelling is mostly gone, is about 2 inches or less. Mine is also the worst when I wake up in the morning, but it really does get better. Hope you continue to make a speedy recovery. I wonder how many people have these cysts, I think more than I thought. Judy

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  40. Hi all

    Its been 13 days since my op and I think I have been very lucky with my recovery.I still have a lump under the incision about 1 inch in diameter but its not painful now when I swallow and the swelling is coming down everyday. Hi sara 11cm thats about 5 inches so quite a big cut but i'm sure with time it will heal nicely as mine was only about 5 cm and already its showing great improvement.

    Anyway I wish you all a speedy recovery and thanks again lucy for this blog it helped me understand and prepare for the ordeal.

    Regards Jon

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  41. No problem!! Wish I found something like this back in July/August. And thanks to everyone who comments. It's so helpful!

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  42. Hi Judy
    Mine grew really fast ... about 15 weeks for it to get to the size of a fist. Surgeon said it was the biggest one he had taken out. Customers and colleagues were commenting so I knew that it was getting noticable, apart from just being uncomfortable. It is now 10 days and I can move my neck. Yea!
    Sara

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  43. Hi,

    I am also schedule for an operation on December last week...I am really afraid..How long is the recovery? mine is like 2.4. Since the time I've started to notice this cyst, I wasnt able to sleep and I am always paranoid. How's the scar?
    Thanks to everyone. You inspired me a lot

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  44. Thanks SO much for everyone posting this. I was just diagnosed last week after ultrasound. It took two years of not being able to swallow or breathe and a loss of 30 pounds for the doctors to finally do imaging (ultrasound). I meet with the ENT tomorrow morning and will find out next steps. I am terrified of being put under anesthesia but know like Jon said, this is the best thing. Just want to get it over with. I want to eat a big STEAK :) God bless you all and thanks for sharing!!

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  45. Hi Jennely,Bunny

    I had mine done on the 2nd October and my recovery is almost complete. All I have now is a scar and small lump both of which are hardly noticable.I have no pain and have been back in work for two weeks. So please don't worry too much about it. I know its a different experience for everybody and I was scared waiting for the op but really it was not that bad in the end.
    Bunny the anesthesia was a breeze and you wake and recover in no time. If your really nervous ask your doctor for a relaxant such as temazepam to take in the morning before you head to hospital it will make you feel at ease.


    Anyway good luck and don't think about it,just get it done. I worried like crazy and was in two minds about going thru with it but i'm so glad I did..

    Take care Jon

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  46. Thanks Jon,

    you really inspired me...

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  47. Thanks Jon! You're such a sweetheart and have made me feel SO much better. I met with the ENT today and he wants to do a quick ct scan on 10/28 and then do the surgery in November. He warned me that I will be very sore for the first week but that's what pain meds will be for. You all have been such a wonderful help and I am actually now looking forward to this. If anyone has hints on what to do and what to eat in the first days post-op please feel free to share :)

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  48. Hi BunnyO,

    Can i ask how big is yours? and how many stiches will the surgeon do with your operation? I ask my doctor mine is 2.4 cm and my stitches is about 1 inch or less than 2inches.
    My Operations will perform on December last week after xmas so I could still enjoy the season of xmas having my bonding with my family...The surgeon said that it wasnt an urgent operation.
    can you share to me how does the feeling now?
    Did you feel any unconfortable feeling in your neck, I dont if I just feel it psychologically, coz I am paranod all the time..thinking of what's gonna happen during my operation...really scared..I have a fear in operation..this is my first time..GOSH..BUT I KNOW GOD WILL GUIDE ME, THE WAY THEY GUIDE YOU ALL GUYS HERE WHO POSTED...THANKS A LOT ANYWAY TO THOSE WHO SHARED THEIR EXPERIENCE.....pls keep me posted...

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  49. Hi Jennelyn, mine as of today mine has shrunk back down to 1cm by 1/2cm by 1/2cm. I also have a lymph node above and to the left that they say is 'bumping into' the cyst so it makes it turn into a bigger mass when combined. I have a very very hard time with mine. I have extreme difficulty breathing some days and because of the connection at the base of the tongue, I have terrible difficulty 'lifting' the tongue to swallow. I know I will be sore after the operation and I, too, am scared of being put under. Honestly though the ENT said that the surgery is so quick and there is virtually no risk involved. If they could do mine tomorrow I'd be there! I'm getting desperate. Lightheaded, dizzy, terribly short of breath and not being able to swallow is really taking its toll. I think surgery is going to be a godsend! Jennelyn, please keep me posted.

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  50. I experienced lightheadness and dizziness as well. I think my cyst was putting pressure on a vein. I no longer experience those things and nauseouness. It's been 2 months now and I'm feeling great. There are some risks to the surgery but the scary ones I didn't experience thank goodness.

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  51. Lucy thanks so much for sharing the fact that you, too experienced the lightheadedness. I agree with you that there must be pressure to some veins or even the carotids or jugular in some cases. I have truly been encouraged by reading about your surgery and recovery. I know it had to be scary finding out it had grown into your voicebox but you sound like you are doing awesome! I'm so ready to get this over with :) Your blog post has been such a blessing. Thanks Lucy.

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  52. No problem! I truly am glad that it's behind me now. I was one to want to get it taken care of as quickly as possible so as to move on with my life. I worry excessively and I knew I had to get it taken care of right away. I hope your surgery goes well and that you recover quickly.

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  53. Thank you SO much for this blogging site! I have SO many questions/concerns and the information given has helped greatly.

    My cyst isn't centered on my neck as they are usually, but instead lays just off to the right side. I have my surgery scheduled for Dec. 2 and am VERY nervous about the recovery. Mine has grown so my dr has put me on an antibiotic to see if it will reduce the size at all but I don't think it is working. I have difficulty and soreness when swallowing, as well as soreness in my neck muscles and most recently a VERY dry mouth. I am hoping to be able to return to work after 2 weeks...does this sound reasonable? How does the scar look after you are healed and how long before it isn't SO noticeable?

    I guess this is scary to me bcuz nobody I know has ever heard of this cyst or the Sistrunk Procedure.

    Thanks to all of you for sharing your stories/experiences!

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  54. I as well had never heard of the cyst. And couldn't find any personal experiences on the net. I think it would have helped. I don't think that returning to work in a couple weeks is unreasonable. I guess it depends on how you recover and what type of work you will be doing. I think I started doing light house work around then. Besides the fact that my husband went out of town then and I was left at home to tend my 3 boys, I think I survived o.k. The swelling went down quite a bit on the surgery area. What is left is a line that is visible. But I think over time (years) it will fade. Let us know how you do.

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  55. What kind of testing did your doc do before the surgery?

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  56. He ran a camera through my nose down my throat. He also requested a CT scan then ordered an MRI. I thought the MRI was unnecessary. It was a few thousand dollars btw. Thank goodness for good health insurance.

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  57. Did your CT scan require the dye? If so, did that make your heart race or anything? Did it have any other side effects like make you sick?
    Why did he do the camera? What was he looking for? Why CT & MRI? I have an appt. 11/24 w/ doc in OKC.

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  58. The Ct scan required the dye. I don't remember my heart racing because of the dye but I definitely was nervous. It did cause warm sensations as it traveled through my body. It was fairly quick and not bad at all. And it didn't make me sick. The camera thing was done at my first appointment when we didn't know what it was. It was one way to see what was going in there. I chocked on a chip prior to feeling discomfort during swallowing, so he wanted to see if there was any damage done to the tissue in my throat. And there wasn't. He then ordered a CT scan which I think is routine. The MRI was then ordered because the cyst was a unique shape and he wanted to know if he needed to surgically go through my throat to remove it. It also showed that it was cystic in nature. He was a new doctor and trying to be thorough. I think a more experienced doctor would have skipped out on the MRI. I picked a surgeon who is highly recommended and has lots of experience. I was leery of having a fresh new doc. working on my neck.

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  59. I initially went to my PCP after I found the lump in my neck. She ordered an MRI to find out what it was. About 3/4 of the way thru the MRI the pulled me out and gave me an injection of a contrast agent. I worried that I would react to it but didn't notice anything except a faint "taste" of metal in my mouth while he was injecting it. My doctor called me the next day and confirmed the diagnosis and referred me to an ENT specialist. I saw him a week later and he didn't feel the need to do any other tests since you can actually see it, feel it, and the MRI was pretty conclusive.

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  60. Lucky you. I just paid the bill for the other two tests and wish I didn't have to.

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  61. Susan, I just had my ct scan on 10/15. Insurance made me do an ultrasound first and that was how they initially diagnosed mine. The ENT said mine is far higher up than where they usually lie and that it is just to the left of the midline. Anyhow I was terrified of the contrast during the ct scan because when I got to the radiology dept. they took me back to a room to put in a hep lock (iv line) but didn't actually give me any liquid through it... then I realized that is how they would put the dye in. Anyway, I asked lots of questions during my panic state.. IT TURNED OUT TO BE NO BIG DEAL AT ALL. Don't be scared. They made me empty my bladder and put me up on the table. Slid me into the tube and adjusted the cameras or whatever they are. They took literally a 20 second scan and then warned me they were gonna inject the dye. I told the lady I was terrified... long and short of it, it feels like taking a stiff shot of whiskey hits your body for literally 15-20 seconds and then there is nothing (even if you're paranoid like me.. ha ha). Another 20 second scan and that's it! Voila best of luck to you. I don't have my surgery date yet but supposed to be this month. It took two years to get diagnosed (and a loss of 30 pounds). Hang in there everyone.

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  62. I had felt a tenderness & a bump about 3-4 years ago. Doc thought it might be a thyroid nodule. Ultrasound showed it to be a thyroglossal duct cyst. No one ever told me to take it out or anything. Well, it gets tender every now & then when I am sick, but gets well by itself. About a month ago, I had NOT been sick & it got swollen & tender. I kept waiting for it to go down. Finally about week 3 went to doc. He gave me antibiotics. I asked if I should allow the cyst to remain in me. He said he would rather the ENT tell me after the ENT looked & felt. So..ENT looked & felt & said we could re-ultrasound it & compare it. Well, the ultrasound showed it to have grown to like .9cm & wasn't JUST cystic in nature, but now complex w/ some solid parts to it. I want it out of me! Although, I don't want to go thru surgery. I am of course concerned that it could be malignent, which has been the scariest thing to me. After I finished the first round of antibiotics, the infection came back. I have 2 days of a new antibiotic left. It feels lots better. The ENT in our town does 3-4 of these excisions per year. I asked him about the Sistrunk procedure. He said he often likes to do simple removal & cartarize the hyoid bone to help prevent it from coming back. Has anyone heard of this? Anyway I have not had a CT scan yet or an MRI. I am going to get a second opinion in Oklahoma City on 11/24. This ENT has done hunderds of thyroglossal cyst removals at Children's Hospital & now is in private practice. I would kind of like to have a CT scan to see if anything else is going on in there, before surgery. Am very afraid of the CT scan affecting my heart rate. I am 41 & have mitral valve prolapse, which tends to cause a racing heart that won't stop. Have been hospitalized w/ it before. Anyway, has anyone heard anything about the simple removal & cartarizing the hyoid bone? Thanks! Susan

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  63. Susan I have supraventricular tachycardia (extremely fast heart rate) and I had zero reaction to the CT contrast. DO NOT WORRY. Mitral valve prolapse is extremely common. Just tell the technician --you'll have to fill out a questionnaire anyway before they'll do the scan asking about health conditions and allergies. As for the Sistrunk Procedure, they will remove the duct itself which is attached from the front above your thyroid gland and runs along the front of your neck up and under to the base of your tongue to an area called the foramen cecum. They remove the middle third of your hyoid bone because that is where the duct attaches at the top. (top of duct is at hyoid bone, bottom of duct is just above thyroid gland). If they don't do this procedure and only excise the cyst there is a HUGE rate of recurrence. However, with the Sistrunk Procedure there is a 80+% success rate with NO recurrence. So go with the formal procedure so you never have to do it again!! Cauterizing just means they use high powered heated instruments to sear things shut and reduce bleeding and swelling. As for cancer, there is only a 1 or 2% rate of cancer in thyroglossal duct cysts. It's luck of the draw.. my ENT said the last one he took out was in a 21 year old and it was cancerous but that it is so extremely rare she was truly an exception. The 'good news' is that if a cyst of this type is cancerous, the treatment is to remove it with the sistrunk procedure! Best wishes and hang in there. Ask lots of questions and do not be scared.

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  64. Hi all

    Susan my cyst sounds very similar to your only I had been having trouble with it for twenty years or so. Every time I fell ill it would swell up ,then antibiotics for a week or two until it went down. Finally I decided to sort it out and have the sistrunk procedure on october 2nd. Best thing I ever did one month later and I'm fully recovered no pain or discomfort just a tiny scar. IF I could post pictures i would show you.
    The tests I had before did not invole any dye just a ultrasound and FNA which was uncomfortable but not too bad. Fortunately all the tests came back ok.

    Anyway I wish you all speedy recoveries and don't worry its not too bad!

    jon

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  65. jon, send me a pic. and I'll post it. Just make sure it's not a huge file ;0) or indescent!

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  66. Lucy,

    I have a thryoglossal duct cyst as well. Everything in these posts has been very helpful. I was hoping to see a more recent picture of your incision. If you are so brave, could you post one? I know it is so vain of me, but that is my biggest concern...the scar. Thank you so much, Erin

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  67. I posted up a picture today. bummer. Must look at the bright side--no cancer, it's out, no nerve damage or vocal cord damage. good luck to you.

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  68. Just got a call from my doc. Surgery date is December 1. Thanks to everyone for everything!!

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  69. hi guys,

    thanks for this blog. i just had my sistrunk op on the 11th of november, so still at home recovereing. im taking antibiotics and pain killers but its not too bad and i can swallow with a little effort - still have my apetiete;) will be at home next week but then back to work. i will take my stiches out on thursday, dreading that!!
    good lck to all, i dont think it is too bad, but obviously not fun either

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  70. Hi, I'm Nikki. I've also been diagnosed with thyroglossal duct cyst. I had it surgically removed when I was a child but almost 20 years later it has returned. Even though i've already had the surgery i don't really remember much and I'm very scared now that I'm older. The doc is talking about removing my hyoid bone and that just sounds scary.
    Anyway I would appreciate if someone could recommend a great doc.
    Lucy, JOn, someone please respond. THanks so much, Nikki.
    P.S: I've had the lump since July and it was painless. In the last few days my neck has been in serious pain and now I can't even lift my head up, it feels so bad. I have an appointment in a few days but I just want to hear from someone who's had a painful cyst experience.

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  71. Hi Nikki,

    I think most surgeons (at least here in Europe)who specialse in ear-throat-nose will be good. The guy who did mine here in Madrid was a young doctor, but i think it just makes them more careful. Everything went fine. remember docs have years and years of training. good luck!

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  72. Hi All,
    My name is Steve and I, too, have a TDC. It was diagnosed in 1995.The reason I didn't take it out is because I am a professional singer. I have lived with this thing for a long long time now and taken antibiotics for it several times each year. Every doctor I have been to told me that they would have to remove the hyoid bone which holds the vocal muscles in place. The operation would definitely change my voice but no one knows to what degree. The speaking voice is different than the singing voice so I can not determine to what degree it will go unless any of you are singers. Or, perhaps, if there is a singer reading this who had the operation I would be most grateful to know what changes occurred. It is a scary thing to live with, as you all know. My career could be at stake, as well, and the infection is now returning stronger than before. Right now I am speaking to you with a lump under my chin the size of a plumb and taking, yet again, more antiobiotics. I just can't live like this anymore. But I am terrified of the operation for many reasons.
    I appreciate all your posts. If any of you would be interested in contacting me to share information I would welcome that. Jon, if you read this, it seems as though our history with this TDC is very similar. The recurrent infections (usually accompanying a cold or other upper respiratory ailment, sinus problem, etc) and the many years we have both endured this thing is very alike.
    My address, should any of you care to write, regarding doctors names, knowledge of possible effects for singers, etc: is (delete spaces) S p i n t o 1 0 r at a o l dot com. Is that ok to post??? I hope so. If not, tell me and I will delete it, or, I suppose it just won't print.
    Thank you for all your information. I thought I was so alone all these years but the more I investigate the more I see that many many people suffer from this.
    I hope to hear from you if you think you can shed some light and offer names or advice.
    Thank you,
    Steve

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  73. Hi everybody. My surgery date is a week and a half away and I am just wondering if anyone had any bad experiences from the anesthesia. I know I've shared with you all my fear of anesthesia. It's not the being under part I'm worried about, it's the coming to. Thoughts, comments, experiences?? Thanks to anyone willing to share :)

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  74. hi bunny oh,

    i had my op last week and was scared of the anestesia too. i was given my normal hypothyroid medicine with a bit of water on hte morning of the op and i guess that small amount of water made me wake up from being under coughing and sitting up. it wasnt a very nice way to wake up so i advice you to not have a drop of liquid 12 hours before the op. apart from that it wasnt bad, they take good cae of you. good luck!

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  75. I'am so afraid my daughter she 3 years old and she has to have surgery and I'am so afraid for her the pain she has to go through. I'am afraid of her choking and everything.

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  76. Steve and Nikki, I thought my doctor was amazing. He was highly recommended. He has lots of experience. I liked that he also specializes in cancer of those areas. A nurse mentioned that his sutures were amazing. I think the best thing to do is find a doctor that is experienced and doesn't have complaints on him/her. My initial doctor, I could tell was really new, not only by his age, but also by the fact that he wasn't really helpful in our visits. My questions were never answered. I decided to find a more experienced doctor in the same medical group. I quickly set up an appointment with him and was very, very pleased. He knows his stuff. And he answered all my questions. People were so willing to tell me what an amazing doctor he is and that was it for me. I chose him as my surgeon. I don't think it hurts to look around for a surgeon you like.

    Steve, I lost my voice for 2 weeks. It came back and I haven't noticed any damage. But, everyone is different and I don't know what it will be like for you. I sing quite often and I haven't noticed a change in my singing voice. My cyst went into my voice box as well. I don't think that removing it improved my singing either. That would have been nice. Good luck with that.

    As for the 3 year old........it seems that children recover quickly. I've read a couple blog posts about younger kids.....and nothing negative. But, I know how scary it is. I have kids myself and I get scared quite a bit with their ailments.

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  77. THANKS SO MUCH FOR WRITING ME BACK BUT SHE WENT FOR HER THYROID TEST TODAY AND HER THYROIDS WERE GOOD BUT SHE DOES HAVE THE THYROGLOSSAL CYST DUCT AND I GO SEE HER DOCTOR TO FIND OUT WHEN THE SURGERY GOING TO BE FOR MY 3YEAR OLD TO TALK ABOUT THE PROCEDURE FOR HER IM SO SCARED SHE ALREADY HAD HEART SURGERY AT 9 MONTHS BUTHEY DO HEAL FAST. I'M WORRIED ABOUT HER TRYING TO DRINK SOMETHING THE PAIN I DONT WANT HER TO CHOKE.

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  78. Hi Lucy,
    You are so kind to answer me, my concerns, my questions.
    I appreciate that and your blog about this topic. It seems there are so many of us who live with this, have children who live with it, scared, have questions. And I thought it was so odd before reading your posts.
    I did a lot of research and have been speaking to many doctors over the last couple of years. I found a surgeon in NYC who specializes in the thyroid area. I wrote him an email and he wrote me back immediately and told me to call him. He gave me a somewhat lengthy consultation over the phone. He is head surgeon of his department and I thought it was extremely rare to find this. His answers were also very logical and he told me that nowadays the partial removal of the hyoid bone is reconstructed so the muscles involving the elevation of the larynx remain mostly in tact and, like you said, he has not encountered damage or loss of the vocal mechanism. That is my biggest concern.
    HOWEVER, now my Insurance company is categorizing this procedure as a 'pre existing' condition! And they will only pay $5,000 per year. I expect that this operation will cost a lot more than that. I am curious to know if anyone else had this problem arise. Yes, these cysts are congenital and we are born with them, but, does that mean that even though they were diagnosed within the time of the policy they are still pre existing? My Insurance told me that all companies have that same clause and, at this point, any company I turn to for help WILL call it a pre existing condition becuase now...I know about it.
    If anyone knows anything to help me with costs, I would appreciate knowing.
    Thank you,
    Steven

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  79. Anonymous, I read a blog post of a mother whose young daughter had the cyst removed and she bounced back and was eating and drinking just fine. I'm not sure but it seems that it isn't as hard on young kids as it is us older folks. Maybe you could try finding the blog post and ask the mother about recovery.

    Steve, I was surprised at the cost of the surgery. It wasn't all that bad. I think the MRI and the CT scans were more expensive. While the MRI and CT scans were in the thousands, the actual surgery was less than a thousand. The anethesia was the same. The hospital bill was the biggest. I want to say....in the range of $5000. Can't remember exactly. But I was admitted into the hospital so the cost jumped up quite a bit. Usually the surgery is "same day." My insurance asks for a deductible payment and after that I pay 10% until I hit my out of pocket max ($1500 or $2000). And I didn't even hit that after all the bills were paid. And the nice thing is, the bill is broken up so I wasn't hit with this huge bill. It was $80 to the anethesiologist, $80 to the surgeon, etc. etc.

    I'm not sure what the medical costs are like in NYC, so my costs may not be comparable but...

    I'm wondering if your surgeon would give you an estimate. I guess the price would depend on how long you are in surgery.

    Sometimes you can get on a payment plan...there's always that option.

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  80. Oh Boy Lucy!
    I don't know where you are. I travel all over the world for my work so, I could do this anywhere, I suppose, and my Insurance is International but, obviously won't pay for what they consider to be 'pre existing' but...Just to give you an example of what NYC doctors charge - I went to an ENT specialist who deals with the singing voice and understands these cysts, as well. His bill, just for a consultation, examination, laryngal scope, was - $1,000. Considering the costs of NYC Hospitals and a top surgeon in a field of specialty I was imagining a bill of 20,000 or so. I will hope for the best. And thank you for your information. Once I see this surgeon when I am home in NY around Christmastime I will let you know his costs and advice. Perhaps there is even a way to avoid an operation. He did say there are other measures, but, removal is the best option.
    Till next time,
    Steven

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  81. boy am i glad i live in Europe where we have free (or tax paid) health care - my op and hospital stay cost me nothing! Viva españa!

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  82. Hi everybody,
    I am having my TDC removed with the sistrunk procedure on Dec 5th. Mine is at the base of the tongue. My DR said he will make an incision abve my adams apple and then another incision to open up the throat expsing the tongue. He this similar to some of you other who had this procedure?

    Thanks Robert

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  83. Sounds about the same except that my doctor never memntioned any other incisions besides the one on the outside. I assume there was alot more cutting since mine removed the entire duct which was attached to the base of my tongue, removed the part of the hyoid bone that the cyst was attatched to, and a very small part of my thyroid.

    lucy

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  84. Lucy, I wanted to post this to share with everyone who is interested. I hope it's ok with you. If not, I will gladly delete my post. Here is a video of the procedure.
    http://video.google.com/videoplay?docid=2501351089687556666&q=thyroglossal+cyst&hl=en#

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  85. Hi Linda
    I am really glad I came across your webpage. I had the SISTRUNKS procedure three days ago, with an overnight stay in hospital and a drain for the first 24 hours. The pain relief I am taking is very effective and I am only sore in the mornings when I wake up and the pain relief has worn off overnight. My main concern is the swelling above below and around the scar area. I have basically 'lost' my chin and the whole area is up like the throat of a bullfrog, all profile gone. But I see from your first photo that you too 'lost' your chin and got it back - your second photo looks fantastic! So many thanks for the post operative information on your page, I have learned more from that than from the information abd literature given to me by the hospital.

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  86. Agh! I'm having a minor freak out. My surgery is tomorrow! I feel like today I need to have my "last supper".. I find it an excuse to eat all day long :) Wish me luck guys. Lucy thanks for everything!!

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  87. Bunny O, hang in there. I hope everything goes well. Let us know. Lucy

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  88. Hi guys!! I am actually in the hospital right now on a loaner laptop. Surgery went really well. Last thing I remember is someone telling me they were gonna put "squishy boots" on me. Then I woke up asking the nurse "did I just wake up?" It was funny!! Honestly it feels like a strong case of strep throat. I already ate some angel food cake and ice cream and LUCY I took your advice and had LIQUID tylenol. That's really all I've needed. The bandage around my neck is really tight.. no drain. They wrapped the bandage around my entire neck so the more my neck swells, the tighter it's feeling but it's honestly no big deal. You guys have been an amazing help and so supportive!! Thanks again Lucy & everyone for everything.

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  89. All you've needed is liquid tylenol?!.. You Lucky Duck. And you didn't have a drain! That's awesome. I'm glad things went well and I hope that recovery continues to go smoothly. Thanks for letting us know how things went.

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  90. Hey guys, just a quick note that if you click on my blog I put some photos up. Strangest thing, the team told me that when they cut into my neck I did not bleed. They said they had to do a super deep neck dissection and pretty darn far to the left down into my neck. I have zero bruising. None. I've swelled some but that's it. And Steve & Lucy I've also lost my voice but it's due to the tube they used during surgery. They said it will be back when the inflamation goes down in my windpipe. Anyway, hope you're all doing well :)

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  91. Just checked out BunnyO's pictures. glad to know that there are those whose procedure didn't leave them bruised like mine.

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  92. dang nguyen from okc,ok need help!!!!!!!! a doctor told me i need a sistrunk precedure done, but the hospital charge is asking for $11,275 up front. i asked them about payment plans but i couldnt do that.does that sound crazy? i dont have health insurance. so what should i do? go to the emergency room? i feel lost

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  95. dang nguyen,thanks for your help, what i really need is to get the surgery done immediatly, i dont think i have time to wait 2weeks for another appointment, im just so worried about it, i feel i cant continue living my life until i take care of this situation. is it right to deny me surgery because i cant pay it full, is that illegal?

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  96. Ok guys looking for some help. I'm six days post-op and I've got a little chest discomfort going on. Before I run to the doc, can anyone tell me if this is something you experienced? It's not super painful, just annoying and feels very strange. The feeling is not associated to any coughing or shortness of breath but for some reason it's kind of scaring me. Advice?

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  97. I actually did have pain when I breathed in. I thought it might be a blood clot. It lasted for a couple of weeks. I did call my doctor and he thought it was more muscular and probably caused by the coughing spells I had. It did finally go away. But I would call your doctor and go see him/her if he/her tells you to come in. lucy

    Dang, I'm not sure about the legal side of things. Hope you can work things out. Good luck.

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  98. I too had a TDC removed by Sistrunk procedure in UK in April 09 followed by a total Thyroidectomy in May as it contained papillary carcinoma. In August received Radioiodine treatment. Have read alot of information on the internet about TDC but good to find other comments from people who have also been through this.

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  99. I have found alot of websites with people who have thyroid cancer but this is the only one I have found with people who have been diagnosed with thyroglossal cysts. Is there anyone else out there who have been told that they had papillary carcinoma in thyroglossal cyst?

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  100. I am 15 days post op now. I still have my steri-strips bandage (although I'm ready to rip it off) but everything is good. I'm still a little tired because my sleep is messed up but I returned to work yesterday after a week and a half off. The only pain I have is from healing and it's about a 2 at its worst on the pain scale. I received the pathology results and there is no cancer and no abnormalities. I DID want to share that when they opened my neck, there were two large lymph nodes being forced forward because the duct ran behind them and was so taught it pushed them toward the front of my neck. The duct was wrapped intricately between my carotid and my jugular which the surgeon said is why I was so lightheaded and had such bad palpitations all the time. They thought the enlarged nodes were cysts at first glance but quickly realized what was going on and said it is very very good that I had the surgery done. Point being.. if you are diagnosed, HAVE THE SURGERY. It is really no big deal as I never needed anything more than tylenol and I feel worlds and worlds better now.

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  101. I haven't been so nervous about this surgery until recently. I have mine on the 23rd of December. I did a lot of searching throughout hearing about having this thing show up and this was the only place that anyone talked about recovery. I want to thank you for giving me an idea of what to expect and I hope everyone here is recovering or has recovered just fine. I'm a 24 year old male and the Navy is doing my surgery.

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  102. Spencer best of luck to you. Please post after your surgery and let us know how you are. You will do fantastic and be so glad. Do not be scared. It is really no big deal and recovery is not bad at all. I'll keep you in my thoughts tomorrow!

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  103. Hi everyone and thankyou for all the information which has been really comforting. Unless you have had the operation people find it hard to understand.
    I hope all of you have a speedy recovery.
    I had the cystrunk procedure done 2 weeks ago after descovering it about 3 months ago. I thought it was better to get it done as it was causeing me discomfort when I swollowed or talked alot and I had anxiety.
    It was not an easy op to have. I was feeling very anxious which didn't help. After surgery I had swelling and difficulty swollowing. Once the local anesthetic wore off I felt twinges and pain and tightness in the muscles of the neck which made movements difficult. I lost my voice and had horesness for about one week. During this second week I feel like I am stuck with neck stiffness, twinges of pain on left side of neck, lumps when swallowing, and some anxiety about it. I thought I would get progressivly better but it's like this everyday now. I hope next week will be better. My doctor told me that it's all normal and within 3 months when I go back to see him I shouldn't be able to feel anything. What were your symptoms at 2 weeks post op? And what was the next week like?

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  104. My experience in recovery sounds similar to yours. I too had swelling and difficulty swallowing. I lost my voice and hoarseness for 1-2 weeks. I was in pain for a few weeks and it gradually got better. I'd say it was a couple of months until I was feeling 95% better. Now it's just some soreness in the area occasionally.

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  105. I am now 4 weeks post op and wanted to share some experiences/complaints in case anyone else is feeling similar.

    Surgery itself went well (or so my Dr said) and he was shocked to find that my cyst was the size of a baseball and fingered from one side of my neck to the other. This actually did not surprise me at all...I could FEEL it! Anyway, there was a lot of swelling and for that reason I was off work for 3 weeks. I had a very stiff neck - impossible to turn my head from side to side or raise my chin to look up. It was VERY hard to swallow for the first week and gradually got a little better over the next 2 weeks. I had no voice for the first 5 days and then was hoarse for the first couple weeks but now I get hoarse only if I talk too much (LOL). I grew very fond of my liquid Vicodin and was dedicated to it for the first 2 1/2 weeks.

    Now 4 weeks post op, swelling is mostly gone although the incision area is hard and a little raised, I can pretty much turn my head from side to side although not as much to my right side, but I still can't move my chin UP, and I feel a fullness/tightness in my neck/throat which is quite uncomfortable. I also feel something moving around in my neck at about the same location of my incision. I'm also not able to make high-pitched sounds -- like a high pitched 'EEEEEE', or singing high. It just sounds breathy and like a whisper. (I guess I better re-think that professional singing career. LOL)

    I saw my dr yesterday for a follow up and he says that the tightness is from the scarring and told me to massage the incision area to break up the scar tissue. He said it should get better with time but gave me no guarantees. As for the voice issues, he feels there may have been some nerve damage from the extensive stretching and pulling they had to do to remove the cyst. When I go back in a month if there isn't any progress in this area, he is going to look at my vocal chords to see if there is damage.

    The "thing" I feel moving in my neck he said could be the 2 ends of the hyoid bone which were left after removing the central portion. Dr said given time that maybe scar tissue would help anchor them down a little more but only time will tell. Has anyone else experienced this feeling? I actually wondered if they left something in my neck from the surgery....it also feels like my tongue is rolling up in my throat. Very uncomfortable and affects my talking. If I try to sleep on my side it moves to the side and I begin to choke a little. Very strange.

    Basically he told me that after 6 weeks you are 75% healed and the last 25% takes 6 months to a year. So I guess I still have some time to hope for improvement.

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  106. wow, I didnt' have nearly as many issues post op. It sounds like to me that your body is adjusting to not having the cyst to lean on anymore. Anyone else out there with a similar experience or advice for this type to post op experience?

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  107. Would just like to say thank you for posting about your experiance, I am due to have my thyroglossal cyst removed on 6th jan, I havn't eaten solid foods since finding the cyst in september, just like you I also found mine whilst looking through photographs. I also lost partial use of my vocal chords after being examined so many times by the doctors and numerous cameras used during diagnosis. So glad to hear you are on the road to a full recovery. and thank you again for sharing your post. after being told so little about this procedure I now know what to expect post op.

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  108. Hi

    Just thought I would put a little update on how I am doing, I had the op a little over 3 months ago and I now completly recovered with no lasting effects and feel great just a tiny scar that is hardly noticable. I'm so glad I had it done and just wish i'd done it years ago.
    So anyone thats in two minds about the op ,please don't worry and just go for it !!

    Take care everyone and god bless

    jon

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  109. I love that you have created this forum for people with this unusual operation to share our experiences. I am having the sistrunk procedure tomorrow morning and am starting to get nervous. I have learned that I should definitely request liquid pain medication, the strongest they'll give me!!! I bought some pureed soups and yoghurt drinks to eat afterwards. I also have about 8 thyroid nodules that I decided not to have removed at the same time as this surgery, I hope I don't regret it. I am leery about removing part of my thyroid. The TDC started bothering me a few years ago after I got sick or had to do a lot of public speaking at one time. I will be relieved to not have to worry about it any more. I'm nervous about recovering around the house with an active 4 year old boy. I'll let you know how it goes.

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  110. oh wow, 8 nodules? Sounds unusual. Hope it's not anything serious. I'm glad you were able to find this useful. At least for me the liquid pain killer worked best since I ended up being a choker. However, it was hard to take, very yucky. Maybe half dose of liquid and then pill form for later in the week. Good luck with recovery and let us know how you do.

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  111. Hi, I just found out I have a thyroglossal cyst. The ENT wants to remove it. Its not infected and is small he said, but he wants to get it out before any complications occur. I really don't want to get this procedure done. I am 21 years old, and the thought of surgery is so scarey to me. I also do not want a horrible scar the rest of my life. He said I will need to stay overnight with a drain in and it will be taken out the next day. Does this drain hurt? Does it hurt when they take it out? And when they stitch you up after are you given any drugs to not feel this? Any info would really be great

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  112. Really? My doc. said that it would be a same day surgery and if a drain is needed than you may or may not (if I chose) stay overnight. I ended up getting the drain since the cyst went deeper into tissue than first expected. I would think if your cyst is small that you wouldn't need a drain and could go home the same day. Personally I HATED the drain and it left an extra scar. It was annoying but I had complications and you hopefully will not. I would double check with your doctor and discuss it more as an option instead of a must. Besides, the extra night does increase the bill. Good

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  113. I just got back from the hospital. I ended up having to stay over night and because I had a lot of scarring from past times the TDC had swollen up, it was a much longer surgery than the doctor had originally planned. He said the cyst was lodged in my thryoid and he had to disentangle it from the thyroid. I feel pretty good now, since I just keep taking painkillers. He had to put a drain in it too. I didn't eat anything for the first day but today I ate jello, mashed banana, and cottage cheese.

    If you get it done sooner rather than later, Alexis, it will an easier procedure. It's something that will never go away and having gotten 5 infections or so, it is really bad. You don't want to have to go through that and then have to have surgery anyway.

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  114. Hey guys. I just had my surgery on the 17th of december. Half of the scar has sealed up nice, but the other half is puffed up and has fluid in it. It just popped and a yellowish fluid drained out. Has anyone else experienced this?

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  115. Hi everyone. I got the drain taken out yesterday and although it felt kind of weird and gross, it was not really painful. I am glad to have it out of me and to have more freedom of movement and not worry that my son will accidentally pull on it. Now I just have to get my stiches out, piece of cake, in a few days. I am mostly off of the codeine and tylenol. My whole body kind of aches but the incision and my neck don't hurt very much.

    I would say the worst part of this whole experience was waiting the morning before the surgery. I was extremely nervous. But after that, I have no memory of being put under or waking up, it was very gradual. Then recovery room, I had a bad back ache, that was the worst pain. I couldn't imagine going home even though I was in the outpatient clinic, too drugged and hard to swallow. I was throwing up and shivering uncontrollably from the anesthetic. I had to move across the street in an ambulance, which made me throw up more. Then I stayed over night in the hospital, sleeping well and comfortable except for a bad headache and sometimes back ache. Once the morning came I was able to eat and go home.

    Being hospitalized and having surgery is so traumatic on your system, but overall I never felt bad pain which was my biggest fear. It's mostly just a lot of unpleasantness. All the nurses and my doctor were great, I really appreciate how professional and caring everyone was at Kaiser. Thanks to my union health benefits, I didn't pay a dime! It would have been horrible to have to worry about money while deciding whether or not to stay overnight.

    Chris, it sounds like it's infected and you should call your doctor.

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  116. Wow, Kristin I'm glad the pain hasn't been too bad. Lucky for you! I think my problem was that I chocked that first night and made things swell up in there. Thanks for letting us know how things went.

    Chris it does sound like an infection.

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  117. Hi guys,

    i had the op in november here in madrid and i am putting rosehip oil on the scar to make it disappear or appear less. so far it looks great and i would recommend to all using this oil on the scar once it is sealed up.
    jose

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  118. Kristin- it sounds like you went through everything I was afraid would happen to me. I hated the idea of throwing up and luckily for me I never did. I shook for about five minutes but that's it. I remember telling the nurse anesthetist that whatever he could do to help me NOT throw up upon waking I would appreciate. Before my op, I asked my ENT and his clinical assistant about the getting sick part with anesthesia.. they said that for some reason people who tend to suffer motion sickness throw up after anesthesia. Those who don't suffer motion sickness can breeze right through it in many cases. Sorry to hear you had a rough time but I'm happy for you that it's all behind you now. Hope you recover fast!

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  119. I had mine removed on Friday and am feeling pretty well. I had only 1 incision, no drain tube. I also was nauseated from the anesthesia, but that has happened before with surgery. It takes me a while to get it out of my system. I was amazed how little pain I had...I stopped the pain meds less than 48 hours later. For me the worst part, by far, was the compression bandage since I'm claustrophobic. I had read on this blog to use ice packs, and it did help. I just kept thinking of the horrible conditions in Haiti right now and tried to keep my minor discomfort in perspective.
    Thanks for creating this blog..it was very helpful!

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  120. Well, just when I thought the worst was behind me, when I went in to have my stiches removed a few days ago my surgeon gave me some bad news. Carcinoma was found in my cyst by the lab after my surgery. Apparently this is extremely rare, one of 200 or so reported cases. Since I already have a bunch of nodules in my thyroid, it's almost certain that the doctors will want to take out my thyroid to make sure it didn't spread. Which will mean another surgery on my neck, and another scar 2 inches below the first. Incredible.

    I am actually still trying to process this news. What are the odds of first having this weird cyst? And then, being in the less than 1% of people who have carcinoma in the cyst? I remember when I was planning the surgery my doctor said that another reason to have it is that there is a small risk of the cyst having cancer in it or becoming cancerous later. Now I'm even more glad I made the decision to have this surgery. But another one in 3 months? Ugh. At least I won't have fear of the unknown. And if there's even a small risk of developing any kind of cancer in my thyroid, I have to do it. I'll let you all know what happens after my endocrinologist appointment tomorrow!

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  121. I am so, so sorry to hear that. I was so scared of the same thing happening even though there's a small chance of it occurring. I'm surprised they'll have you wait 3 months to remove the rest. My uncle just got diagnosed with Leukemia and started Chemo last week. Advancements in cancer treatment have made it possible for so many to be cured. I'm hoping for the best for both of you. And not to play down what you are going through, but my neighbor who had thryoid cancer and was cured said that people with thyroid cancer have a good outlook; it's very curable. Keep us updated and let us know what you've learned.

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  122. Chris Murray 1/24/10January 23, 2010 at 10:14 AM

    Thank you so much for your blog,it helped getting a point of view from someone who had gone through this operation. The way it was mapped out was 100% correct. Thankyou Thankyou Thankyou keep fighting the good fight

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  123. Dear Kristen

    I too had papillary carcinoma in the thyroglossal cyst which was removed last April. I had a full thyroidectomy in May followed by Radioiodine treatment in August 2009. No carcinoma was found in the thyroid. I am doing very well apart from the tightness in my throat which I am told will get better.

    Elaine X

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  124. Susan said Jan 25/10

    I have surgery Feb 2. This blog has been really helpful to me. I think the worst thing is what will I feel like when I wake up. 3 years ago I had surgery under general anesthesia and I became conscious during the surgery. I did not feel any pain, but I could hear people talking. I remember that I tried to breath and I could not get any air to my lungs. I was calm but I could not breath. Then I heard the someone say something like Oh she is ....... I can't remember and went unconcious again. So bottom line is that I'm afraid that I will become concious again during surgery. Anyone heard of this before? I have my pre-op on Jan 28 and will mention it then.

    Kristen, so sorry to hear about the carcinoma.

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  125. Susan, that's crazy! Sounds like the anesthesiologist(sp?) wasn't paying attention. Hopefully that was it and nothing else. No wonder you're concerned. I was a nervous wreck before surgery and from the sounds of it, that's normal. Hope that everything goes well.

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  126. Well, I talked to my endocrinologist and decided to first get another ultrasound and then go from there. It looks like I can monitor my thyroid and see if any nodules grow or change, since I already had 3 nodules biopsied and they were OK. I still might need surgery, but right now I am going to watch and wait and see. It is true that any thyroid cancer is very non agressive. Thanks for your support everyone.

    It's been a few days now that I've been back at work- I went back after 2 weeks- the incision is healing wonderfully and I'm eating fine but my voice is still not strong and I can't talk for long or it hurts. So I am taking it slow. Everyone says I look good.

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  127. Lucy, thanks for sharing. I found your website while researching the Sistrunk Procedure. I just found my cyst recently and had an ultrasound. Mine is coming out in a couple of weeks, and though it is not as complicated as your case, you helped me know what to expect. Best of luck! Anna

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  128. I had my surgery on February 5th. I am still swollen, but I am back to work today. The first day was tough, however, every day has been better since. For me, the pain meds were worse than the pain. Being busy and active has been the best thing for recovery. This blog was one of the best sources of information about this surgery . My one must for this surgery is to find the right/best doctor for you. Be a consumer, advocate for yourself and your well being.

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  129. Well said thank you. Good for you for staying busy and active. I really struggled those first few days. And thanks for visiting and leaving a comment.

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  130. thanks for sharing. i can not imagine how my 3 years old daughter can pass that kind of surgery. she have a thyroglossus cyst too in her neck. its about 15mm. may i ask you a question? when the first time u realize that u have a cyst on your neck? how old are u at that time? thanks

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  131. My neck visually started bothering me about a year ago. I didn't like the way my neck was looking but I didn't realize I had a cyst in there. I did notice some weird clicking noises when I swallowed sometimes but didn't make a connection then until in July when I choked on a chip and it caused the cyst area to swell up. I then had discomfort swallowing and I noticed the lump on the outside. I'm much older than 3 years old. But, I think kids recover quickly. I read on someone else's blog that her daughter had the same cyst removed. She seemed to do great. Good Luck.

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  132. Hi Lucy,

    Just want to thank you so much for posting all this information. Yesterday I was discharged from hospital after having a sistrunk procedure. I am in so much pain, and didn't know why I had so much saliva in my mouth. I just wanted to know that it was normal so I looked it up on google. I found this site, and now I guess I can relax. I don't have a drain, but just spitting a lot. (Sorry, thats grose I know). The first day was fine because I was so high on drugs, now that it has worn off, it is hard to find a comfortable position. Lying down and sitting up is as equally as uncomfortable. I'm such an active person, I can't wait for the pain and feeling of not being able to do anything to go. For anyone worrying about the procedure, I think it is a pretty amazing outcome considering what they had to do. Even though I'm in a bit of pain, it was worth it! Can't eat anything but liquids. I'm living on soup, stewed fruit, yoghurt, sucking ice feels nice. Definitely get a good ice pack. I got one from hospital which allows you to tie it to your head. Yes, I look like a dork...but it eases the pain! Well, thanks again for all the information, very helpful!

    Jess

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  133. Well I am also very glad to have found this site. It has been very insiteful. I was not sure what to expect after the surgery so this site has been great in preparing me for what's to come. My surgery is scheduled for March 17th and I must admit that I am getting a little scared about going under the knife. I have had surgery before but it was on my leg. That just seems a lot safer to cut on...cutting on my neck just creeps me out! Well thanks again for starting this site. It has been great reading everyone's comments.

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  134. Jess, sounds like you and I had similar recovery experiences. Not fun. But it does get better with time.
    Dixie, good luck with surgery.
    And thanks for leaving a comment:0)

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  135. Hi Lucy!

    Wow, so amazed the pain has really subsided today and its only day 4. I haven't taken any pain killers. Just wondering what the scar is like for you? Where they made the incision, it feels bubbly and quite hard, but hardly painful to touch. I'm wondering if the scar is going to be all bubbly looking? I haven't had any bruising at all and the stitches are dissolvable. Is your scar that noticeable to someone who isn't looking up close?

    Also, I went for a walk today. After I came back I felt so dizzy. Not sure why, did you experience dizziness? Well, thank you so much again...really helpful! Also, for Dixie...don't worry about going under the knife. I tend to panic a lot, and it was my first surgery..so super nervous. Over and done with in no time at all. Everyone on here is going to be different, but if you take the pain killers, you shouldn't be too bad. All the best for the operation.

    Jess

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  136. I don't remember if I felt dizzy. And I don't know what you mean by bubbly. I don't think so. My scar is noticeable to me and anyone that I point it out to but not really to anyone else. I'm hoping that over the years it will fade. There is a dimple where the drain was put in that I don't like. But, what can I do?

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  137. Hi Lucy, thanks for this blog. It really prepared me for what to expect.

    I just had my TDC surgery done March 10 and it went much better than what I thought it would be. Today is day 2 and I still have a little pain when swallowing, but it's do-able. I find that sucking on IcePops helps the soreness tremendously and it seems to be bringing the swelling down quickly.

    I also get nauseous after anesthesia, and this was my greatest fear going into this. But I had a wonderful anesthesiologist who sat and discussed everything with me beforehand. She said she would put some anti-nausea drug in with the anesthesia, as well as some Pepcid AC which would help with the stomach contractions, (which occur even though the stomach has been empty, it still produces acid), which can cause the nausea. Whatever she did, it worked great; I wasn't nauseated at all when I woke up.

    I also had the drain and stayed overnight. My ENT put the drain in just at the end of the incision, so I don't have an additional opening.

    Did not need any heavy duty pain meds, Tylenol was enough to take the edge off, so I left the hospital clear-headed and alert the next morning.

    Just want to say thanks to everyone who posted on Linda's blog. It was the only info I could find on the internet that was useful about thyroglossal duct cyst surgery.
    Nancy

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  138. thanks for your note! glad things went well.

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  139. Hi Lucy,

    Sorry, me again! I woke up this morning and its day 5 of recovery. I feel like I have a piece of something stuck in my throat around where the incision was made. I notice it when I swallow. Kinda feels like a chunk of skin flap or something. I'm a bit worried. Its very annoying and I feel like I need to clear my throat, but whenever I do, nothing comes up. Did you have this feeling by any chance? I wonder what it is? Well, I just thought I would ask...thanks xox

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  140. No I never felt that. Although even now my swallowing response is slow and often things go down before I want them to causing me to clear my throat.

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  141. Thanks everyone for sharing your experiences about your TDC. I felt a knot in my neck last June 09 and went to my family doctor. He sent me to an ENT. Couldn't get in to see the doctor he had recommmended so I went to a differnt ENT. Later, I learned he actually taught the Sistruck procedure at the local university but there was something about him tha made me feel uncomfortable about his ability.
    I decided to WAIT for an appointment with the first ENT. This doctor is very young but my family doctor says he is very qualified and my confidence in his thoroughness causes me to feel better. My surgery is scheduled for this Friday, March 26th.
    I've been very concerned about doing this surgery because it doesn't really bother me. I do feel some stiffness in the left side of my neck where the cyst is but, I'm not sure if that's from the cyst or my vivid imagination running wild.

    I have felt some dizziness and nausea lately but hadn't thought it was anything to do with the cyst. Hmmm. interesting. I've notice several of you have had the same problem.

    I'll give an update after my surgery.

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  142. Here is a question that has not been asked yet. Have any of you that have had the surgery noticed any changes in your metabolism? I've always been thin, & wonder if it's because of this extra thyroid tissue in my thyroglossal duct cyst. If I have it removed, will it change my metabolism even if I have my normal thyroid?

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  143. I didn't notice any changes in my metabolism. I did notice lightheartedness and dizziness. Also my menstruation started to become irregular but soon after surgery that was resolved as well.

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  144. I am diagnosed as having a TDC and the ENT doctor recommended the sistrunk operation.I am very glad to read all your experiences and advice. This was truly a rewarding experience.I feel comfortable and reassured by your postings.Thank you and God bless

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  145. I'm planning on having the Sistrunk procedure at UCLA and wondered if anyone can comment on their experience with UCLA head and neck surgeons.

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  146. Well I had my sistrunk procedure done on the 17th of March. My cyst was about the size of a golf ball. It went a lot better than I expected. I was not that sore after surgery. I was talking with no problems right after surgery. I did have pain swallowing for the first night but it got eaiser after that. I would say it was more of a deep tissue soreness than pain after that first night. I did notice that I was more sore in the mornings so that is when I planned to take my pain meds. As of today I don't really have any pain or soreness at all. I also did not have any bruising at all which was great! My incision also looks great and it still discolored but I am impressed with how it looks. He put the drain tube at the end of the incision so I would only have one scar. I did suggest that to him after reading that tip in this forum...thanks for the tip! The drain came out on the third day. The only thing I am disappointed with is how the area above the scar has swollen up. It didn't even start swelling until 4 days after the surgery. The Doctor said that was normal. Hopefully, it will go back down within the next week. Thanks for everyone's comments. They were so helpful and gave me a little insite as to what to expect. Kudos to you Lucy for sarting this forum.

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  147. Thanks Dixie. I'm glad things worked out for you.

    As for any info. about UCLA's services, I don't know and haven't heard anything about it. I hope it's not students working on you though. That would make me very nervous.

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  148. I too am glad for this site. It helped me prepare for my surgery which took place on March 25 which was on an out-patient basis. My cyst was about a 1 1/4" oval shape.

    I arrived at the facility at 7:30 a.m. I filled out the usual paperwork, then was escorted to a prep area where I changed into the lovely hospital gown. I was then hooked up to a monitor and was started on the IV fluid. The anesthesiologist and OR nurse came in to talk with me.

    Around 8:30 a.m. I was wheeled into the surgery room; the anesthesia was started and the next thing I knew I heard them calling my name and I opened my eyes to find I was in the recovery room.

    I was given some liquid tylenol with codeine; changed my clothes and at 10:15 a.m. I was being wheelchaired to my car and a family member drove me home.

    The rest of the day was spent just resting and watching TV. I drank water and juice throughout the day and wasn't hungry until dinner at which time I had some canned fruit. Since then I've eaten whatever I've wanted and have had no problems swallowing or talking.

    I have steri-strips over the incision site, and the only discomfort I feel is when I try to lift my chin/head upward and the skin pulls.
    I've had no pain and haven't taken any pain medication since leaving the surgery center. There's no bruising and just slight swelling above the incision site.

    I was able to shower the day after surgery.

    This is day 4 post surgery and everything has gone much better than I imagined. I felt so good that I went back to work the day after the surgery. The only indication that I had the surgery are the steri-strips on my neck.

    My stitches will be removed in 3 days.

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  149. Wow, sounds like things went really well!

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  150. Lucy:

    Thank you for posting this blod. Unfortunately, I'm one of those rare cases who had complications after the surgery. Had it last Fridat, spent the night in the hospital with a drain, had the drain removed the next day and went home. Then the swelling started....boy...it looked like I had a orange stuck in my neck. By Tuesday, could not swallow water without choking, so went to the emergency room. They sent me to my surgeon's hospital where he came in the next morning, opened up the incision again, drained me as much as he could, then put a drain back in. I've had it in since. I am having it removed tomorrow - thank goodness! I am concerned with the increasing horseness to my voice...did anyone experience that? I sounded better right after the surgery then I do now - Thank again - Laura

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  151. I lost my voice for a couple of weeks myself. As soon as I was able to yell at my kids again, I knew I was all better;0). I think it should just be a matter of time. Good luck.

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  152. Have choking problems when I try to sleep. Up reading your posts. Great help

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  153. GREAT SITE! I am 41 and had a TGDC removed when I was 22. I was graduating college and kept losing my voice and difficulty swallowing. I had a cyst the size of a golf ball removed - drain - entire day in hospitasl. Had residual isues for year with infections in the area but subsided. 3 years ago - (15 year later mind you) it is BACK. Apparently surgeon #1 did not get the entire tract and occassionally get infected. 3 drs do not want to operate as the scarring in my neck makes it extremely difficult to see the remnants and get it all. I am sticking with antibiotics the 2-3 times a year it acts up. My recovery at the time was at least 4 weeks.
    As a cruel twist of fate, my 6 year old has one too! Although there is no heredirary/genetic component his showed at age 3 and has been dormant for 3 year. Got infected after a recent cold and goes in 7/8 for removal. Let's hope he has better success that I had! Dr has advised better now than later as kids seem to bounce right back as adults take quite a bit longer to heal.
    Just wanted to add my two cents to one of the only sites out there with GOOD information on this problem!

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  154. I also had a choking feeling when I was sleeping. When I told the doctor this, he got me in emergency straight away. This was 2 weeks post op. Everything was cleared. It is important that if you have a concern like this, that you see your doctor as it could be a hematoma developing that requires drainage. When he cleared me, he mentioned that if my voice becomes hoarse to contact him immediately. Really sorry that you had to go back in to be opened up! Must have been traumatic! Hopefully everything will be ok now. Don't be afraid to contact the doctor though...ever! I'm nearly a month post op and I feel great. I can go running again and my scar is healing well. I rub it three times a day with Bio Oil. The yucky swelling under my neck has gone down and I don't feel like I have a double chin anymore..hehe. I can still feel the internal stiches, but apparently if takes a while for them to disolve. Its nice to come back here to read other people's posts so you feel normal! Thanks again Lucy!

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  155. Thanks for leaving comments everyone! It helps those who are needing more info. on the subject and are needing a more rounded view of it.

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  156. After being incredibly scared about the whole procedure, i'm talking mega stressed, I'm petrified of hospitals. The operation and recovery were nowhere near as bad as I thought they was going to be! I had the operation done on the 18th of March and a few weeks on I am pleased to say that there is little to report. I had little to no pain after the operation (which was a one day in and out job) the worst pain I had was when the nurse pulled the drain out. My swelling only started to go down a few days ago but I am looking back to normal now. So please, you guys who are about to have this operation, there is a very high chance that it will be pain free and you can enjoy some time off work!

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  157. Quick question - Had the surgery over two weeks ago. When does the swelling go down? I look like I have a triple chin. Thanks and this is a great site for information to share.

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  158. My operation was on the 18th of March and the swelling has only just gone this week.

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  159. I was swollen for a couple of weeks. But I wasn't as swollen as the first few days at 2 weeks. You should probably call the doctor.

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  160. Lucy - thank you for this site - I have read and reread this site and am ready for my surgery on the 26th. Thanks to everyone who shared as it always helps to hear others stories.
    Sheila

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  161. Thanks for posting this blog! I am having surgery april 28th , After speaking with my surgeon I feel comfortable with surgery my only concern is everyone on this site talks about thier drainage bag overnite...my surgeon said i would not have a drainage at all. So i'm kinda worried about that! Has anyone not had a drainage overnite or one period? Thanks Carol

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  162. Sheila are you having a drainage bag put in? Carol

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  163. Hi, my son who is 3yrs of age has been diagnosed with Thyrogossal duct cyst. At present it is infected and he is on anti bio. I'm waiting for an appointment to get an ultra sound done. From reading your comment I would be favourable in getting the sistruck procedure done in order to reduce further risks.
    Has anyone had this procedure done on young children? your comments would be greatly appreciated.
    Thanks
    Aine

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  164. thanks for your personal experience.

    my 4 year old is having the surgery
    on wednesday so i wanted some info about
    how it is after the surgery. i don't
    think her surgery will be as extensive
    as yours. it's just hard since it's a child
    who may not be able to really tell you
    how much pain she is in.

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  165. HI.THIS SITE IS REALLY HELPFUL,JUST LEARNED I TO HAVE A CYST.HAVEN'T GOTTEN A DATE, WILL BE SOMETIME IN JUNE.I FOUND OUT WHEN I GOT IN A WRECK AND DID MRI.I AM SOOOO GLAD I FOUND THIS SITE,I WRITE LATER AFTER I FIND OUT WHEN MINE WILL BE THANKS AGAIN!!!!!!!!!!!!

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  166. I am now 6 days past surgery. I didn't vomit or shake upon waking up - which is always awful. I had a drain put in overnight but taken out in the am and I didn't even feel it come out. I think the worst thing is the sore throat - difficult to swallow anything but especially saliva. The pain is rather bad the first day or two but like everyone has said - if you keep up on your meds - its okay. My throat is still very tight but I know that is normal and very sore in the am. The great things I learned here - have the drain put into the incision, get liquid antibiotics and pain meds and you will be fine. Also - after surgery - get up and get moving a little - get outside in fresh air and sunshine - its great for health. Sheila

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  167. I am really grateful for this site also. I had the sistrunk procedure 6 days ago and I stayed overnight with a drain also. I have had no problems with eating or drinking really. I am scheduled to get my stitches out in two days but have been kind of panicking because I have a lump under where my incision is and it is pretty hard. That is really my main concern at the moment. I hope that it is normal and will go down quickly!
    Thanks for all the great info, it is nice to have people to relate to. Being 38 at the time of diagnosis, most people I have talked to have no idea what it is. Even some of the nurses seemed to have not heard of the procedure. Really assuring I can tell you!
    Heather

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  168. Hi everyone I am 5 months post op. I am wondering if anyone has a lump feeling that goes up and down occasionally. It is worse when I have been talking a lot. I can feel it when I swallow. It's not always there but I feel anxxious about it. Doctor says it can take 6 months for any sensation to go. Sometimes when I put my head on the pillow to sleep I feel it dragging to the side. I get it almost every day lately. I feel well otherwise but this is annoying so will call doctor again tomoz. He keeps telling me it is normal. Does anyone else experience this? Thanks J

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  169. This site is great! I am a speech-language pathology student currently going through the same drama. You would think there would be information out there as to speech/swallowing changes after a sistrunk. Let me tell you - the literature is extremely limited & I have access to much of it owing to my area of study. I intend to do a small research paper on the subject, to help people who are facing this surgery get access to knowledge on all the possible complications, not just the "big" ones (i.e. laryngeal nerve paralysis).
    Keep up the great work, Lucy. Thanks!

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  170. I did not have a lump feeling that goes up and down and dragging to the side. If it were me I would get an ultrasound of it asap. It sort of sounds like something was left behind. Let us know what you decide to do!

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  171. Greetings. I just had my TDC removed today (Sistrunk operation) and happen to stumble upon this blog. I'm 40 yrs ago and apparently my cyst had been growing since birth. I always thought it was a larger than normal adam's apple until an ENT took a look. He immediately suspected a TDC confirmed by a CT scan. Regarding the procedure - I was given general anesthesia through IV and within a couple minutes was knocked out, estimated time 12:50pm. When I awoke, I immediately asked the time and it was 2:20pm. Doctor said it went well. I currently have a drain connected via tube to my throat and there's about 15ml of blood in the drain currently. As long as I don't look at it, it doesn't bother me. I'm told it'll be removed tomorrow at my post-op checkup. The main complaint I have right now is a very sore throat with a burning sensation, comparable in scale to very bad sore/strep throat. Very difficult to swallow at the moment so must stick with small sips of water and tiny bites of very soft foods (porridge, soup, pudding). Slight pain if neck is moved forward or back so must keep quite still in front-facing position. Also trying to shake off some drowsiness. Thank God overall the surgery was smooth. The healing and recovery will be key. If you're diagnosed for this operation, don't worry - one of the worse parts is the process and the tests to get to the day and then when it comes, waiting before you actually get into the OR. Important to keep calm. I will try to post again to update on my recovery process.

    - Ken

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  172. This comment has been removed by a blog administrator.

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  173. Update: Today is day 12 of my recovery. Had the drain tube removed day 5 (would be earlier if not for holiday weekend), stitches removed day 8. There's a 2.5 inch scar and just a small bump/swell along the scar. Pain of swallowing has slowly improved each day to the point now it is tolerable and I'm back to eating normal food. Only issue now is a numbness from under my chin to the scar. It feels almost exactly like how your mouth feels after novacaine at the dentist except it is at the throat area. Does anyone have experience with numbness after sistrunk - what is normal, how long does it last, and any recommendations to help it? Thanks.

    - Ken

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  174. I friend of mine who had hers removed 10-15 years ago was numb for 6 months or so. Then it went away. I think you need to talk to the doc. about it and hope you're like my friend who recovered completely after a while.

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  175. I came across this site after reading many medical journals and wikipedia references. I'm glad that this is still updated with entries.

    My son with diagnosed with the cyst last year. He was just 1 1/2 years old and we took a wait and see approach. He is a smart, healthy and active boy so we opted not to proceed with any surgery at his age. We first noticed the lump when feeding him. He is obviously too young to have developed his adam's apple. The cyst has not given him any issues even till this day.

    The lump changes in size but we had always hoped it would go away on its own. Now, 1 year later, we sought the expertise of the specialist that provided the original diagnosis at Children's Hospital, and he again recommended surgical removal. We have already done a CT scan and next week is the pre-op appointment. Surgery is scheduled for the following week.

    Nothing scares me more than the thought of putting him through this. On one hand, you think if we do nothing, he may go on perfectly normal. On the other, there is the chance of infection years down the line, or that there is some abnormal thyroid condition because part of it may need to be removed. It just tears me apart and my wife and I have had many fights. My son is too young to understand and seeing him without a care in the world, learning new things daily, only make it that much more difficult. I can only hope this is for the best and that this is the correct course of action and not something unnecessary.

    The opinions and comments I've read here does provide some comfort and reassurance. Let me know if you have similar experiences with younger children.

    -RW

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  176. Hi all I also had thyroglossal cyst and I had it removed 8 weeks ago in the UK. I had the operation with an anterior neck clearance which took a little longer than standard Sistrunk's procedure. My surgeon suggested that approach as there will be lower chance of recurrence compared to Sistrunk's procedure.
    The operation took 2.5 hours and I had to stay overnight. I also had a drain which was removed after 24 hours.
    I still feel tight and tender around the scar and my chin is still numb but I think that is normal and it will take a few months for it to subside. My scar is 3 inches long and it is still quite dark. I've been massaging it with Bio oil and hopefully it helps to lighten it.
    Like Renee P, I feel something moving in my neck whenever I swallow which is quite uncomfortable. However, my swallowing and voice is not affected. I will mention this to my surgeon when I have next follow up.

    Emma

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  177. thanks for all the comments here - i'm booked in next monday for my op, and the main thing that worries me is how i'm going to maintain breastfeeding my 6 month old baby - no one has given me any decent information about how i'll go with her, and if any of the medication will be unsafe for baby through the breastmilk. the hospital will allow me to bring her to stay overnight with me as long as my mum comes too to be responsible for her. anyone had any experience in this regard?

    ALso - steven, how have you gone since your operation? I too am a professional singer, and was primarily concerned when i found this thing that it might affect my voice. Actually am supposed to be making a short domestic flight to an awards ceremony for one of my songs 2 1/2 weeks after my surgery. Am I crazy to go ahead with this? I was going to go down alone with my baby, and leave toddler and daddy at home... maybe i'm biting off more than I can chew? anyone have any guidance about this plan? so many questions! thanks!

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  178. RW--I read a blog post of a 4 or 5 year old who had the cyst removed. She did great and recovered quickly. She didn't seem in pain like us old folks were after recovery. 1 1/2 years is young. Just make sure your doctor is highly recommended and has lots and lots of experience. Good luck and let us know how it went. People inquire a lot about other young kids going through the same procedure. So please let us know how it goes.

    Birdie--The medications you'll be on include anesthesia and some form of pain killer if you choose to be on one. If it were me, I would pump the milk and dispose of it for a day or two so the baby doesn't get any of that. You could use Tylenol for pain relief and just hang in there. For me, the painful part only lasted a couple of days and it got really tolerable after that. Otherwise, I would ask her pediatrician what he/she thinks about that issue.

    As far as the voice thing....I actually lost my voice for a couple of weeks due to complications. But fully recovered. I think there have been some who haven't experienced voice loss. You might be like that...just be careful not to choke on anything ie. chop stuff up before swallowing.

    Good luck with the awards ceremony. 2 1/2 weeks wasn't long enough for me but you might just bounce back quickly and do fine.

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  179. Dropping back by to say hi to everyone. I had my sistrunk done December 1, 2009. To recap the past seven months: I had no pain after my surgery and only took tylenol. I was numb in the area under my chin for about a solid two months - didn't bother me because it was external so I didn't even notice unless I touched under my chin. The only thing I find strange now through all these months is that when I turn my head up and to the right or up and to the left, I can sort of feel the muscles rubbing against the outside "horns" of the hyoid bone. Things are different now that I don't have the middle 1/3 of the bone but it's nothing bad. I am NOT a professional singer, but have noticed that there is a definite change in the mid-range of my voice when singing or speaking. It feels harder to the lift the voicebox in a certain range. All in all, I am thrilled that I went through with the surgery. Best of luck to everyone.

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  180. I had the operation 2 weeks ago and am very swollen about palm size all around the scar it feels very hard is this normal?

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  181. I wanted to give an update to my son's surgery. The procedure took place on 6/26 and was a success. He is recovering very well and is pretty much back to himself. We did have to stay in the hosiptal 1 extra night since the wound had a little more drain and he also had a small fever. I'm very relieved and have to say it was one of the hardest things I've ever had to endure. Although he is healing nicely, I am noticing a new lump in a different location. I hope this is not indicative of a recurrance as the Doctor removed the tract and some additional smaller cysts found through the CT scan. Nothing was evident during the follow up exam 1 week post op. I'm very anxious and will probably take my son in for an assessment. Hoping for the best.

    Lucy, my son is actually 2 1/2 now. Thanks again for your comments and support.

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  182. I am very grateful to read what you have gone through and experience. As a wife who has a husband who just yesterday found out that the thing in the middle of his neck might be a thyroglossal duct cyst and has been referred to the ear and nose doctor I find your comments extremely useful. Thanks to you all and how brave you all are. Where can I be most useful to my husband? He is very nervous.

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  183. My wife just led me to this great blog. It was somewhat calming to read that the surgery and recovery was not too terrible. Like everyone else, I'm "scared to death" of being put under anesthesia and having any type of surgery. It was also good to know about the approximate healing period and time off from work. After reading your comments I now have the courage to call for my ENT appointment. Details to follow.

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  184. Thanks so much for your comments. I wished there was something like this when I went through it so I didn't have to be such a wreck. So, I'm glad it's helping people out there. :0)

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  185. I have my ENT appointment on Thursday and so should have a better idea of what is going to happen. My wife tells me and I agree that the cyst looks smaller over the past few days.Is this common? Tonight I've been dizzy, nauseous and off balance with my stomach "feeling like a rock". I've had these types of symptoms for a long time and I'm not sure if it's sheer terror about the possibility of surgery or possibly from the cyst. Has anyone had muscle spasms from this in addition to the nausea, weakness and dizziness?

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  186. No muscle spasms for me...mostly just discomfort in the neck area, feeling like my swallowing reflex was slow, and a clicking noise coming from that area. I did feel dizzy and nauseous that went away with the surgery. And of course I was anxious.

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  187. I had my cyst taken out 3 weeks again but did not have a sistrunk procedure the surgeon just removed the cyst and tissue around it i think the cyst has come back my throat is really red around the scar and i can feel a lump im so worried it has come back!

    Ben x

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  188. Tomorrow I see the ENT specialist. I'm hoping for the best but prepared for the worst. The question is will it require surgery? If so, when? And, how much time off from work etc. Thanks to everyone on this blog, I have some idea what to expect. Great tips about liquid pain meds and one vs two scars if the drain is put below. I hope, no matter what the outcome, to be able to help others facing this procedure like all on this site helped me to have hope and perspective. Especially about children suffering from this condition. Let's see what happens....

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  189. Im 17 and im getting the procedure done tommorrow! Although mine isnt as severe as yours I will probably have the same recovery process. I had been searching for someone who had the procedure done to see what they had to say avout the recovery and this was very helpfull. thank you!

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  190. My name is Ben im 19 years old and here is my story

    Last July i noticed i had a lump on my neck so i went to the doctors and he was unsure of what it was so for 4 months he just kept giving me tablets and then eventually referred me to my local hospital it took 2 months to hear back from them. when i finally got an appointment it tooks 9 consultations before i got my sugery. I had my sugery 3 weeks ago and i am now noticing the cyst coming back, a new cyst next to it and my surgery wound is infected so now i have to go back to the doctors next week.

    A year on i am left with a worse problem then before my sugery and am feeling upset about it i see no hope in the future this is ruining my life

    Ben x

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  191. Ben x,
    Sounds like it has been a stressful year and that it could have been avoided by going to a doctor that knew what he/she was doing. So sorry to hear. I would find a better doctor if possible. Hang in there. It should all be resolved soon.

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  192. Ben's case sounds horrendous. Just to update, when I went to the ENT specialist last Thursday, he thought that what I had was a "swollen lymph node". He is sending me for an Esophogram (Barium Swallow)and also for a CT Scan of the neck with a needle biopsy as soon as they schedule it. The "lump" has gone down a lot but is still there and still red. Has anyone had any of these tests and experience with the cyst getting smaller?

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  193. I had a CT scan without a needle biopsy. Sounds interesting. Let us know what the results say.

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  194. To Husband: I had the dizziness, nausea, spasms and discomfort for about a year with NO visible or palpable lump. Then one day just like that, the lump popped up after a cold though it was only about the size of a marble. I went through a barium swallow which showed nothing, I went through being given antibiotics, steroids and decongestants.. then FINALLY like I said, when the lump appeared, the doc sent me for an ultrasound of my neck & thyroid. The radiologist said during ultrasound it was a TGDC. They then ordered the CT of my neck. Again, said it was TGDC. However, when they actually did my surgery, the duct was there, the cyst was NOT and four lymph nodes along the duct had to be removed as they were severely infected. The doctors on my case spent time telling me they couldn't even find the cyst, only the duct and the infected lymph nodes. Point being, you can have infected lymph nodes and they WILL cause you problems. I learned from more than a year of suffering and a weight loss of more thn 30 pounds over just a few months.

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  195. Thank you to Anonymous for confirming these types of symptoms and to Lucy for your compassion. The CT scan and Barium Swallow is now scheduled for a week from Friday(the 13th)with the CT scan at 7:45 AM. The needle biopsy will come as soon as the HMO approves it. I'm wondering if this is really necessary if this is indeed a TGDC, but I guess it can't hurt to rule out any malignancy as well. I just hope that the diagnosis isn't delayed like so many others. The lump is definitely smaller but still red and there after about 5-6 weeks. I'm still praying to avoid surgery, but if it comes to that this blog has given me the courage to face it.

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  196. Interesting. Maybe you don't have a TCDC. Let us know what it turns out to be.

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  197. Have a small update on my case - cyst is not back however i now have a problem with my thyroid gland its swollen and sore - sticks out a little bit too am having a CT scan in a month - wish the nightmare was over with - hate my scar is still really red and sore

    Ben xx

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  198. I'm so glad to have found this site, it's really like a support group and a support group is what i need right now..

    a cyst was growing in the right side of my thyroid and i just got it removed last week, and just got my stitches out. i prepared for the worst before looking into the mirror but still got a rude shock! D:

    after bawling and feeling sorry for myself i just want to think positive and get better asap. the area around my scar is still a little bit hard and feels slightly bruised; i've read that massaging helps but i'm not sure i'm doing it the right way. is it ok to massage directly on the scar? how much pressure should be applied? thanks in advance!!

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