Thyroglossal Duct Cyst - anyone had any experience?

[mrsgamp]

My DD(3.5) has just been diagnosed with a thyroglossal duct cyst. Other than a large lump in her neck she is asymptomatic. I have been advised that surgery is the only course of action. I am terrified of this and find it difficult to contemplate putting her through such a stressful experience when there - at this moment in time - is nothing wrong with her (my DD has a communication disorder which would make the whole process even more challenging). Has anyone had any experience of this condition? Any advise or opinions? Anyone know of someone who's not had surgery? Any help/support would be appreciated...

Sooty7, thank you so much for your reply. I am delighted your son - and you! - got through his surgery relatively smoothly. I continue to wish him well in his recovery. Do you have any idea how long you will have to wait for the results? If it was confirmed your DS didn't have a TDC during surgery, did he have a Sistrunk procedure do you know?

My DD's diagnosis came during an ENT appointment, when I pointed out her lump. I had previously not been particularly concerned about it, assuming it was a swollen gland. The doctor who examined her was quite delighted about it, saying it was rare and he's only come across one case years ago during his medical exams! He got the consultant in, who confirmed the diagnosis, then other doctors in the clinic! I think part of the examination confirms that the lump moves up when swallowing or poking the tongue out (although I can't really see that my little girl's lump does, and she finds it difficult to 'perform' things like poking tongue out etc when asked). They have requested she has a scan within the month and we have an appointment with the surgeon next month.

How was your son's diagnosed?

I would love to know how you get on with the results. All the best to you and your DS.

just had to add my story..

i had a TDC removed almost 3 years ago when i was 21 (coming up for 24 in october). mine was a very long diagnosis. i had a normal neck all through my childhood. suffered from alot of throat infections and ended up having my tonsils out when i was 11. i woke up one morning not long after my 20th birthday with a very strange 'dent' in my neck. left it a week before visiting my gp who didnt know what to make of it. got sent away with antibiotics and told to return a week later. it scared me that none of the gp's i seen had any clue as to what this was on my neck. i really had to push them to be reffered to a specialist. this went on for 3 months (and many visits to gp!) before they finally refered me to ENT department. waited 6 months before i finally seen a specialist. she said that she was very sure that it was a TDC from just looking at it and from the way it moved up and down when i swallowed or stuck out my tounge. i had a scan done just to confirm what they already suspected. was told that surgery was my best option to get rid of it as i was very self consious of this 'dent' in my neck. was booked in and had op 4 months later.

was told that they would make a small hole in my neck and would expect around 4 or 5 stitches. they would try as best to 'cut' so that the scar would heal and look like just another line on my neck and therefor not be as visible. had op early morning and was very much out of it till following morning. woke up with still a drain in my neck. my first thought was how many stitched i had. ended up with 14 which i was very shocked about. got out after an overnight stay. neck was very swollen for around 2 - 3 weeks.

i got letter confirming that it was a TDC around a month after the op. its now been almost 3 years and have had no further problems. i am still very consious of my scar but others put my mind at rest when they say its not visiable. id say at most it is around 2 inches long now, but does just look like a crease in my neck. surgeon done a good job!

i spoke to specialist as to why i suddenly just got this one morning. was told that this 'part' starts in your mouth when your still a foetus and travels down to its final resting place at the botton of your neck just before birth. in the case of a TDC, it gets stuck and attatches onto what ever its next to, in this case, my windpipe. i was told that it usually becomes more visible after a really bad throat infection which i did have just a few months before. it is very uncommon and not many doctors have witnessed it in real life. i had an army of student doctors in to have a feel of my neck!

i hope this is of some help. i know i am much older than your child, but im sorta the same by the fact that i dont really know of anyone else that has had this. goodluck with whatever happens next!

GroovyRach, I am extremely grateful to you for sharing your story. I found it quite difficult reading some of your expereinces - especially that you had 14 stitches and so much swelling and scarring. I am pleased to hear that your scar is minimal now (when it comes to neck creases, I must look as though I've had a dozen ops for TDC!!) I think that getting diagnosed with this condition in adulthood is even more unusual than childhood. I certainly wouldn't wish this on anyone, but I have found it reassuring somehow to hear from someone who's had experience of this rare condition, so thank you once again.

My DS(14) had a thyroglossal cyst when he was a baby, the consultant originally decided that he was too young for the operation. The cyst was huge and as a result DS had delayed speech due to the pressure cyst was putting on his vocal cords.

To cut a long story short when he was 2.5 the cyst popped while we were in Florida. Was really not very pleasant and poor DS was in a lot of pain.

On arrival back at the UK and under a different hospital, as we had moved, the consultant decided that DS needed to go straight in to have op.

Op was very straight forward and site was quite small. However DS was very scared when he came round and pulled out drain, pulling out stitches and making a mess of wound. This also meant DS and I had an overnight stay in the hospital, which was unplanned.

It took 6 weeks to heal and we had to have nurse visit to change dressing every day - this was far worse than the op to be honest and I think caused far more issues to DS than op would have.

DS has very small scar now, which is in neck crease and really only obvious to us as we know that it is there.

Have you been told how soon they want to operate, and what they expect to do whilst in theatre?

The first consultant had told us operation would be much worse than it finally was (Was talking about slicing him from ear to ear and pulling out his tounge to reach cyst, This was really unnecessary and DS's scar is only between 1-2 inches long!!)

DS was left for well over a year until surgery was necessary, and apart from the speech delay had no further worries.

However knowing how nasty DS's cyst went when it burst,and how much pain he suffered it may be wise to get it sorted before it got this far.

Linzs, thank you for your reply which has been extremely helpful to me. I am pleased your son is well-recovered.

We have an appointment on Thursday with the surgeon, so obviously will have more information then. The original doctor we saw said the operation would be what's known as the 'Sistrunk Procedure'. I believe it's more complicated than just removing the lump, but has next-to-no risk of recurrance.

mrsgamp

How did you get on with doctor on Thursday?

Any news on when op will be?

Hi, Linzs,

So thoughtful of you to remember our appointment. For me it went really well as the doctor supported us entirely in delaying surgery. He said it is a tricky operation and it would be better if DD was bigger. I mentioned fear of infection - and the cyst leaking and some of the problems your poor DS experienced - and he was very laid back about it, saying if she kept getting infections we could reconsider. He also mentioned it might get really huge, and again this would influence our decision if and when it happened. Otherwise, I am convinced her lump has reduced marginally - it's still looks like she has a huge Adam's apple! - and he said they often fluctuate in size but will always be there. We had an ultrasound inbetween appointments and everyone involved is certain of the diagnosis.

I was so relieved that surgery has been postponed and really thought there would be great pressure on me to go ahead with the operation sooner rather than later, especially as the initial doctors we saw wanted me to sign a consent form for surgery there and then. As I mentioned in my first post, my little girl has a communication disorder - autism - and would find it really difficult dealing with being in hospital right now.

Thanks again for sharing your son's story. It was invaluable to hear from real people with experience of this unusual condition.

Hello,
I am a 38 year old female and just had thyroglossal duct surgery yesterday. I've had quite a bit a pain but I'm starting to feel better already. I wish I would've had mine out as a child, as it has been infected quite a bit and developed more scar tissue-involving lymph nodes. They are now sending the cyst and nodes off for biopsy but are optimistic. Although cancer is very, very rare, they say the risk increases with age. Furthermore, it has displaced neck tissue, making me have more of a double chin. My incision is about 4 inches, and although I'm not super vain, I am concerned about how it's going to look. My ENT and GP say it's best to get it out at a younger age....the GP said before 10. I know it's a personal decision and it depends on your situation, but my mom and I wish I would've had it out as a child. I work with children with special needs so I understand that it may be best to wait until your child can better understand. It is difficult to know what to do. I wish you the best.

FLmom, thank you so much for your input - especially the day after surgery! I know exactly what you're saying about the benefits of having surgery younger, but I am certain right now is not the best time for my DD (although I can't imagine when could ever be the 'best' time for an operation...)

How are you feeling after your operation? When do you expect to hear the results of your tests? Was there any reason why you didn't have surgery when you were a child or before things got more complicated?

I sincerely wish you well and hope you have an easy recovery.

Hello was it the same as my 3 year old?