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Avatar universal

Two surgeries and problem is still present

I am a 47 yr old male and I was diagnosed with a follicular cyst 18 months ago by my ENT. Had surgery and cyst returned. Dr. said give it time to heal - returned to dr after six months and he said he had not gotten it all-perhaps tissue remained- he would need to operate again. Had surgery again in May 08. Lump returned immediately and leaks constantly. Returned to ENT dr and now he said perhaps it is a thyroid or salivary duct cyst and he would look at the MRI again and get back with me. I have called twice since then and left messages for this dr and he has not returned my calls. What is my next step? The cyst still leaks all the time and I just keep relieving the pressure by squeezing the fluid out. There is no infection present. I am not at all sure my insurance will pay for another operation. Is there no test that can tell the dr exactly what this is?
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125112 tn?1217273862
scotty61,

This has got to be distressing and frustrating. I am sure my words do not translate well.

I can't help you on this but I do have a recommendation. For starters, if I were you, I would cordially (but directly) request your medical records *and* blood labs pertaining to this problem. These would be records just prior to diagnosis, diagnosis, records pertaining to surgery and all other's coming after your surgery. Within your medical records, will list information (vitals etc.) your complaints noted and doctor's thoughts/findings.

On top of this, you are entitled to a copy of your MRI (on CD disc). Request it. Purchase a file folder for these. In case you have to seek another consult, having these records in hand would be mighty helpful-I think.

You will probably have to sign for them (release) and there is a possibility that you will be requested a nominal fee (but not always). By law-you are entitled to your records and imagining that can be placed on Disc. Be sure to request your blood lab tests as well.

As for the cyst: it isn't clear exactly what area the cyst was in. The saliva glands are a distance from thyroid.

Here is a diagram of saliva glands: http://tinyurl.com/5pj5h3
(you'll have to cut, copy & paste inside your address bar)

I'm wondering if the surgeon operated on a thyroglossal duct cyst.

The thyroid is located at the base of your neck. To check where the placement would be: http://www.aace.com/public/awareness/tam/2006/pdfs/NeckCheckCard.pdf

I have heard of ectopic thyroid. You can read here: http://www.thyroidmanager.org/Chapter21/ch01s20.html

I'm sure Dr. Lupo can give you a good lead. In the meantime, get those records.

Best to you, Scotty.

~Kate


Helpful - 1
Avatar universal
I had the Sistrunk surgery 6 days ago and the cyst plus a portion of the hyoid bone and a duct was removed that traveled all the way to the base of the tongue. I still have swelling under the incision and it seems to have filled with fluid. It is very swollen but I am not sure if this is normal or not. It was feeling better until today, This is my third surgery - it was misdiagnosed the first two times. I have a call in to the doctor but he hasn't called back yet.

Here is a link to the picture:

[IMG]http://i225.photobucket.com/albums/dd280/dancinglightstudio/post-surgery-cyst.jpg[/IMG]

http://i225.photobucket.com/albums/dd280/dancinglightstudio/post-surgery-cyst.jpg


Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
This is not that common for typical thyroid cysts - it may have been a thyroglossal duct cyst -- located a little below the chin in the midline of the neck. But surgery should completely remove this type of cyst as well.  Would consider taking all records/films for a second opinion with another ent (perhaps university based)....
Helpful - 0
125112 tn?1217273862
You are welcome, Scotty. My own feeling is and imagining if I were in your shoes, given the history of this and eventually the failure of your doctor/surgeon returning your calls, while you are still dealing with this; I think I would seek out the attention of another doctor (not affiliated with your doctor/surgeon' s clinic.)

If you do this; having your records ( medical & blood labs etc and imagining on CD) pertaining to this...I think will be very helpful to the next doctor, you and perhaps will not require more imaging.  

I think you will want to retain your own copies (the new doctor can copy a set for his office) for your own safe-keeping.

Continual drainage and after all this time, isn't normal. Luckily, it hasn't become infected.

If you google images: http://images.google.com/images?gbv=2&ndsp=18&hl=en&q=thyroglossal+duct+cyst&start=0&sa=N
You'll see photos/imaging of thyroglossal duct cysts.

I'll try to be brief but share a somewhat similar experience: in my youth, back in the early 80's I developed a growth just under my right jaw line (mid). Given Penicillin, if failed to reduce the growth. My mother took me to another doctor (GP) and she diagnosed me with an infected "gland." It was the size of a whole walnut and was tender to the touch.

Right there (which I don't think would happen these days); under no pain medication, she lanced and drained it. A very painful procedure.
She then "packed" the hole with a long, thin strip of gauze (worse pain than the lancing), covered it up with gauze and instructed my mother to clean it out daily.
It was some liquid/saline solution and using a needless syringe. She faithfully did so. I think I was put on another course of antibiotics.

Anyway, the thought was that the doctor would, after a certain amount of time elapsed, take out the gauze and warned, depending on how it looked, may have to pack it again. Thankfully, that didn't happen again.
She took out the gauze and was pleased with how it looked.
While I can not remember, I am certain my mother was diligent about keeping the area clean for awhile.
Having said this, this was not deep in my neck, as I think a  thyroglossal duct would be.

You shouldn't still be draining after all this time. I'm not a doctor but in my mind, the drainage would lead me to think that something is festering just enough to cause it.

Too bad you didn't have or have access to a digital camera, to snap off a photo of your neck. Upload to computer and upload to a site such as photobucket.
I think medhelp allows for placing photos within a thread. If not, you can post it to your profile.

Hopefully Dr. Lupo will have some idea and a suggestion as to who, within the medical community, would be most suitable for your problem.
My feeling is, you will want to seek consult with a doctor outside of your current doctor/surgeons office.

Sorry to be so long-winded. Look forward to hear Dr. Lupo's response. I'm hoping you will find a sollution and complete healing.

Best,
~Kate
Helpful - 0
Avatar universal
Thank you for these resources, Kate. My family doctor originally thought this was a thyroid duct cyst but ultrasound and then MRI did not confirm this. So the two surgeries were to remove what my ENT said was basically a large ingrown hair. Didn't make sense at all to me, especially as the fluid continued to leak. The mass is in the center of my throat and does not swell as long as I keep the fluid drained by applying pressure occasionally. Eating causes it to leak. I am taking your recommendation about the records and will get copies. Thanks again.
Helpful - 0

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