Thyroid & Eagles

My doctors are discussing a surgery to remove my thyroid. I also have a calcified stylohyoid ligament causing Eagles syndrome. I've discussed with the surgeon the possibility of doing both surgical procedures at once. She said she would recommend bringing in a specialist to JUST remove the ligament, and she would focus on the thyroid. Another doc said he can do both the thyroid AND the stylohyoid, but I'm not sure he's an expert in both. If I go with TWO specialist, each would have the most experience in their realm of expertise. I think that sounds wiser than selecting an ENT who says he can do both. I plan to consult with several surgeons before deciding.

QUESTION: Have any of you had both your thyroid and your stylohyoid removed? If so, was it done by the same surgeon or two specialists? And was it done during the same surgery or two separate times to the operating room?

Thanks!

Kathy Carlton Willis

What are the Primary symptoms that you feel? did your Thyroid fail any tests?

RE: Thyroid

I have fast growing thyroid nodules, which will be biopsied in a couple of weeks, but she said even if it's benign she's pretty sure the thyroid should come out due the size of the nodules and goiter. I also have sero-negative Hashimoto's thyroiditis due to Sjogren's Syndrome.

RE: Symptoms

I have lots of symptoms, and it's hard to tell which are from thyroid, which are from Eagle's, which are from Sjogren's Syndrome, etc. I have my long list somewhere else on the site, but here are some:

  • pain with moving head (twisting neck)
  • pain, itching and numb/tingly along side if face/neck/ear
  • difficulty with swallowing, breathing and singing (pain too)
  • been told I have thoracic outlet syndrome and symptoms that go with that

Kathy Carlton Willis (WillisWay)

All that sounds like styloid to me because I have the same thing but no thyroid issues

I think it's probably a combination of all my different issues, because of the size of the goiter...it's putting pressure on the nearby structures. The calcified stylohyoid isn't elongated like some of yours, from what I understand, it's "just" calcified. But I do realize they could get in there and see that it's longer than they expected. I hear that some of your CT scans haven't accurately measured the length. The specialists will sort it all out.

They are thinking the thyroid could be cancerous, so I'm not looking at an option of not removing it. But I AM looking at the option of having my stylohyoid ligament removed while they've got my throat opened up.

My big question is for those who have to have both their thyroid and stylohyoid removed...did you have it done at the same time and by the same surgeon or get separate specialists?

Thanks!

Kathy (WillisWay)

I was diagnosed with Thyroid cancer. It scared me so I went to my ENT and asked what the bone was in my tonsil area. My tonsils were removed in 1957. My ENT knew immediately what I had and diagnosed it as Eagles. Knowing that the Eagles was not cancer, I did not even think to have both surgeries at once. The thyroid was removed and then I had to adjust to the thyroid supplements and do a RAI treatment(for cancer). I waited a little over 2 years to have the stylohyoid (Eagles surgery). I would think it is better to do one at a time, because there is an adjustment period to the thyroid medication, about 6- 9 months. However, if both are necessary, as in the pain from the Eagles is unbearable and the thyroid is seriously a problem then two at a time could be done.

I had an endocrine cancer surgeon remove my thyroid and 2 years later my ENT removed my styloid. I would say that you could have both surgeries done within 6 months of each other if you don't want to do them together. I picked each surgeon cautiously, though I was in a bigger hurry to get rid of the cancer.

My thyroid surgeon was superlative, I had 9 lymph nodes removed as well, no cancer in them and no spread and I never suffered any pain from the surgery. My neck felt stiff, almost young and tight for about 6 months, but as soon as I was over the irritation of the breathing tube( 48 hours), I was fine from the surgery. Getting used to synthroid is another issue that took some time.

The Eagles surgery was much more painful and I took 3-4 weeks to feel less pain and over 12 weeks to start feeling that I might recover successfully. After 8 months, I am not having too many Eagles symptoms, but if I get stressed and start clenching my teeth, I get ear pain. ( Not Eagles, but clenching causes the pain). I would say that my ENT did a good job and I was his second patient, but he had the surgery done to himself so he knew what it was about and studied it prior to his surgery.

Sorry I am always way too long winded.

Did the thyroid removal help

I’m actually having my thyroid and styloid removed at same time in February… I have one active and one non active nodules… My net said he wouldn’t do both and would have another specialist come in and remove my calicified styloid… I was told that sometimes the nodule can push on the calcified styloid and trigger some of the symptoms more… I have vascular eagles syndrome so it comes with massive migraines to the point my speech is messed up… My suggestion just let the two surgeons do their jobs

Nkingston, I think having 2 specialists working in the same operating room also sounds wise. The problem is, finding a surgeon in Austin, TX area that will do the styloidectomy, using the external method to remove it all. I've talked to a few ENTs who don't give very good success rates with the surgery. And then there's the ENT who wants to do both the thyroidectomy AND the styloidectomy at the same time, but I have no idea if he's an expert at either or just a generalist AND what if I ask him to do JUST the stylohyoid ligament, and have a different specialist for the thyroid. Will it make him mad since he says he can do both? Well...no matter...it's my decision. I'm the consumer, and this is a business/health decision, not a social thing! I've also asked the thyroid expert to tell me who she would recommend be in the operating room with her to do the styloidectomy and we'll see what she says.

If I have cancer in the thyroid, that might rush the surgery enough that I don't have time to select a surgeon for the Eagle's syndrome stuff, but if the biopsies come back okay, and I have time to schedule the thyroid surgery later (due to size and rapidly growing nodules), I will have more time to get it all put together with 2 surgeons in the same operating room.

And of course, complicating things is the fact that I have several speaking events, and I need a strong voice for those, even with a microphone. So, getting it all scheduled with that timing in mind is a nightmare. And if it's cancer, then that trumps all and I move forward as quickly as possible and cancel events if I have to. I hope not!

Nkingston, are you having thyroid removed due to cancer, size, benign thyroid disease like Hashimotos, or what? I'll be praying for you! And it's interesting that we might both be having the same surgery at the same time! I won't know anything until January, though.

Thanks!

I had half of my thyroid removed about 12 years ago due to nodules by a General Surgeon. My Eagles syndrome surgery was this past year by a Plastic surgeon ENT. I would ask how many styloid surgeries they have done as it is more difficult and not done as often. Also go with whom you are most comfortable with.

I am praying your biopsies come back fine, however just to let you know, most thyroid cancer, though not all, is very slow growing and if you had it, you would still have time. There are rare ones that are very aggressive. I am praying that you do not have cancer at all and you have time to breathe and make well educated decisions. My best feeling, if you are not pushed into action by cancer would be to locate the best possible doctor for each surgery separately, and make an educated decision on which surgery to do first. I will be watching for some good news from you.

Thanks, Emma. The doctor is thinking my thyroid nodules aren't like "most thyroid cancers" because of the rapid growth. It doubled in size in just 5 months. We've been tracking my nodules for a while now due to my autoimmune thyroid situation and also due to the goiter. But this time it really starting growing unusually quick for how my nodules had been acting up until this point. I had biopsies a year ago, but they believe it's time to biopsy again. There is a risk with thyroid cancers that the fine needle aspirate misses the cancerous tissue. So it may or may not show up cancer on biopsy. That's why, due to size and rapid growth, they are looking to take it out whether it has cancer or not.

There are a couple of kinds of thyroid cancer that are less common, that do grow faster. So my doctor is recommending getting on this pretty quickly, and also checking for metastasis, lymph node involvement, etc. Also, I'm at high risk for lymphoma due to my autoimmune disease, and there is a type of lymphoma that can attack the thyroid and it can grow faster than other thyroid cancers.

The thyroid surgeon is suggesting we pull in an ENT to do they styloidectomy and do it at the same time as when she removes the thyroid. So we are looking into finding an ENT who is experienced enough to give me peace of mind with it.

Since I've been dealing with other serious health issues for almost 25 years now, and have had over a dozen surgeries, I'm not feeling overwhelmed or stressed or worried. I'm doing pretty well with all this, and know I'll make the best decision I have with the information and resources I have. That's all anyone can do!

Thanks, Emma!

Wow, you have been going through a lot all at one time. I can see why your doctor wants to do both surgeries at one time. I hope you can find someone with experience in Austin. Dr. Donald Donovan in Houston,I think is a cancer ENT and has been reported to have done a successful stylohyoid surgery on a member's wife. The member was TXN. His wife was the patient. Viperbone also tried him, but he didn't think she needed the surgery and was not so nice. I suppose he chooses his patients based on his evaluation of the seriousness of the situation, I don't know. I suppose he could do both at one time, but I don't know if you can get to Houston. Austin should have someone with expertise to do the Eagles.

I will remember to pray every night for your healing. Hope to hear good news, soon.

Emma, your kindness has blessed me. THANK YOU!

Hi Kathy,

I was reading your story, felt like I needed to tell you a little bit about myself and was wondering how your doctor's determined that your stylohyoid ligament was calcified? Was it visible on your CT scan? I was originally diagnosed with thyroid cancer approximately 18 months ago, via fine needle aspiration, I also had a nodule that had doubled in size within a short period of time. ENT removed only half of my thyroid and came back benign. After my thyroid surgery, was having a longer recovery, as my parathyroid glands were not functioning after my surgery. I was in a car accident several months later and started having many Eagle symptoms, but doctors didn't understand what was wrong with me, so I went through the turmoil of getting the Eagles diagnosis. I had surgery once I was diagnosed with Eagles and my ligament was completely calcified. My doctor didn't tell me that my ligament was calcified until after my surgery. The ENT doctor I saw for my Eagles removed it, still having horrible symptoms and going back for second surgery. In my opinion whoever your doctor is that was smart enough to tell you that your your ligament is calcified and diagnosed your Eagle's I applaud them. From my experience If I were in your shoes I would for sure try to have both procedures done together, but agree you want someone that has experience with Eagle's and one that had great experience with thyroid removals. Eagle syndrome and thyroid related symptoms from my experience are torturous. The ligament is so tricky because the facial nerves are attached. Thyroid, doctor needs to be experienced as parathyroid glands are at risk.along with many other nerves when a doctor is removing thyroid gland. I agree with Emma that Eagle surgery is harder to recover from, but also need to consider scar tissue and it is always better if one can stay away from least amount of surgeries, especially when dealing with throat.

Warmest thoughts and prayers your way!

Kathy, where are you having surgery? I just got off phone last night with ENT DR Duvurri, at Pittsburgh, UPMC, they also have a good skull base surgery center there as well. Dr D ordered a FNA I had done Thanksgiving week and found out on Christmas eve that I have Thyroid Cancer, with a side order of "possible Eagle's AND I am also DXD w/Sjogren's what are teh odds of htat?!? AND we are BOTH named Cathy/Kathy!

My thyroid was ablated w/RAI back in 2005, I developed pancreatitis within the month. took Creon to aid digestion since then until last year (developed Fibrosing colonopathy from that med-

http://www.creon.com

CREON may increase your chance of having a rare bowel disorder called fibrosing colonopathy

I did a swallow study in '08, bled out during colorectal prolapse surgery in '10 (my 2nd surgery for same symtpom) and NOW HAVE BARIUM stuck in bowel and can't find anyone to take it out, (via CT it shows CONTRAST!) so Pittsburgh said they'd do the Eagle's if needed as i have not seen that surgeon yet, along with the Thryoid Cancer surgery!

and I have HIgh amounts of Gadolinium in urine with some found in blood 6 years AFTEr my last MRI w/contrat, so I will NEVER have another MRI either! I told Dr Duvurri that MRIs are OFF THE TABLE see recent findings that brain abnormatlities are showing up in those even having only 1! I had 6-7 in tne yrs time. Never again as NOW I have blood resutls of Systemic SClerosis but docs WONT dx that either even tho blood labs state it beucae they claim only people with bad kidneys/kidne diseaes get NSF I said , well then I may have a non-nephrogenic case!! SMH! ANd Fist!

Cathy
PS I am also on FB or PM me what did I tell u?

Study links gadolinium MR contrast to brain abnormalities

By Wayne Forrest, AuntMinnie.com staff writer

December 17, 2013 -- Japanese researchers have found a connection between gadolinium-based MRI contrast and abnormalities in two regions of the brain, which could represent a reaction to gadolinium's toxicity, according to a study published on December 17 in Radiology. MORE AT SITE:

http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=dis&itemId=106037&printpage=true&fsec=sup&fsub=mri

WillisWay said:

RE: Thyroid

I have fast growing thyroid nodules, which will be biopsied in a couple of weeks, but she said even if it's benign she's pretty sure the thyroid should come out due the size of the nodules and goiter. I also have sero-negative Hashimoto's thyroiditis due to Sjogren's Syndrome.

RE: Symptoms

I have lots of symptoms, and it's hard to tell which are from thyroid, which are from Eagle's, which are from Sjogren's Syndrome, etc. I have my long list somewhere else on the site, but here are some:

  • pain with moving head (twisting neck)
  • pain, itching and numb/tingly along side if face/neck/ear
  • difficulty with swallowing, breathing and singing (pain too)
  • been told I have thoracic outlet syndrome and symptoms that go with that

Kathy Carlton Willis (WillisWay)