I’m so glad I found this site! I’ve been living with pain for many years and finally diagnosed with Eagle Syndrome. I’m having surgery next Tuesday to removed my 5 cm calcified styloid (it’s very thick as well as long). My surgeon has performed two previous Eagle surgeries but I am still nervous! He seemed pretty confident and said it will be outpatient surgery.
A little background about my situation, in hopes to learn and share more about this rare syndrome. I’m 47 years old and was diagnosed with fibromyalgia when I was 25 - chronic fatigue and pain for over half my life (not sure if it’s all related to Eagles or not). I have a lot of issues that most of you have as well. I had 5 wisdom teeth removed when I was a teenager (still have my tonsils, although I have had bouts of tonsil stones), I had parathyroid surgery 17 years ago, I have a congenital fusion in my neck (and one in my lower back), also degenerative disc disease in my neck, TMJ, and recently discovered multiple thyroid nodules and calcification on my thyroid. I have every symptom of hypothyroid although my regular doctor says my TSH is “normal” so I am not being treated for any thyroid at the moment. I also suspect that I have a connective tissue disorder (Ehlers-Danlos) but haven’t been diagnosed (my father had a aortic aneurysm and was diagnosed w connective tissue disorder).
I am nervous about the surgery and hope it will help some of my symptoms. I wish doctors knew what the cause of this was. I worry that my left side will cause me problems in the future. How can I prevent them from growing or calcifying? I’m sure everyone wants to know that answer.
Welcome! You do have an interesting mix of health challenges, but you’re right, you’re not alone! How great that you have a surgery date & a surgeon who is approaching your surgery w/ confidence. Hopefully that relieves your surgical anxiety a bit. There’s a very good chance you will notice immediate improvements when you wake up from surgery. Outpatient is really the best because recovering at home is so much more pleasant than spending even a day in the hospital. I had both of my ES surgeries outpatient & I know many others on this forum have as well.
I also have thyroid nodules/cysts that have been coming & going since I was in my early 30s (I’m early 60s now). I also have TMJ & was diagnosed w/ “Undifferentiated Connective Tissue Disease” (which could turn into RA or Lupus or neither) last year.
Sadly, there is no evidence one way or the other that any of these things have a connection to ES. I do wish there was an answer to your question regarding how to stop calcification/growth of the SPs &/or calcification of the stylohyoid ligaments. There are quite a number of people on this forum who’ve only had unilateral ES so if you have no evidence of a bilateral situation then it’s possible you won’t develop it on your other side. If you know you have it bilaterally, it’s been the norm that the second side will become more symptomatic after the first styloid is removed. This is another unanswered mystery - which can possibly be explained by the symptoms on the “worst side” masking those of the lesser side. When the worst is removed, the second one gets its “15 min. of fame” as it were.
I hope your surgery goes exceedingly well & will pray for you to have peace going in to it. Check the Newbies’ Guide under the HOME tab above for more information on what to expect regarding surgery.
There’s quite a few current threads by members who’ve just had surgery, so that’ll give you an idea about what to expect, as well as the Newbies Guide info. Hopefully that’ll put your mind at rest…
You’ve obviously got an awful lot to deal with with all those health conditions, so you must be a pretty strong person, I’m sure that’ll see you through. As for preventing it happening to the other side, the exact cause of ES isn’t known, other than tonsillectomies & pharyngeal trauma, but some doctors believe that metabolic disorders also play a part. With your parathyroid/ thyroid & calcification disorders that could be a cause, but not sure that there’s anything you could do about it, other than getting regualr blood checks done to make sure your calcium & Vit D levels are not going too high- there were some discussions about that a long time ago, but not sure if they can be found as the site changed a year ago; I don’t think those members post any more either. Also we have had quite a few members with EDS on in the last year or so, so there does seem to be a link with that.
Hope that your surgery goes well, & thinking of you. God Bless.
Good luck with your surgery x
Prayers for a safe surgery and swift recovery. You sound like you’re telling my life story.I am 11 days post op from external styloidectomy. I was also diagnosed with TMJD & cervical disc disease 5 years ago and have autoimmune hypothyroidism. I suffered with symptoms of hypo for over a decade, seeking out multiple doctors for help. Every single time they said my thyroid was normal just because the TSH was within THEIR normal range. It wasn’t until I consulted with a naturopathic physician that I found out I have Hashimoto’s thyroiditis. She did more than test just my TSH- I would highly recommend having a full thyroid panel done, including TPO & thyroglobulin anitbodies. With any autoimmune disorder, diet is everything. No gluten, soy, dairy sugar or processed foods. My naturopath started me on supplements to correct the micronutrient deficiencies such as Vitamin D3, B12, folate and started me on levothyroxine. I am doing so much better now thanks to her.
Amipie- is it your surgery this week? If so, best wishes & hope that all goes well!
God Bless, Jules
Thank you so much! I’m really scared so I’m trying not to think too much about it or I might change my mind. Hope to have a successful outcome! Thanks for all your wisdom and encouragement!
I just had an ultrasound on my thyroid and they didn’t find thyroid cancer. So, they will just monitor things as I do have multiple cysts. I feel like there should be a connection with all of this health stuff. It’s so frustrating to not have answers and yet have so many symptoms of feeling unwell!
Thanks BanDruid7! I think I will have to look further into the naturopath route since my primary doctor won’t even give me a referral to an ENT (since my TSH is normal). I have seen one in the past but its been about 10 years. I just want to get to the bottom of this and start feeling better. I had an food intolerance test done that revealed I had an intolerance to yeast but not gluten (although they kind of go hand in hand most of the time - not always). Also, casein and whey - so no dairy for me. Yet, my body is calcifying all over? I don’t understand how this is happening…
Please let us know how you’re doing post op when you feel up to it. I will be praying for you as I know today was the “big” day.
Thanks for all the prayers and well wishes! So, I had external surgery yesterday to remove 4 cm of my right styloid. One of ends of the styloid has a large round bulb on it too.
Last night was pretty rough as I was in a lot of pain and vomiting. I’m feeling a little better today but pain is rough. It mainly hurts down in my throat (hurts to swallow/talk) so not sure if that is from the actual extraction or from the breathing tube down my esophagus. I think it’s too early for me to tell how successful the surgery has been but have noticed less pain in my ear area (of course I’m on some heavy pain meds right now too). Thanks for checking in with me Isaiah_40_31 and Jules. I really appreciate it! I will update as the healing continues.
Interesting about the bulbous end on the styloid. Did you get to see it?
Sounds like you had a rough go w/ the after-effects of anesthesia. Glad that is past now. The pain down in your throat & w/ talking is probably from the breathing tube. I definitely had that experience after my first surgery. It wasn’t even noticeable after my second. It will take several days to resolve. Days 3-5 after surgery are when your post op inflammation will be the worst so make sure to keep to your pain meds schedule (even setting an alarm so you take it during the night) through that time. Keep ice handy & use it 3 or 4x/day - 15 min. on & at least 45 min. off; keep your head elevated when you’re lying down; all these things help reduce inflammation which helps reduce the overall pain.
I’m praying for you to notice positive changes ASAP now that your styloid is gone!
Glad that you’re safely through the op, & hope that the pain soon eases. It is a big op, so not unexpected that you feel rough. I think because it’s often done in a day, we forget that! Take care, take it easy & God Bless