Really Needing Hope and insight!

Hi all! This is my first post, seeing that I was just diagnosed with Eagles less than 2 weeks ago. I am praying that I am finally on the right track now and that there could be better days ahead. I could really use any words/stories of encouragement that things could get better.
It has been a long journey. My symptoms started 9 years ago. The most noticeable symptom at that time was the left side ear fullness and this disequilibrium sensation as though I was rocking on a boat. I was in my first year of teaching and these symptoms seemed to have appeared while I had a head cold. I assumed the symptoms would go away once the upper respiratory infection left, but the symptoms persisted. A few years later, after multiple clear scans and tubes placed in my ears to try and relieve the pressure, I was diagnosed with Palatal Myoclonus. My scans again did not show any concern or reason for the palate movement. I have pain on the left side of the palate where the original movement is coming from. I have been wearing a jaw splint for many years now to try and help with my TMJ ( come to find out that my TMJ is not that bad and is not really the reason for the intense pain on the left side neck/jaw/palate area where it feels like something is being pinched). The daily left side pain, pressure headaches, nausea, left side ear fullness and this awful moving sensation have caused me to go into a deep depression. I was not sure if there was any hope left. I am 36 and desperately want to be a mom and just have “normalcy.” I would be the happiest person ever if I could get rid of these daily debilitating symptoms. After trying what feels like everything, years of being treated for migraine, TMJ, vestibular rehab etc. I had a cone beam CT from a TMJ specialist that came back stating that I had intermittent bilateral calcification of the stylohyoid ligament indicating Eagle’s Syndrome. The TMJ specialist that ordered the scan does not know of a physician who treats Eagle’s Syndrome, so now I am on the search for a knowledgeable physician with this condition. I live in Montana, but will travel wherever it is I need to go. If any of you have had these symptoms and have found relief, I would be so grateful to hear about your experience! Also, is it possible for me to be experiencing these symptoms if I only have calcification of the ligament? Thank you, from the bottom of my heart, for taking the time to read this and for any positive insights you may have.

Sincerely,
Meghan

I could really use some positive insight and hope right now.

Hi. I can’t really answer any of your questions as I’m new to this ES thing as well, but I do wish you luck. This site has been invaluable to me. I would suggest searching any topics you are curious about using the magnifying glass as you may find answers to your questions that way. Most of the recent posters are probably those of us who are still dealing with symptoms or who recently had surgery.

I have the rocking problem like you do as well as other stuff and I’m having surgery on 5/10 so will let you know if that resolves. I do believe I have read that you can have symptoms from calcification without elongation. I would think that anything abnormal in that area can wreak havoc.

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Thank you so much for reaching out to me! That’s really interesting that you also have the rocking sensation. Maybe it really is a symptom of Eagles. I pray that it resolves for you with your surgery! I will certainly be thinking about you and hoping your surgery goes wonderfully! Please keep me updated on how you are doing. Can I ask who is doing your surgery? What scans did they need to have before discussing surgery? Thank you, again!

I’m scheduled with Dr. Samji in California. I had a ct with contrast done over a year ago and nothing came of that. It was through my own research that I discovered this site and requested a copy of my CT. I then thought I saw eagles on my scan based on a free 3D converter I used. (Wow I sounds crazy lol…desperate times…). Anyway I then took it to a specialist here and he confirmed it. Sent it to Dr. Samji who also confirmed it and here we are.

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Meghan,

There is a list of Dr’s familiar with Eagles that I will link below. Hopefully you can find one close enough to travel! As far as having symptoms with only calcified ligaments, it is possible since Eagles is defined as elongated styloid processes and/or calcified (or partially calcified) stylohyoid ligaments.

There is hope! Many members visit the site less after surgery as their symptoms resolve, so a lot of the people you’ll meet here are those who are still awaiting diagnosis or treatment. I had my second side surgery in January and am healing well. I was able to return to full activity 6 weeks after surgery, working remotely 4 weeks after. If you have any questions please let me know.

Looks like the only Montana doctor is in Billings. The link below shows all doctors in the US who are familiar with Eagles.

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I’m so glad that you continued to be an advocate for yourself and kept pursuing until you found that it indeed was ES. I am hoping to get a virtual appointment with Dr. Samji. It appears that he needs me to get a CT of head/neck without contrast before I can see him. The CT that discovered my calcified ligaments was a cone beam CT. I’m in the process of trying to get a referral for another CT so that I can hopefully see Dr. Samji. I wish I could get in to see him now lol…my husband keeps telling me I’ve had this 9 years so at least now we are hopefully on the right track and God willing some healing.:pray:

Thank you so much for the hope! You make a very good point about most ppl still searching for help who are on this site. I’m so glad that some ppl, like yourself, have had the surgery and are still on here for providing insight and encouragement! Thank you!:relaxed: I’m so glad to hear that your surgery went well!! Do you mind me asking what your symptoms were and who did your surgery? Thank you for reaching out!

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I know! When you find something after so long you wanna just get to the finish line! lol. I too have been ill for 9 years and it’s horrible. I believe I have more going on than ES but I’m hoping to improve my life at least a little bit from surgery. Once you send him the CT it should be pretty quick process. I mailed mine and was called within a week for a consult. The consult was maybe 3 weeks later and then surgery 3 weeks after that. I feel so much less anxiety just knowing what is wrong but it still sucks to wait.

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Because my eagles involved the vascular system heavily, a lot of my symptoms reflect that. I had tinnitus in both ears, intense and persistent headaches, constant feeling of something stuck in my throat (worse if I ate cold things), when I turned my head I would get dizzy/heart rate would increase/I would almost pass out - not good for driving or ice skating :sweat_smile:

I have other issues so at first I just pegged my symptoms on those, but I’m glad I ended up getting checked as these surgeries were easier and the potential complications less than the alternative.

I saw Dr Omlie (vascular surgeon) for both procedures, he’s located in MN and always brings his nephew (oral surgeon) in to assist in moving the jaw where it needs to go and monitoring nerves.

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Thank you. I believe my Eagles is definitely vascular as well since I have the daily pressure headaches and dizziness etc. Dod you find anything that brought you relief before you were able to have your surgery? Have those symptoms improved, I hope?

I could temporarily relieve the throat symptoms with cough drops, hard candy, or tea with honey. I didn’t try any medical intervention other than surgery for the rest of my symptoms, and I’m glad I was able to be seen as quickly as I was. All my eagles symptoms have resolved since surgery thankfully.

Wow! This sounds similar as I find myself always sucking on hard candies etc. trying to swallow in order to relieve some pressure in that area. I am so extremely happy to hear your symptoms have improved greatly!!:pray:

Hi- I am new here too. I gasped out loud when you mentioned palatal myoclonus. I have been telling all my doctors that my palate spasms especially when I lay down. Is that what happens to you? I need to google palatal myclonus and see what it describes for sure. I have all your same symptoms.

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Greetings all!
Please I cant find list of Eagles surgeons in Europe! I PREFER UK- MR.AXON! I LIVE IN NIGHTMARE! I WILL PAY ANY AMOUNT-JUST TO GET READ OF THIS DEMONS OUT OF MY BODY! HAVE BOTH SIDES! ONE SIDE WAS DONE/right side/-SO PURELY- JUST less of one INCH REMOVED! It is so painful! THE LEFT ONE IS KILLING ME- too,with so many symptoms! I KNOW THE SURGEON WAS JUST AFTER MY MONEY! LATER I FOUND,THAT HE NEVER DID NO EAGLES SURGERY! SO, THAT IS WHY, HE DID JUST REMOVED PRACTICALY NOTHING!
Forgive me, that I sound so desperate! My pain is just too much to handle! I rely fight…taking neurontin- but is loosing eficency and am sleeping all the time! Thank you so much for listening AND maybe you can advise me- which surgeon is the best and also kind and suportive!
Love and hugs my Eagle warriors! :cherry_blossom::herb:

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Welcome! We’re glad you are here!

A lot of us in the west see Dr. Edward Hepworth in Denver. He has been a godsend for me. I haven’t had surgery yet – still trying more conservative measures, as my symptoms aren’t as debilitating as some others. But if those don’t work, he will probably operate.

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Hi! I am so glad you read my post about Palatal Myoclonus. I just finished reading a book called “Connecting the Dots” by Sherri Jonas. I would highly recommend reading it! Her son’s PM was caused by Eagle’s Syndrome and although it is rare, I believe that is what has happened to me. She states in her book that it is the glossopharyngeal nerve that was compressed and causing her son’s PM. I have recently had Botox to slow the PM down , which it did, but all my other symptoms remained. This was extremely disheartening. I then came across ES and this book before being diagnosed with bilateral calcification of the stylohyoid ligaments that is consistent with ES. I am so grateful to have been diagnosed and God willing on a path to recovery. Now it is just trying to find the right doctor to see. Have you been diagnosed with ES yet?

Thank you for the information, Booper! I am currently trying to get in to see him or Dr. Samji. It is just a waiting game at this point and I think I will most likely have to get a new CT since the CT that discovered ES was a Cone Beam CT from a TMJ specialist. Now that I have an idea of what could be causing my issues, it is so hard to even wait another day to be seen. I am so glad to hear Dr. Hepworth is worth seeing! Can I ask what you have done to help your symptoms? What symptoms do you currently have? I would be so grateful to find anything that could at least ease my symptoms until I can be seen by a ES specialist. Thank you so much for reaching out to me!

You can’t go wrong with either of those doctors. The main thing Dr. Hepworth has done for my symptoms was to prescribe Plavix, which really helped with the dizziness and the spacey feeling. I take it for a few weeks when it gets bad, then I can quit for several months until it come back again. In general, my symptoms haven’t been as bad as many others in the group. The spaciness, because of the jugular compression, was the worst. Aside from that I have pain in both ears and behind my eye, but it is tolerable and I really don’t feel a need to take anything for it. And the tinnitus drives me a little batty, but there’s nothing to do about that short of surgery. I used to have throat pain, but that has disappeared for some reason. I have other heart, arm, muscle etc. symptoms that I don’t know whether to blame on the Eagles or something else.

Thank you so much for the info! I am glad you think highly of both these doctors. I will also look into trying Plavix while I wait to be seen. I to have the dizziness, spacey feeling along with awful pressure headaches. I will mention this medication to my headache neurologist as no other medication has helped me. Did Dr. Hepworth have you get a CT Venogram of the head/neck? I am unsure what to do because it appears that Dr. Samji wants a CT of head/neck without contrast in order to consider doing ES surgery and Dr. Hepworth requires a CT of head and neck with contrast. I am confused why they would want different scans for determining ES and potential surgery. Thanks again for your help! :slight_smile: