It’s been quite a while since I’ve posted anything. I’ve had a lot going on and seems like anything related to Eagle’s diagnosis or treatment is an extended process.
Things that have me perplexed:
I have multiple CT scans that show elongated styloid’s and calcified ligaments.
My symptoms align with symptoms I’ve read about and other’s have shared in this forum. More recent months I started having severe pain from my neck into my shoulder and arm. I knew I had a tear in that rotator cuff so between my neurosurgeon and ortho doc we decided to repair the shoulder hoping that was the cause of the pain. Unfortunately, I’m 3&1/2 months out and continue to have terrible pain that radiates down my arm and up into my ear, jaw and temple. My eye on that side has started drooping as well. Pain management thought maybe it’s due to some stenosis I have and did an injection. I really don’t think it’s my spine. The pain is u like anything I’ve had in the past related to my spine. This pain is shooting causes a stinging/burning sensation down the right side of my throat. Pressure up the side of my face. Shooting pains into my shoulder and down my arm. It all starts from the point of my styloid which is very tender and swollen.
I shared this information with an ENT I met with several months ago that was kind of aloof in diagnosing me with Eagle’s. In other words he was kind of like yeah, you’ve got ES but didn’t seem convinced himself. It was at a location mentioned in our doctor’s list just a different provider there. I followed up with him when these newer symptoms came about and he referred me to a surgeon in his office who he says is familiar with ES. When I met with that surgeon he pretty much stated my anxiety is the cause of my symptoms.
I’m not sure what I’m missing? I’ve seen one ENT that told me most ENT’s don’t believe in ES. However, he did not have any experience with it so I chalked it up to lack of experience and found the one in the doctors list in this forum. The first surgeon I saw told me I didn’t have ES and even if I did she wouldn’t operate on me. Now this current surgeon tried to chalk it up to my anxiety. Even being a former nurse I’m not good at advocating for myself as I was for my patients, so I’m not sure if it’s my communication or if the specialists I’ve encountered so far don’t have any or enough experience to properly help me. I’ve asked for vascular testing as well because I have syncopal episodes and was sent to a vascular surgeon that had no idea what I was talking about so I can’t get the proper testing.
I’m at a loss as to where to go from here. Every specialist I see deflects my symptoms to another speciality and I feel like the ball in a pin-ball machine. I’m already driving back and forth a few hours away for these appointments and it’s discouraging to make the travels and find nothing. I’m afraid to see someone in another state only to get the same answers. I really just don’t know what to do.
@aholtswarth - I’m sorry that you’re having a struggle finding someone to properly help you. We’ve had a lot of inconsistency w/ the doctors on our list from your state being willing to help patients w/ ES thus many of our members from there have traveled out of state for opinions & surgery. Dr. Hackman in NC has often been their “go to” as he extremely experienced w/ ES & ES surgery.
Based on the symptoms you’re having w/ your shoulder, I’d say your spinal accessory nerve is extremely upset & most likely it’s your elongated styloid causing that. The accessory nerve can cause the type of pain you’re having. In this image you can see the course of the accessory nerve (CN XI) which is often irritated by ES. You can see that it affects the areas that are causing you the most trouble right now:
Accessory nerve:
The pain radiating into your ear jaw & temple sound like trigeminal nerve pain which is also quite common w/ ES, & the eye droop could be caused by your facial nerve which is also commonly irritated by elongated styloids. The glossopharyngeal nerve & vagus nerve can be responsible for the stabbing throat pain.
I hope seeing these images helps you better understand the sources of your pain. You could have a consult w/ Dr. Cognetti in Philadelphia as he does virtual consults. That way you wouldn’t have to travel. He’s been on our Doctors List for a very long time & is continuing to help our members.
Thank you so much for all the educational information and suggestions. I agree it’s my accessory nerve. My SCM is extremely irritated as well as all surrounding muscles. My neurologist is doing some Botox injections for the muscles in my neck because now I have cervical dystonia. I believe the eye droop is from the cranial facial nerve as well. I’m just not sure if I’m not explaining my symptoms appropriately or clearly or what the issue is but I feel like the four providers I’ve seen think I’m crazy.
I’m so sorry that you’ve been dismissed by all these doctors, it’s so crazy when you have a CT showing elongated styloids and calcified ligaments, and symptoms explained by ES- unfortunately we do hear of doctors, even some who have done successful surgeries for some members, who have a fixed idea of one or two symptoms which you must have or it’s not ES!
It does sound as if you might have to accept travelling out of state, although @Katflorida has suggested Dr Bruce Haughey in this discussion: Anyone have experience with Dr. Rui Fernandes or Dr. Anthony Bunnell in Jacksonville, Florida? - General - Living with Eagle
Not sure who you’ve seen so far! Hoping you get somewhere soon, we do suggest sometimes that members print out research papers which support your symptoms, which might give you the confidence to argue your case, or otherwise do you have someone who could go with you to advocate for you?
Are you consulting with the Drs in this group? Most ENT’s are not knowledgeable in this disorder. I ended up getting a 3 level fusion when it was IJV issue the entire time.
@aholtswarth - If you’re anywhere near Dr Hackman in North Carolina it’s worth the trip to get referred to him. He listens and will help u if you have eagles. I went to various ENTs and left feeling like they did Nothing for me. As soon as I went to Dr. Hackman there’s no convincing him if u have a ct that shows eagles. I had surgery 4 months ago and am still having some problems but better quality of life than I was. Dr. Hackman is still working with me through problems (phone call visits). It’s was a 5 hour trip for me and he takes insurance.
Hi, First sorry for your pain….my pain started in the dentist chair and after years of treatment for dental issues, TMJ and atypical facial pain I received my bilateral Eagles diagnosis. With the first side successfully remove I request second side to be taken out. I was then told it magically disappeared and sent for more TMJ treatments that were a failure. Went to a second doctor and told there was nothing wrong the styliod disappeared and they could not find it. 4 years later, having hip and back injections and unable to lift my arm I got a new ct of my neck, gathered my past 4 cts and hired a malpractice lawyer. They verified my styliod never disappeared my cts had all been miss read. I went back to my original doctor with all the cts turned into 3D and asked how he, his radiologist and assistants could have made such a grave mistake. I had surgery 2 weeks later and 95 percent better. I would find an experienced doctor and get another opinion. I lost at least 10 years trying to get a diagnosis and both surgeries…,and often told it was psychological……my symptoms did not match Eagles and I should try other therapies….i miss spent about $40,000 on dental work, therapy and TMJ bite guards and treatment….all with no relief. Wishing you hope in finding your solution….there is hope!
Hi @ann, thank you so much for your story. I’m sorry you had to go through such drama and Mis-guidance but thankful you round away forward. I just had a query about your reference to your hip. Did you find that your hip was affected by eagles? I get this nerve pain in my right hip/groin/lower back (it’s constantly moving) and thought it had nothing to do with my left sided eagles. Keen to hear your experience if you have time
Have you had your hip x-rayed to check for arthritis or dysplasia, @BraveKat? I had similar symptoms for several years & finally went to an orthopedic doctor who sent me for an x-ray that showed I had arthritis in my hips. Several years after that when the pain was worse, I was diagnosed w/ hip dysplasia which is usually caught in infancy.
Hi @Isaiah_40_31 Thank you, I am waiting to see a specialist mid next month and am working on it at Physio. I had an injury about 15 years ago (landed on it when diving to score a goal in hockey) which I’m thinking could be the main culprit, but strangely noticed this past week during a flare up of pain from eagles during recovery that the nerve pain in my hip also returned. Could be coincidence or simply that the exercise that has pushed my neck a bit too hard also pushed my hip too hard. I’ve had a few rest days and noticing both areas are calming down in terms of pain. Yesterday marked my 3-months post op. Definitely having some better days now but the incision is still very tight and anything slightly strenuous (like swimming) pushes the wound too far. Constantly learning lessons haha.
I’m glad you’re following up on your hip specifically. I hope there’s nothing untoward going on in there that physical therapy can’t help. I ended up w/ bilateral hip replacements but that was after 12 years of long distance running w/ imperfect hips. I wish I’d known I had dysplasia years before as I would have done less mileage & more to save my hips.
Are you massaging your incision area several times/day w/ oil or lotion to prevent friction between finger tips & skin? You can also do gentle neck stretches at this point by leaning your head away from the incision site till you feel a gentle stretch (not pain!) & hold it for a slow count of 5-10 then relax. Repeat several times & do this as often as you think of it. I’m glad you’re noticing some more positive changes now. Recovery from ES surgery is slow & you had a lot going on in your neck. Time will continue to help with healing.
I’m glad that you are noticing some improvements @BraveKat , it’s been a while coming…maybe you can get everything addressed & fixed at the same time & be as good as new in a few months!
I can completely relate to this story… as can many others here. I was diagnosed 10yrs ago and just now am I going to be scheduled for surgery. I have essentially identical symptoms to yours today. I went for a consultation with surgeon today and they of course send PA in at first and she tried to say there must be a TMJ component going on… that was the very first thing ruled out by my dentist yeard ago… she tried palpating my tonsil and didnt feel anything because some are too shy to dig in there… anyway… it sucks we have to experience the most ultimate medical gaslighting by those that are supposed to help us. Dr. Karni came in after and he was great. He found my “pokey stick” as he called it and is offering surgery… finally after 10 years …
So glad that the PA didn’t send you on your way & that you were able to see Dr Karni! I hope they learn from this experience, & don’t dismiss people in future!
