Happy New Year! Going to keep this brief, but ultimately I’m looking to see if anyone on here has experience with sending scans electronically to either Dr. Cognetti or Dr. Samji. I saw a doctor at the Cleveland Clinic but did not have my hopes up as everything I read about him said he typically only “believes” in classical Eagle’s, and since I don’t have monster styloids, he was very dismissive of my case. I have been experiencing increasing jaw and neck pain, soreness at the back of my tongue, and most debilitating and the reason I’ve been spending all my time at doctors offices: vocal dysfunction. My voice spasms so much now I resort to primarily speaking in a hoarse whisper, which of course has made life extremely difficult for me. The Voice Clinic has been stumped by my case for a long time since I’m not exhibiting classic muscle tension or spasmodic dysphonia symptoms, but they are planning for botox to see if it helps. I’m going on my 5th scan, one of which yielded the result of a “calcified digastric muscle”, which made a LOT of sense to me, but the doctor told me that radiologist had it wrong and “I’m going to drive myself crazy focusing on the digastric” And “at least I don’t have cancer.” ANYWAY, hoping to send my 3D scans to the top two doctors I’ve read about on here just so I can be sure that’s not really the issue. I live in Ohio so having the possibility of virtual correspondence would be most ideal!! I’m only 28 and hoping I can find answers soon so I don’t go down the negative rabbit hole of thinking this will be my life forever. Thank you in advance!!
Sorry to read about your experience, that is very frustrating, what a waste of time…
Lots of members have sent their scans to the doctors you’re thinking of, so there have been discussions about that- you can search for those. I think one went into detail & was called ‘Non contrast styloid protocol’, sorry but I can’t post you the link right now to save you time!
Hope you get sone answers from Dr Samji or Dr Cognetti.
The other info I have to offer is that, even though Dr. Cognetti is closer to you, he does not make ES or ES surgeries a priority in his practice so you may have a bit of a wait for a virtual consult w/ him. Dr. Samji prioritizes ES cases thus you will be more likely to get a consult w/ him “quickly” (a relative term here). That said, either doctor will be a fine resource for you. Dr. Samji in particular will require a CT scan without contrast to do an evaluation of your ES.
Please keep us in the loop as to how things go for you & know we are always here to answer questions & give support.
Thanks all for the responses - so that Washington Post article is actually the whole reason why I found this forum in the first place and pushed doctors to order scans for me! I’ve had a CT of the skull base without contrast, a CT of the facial bone& mandible without contrast, and CT of the soft tissue in the neck w IV contrast. I’ve also had an MRI of the upper cervical spine and am receiving another of the brain this weekend to see if anything neurological is taking place. The doctor that reviewed my CTs is very insistent it is a “clean scan”, and I believe I mentioned the hyoid as well. Looking for a second opinion, and it sounds like Dr. Samji is the best bet. Going to try and call this week to see what the process is for sending scans electronically (if anyone has advice for that/has already been through that process, let me know!). I’ve been to a number of neurologists to discuss the vagus nerve, but since I still have a gag reflex, they seem to think “everything is fine.” Since I am scheduled for Botox at this point, I just want to make absolutely sure I am treating the culprit as well as the symptoms - I desperately need my voice back, but it would be so terrible if more symptoms showed up/worsened because of calcification, like the woman in the article. Trying to feel less hopeless in the new year but it is hard! I hope everyone is doing okay and that you have a good year ahead.
You will get a quicker response from Dr. Samji’s office if you email his medical assistant - lauren@caminoent.com - than if you call. This is based on my experience w/ that office which now spans 5+ years.
Hopefully the CT of your skull base shows the area between skull base & hyoid bone so both the styloids & styhlohoid ligaments can be seen. In the absence of elongated styloids, calcified s-h ligaments also cause ES symptoms & are classified as ES so Dr. Samji will want to be able to see those, too.
Hi Alaska - I’m so sorry to hear about your struggles and the trouble you have had finding out what’s going on. I feel like I’m in the same boat as you. I don’t have any advice regarding ES but because my symptoms are very neurological as well and I’ve developed a bit of a movement disorder I’ve discovered a dr by the name of Joaquin Farias. He helps a lot of people with movement disorders recover through neuroplasticity and movement therapy. He has a whole online learning program. Spasmodic Dysphonia is considered a form of dystonia which is a movement disorder. He has a whole program to follow online to help retrain your breathing and your voice. I am using his facial exercises and neck exercises. You can use anything that you think applies to you. Once you are in the forum you can access everything. So if you feel you neck is a problem you can access those exercises too. There are eye exercises to help with balance and movement and music all designed to help bring more synchronization to the brain. There are breathing techniques to calm your diaphragm. All geared toward the vagus nerve. If you google his name his website should pop up and you can see what he is all about. I wonder if any ES patients who have just had surgery might benefit from his gentle exercises and brain retraining. Esp the facial exercises in case there is temporary paralysis. If you choose to join the forum to access all the exercises is about $35 a month but if you are interested you can read his website and see what you think about him and his philosophy first. I’m only in my first month and these things can take alot of time and commitment but I am fascinated by his program. It is geared for people with dystonia like I said but because you mentioned spasmodic dysphonia I wanted to pass on his info. If you are interested you can always join for a month and if not for you you can cancel. Anyway, I hope you start getting some answers and I wish the very best to you.
HI Alaska,
I had CT scan done on December 30th and at that time signed a release to mail Dr. Samji a CD for review. I did email Lauren who sent me a patient questionaire and asked for a brief BIO. I also had to send them a copy of my insurance card as initial consults cost $500. My insurance covers it. Dr. Samji reviewed my scan in under two weeks, confirmed I needed surgery this past Monday and I have a consult with him Feb 4th. I was surprised at the quick turnaround and evaluation. I could have a phone consult but live in Seattle and got a RT flight for $115. Im choosing to go meet him in person as I like to meet docs in advance of cutting me open and cost to fly there so low.
I noticed many of us have been diagnosed with various dystonia’s. Me personally cervical dystonia, now eagles. When I had my most recent flare (left side) around xmas, it was 7 weeks after have botox in my neck/jaw and ear area, I had a new symptom. My left eye started to run and then as it worsened, my left sinus started to run. This on top of feeling like an elephant sitting on my left temple. Dr. Samji says I need surgery on right.
I saw my oral medicine doc yesterday and when I explained the eye and sinus running he said I had a “parasympathetic” response to the pain. This appears to be connected to the vagus so I think you are on to something Annieloo. My research shows retraining to try and control these responses through types of meditation, biofeedback, exercises to retrain brain and other methods. Easier said than done. My tried and true efforts of controlling acute pain flairs and muscle spasms with steriods (rarely),chiropractic, acupunture, massage and occupational therapy. I finally just found an osteopath doc that does craniel sacral work and she says my teeth and jaw locked up which we are starting to work on. Craniel sacral work is very gentle and subtle work. I have found it to be powerful and so glad to find a good practioner. None of these efforts worked this last flare. My MRI show nothing too but the oral medicine doc suspects something cervical in soft tissue pressing on nerve. This in addition to the Eagles. I have calcifications too. I m looking forward to hearing what Dr. Samji says about all this. My hope sure is that if they remove all the calcifications these symptoms go away.
A word about Dr. Samji - He will not attribute all the things you listed above to ES. He will tell you that they may or may not be related, but I suspect he’ll most likely suggest they are not related. The proof of their relationship to ES will come after you’ve had both your surgeries. If the pain & other symptoms (tearing eye, runny nose, dystonia…) go away then you know you were right. If they don’t, well then, maybe he is. I had some oddball symptoms that I was flat out convinced were related to ES. He said nope. In the end, they did not disappear, so they are either the result of nerves that suffered damage from ES that haven’t fully recovered or they were unrelated as he suggested.
In my opinion, what you’ve mentioned above definitely sounds like it could be related to ES. Just sayin’…
