Hello all - My name is Stephanie and here is a bit of my story:
Hi - I am 50 years old (as of a couple of weeks ago) and I have struggled for about the past twenty years with a lot of confounding symptoms including persistent vertigo that can at times become suddenly much worse, headaches, facial pain, jaw pain, neck pain, shoulder pain, sometimes a tremor, numbness in hands and face (comes and goes), brain fog, generall feeling of being “under water” (don;t know how else to describe this), autonomic dysfunction, fainting etc, I could go on and on. I have been a single mom for the last 18 years and my girl is now 20 and is a great help. I still work full-time and am fortunate enough to make enough income that I have been able to pursue a lot of different alternative treatments over the last three years (following an abrupt worsening of symptoms). I have been on a mission, determined to get to the bottom of this thing. Like many of you, I have been seen by a variety of different specialists and have been dismissed often or offered more pills when they don’t know or don;t care to know what the source of all of this is. I finally ended up at an orthodontist a few days ago to seek consultation about my tmj, my bite, my narrow palate, etc thinking this was maybe the next thing to rule out. She did a panoramic xray and pointed out what “looks like” Eagle Syndrome and suggested I pursue this. After doing some research, I am feeling slightly excited at the notion of surgery (which is irrational, I’d say). I am actually able to feel the styloid through my left tonsil! which most of my pain is on the left side. In short, I think I may finally be on to something here. I am not sure it will explain all of my symptoms but if I can just get rid of the every single day of head, face, neck pain, I would be very, very happy.
My immediate question is have any of you had surgery in Boston area, specifically at Mass General? Or even in Maine (where I live)? I am self-employed and don’t have great insurance. Mass General is on network while BU and Lahey are not (as I see the drs on the list from those two facilities).
Also…if I have to look on my own for a surgeon at Mass General, what kind of surgeon do I need, especially if my ES is of the vascular type??
Thanks so much for your help and for this site!
If you have time to read about the symptoms in the Newbies Guide, you’ll see that your symptoms have been experienced by others, & can be caused by ES. I used to have the underwater feeling, & lots of pressure in my ears- I had vascular ES & both sides were compressing the jugular veins. It’s so much better after surgery! (A CT, preferably with contrast, would show if any blood vessels are being compressed, & would be helpful to get an ES diagnosis. I’m in the UK though, so can’t help with insurance question, hopefully others will give advice.
The best outcomes for surgery are when the styloid processes are removed completely to the skull base, so a good surgeon to look for would be an Otolaryngologist/ Skull Base surgeon. A neurovascular surgeon if they are used to operating on the head/ nack area would also be a good one to try. Alot of people have surgery with an ENT, but some operate intra-orally (through the back of the throat) & that doesn’t always give them enough room to take the styloids back to the skull base, so you should check that out if you find someone who’ll see you.
Stephanie, have you tried using the search feature (magnifying glass, upper right) and keyed in “Boston?”
Thank you so much! Very helpful! Feeling so tired of this battle.
I will! Problem is the two bost6drs on the list are out of network for my insurance so I have to go with someone at mass general, which is a very good facility. Just need to find the right dr
When you make an appt w/ a doctor at Mass Gen., make sure to take support materials w/ you. There are links to ES research articles in the Newbies Guide. Any link that has info supporting your symptoms is worth showing to the doctor you see. You’ll have to do a bit of “homework” but the end result may be less frustrating. Even doctors familiar w/ ES are sometimes dismissive of symptoms that are related but fall outside of the box of “expected symptoms”. Some will even refuse to operate even w/ a positive CT scan if the proper symptoms aren’t being experienced. Go prepared to make a good case for yourself.
I agree,I’ve been turned away by 6 Doctors so far because no Doctor wants to do my surgery I finally have an appt.Feb.8th with a doctor that mentions Eagles Syndrome in her bio and has dealt with and treated patients with it and has done the surgery .So let’s hope for the best ,I cannot bear to live like this much longer:neutral_face:
Thank you Isaiah and Andrea. I have been dealing with symptoms since my daughter was just a few months old when we had flown from the west coast to the east coast and when we got off the plane, with her in my arms, everything was rocking and moving up and down, etc. (along with chronic headache of course). Symptoms have gotten worse over the years and additional symptoms have shown up when I have become abruptly worse periodically, etc.
So…I have dealt with my fair share of dismissive doctors who can’t get beyond their own egos. And I have been offered many different heavy duty medications along the way and drs become frustrated and sometimes scold me for refusing them. I started aggressively pursuing the source of all this three years ago when I had what I think was a little stroke while skiing (although the MRI/CT was “clean”). I have two files full of info and have collected all of my test results along the way. Sadly, we must manage our own care when there is something serious yet invisible going on. I don’t know why drs can’t simply admit that “we”/they truly don’t have the answers to all symptoms. Seems that if they did, that would make more room for learning from the patient and moving forward.
Anyway…I think I found an otolaryngologist at Brigham and Women’s that is within my insurance network. She has Eagle Syndrome listed within her profile so I am going to begin with her and see what happens. I will keep you all posted.
After I finally relieve this daily face/jaw/head pain, etc. (which I am hoping the surgery will do), I am going to wok with my integrative doctor to perhaps figure out “why” this calcification happens. Maybe there is something we all could be doing in a preventive way to keep this from re-occurring?
I will keep you all posted and good luck on your own journeys!
Good luck with your upcoming appointment Stephanie! I’m having surgery in January 31st with an ENT that specializes in head and neck surgery. He is doing a robotic intraoral because they are able to fracture the styloid closer to the skull than if they used their hands. I hope you find the right fit for you and get some relief from your symptoms.
So glad to hear you have someone who might be able to help. I’ll say a prayer that she will be proactive & the wheels will get moving in the direction of resolving this for you.
Thanks. I have an appointment with and ENT/surgeon type in Boston Feb 9th. I will keep you all posted on results.