Hi everyone, What kind of doctor DXed your Eagle's syndrome? My most recent CTA shows my right styloid measures 4.3cm and my left is 4.0cm, and my symptoms are a "mile long". My GP believes I have Eagle's, but we are at a loss how to proceed. I was basically written off by one ENT surgeon only yesterday. Any insight on what I should do next? Thanks!
I was diagnosed by an ENT in Texas. He is the one who mentioned it. I thought I had an ear infection. He did a CT to confirm.
I were disgnosed by an ENT that suspected ES and ordered a CT scan aimed to measure the styloids
I hope you will soon get help and relief!
In terms of Google,try searching ENT/Craniofacial surgeon or look for head/neck surgeon in your area who is an ENT...honestly it's hit or miss on who an 'Eagle doc' and who is not. It might help to call ahead and see what they say if you ask about their familiarity with elongated styloid process or Eagle Syndrome. If you are willing to travel, we have some favorite docs here that we certainly would recommend that you see before anyone. :)
What was the reason the ENT didn't really buy into doing a surgery- did they say?
Thanks for your ideas!
My GP sent me to the ENT for both chronic sinusitis and Eagle's, but the ENT focused more on the sinus issues. Actually, he wouldn't really even entertain Eagle's...He didn't think elongated styolids were anything to be overly concerned about, and he kept trying to re-direct me back to my "sinus-related symptoms"...The whole appointment was very strange. I had seen his colleague two years ago who DXed me with labyrinthitis and migraine-induced vertigo. I'm wondering it he was trying to "protect" this colleague who obviously missed it???
I am scheduled to see a skull-based neurosurgeon the Wednesday before Thanksgiving, but after yesterday's appointment, I'm nervous...I don't know if I can handle another doctor implying it's "all in my head"...Well doc, yes, actually it is! ;-)
The only thing that keeps me going is knowing that a radiologist measured my styloids and their length has been documented and the results included on the CTA report, so now I have empirical evidence and not just my long list of symptoms and my research.
Don't let an Eagle ruin your Turkey Day! ;) You might go through a few docs, but it's only a matter of time before you find one- and I don't think a lot of time, either. You have the images and that is sometimes the hardest thing to get!
Tee, Thanks for your encouragement! This is all been going on for such a long time that I hope we getting closer...I'm so thankful for my GP/Physician's Assistant who has refused to "give up on me". He even called me after hours last Friday night when the "numbers came in" (the measurements)...It's been a long haul!
That's all you need; one person who REALLY really stops to listen, and who cares about what you're saying. These people are priceless!
It was an Oral/Maxillofacial surgeon that saw the styloids on a panorex and wanted me to be evaluated for Eagle Syndrome. Confirmed by an ENT.
I have had the sinus/ ear issues this whole time too. (vertigo, eustachian tube disorder etc.....)
I am breathing better out of the left side......noticed it same day of surgery( didn't expect that)
So happy that you have some one in your corner.......makes all the difference in the world :)
Keep at it and don't give up!
Seriously? Me too! Allergies in 2004...Eustachian Tube dysfunction in 2006...TMJ in 2008...Sinusitis, Labyrinthitis and vertigo-induced migraines in 2011...Vestibular rehabilitation in 2012...Now that we have started putting all the pieces of the puzzle together it's all starting to makes sense!
May I ask who performed your surgery?
Thanks so much, Sheila!
Yep! I've been there.....
I went down a similar road...... Chronic allergies/ sinusitis.....BPPV (did the exercises)..... possible Crystal loose (hitting the hairs in inner ear) Meniere's disease....... inner ear infections (antibiotics never worked)....... migraine associated vertigo..... Anxiety ( yeah right..... 4 1/2 yr chronic panic attack. I don't think so!!)....... TMJ (physical therapy, neuro/vestibular rehab...pure torture!!) Sent to dentist for bite eval to help with TMJ.
TMJ confirmed/ bite off 3mm to left/ still using jaw splint. (Lessened some symptoms but never took them away)
Thank God he sent me for an eval (with the oral surgeon) of wisdom tooth possibly pressing on a nerve. Fast forward to ES diagnosis.
Dr. Samji ENT (San Jose, CA.) did my surgery on Oct. 28.
Still in recovery mode.....It will be 3 weeks this Monday. :)
Oh yes, they threw Meniere’s around for a while too…then hormones…and of course “anxiety”. The ENT who “wrote me off” yesterday implied it was just anxiety too. If they could only walk a day in our shoes!
Congratulations on your surgery…Do you feel your recovery is going well? I hope you are comfortable and feeling better everyday!
Did you have to travel to see Dr. Samji? How long did you have to wait to get in to him? You are the second person I’ve “talked” to today that went to Dr. Sanji. I only wish CA wasn’t so far away from MI!
Thanks for sharing your story with me. It’s comforting to know there are others who have had similar experiences and that I’m not “alone”.
You take good care of yourself. Rest and get well!
I know right?! If only!! It seems if they can't figure it out it must be "anxiety". So frustrating!!!!
I think I am doing pretty good. I still have swelling and numbness... Told it would take approx. 6 weeks to for the swelling to go down to notice changes. The incision site is healing faster than I thought it would.
Yeah I told him he is becoming quite the "Rockstar" on this site :)
I got in for a consult in less than two weeks and scheduled surgery just over 2 weeks from there.
I live in CA. about an 1 1/2 hrs from him. I have "extreme" motion sensitivity and have to go over mountains to get there. All of which really flare my symptoms. (I go into full spins in the mountains) It took us 4 1/2 hrs...... I can only tolerate it for a short time and have to stop get out of the car and take breaks.
I wish it wasn't so far for you either. There is a spreadsheet on this site (by Emma) that should have someone closer..... Dr. Cognetti Is a name I see on here a lot too.
Yeah when I read quite a few of the stories it gave me a lot of comfort (and broke my heart to see so many suffering) too! However there is hope!! You are definitely not alone :)
Take care :)