Thank you for this list!
My doctor was Dr Arnold at the University of Miami. I was diagnosed with ES by another doctor and referred to Dr Arnold for surgery. The surgery was successful but I still have nerve damage in my trigeminal nerve. I doubt it will ever fully healed but I am no long at deaths door. I would recommend Dr Arnold if someone is thinking of surgery in the south Florida area.
Thanks ann; he’s on there, I’ve added that a member had successful surgery with him. I still have some TN pain post surgery, controlled well with medication, I can only presume the nerve was damaged by the styloid. I know that it’s better than it was before & at least not getting worse like it was- hope yours does too…
Thank you for update.
Just want to mention another specialist in New York City familiar with ES.
Dr. Catherine Sinclair, MD, Head and Neck surgeon at Mount Sinai Hospital.
She finally was able to confirm my ES at the appointment couple months ago. She proposed surgery with optional extraoral or intraoral approch, and sounds to be experienced with both. With intraoral approch she said that she may be able to keep tonsil and go around it.
Anyway, I’m gonna take second opinion before I go forward with surgery.
I generally vote for the external surgery because all of the styloid & s-h ligament can be removed which helps prevent regrowth/re-calcification. The intraoral approach provides less access to the area.
A second opinion is an excellent idea! Hope you can find someone near you. If not a phone consultation w/ Dr. Samji, Dr. Cognetti or Dr. Milligan would also do the trick.
I have an ENT surgeon I’m working with in NYC at Weill Cornell. He is a known head/neck surgeon but he has only done 3 ES surgeries in his career. He would want to do the intraoral approach and said that he could do it would out a problem. I am now waiting for Dr. Cognetti to review my scans, then to get back to me. (fingers crossed)
My PCP did a search for doctors who are know for ES surgeries and Dr. Sinclair did not come up.
All the best,
I’m going to PA tomorrow. It’s sounds like Dr Cognetti is one of the most experienced ES surgeon on East Coast verified by this community and has lot of successful styloidectomy surgeries. That what I was looking for. Thanks a lot for advise.
I have partially calcified ligaments on both sides, so I think surgical approach is not in doubt in this case.
On the other hand, my left styloid (angled, 60mm long) somehow almost sticking out on the side of my tonsil, I can fill it and even bend it with my tong. So it may be easy to trace it with intraoral. Also have some old stones in my tonsil that maybe make sense to remove. I hope tomorrow Dr Cognetti will help to clarify all these things.
Dr. Cognetti is very experienced. I’m sure you’ll come away from your appointment feeling much more clear about your surgical choices & what needs to be done to alleviate your ES pain & symptoms. Having both an elongated styloid & calcified ligaments indicates to me that you will have greater success w/ external surgery as both can be accessed that way. Intraoral surgery doesn’t provide for much ligament access.
Does anyone have personal experience with Texas surgeons? If so, any details are helpful. Thanks.
Has anyone had experience with Dr. Chheda at Shands Hospital in Gainsville Florida? I already have a preliminary diagnosis from and ENT and have been referred to Dr. Chheda. Thanks in advance.
Hi gr8fulgirl777 - Dr. Chheda is not listed on our US Doctors’ List, therefore, I will speculate that you’re the first person to talk about him in a post & perhaps to see him. If you get no replies to your question, and you do go see him, we will rely on you to let us know if your experience was positive & supportive or something less than that.
Remember that going into an appointment w/ the following will serve you well:
• a list of your basic symptoms (not every little thing you think might be related to ES)
• an understanding of the full definition of ES (many doctors limit the definition to elongated styloids) - Definition: Elongated styloid process(es) OR calcified stylohyoid ligaments OR a combo of the two. Variations on that theme can also be normal length styloids that are extra thick, twisted, pointed or curved which cause ES symptoms.
• any questions you have about his surgical approach for ES i.e. outpatient, inpatient, type of surgery he does, recovery time expected, etc.
•being informed about the two types of surgeries used to help “cure” ES symptoms (introral - via the throat or external - via the neck). In general, I am more in favor of the external approach because I feel it’s safer (vascular tissues & nerves can be seen & monitored during surgery so they can be moved out of the way to help prevent damage) & allows the styloid process to removed to the skull base & the stylohyoid ligament to be removed to the hyoid bone if necessary). Intraoral surgery provides little if any visibility to nerves & vascular tissues & w/o multiple incisions in the throat, does not allow for much more than shortening the styloid process but not removing it completely. It also provides little or no access to the stylohyoid ligament if it’s calcified as well.
You may have thought of other questions you’d like to ask, I just wanted to give you some basics.
I hope this is all helpful.
Thank you for the email,
I appreciate the feed back. I will keep LWES informed as to how my visit goes.
Thank you! We will look forward to hearing what you learn.
Bumping this up!
How did things go for you w/ Dr. Chheda?
Wow Thanks Jules for getting this out. Lots more info these days.
I am in Seattle, Washington.
When I mentioned Eagle Syndrome both my pain specialist (At the University of Washington), and my ENT (at Swedish) initially suggested Dr. Albert L. Merati, UW Medicine. I believe he might do intra-oral (transoral?) as the ENT indicated he removes tonsils, but I don’t know. His reviews are good. Edit: I did read that external surgery is preferred, so I chose the recommended physician here
However, based upon the recommendations here, I requested a referral to Neal Futran, MD, DMD ( I had also written to an ENT surgeon at the UW I saw a few years ago (Allen Hillel, he works with speech/opera singers). He wrote me last night and also recommended Dr. Futran.)
I am trying to get an appointment. I will keep you posted.
Thank you for this information. We generally wait until after a member has had a successful ES surgery w/ a doctor to add that doctor to the list. It would be AWESOME to get a reliable ES doctor on our list for WA! I hope one of these works out for you.
The only caveat about intraoral surgery is that you need to make sure the surgeon will remove as much of the styloid process as possible not just cut off the tip. New intraoral techniques allow the styloid to be removed at the skull base (best scenario) & the stylohyoid ligament to be removed if necessary. If the surgeon you see says he only shortens the styloid, ask how much he shortens it & if he smooths the tip off after cutting it back. This is important to know. External surgery is what we prefer because it allows the surgeon to see & monitor the nerves & vascular tissues during surgery to help keep irritation to to them a minimum. Healing is a bit quicker w/ external surgery as well. Both intraoral & external surgeries have good outcomes if the surgeon doing the surgery is reasonably aggressive in removing the styloid & the stylohyoid ligament if it’s got any calcification on it at all.
Thank you! I did edit my post to indicate I know external is preferred (I read the study), and that I chose Dr. Futran as he is on the list here. If he won’t help, I will probably contact Dr. Sanji.
Good plan, Gwendolyn!