US Doctors Familiar With ES, Current List

Good plan, Gwendolyn!

Just wanted to add my experience in Iowa with Dr. Van Daele at the University of Iowa Hospitals and Clinics. A week ago he removed my left styloid process externally, which is his preferred method/the method he has experience performing. Obviously I am just one week out, but so far my recovery is going well. For anyone in the Midwest, he is worth seeking out. I had all previous doctor appointments and symptoms well-documented, including notes from my physicians. I believe this helped. At my first appointment, he ordered a cat scan with contrast, seeking approval from my insurance first. It took one hour to wait for approval, but had cat scan that same day. Received results of elongated styloid processes bilaterally one week later. He agreed to perform surgery, but waited for insurance to approve it before scheduling. It was less than 6 weeks from that first appointment until my surgery. I am scheduled for post op appointment 6 weeks from surgery, which seems like a long wait, but I’m not making a fuss since my recovery is going well. I won’t know for sure if it reversed all symptoms for a while, as I would have acute nerve attacks in my throat at random. But I am keeping positive. Let me know if anyone has questions!

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Glad that your experience with Dr Van Daele was good, sounds like it all went smoothly! I hope that the surgery does stop the nerve pain, but be prepared that it could be a while for the nerves to settle. Some members have found they’re still improving even up to a year after surgery.
Thank you very much for sharing your experience , hope your recovery does goes well!

Anyone have any positive udates on NEW YORK doctors. Im in New york and am weighing my options. I would like to know if anyone here has had a ny surgeries with NYC doctors and has positive resuts.

Im looking into cognetti, but since im in new york its like a 2 hours ride from to PA. Im just looking for the best option in the NORTH EAST.

I went to another ENT yesterday (not listed here) and i mentioned to him about the previous docotor telling me about eagle syndrome, and this docotor just said “hes looking for a zebra”. He said because my styloids arent long enough, and just said to go back to the neurologist for possible neck nerves compressed (not the case since ive been like about 4 neurologists and thats negative) So… i need a reliable opinion in New york area…

2 hours isn’t bad if you do have to drive. As long as you have someone who can take the day off and take you there and back. I was in the car at 4:30 a.m. and home at 2:00 p.m. Downtown Atlanta was exactly 100 miles from my house. Well worth it for the right doc. :slight_smile:

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I had my right side external styoidectomy surgery done by Dr. Mark Delacure of NYU Langone Hospital in NYC 9 weeks ago. My first surgery was in PA and the ride back wasn’t bad but I wanted to be closer to home if needed for post op issues. Dr. Delacure’s team is very responsive and will get back to you within an hour or so if you have any post-op issues or worry.

His approach is slightly different then that of the PA surgeon but I am happy with the results (full disclosure - happy now that I am 9 weeks post op. The incision and nerve pain was very painful for weeks. Both surgeries had similar pain.)

The pain management was much better in the recovery room in NY while the PA team was very quick to move me along and out. Also, the PA surgeon only does the surgery on one day each month, which would have pushed me back two months for an opening. The NY surgeon can book you with the next available opening.

Dr. Delacure understands ES and is compassionate. If you do see him, tell him Teresa from Brooklyn said hello.

All the best!
BG

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What where your symptoms? Because I’m very confused as to weather it’s eagle syndrome or an affect from gamma knife 3 years ago.

The thing with me is that I have pain eyes, tinnitus, dizziness, nose, ears, face but I also have tingling in hands and feet and that throws everyone off when diagnosing me. For me it all started with a bad sinus pressure/pain the. My ears and then my throat and the face

I had a CT scan with contrast and that is how it was discovered - that was after many months and many doctors trying to find out why my throat hurt - did I have an infectious disease? thyroid cancer? Why did I get lightheaded? Why did I have nerve pain? Was it from the disc compression in my cervical spine? (I saw a spine specialist - he said my symptoms were NOT related to the compressed discs but he was willing to operate anyway!!!) Nines weeks out of my second surgery and it seems safe to say that it was ES causing most of my issues.

I too had bad sinus pressure and thankfully its gone. I had the left side removed first because the styloid was pushing on my carotid artery, which made my head pound with every time I stood up. That too is gone. I had and still have pain on top of my right eye but dissipating. Left side I had explosive cheek, molar and ear pain that came and went but that’s gone. Right and left side I had throat and poking pain - yep, gone. The right side of the top of my shoulder pain is clearing up. I still have tinnitus but was much worse after the second surgery. Thankfully, it is easing a bit. I have a sound machine for sleeping - well worth the $35!

I have a “new” symptom of the feeling of a nail being hammered into the top of my head, sometimes often and sometime rarely. When often its debilitating. I was checked out for a stroke. The pain is very intense and then it eases until the next bolt. I was prescribed 600 mg gabapentin 2x day but that was too much for me. I take 300 mg at night and half that during the day - it helps!

The recovery was not fun and I had crazy post-op nerve symptoms the first time and more incision pain the second time, but worth it because its mostly all behind me now. :sunny:

I pray that you find relief.:pray:

BG

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Im glad to hear that you are doing better. Did you throat hurt on both sides or on one side. Was it constant. form e its constant everything, but somtimes it gets worse all around.

At first i believed that everything came because of a viral infecetion, atleast thats what it seemed since my ears where full. But after that everything just kept spreading into all the symptoms.

I also went to infectious disease doctor, and they even put me on treatment for lyme.

What was your first symptom?

Hi Anthony8484,

ES symptoms have “good” (relatively speaking) & bad days i.e. they’re less some days & much worse others. This is very common.

I would take the opinion of the ENT who said you don’t have ES w/ “a grain of salt” (don’t believe him). I base that on the “looking for a zebra” comment he made. The styloids don’t have to be excessively long nor do the s-h ligaments need to be fully calcified to cause ES. As far as styloids go, extra thick, curved, pointed or twisted styloids that are normal length can cause ES. Each of us is uniquely designed so a small variation from normal in one person can cause huge symptoms where for another person it takes a big change from normal. Unfortunately doctors who don’t know much about ES get a specific idea of what symptoms need to be present as well as a specific length for the styloids before they’ll diagnose ES. I feel that’s the case w/ the ENT you just saw.

BrooklynGirl is our most recent forum member to have ES surgery w/ Dr. deLacure. Her other surgery was done by Dr. Cognetti, & as she noted, he does not prioritize ES surgeries in his practice but does make one day a month to do a few. Thus the wait to see Dr. Cognetti for ES can be long. It would be worth it to at least have a consult w/ Dr. deLacure. That doesn’t commit you to having surgery with him but will likely give you some good info that may help you decide what your next step should be.

For the moment, focus on the possibility that you have ES & if so, get that taken care of. It just might help your hands & feet, too. If their problem is unrelated, you can focus on that after the ES question is resolved.

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I agree Isaiah but is there a specific study that could be done in order to see the exact size, shape and if it is pressing against any internal nerves or muscles. Let me know because e y doc just had me do the CT scan without contrast and he said that’s all I need.

The CT will show the length, angle & width of the styloids, & from that there should be an indication of what they might be pressing on. A CT with contrast would show any compression of blood vessels, although not all doctors worry about that. Unless to you were to get a very fancy fiesta MRI which can show details of nerves (but not heard of anyone having this for ES diagnosis, have only heard of it being done to diagnose compression of nerves for an MVD procedure), the scans won’t show if the styloids are irritating nerves.
A regular CT is all most members have for diagnosis.

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Sometimes it is best to ask to have the measurements of the styloids specified on the report and most centers can now make a 3 D version of the regular scan. If they do not, I believe Microsoft 3D Slicer is still free to download on Windows 10 computers and you or someone tech savvy can follow the tutorial that is posted on this site and look at the 3 D image for yourself. One thing though, you need a copy of your CT scan, and you cannot save the 3D image on your computer, but you can take a picture on your cellphone. I did that and had the image on my phone. I downloaded to my desktop and made paper copies. You really do not need to have a perfect image.Mine was not professional and showed " noise" weird streaks from fillingss in my teeth and my spine looked severed because we could not get a perfect rotation. Still the styloids showed a dramatic perfect picture of the problem. I would attach it, but I wrote too much personal info on it.

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Oh thank God! Dr. Nalwa is on this list!! He will be performing my surgery on Tuesday. He is now in Wausau Wisconsin. This is such a relief that his name is here!

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Surgery in the morning with Dr. Nalwa. I will keep you posted all you Eagle’s out there:-)

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Hi. Just want to let you know For CT Dr Chen doesnt do surgery or very knowledgable about eagles. He told me eagles didnt cause headaches. Dr Judson is no longer handeling eagkes only cancer.

Its easier to get help for cancer then this. Im so discouraged. :cry:

I’m sorry to hear that. I have removed them from our list. CT is now ES doctorless. :cry:

Dr. Brian Jian (Neurosurgeon) and Dr. Balough (Neurotologist) from Kaiser in Sacramento, CA are the two surgeons that will be performing my surgery. Dr. Ji (Neurosurgeon & Neurointerventional Radiologist) at Kaiser is also involved. My appointments started with Dr. Ji and Dr. Jian first. By the way, in case you aren’t familiar, a Neurotologist is and ENT that has specialized in neurological conditions of the ear related structures and lateral skull based surgery.

Thank you for the information, Joy. We usually wait to add them to our doctors’ list until we know a surgery has been successful for our forum member but I’ll add them now pending your outcome. If for any reason you’re dissatisfied with your outcome, please let us know. We do ask for no negative posts that name a specific doctor, but you can privately email Jules or me if you have something to report when the time comes.

I hope all goes AMAZINGLY WELL for you! :pray:

That makes sense. I know they have done other surgeries like mine, but either way, I will keep you posted. Thank you for everything!