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Eagle Syndrome - Online Support Group

Anyone here from South Texas?

I knew mt83 was from the same location but unfortunately I can’t seem to get a hold of him. I don’t think he gets on anymore. I’m trying to find a local doctor to consult and reach out to someone who’s had experience with a local doctor.

Hi melb777,

Here are the doctors on our US Doctors’ List who are in your area:
Dr Richard Newman, ENT Clinics, San Antonio (Otolaryngologist, Head and Neck surgeon) https://www.entclinicsofsa.com/
Dr Newberry, SAMCC Army Hospital, San Antonio

I hope this helps!

Dr. Newman does not do surgery anymore, I have been to him. Also he is not a big supporter of ES. I live in The San Antonio area and had zero luck in finding anyone. That’s why I grabbed onto dr. Samji in California. I had become desperate.

Thank you for your reply. Geeze it’s tough finding someone.

U can try seeing Dr Cherl Braud in Baton Rouge,La for a diagnosis. I Showed her my ct scan. She sent me to Dr. Nuss here in Baton Rouge. I am recovering from my second external surgery in 6 months. I would not start with Dr.Nuss because he is a cancer surgeon and very good,but I think Dr Breaud would help you especially if I give you my personal info. Actually, my CT came from Dr. Samji,but he would not redo my previous intraoral. He was willing to take out the other side, but my pain was on the original side. Dr Nuss believes in styloid and stylohyoid involvement and saw the problem because,he noticed the thickness of the remaining styloid. He was closer to home for me.
I am pretty sure that you could convince Dr Breaud to do a CT scan for styloid and measurements,maybe even with 3D. But Dr. Samji may order one from an imaging place near you and consult with u over the phone. He charges,but my insurance covered it.
Either way message me if you want. Also, if you can get to a good orthodontist or oral surgeon, you can get a panoramic CT scan. I do not recommend an oral surgeon for the surgery unless you want the intraoral surgery.

Thank you Emma! Louisiana is definitely a lot closer for me. Your message gives me hope on getting a diagnosis and possibly surgery from people who believe us and our pain. Knowing he does external surgery is good too!

Forget Houston, TX!!! I lived there for 37 years and when I got the first symptoms of ES, I did my rounds there. It took 17 years but, I had to move up to OKC to get diagnosed. I was always being told that I was depressed, I was having post partem depression because it happened right after I had had a baby on Dec. 8, 1987! The first sensation of a bone in my throat was on Dec. 24th, 1987.

It was the worst day of my life…and it was hell from that moment on. I was finally diagnosed with ES in 2004. Long time to finally get diagnosed. Where are you, in Texas? I was born in Corpus Christ, lived there for 13 yrs. and moved to Houston

I’m actually right outside of corpus! :blush: small town, Mathis. Yes I’m trying to find a doctor now. Before I feel worse later on. It’s been tough here in Texas though. Do you know of any doctors in OKC still treating abs doing surgery that actually believe in ES?

Mathis? Wow, my best friend from HS was from Mathis, TX. We met at Pasadena HS in Pasadena, TX. She is now in Largo, FL. and I am here in Edmond, OK. I moved her in 2008. It is here that I finally got diagnosed by Dr. Greg Krempl at OU Physicians. I just saw him back in January to make sure everything is okay.

He is on the list of physicians on this blog. I asked him if he could continue diagnosing ES and he said, Okay. You have to call and set an appointment because he is booked at least 2 months.

I meant to say that I moved to OKC back in 1997.

Dr. Ron Karni, ENT with UT Physisicians will be doing my surgery at MH in houston. He does a couple a month, was very knowledgeable, great bedside manner. He’s expertise is neck cancer… he’s in there a lot. Private message me for more info.

Thank you so much for this info! I private messaged you.

Thank you for this info! The more the better!

Hi premedmom!

Welcome to this wonderful forum!

Thank you for the information. Can you please let us know how your surgery turns out as we’re always looking for new but experienced ES doctors to add to our ES Doctors’ Lists.

Just curious - will you be having intraoral or external surgery? Do you know what Dr. Karni’s plan is as far as how much styloid process/stylhyoid ligament he removes?

Glad to hear you’ve got a surgery date!

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Thank you. Still learning how to use and navigate the forum so hopefully I can be helpful. The info has surely helped me.

Dr. Karni gave me the option of either intraoral or external surgery. I chose intraoral (where he will remove 1 tonsil) but he said if he has a hard time he may need to go external during surgery and will be set up for both. Orally he mentioned more limitations on ligaments etc.

I’ve seen many doctors and he is top notch. Worth the wait to be seen and very quick to do surgery ASAP. I could have had it the next week but I take the mcat in June so waiting ! My surgery is in June. I will follow up here.

Side note… I’m cash pay (no insurance) … $265 an appt. but he is very thorough and answers all questions. I feel worth the money. Not sure on surgery cost but I’ll let you know. It will be done at memorial hermann surgery center to be cheaper than the hospital. (But it’s still in the hospital)

premedmom -

I would recommend you reconsider your decision to have intraoral surgery as the amount of the styloid process that can be removed that way is very limited. Dr. Karni told you correctly about the stylohyoid ligament as well - there is basically no access to it going the intraoral route. It seems odd to me that he would let you make the choice about surgical approach then tell you that he will prep you for both avenues of surgery “in case” intraoral doesn’t work. That would mean the possibility of an incision in your throat AND in your neck

Here are the advantages of external surgery over intraoral: External surgery provides full access to your styloid process up to the skull base & your full stylohyoid ligament (should it have some calcification & need removal) to its attachment at the hyoid bone. The nerves & vascular tissues are visible & can be monitored to limit the possibility of damage during surgery. The intraoral route doesn’t allow for any monitoring of nerves or vascular tissues in the surgical area.

Generally, we’ve learned over time on this forum that having an elongated styloid process removed to the skull base & the s-h ligament removed at the hyoid bone provides the best long-term results & very much reduces the chance of regrowth.

I hope I haven’t come on too strongly. Surgery is first & foremost a personal decision, but choosing the best surgical option can also set the wheels in motion for the best possible outcome in the end.

If Dr. Karni does your surgery, please do let us know how it goes! Up to now, no one on this site knew anything of an ES expert in the Houston area performing this many surgeries. Did he mention what his success rate was?

Hope your surgery goes well, & helpful to know of another knowledgeable doctor!

Hi redbird! I see you’re from Texas as well. Who was your doctor/surgeon?

@melb777 I flew to Dr. Samji since I couldn’t find anyone with much styloidectomy/ES experience in Houston.