Is there a surgeon in Washington State, closest to Canadian border as possible pls?
Hi Kandi, I know that there is a doctor at the University of Washington who just recently did his first ES surgery. My ENT wanted to send me to him, but I chose to fly down to San Jose instead. This is a really rare disease. I originally was looking into India or China before finding this group. There is a doctor spread sheet that people have filled in where theyāve had surgery and what success theyāve had etc. Maybe you can find someone with experience that correlates to a location near by where you have friends? If you do end up going to the UW please PM me I might be able to help you if the schedule doesnāt conflict with my surgeries.
Do u have contact info for this dr? The only surgeon in my area refused to do mine
All I know off hand is that he is a male doctor. He works at the University of Washington and he an ENT surgeon. Maybe my doctorsā nurse will tell me his name again. Sorry I didnāt see this sooner. My settings must have changed.
Thanksā¦
There is one doctor in Washington on the doctors list and heās in Seattle at UW - Dr. Neal Futran. Heās done an eagles surgery before, so I wonder if itās a colleague of his.
It looks like Futran no longer does the surgery, but he passed it on to another surgeon there, his name is Dr Jeffery Houlton
I saw Dr. Scott Bevans at UW Otolaryngology. He was a compassionate doctor. I only had a consultation with him because he didnāt see enough evidence to definitively diagnose ES so donāt know anything about his ES surgery background.
Ft That is their excuse for me on the only one surgeon in my areaā¦they claim they donāt think itās causing my issues. Regardless that the styloid can be felt from the outside from my ear to under my jaw. They dismissed my CBCT scan because it was translated by a dental radiologist and then claimed that 44.3 and 44.7 bilateral is not very long and that they are not calcifiedā¦the scan shows that it is.
I had neck surgery at the UW Medical Center. He seemed quite familiar with ES, and prefers to do the surgery extra-orally. He told me he has a colleague who does it intra-orally, but he favors outside. His name is Dr. Albert Merati. Phone 206.598.4022 www.uwENT-headneck.org
My case was difficult and the scan and videos, although abnormal-looking, were not perfectly definitive. Nevertheless, Dr. Merati displayed courage and faith in what his patient, me, was saying. He was not merely an automaton, but rather an insightful clinician who both looked at test results and also listened to his patient.
My surgery did not remove styloids, but rather an errant āhornā of my Adamās apple that was intruding in places it shouldnāt. 33 days post-surgery, I feel better, and my symptoms, although still present, are changed and reduced in severity and frequency. With time, and further healing, I expect to see a full recovery.
The scar is not pretty, but worth it to me. Iām very happy to be feeling better.
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Thanks Mark for your info, I checked it out but that dr needs s referral and I donāt have a dr referring and I couldnāt find out if he dies Eagles surgery. Iām still waiting on this Dr. Houlton. So far I was told that he doesnāt need a referral. Interesting as I though all of US drās didnāt require a referral.
Do u know who it is that had surgery at UW? Iād love to talk to them, thx
Iām sorry Kandi, the states has some pretty strict rules for patient privacy etc. itās called HIPPA laws. Even if a doctorās office has a violation due to a reasonable cause the penalty is anywhere between $1,000 to $100,000 ! There isnāt any way to find out unless someone on this forum volunteers to contact you. Re: referrals in the states. My experience has been that if you want to see a specialist and and are already a patient of record you can go with out a referral but your insurance wonāt pay as much or not cover at all. Is it possible for your dentist to make a referral?
Thatās what I wondered, if that person was on here to mention itā¦
Anyway, Iām not American, so I donāt have insurance, if u know how a Canadian could get some to get medical help in the US, pls do tellā¦also my dentist does not have the capability to make any referrals
Chrissy, do u know if Beavans does it externally? And have u manages to get surgery yet? I just spoke to Houlton at UW today and he didnāt say yes and didnāt say no, he wants me to wait a bit longer to see if it goes away. I donāt like that he does it mostly in the mouth, he said he would have to take my tonsils out and itās not even in my mouth, I feel it in my neck and I have been told already that mine grow outward. He doesnāt seem to know about vascular Eagles either. He did admit that 50% get better and 50% donāt, and that it is a hard thing to diagnose and that only surgery can tell if it was the problem or not, and admitted its controversial.
A 50% success rate isnāt nearly as good as the āmainā Eagles doctors. I would guess that heās not taking enough of the styloid out. And the more experienced Eagles doctors almost always do external surgeries.
He said that he has done the neck one, but he seems to not like it for some reasonā¦then he told me he would have to take my tonsils outā¦why would I want them out when I always had good healthy tonsils and they are good to have for the immune system? And my styloid isnāt poking in my mouth, but is poking in the front of my neck? He also was again saying that the surgery is a tough one. And ya, he did admit that he leaves in an inch because itās dangerous to take it allā¦ I also recall reading that the intra oral way u canāt get at much out too
Which ones are the main Eagles drās? Cognetti, Samjii I know so far. I have not heard from Cognetti yet. Forester and Samji both told me too longā¦
Those are the main ones that I was thinking of - Cognetti, Samji, and Forrest.
Too long? You mean the styloid was too long?
Yes, the styloids ā¦