Well, yet another doctor has decided that my symptoms are not "classic ES symptoms" (this time an oral-facial surgeon). What an enornmous coicidence that we all ALL have ES and we ALL suffer from the same symptoms, but that simply CAN'T BE what's causing them!!! UUGGGHHHHHH!!! Instead he now has me going to ANOTHER neurologist because he believes it is Multiple Sclerosis. Really?? MS that has gone undiagnosed for 22 YEARS??? Possibly the most frustrating part is that I can't "educate" him like I want to because I am an audiologist seeking employment in this area and have to play nice. Makes me want to SCREAM!!
Sorry for the continued frustration, wadams. Any way we can help with the process of getting you to a more knowledgeable doc, or one who is willing to learn?
Thanks, Dancermom, but it is doubtful. I live in Louisiana between New Orleans and Baton Rouge and have not been able to find a doc in either place. Unfortunately, I think my closest option would be Houston -- 5 hours away! :-(
dancermom said:
Sorry for the continued frustration, wadams. Any way we can help with the process of getting you to a more knowledgeable doc, or one who is willing to learn?
I took a look at previous discussions. I can't see based on this discussion that anyone has found a doc with sufficient experience in Louisiana: http://forum.livingwitheagle.org/forum/topics/recovery-from-surgery-i-had-yesterday?
You can friend the members from your area who participated in this discussion and see where they wound up being treated. If it is doable, the trip to Houston or possibly Little Rock (UAMS) might be well worth your while.
I have spoken to a few. All went elsewhere.
wadams just curious on your current status on diagnosis ? Have you already been diagnosed yet? do you already have a CT scan of the neck? What symptoms are you feeling ?
wadams, tell us exactly what symptoms you have and if you have ever had a proper CT Scan. I had a very good ENT in Baton Rouge, that has never seen Eagles, but I went to her for a referral, and I allowed her to touch my styloid gently. She referred me to a cancer surgeon. I didn't like his attitude, and he had never done an Eagles operation but I believe that he could have though he would probably do intra oral, only. In fact, he said that he would do it, but he didn't think it was "remarkable". He might be nicer to you. I tend to be confrontational sometimes. . So I decided not to stay with family in BR and have the operation. Instead, I came back to Fl and let my ENT do the surgery. I was his second and I believe it was successful.
If you have any of the required scans and if you don't, I might be able to contact her ( and send her my operation report) which I planned on sending anywary and see if she would be willing to at least see you. I can't make any promises where it would go, but she has always been interested and in the past, even a little innovative in her treatment style.
I could also inquire of my former maxillo-facial surgeon,( oral surgeon) in layman terms, to see what he knows about Eagles. However, I would like more information from you. I am sure either of these doctors would be at the least kind to you. The oral surgeon had to remove a tumor from my tongue( benign, thankfully) and he called me at home that night to make sure I was okay.
If this is too personal send me a friend message.
I’m so sorry. This is terribly frustrating. As an OT, I went to a vestibular rehab course to try to figure it out after going to so many doctors. Finally I gave up locally and went to a major university hospital. Stanford. I also looked into Mayo Clinic and Denver University Hospital. I found help at Stanford. I am going back to my surgeon in one month for the second one I have figured out many of my symptoms are vascular on this side or vagal. Dizziness when I turn my head, palpitations and low heart beat. Plus all the other classic symptoms EXCEPT trouble swallowing. Never have had that. I think that is listed a a major symptom and the docs just keep focusing on it. The styloid Dr Samji removed in 2011 was 47 mm. He said it was one of the largest ones he has removed of 45 surgeries he has completed. There needs to be physician education on this !!! Again. I spent about 120 dollars at my dentist for a digital panoramic X-ray in Dec. last year. They could rotate the image and I could see the nub where the 1st styloid was removed on the base of my skull. And you could see the honking big fat styloid that is soon to be history. Good luck to you. I hope things get better soon!
Emma,
Please reply with the name of the ENT in BR. As of now, the closest on the doctor list on this site is in Houston. While my sister lives there and would be more than happy to have me stay there a while, it is always nicer to be closer to home when you are not feeling well.
Sorry Wadams, I have not had much luck in Baton Rouge. My regular ENT was Dr. Lynn Murphy, she has no experience with Eagles, but sent me to a cancer ENT who does lots of sub-specialty surgeries. He looked at my CT scan and pretty much acted like Eagles was no big deal. He does lots of 24 hour surgeries and said the operation would be intraoral and much like a tonsilectomy and nothing to it. When I asked how many surgeries he did, he crawfished, I hope you understand my Louisiana term. He backed up and got defensive. After my asking 3 times, he admitted never doing one, so I took his attitude and left. For the record. His name was Dr. Dileo, I can't remember his first name and I would not recommend him for Eagles, at all. Just last week, I went to my oral surgeon in Baton Rouge and spoike to him about Eagles, he seems to know something about it but seems to think you should not do anything about it unless you have severe dizziness( vascular involvement) and then only do something if the carotid is not blocked from plaque. I think I ran out of sources. Who do you have in Houston? I am beginning to have issues on the other side and seriously thinking of going to California or Philadelphia for help if I decide I need it . Louisiana has a lot olf doctors who graduated from LSU or Tulane. Most of them don't seem to be quite as patient oriented as some of the others. I was sorry to find out that my oral surgeon was so limited in his understanding of Eagles. From what I got from him, I don't think he knows any other doctors with Eagles experience because I think he would have told me.
I do not know of a specific doctor in Houston. I just think out chances HAVE to be better. And my sister lives there, so recovery would be nicer