Hi AnnWhile I was at our support group meeting a few weeks ago, the man sitting next to me said his wife was having surgery some time this month by a doctor in St. Louis. Actually he told me his name, and I forgot it. He said that he had trained under Dr. Anderson in Utah. If you'd like, I'm sure I could find out his name. My husband couldn't believe I had forgotten his name, since I may eventually have to have surgery. I think that the gentleman told me that they sometimes read on the bb, but usually didn't post. He said one name he remembered seeing on the bb, was Shirleys. Can you believe that?
Billie in Kansas where it is cloudy & chilly today. We had much needed rain yesterday and last night.
Imagine that ... doctors who lurk being familiar with Shirley's name! Fame has come to her for sure. I'm glad I have an autograph (severl, in fact, in my cookbook) while they were still free. She will no doubt be charging for her signature soon.Seriously, it's good to know that others are paying attention and taking note of Shirley's well-thought-out and knowledgeable postings.
Sally in chilly North Idaho
Sally, I kind of think that Billie was talking about the people that she met from her support group and not the doctor. That's plenty famous for me. Shirley in Arkansas who is taking her cookbook back to the conference again this year to get more signatures.
Ann, you can contact the BEBRF and see if they are still having people complete the family history questionaire or if they can give you information as to who to contact.As far as the surgery is concerned and you going alone-I would say no.
It would be best to contact the surgeon's office and ask them about it. If it will be Dr.Anderson that does the surgery, he has most people stay at a nearby motel that provides transportation to and from his office and the hospital. I had both eyes done at the same time, so therefore was "blind" with both eyes bandaged for several days. I believe that he is now doing the surgery on two separate days, doing one eye at a time. In this way, only one eye is bandaged at a time so you have vision and can get around a little easier. I still wouldn't recommend trying to deal with this alone. Maybe someone else could comment on this that had one eye done at a time.
If you were going to be at home or hospitalized for the duration, it would be ok but going out of town for the surgery and staying in a motel by yourself is quite another and I wouldn't have done it. But call the surgeon's office and see what they have to say about it. If Dr. Anderson does it, you are talking at least a week and possibly longer to stay out there. Other surgeons may do things differently.
As far as doctors in Kentucky, I would contact the BEBRF about that area. They have names of doctors that they can give you. I'll post a link though for the dystonia doctor site where you can look up your state and find a list of doctors that have volunteered their name and specialty and their areas of interest.
http://www.dystonia-foundation.org/
Shirley in Arkansas with BEB/Apraxia
--modified by Shirley-Arkansas-USA at Sun, Apr 21, 2002, 16:15:11