General question and then one for Shirley


Posted by Ann Doyle , Apr 20,2002,14:55   Archive
Where do I write to tell of family history of bleph symptems?
Shirley sometime in the future I will probably have a myectomy. I had one brain surger this year that took 8 days of a daughters vacation and a near miss that took 3 days of another. I was wondering, since I'm from Ky, and might go to Utah for the surgery; is it something I can do alone?
Also I would like to look around for a doctor closer to Ky. Is there a web site I can check out? Ann Doyle



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Re: General question and then one for Shirley

Re : General question and then one for Shirley --- Ann Doyle
Posted by Billie Lowe , Apr 21,2002,16:07 Top of Thread Archive
Hi Ann

While 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.




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Re: Shirley, You are famous!

Re : Re: General question and then one for Shirley --- Billie Lowe
Posted by Sally - in - Idaho , Apr 21,2002,18:02 Top of Thread Archive
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




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Re: Shirley, You are famous!

Re : Re: Shirley, You are famous! --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Apr 21,2002,18:43 Top of Thread Archive
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.




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Re: Shirley, You are famous!

Re : Re: Shirley, You are famous! --- Shirley-Arkansas-USA
Posted by Billie Lowe , Apr 21,2002,22:28 Top of Thread Archive
Hi Shirley
Thanks for clearing that up for Sally. I went back to see what I had written to make sure I had written what I meant. I don't always make myself clear I guess. Anyway I believe the man (not the doctor) was impressed with your knowledge. I think you should charge for your signature anyway.

Billie in Kansas




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Re: General question and then one for Shirley

Re : General question and then one for Shirley --- Ann Doyle
Posted by Shirley-Arkansas-USA , Apr 21,2002,16:14 Top of Thread Archive
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




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