Posted by Ann Doyle , Apr 27,2001,07:06   Archive
I just had my first botox injection 4 weeks ago. It was perfect. My eyes were fine the next day. However I do have Meige syndrome which is getting worse daily. The Dr. said he just wanted to work on the eyes the first time and then work on the mouth. My eyes were my biggest problem so I agreed. However the mouth is so bad now that I am anxious for my next injection which is not until June 26. I hope the eyes stay good for that long. After reading other reports I wonder just how luck I was.
Actually 2 days after the shots I felt they were wearing off a little more each day. Then on the 8th. day I had a seizure and the eyes have been perfect ever since. That was 3 weeks ago. The neurologist said there is no connection between the seizure and the botox--a different dr. than the one who gave me the botox. He also explained in scientific terms that I could understand but not good enough to repeat. But I've also learned through this bulletin board that Dr's done't know as much as the patients. Howerever, my mom had a seizure when she was 60 and was put on dilantin and never had another one. I was given all kinds of tests and they couldn't find a reason for the seizure.
Because of the severity of my eye spasm ( really not a spasm, they were closed all day long), I hadn't been driving for 2-3 months. Then after the botox I could drive but then with the seizure can't drive for 90 days. It will be a total of 5 months at least. The great day is July 2.
Since I am new , I will tell you I am 70 years old have 7 children . I do a lot of volunteer work at the hospital and went back to work 2 weeks ago. I really missed it. My husband is retired and can take me and doesn't mind.
It took 2.5 years to diagnose my Illnes? desease? syndrome? Up until then dr.s gave my tranquilzers and told me there was nothing wrong with me and I should get a life.
When a dr. finally gave it a name, I came to the computer and found Circle of friends . I was first diagnosed with hemifacial syndrome and went to Pittsburg to Dr. Jannetta, who developed the MVD surgery. My eyes were ok for 2 days and then it came back. The surgery was not a complete failur because it restored my ability to swallow.
I found I believe a good dr. for botox injections but he is 2.25 hours away. He has been giving botox injections for more than 1l years at Vanderbilt Hospital. A question for the group--JUST HOW IMPORTANT IS THE DOCTOR GIVING BOTOX INJECTIONS? I know that there are Dr.s who are closer. Ann Doyle

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Re: botox

Re : botox --- Ann Doyle
Posted by Lynn Yarbrough , Apr 27,2001,12:22 Top of Thread Archive
It sounds like you are having moderate success with your Botox -- that's par for the course. No two people have quite the same reaction, although most have some success. Be thankful, as I am, for a supportive spouse who is free to pick up the slack when things go badly for you, e.g. driving to work.

How important is the Doc? I assume you mean is it worth tracking down another one and breaking a new one in. Well, I wouldn't trust anyone who gives Botox mostly for cosmetic purposes, i.e. a plastic surgeon. They are not, AFAIK, specificly trained for working around the eyelids and brows, where the BEB affects the muscles spasticly, as a neuro-opthal. would be. I have had the good fortune to have treatments from six different Docs, 3 on East Coast, 3 on the West. All great, although some were challenged as to "bedside manner". Since BEB and other dystonias are lifetime conditions, it pays big-time to stick with a good physician who will work with you patiently with dosages and locations of shots. What I suggest is to make up a list of questions based on what you learn here, and get answers.

And above all, continue to ASK QUESTIIONS HERE.

--- Lynn

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Re: botox

Re : botox --- Ann Doyle
Posted by Joanne Matuzas , Apr 27,2001,12:34 Top of Thread Archive
Ann, welcome to the board and thanks for sharing. At the moment, I
cannot address some of the issues you mention but as far as your question regarding the importance of the doctor administering the
injections, I think most of us would agree it is VERY IMPORTANT.
This is a very individualized disorder and no one doctor gives the
botox injections in the same manner. Some doctors are more flexible
than others but it sounds as if the dr. at Vanderbilt Hospital is very
experienced in this area. If you are getting good results, I would
not change doctors. Also remember, it may take several attempts before
the doctor maximizes the injection sites for you. Be sure to give your
doctor specific feedback regarding the results. If you do decide to find a doctor who is closer to you, I would check with your current doctor for a SPECIFIC recommendation. From reading former postings on this board, I do believe there are some of us who travel some distance for the botox injections. Hope this helps. Joanne Matuzas, CA

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Re: botox

Re : botox --- Ann Doyle
Posted by Sally - in - Idaho , Apr 27,2001,17:15 Top of Thread Archive
Welcome to the BB, Ann. Thanks for helping us get acquainted with you. I am 66 and it took about 2 years for my diagnosis, even though my mother had it in th 1960s and I was asking the various doctors about the possibility of BEB being my problem. "No way." I began having Botox injections in October 1990 and the success has been kind of up and down.

I am fortunate in that I only have to drive about one hour to get to the neurologist who does my injections, but he is the only one available in Spokane. Otherwise, I would have to travel to Seatlle or Portland and that would be a two day session. This doctor seems willing to work with my problem and the results have improved each time, so I will continue with him.

I would say that having a doctor you trust and who seems skilled in doing the injections is worth your trip. Many on this BB travel quite a distance, involving a couple of days each time, in order to stay with a trusted physician. You seem to be having fairly good results.

Come back soon now that you've found us. Feel free to ask questions, give suggestions, or just "visit." Most of us have gotten more information from our sharing here than we have from the medics.

Sally in North Idaho

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Re: How important is the doctor who administers the botox

Re : botox --- Ann Doyle
Posted by Judi in NC , Apr 30,2001,14:14 Top of Thread Archive
Important enough to me that I paid out of network prices because he is the best in the area. There were in-network doctors where I would pay only $10.00 for the procedure, but I chose the pay 40 times that to have the doctor my own doctor (who was also out of network) had recommended me to.

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