it's good to know about this and that you are doing well on it. how much of a pain in the you know what, was it to have your frontalis sling reversed?
Hi Kathy, I found the surgery not painful at all & I had one of our great Doctors do it as he also had done the two myectomies. The main problem is adjusting the "GORTEX STING) that your eyes can be shut when they need to be. Not blinking and not being able to close them enough
causes severe dry eyes (which when not heavily protected with a heavy
ointment) to protect the corneas from drying out) is a problem. My husband had to administer the ointment several times a night as I could not close my eyes 24 hrs a day. I spent a full 5 weeks like this and
had very little vision during the day as the heavy ointment to protect
my corneas prevented me from functioning normally. The surgery is
reversable as all that is done is to cut the string. I was fine after
this was done and content to live with my good & bad days from my
appraxia of both my eyes. If you are considering doing this I would try to contact as many of us who have had this surgery.
Your fellow blepher,
So happy to hear there's help for you & you're better. I've never heard of Keppra. Also good to know there are dystonia specialists around.
Joann in Ark. where sun is shining & it's a beautiful day. Winter weather is coming in midweek however.
HI JOANN, The sun never quits here in Florida. A couple of others in my support group are now taking Keppra and are doing better . I take only1/2 0f a 250 mg pill a day. The neurologist I use studied I believe
Under Dr. Brin who was in New York. Dr Brin I think now works for Allergan.
--modified by rita Silver at Tue, Jan 29, 2002, 08:58:20
Hi Rita, good to "see" you again. I posted a link below for people that would like to see some information on the prescription drug Keppra. I had not heard of it before, either. I'm glad that it is working for you. Do you feel that it has helped your BEB? Apparently you have apraxia also, since you said that you had a Frontalis Sling done. The apraxia is my biggest problem. Do you feel that the Keppra has helped with the Apraxia problem or primarily for your other areas of Dystonia?
Thanks for letting us know how you are doing.
Shirley in Arkansas who met you at the Scottsdale conference.
I do not think the Keppra is helping my appraxia. But it has helped my other movement problem. I have others in my support group who go to the same neurologist and are now taking Keppra( which is very new) They are doing a lot better also. IT is not available and not even known in
canada, as I mostly get my drugs there. I use Walgreens pharmacy & I have to order it as it in not stocked.
Some of us have respiratory involvement in our dystonia. Do you or any of those in your support group who take it have any idea whether Keppra would help that?
Virginia in AL
Re:VIRGINIA- Keppra RESPIRTORY PROBLEMS
HI VIRGINIA, I HAVE TALKING PROBLEMS WHEN I GET A SPASMODIC PROBLEM WHEN I NEED BOTOX FOR MY MEIGE WHICH COMES ON SUDDENLY AFFECTING MY FACIAL NECK, SHOULDERS AN I AM UNABLE TO TALK. I HAVE DO HAVE MEMBERS
IN MY SUPPORT GROUP WHO HAVE VERY SIMILAR PROBLEMS. ONE HAS A LOT OF OTHER MEDICAL PROBLEMS AS THIS PERSON ALSO IS A MANIC DEPRESSIVE SO I KNOW HE GETS BOTOX IN HIS THROAT AREA. THE OTHER MEMBER IS TREATED AT BASCOM PALMER IN MIAMI.I DO NOT KNOW WHAT HER MEDICATIONS ARE. I DID FIND
OUT YESTERDAY THAT KEPPRA IS VERY OFTEN USED FOR PARKINSON, WHICH I DO NOT HAVE. I KNOW SINCE I HAVE BEEN ON KEPPRA FOR A SHORT TIME AND A
VERY LOW DOSAGE THAT MY ARMS AND LEGS AND MY TREMORS HAVE VERY MUCH IMPROVED. I THINK MY BLEPHARSPASM, MEIGE AND SPASMODIC DYSPHONIA , WHICH
HAVE GOTTEN WORSE AS TIMES GOES BY ARE NOT BEING HELPED BY DRUGS, ONLY
BOTOX. IN DECEMBER I WAS GIVEN 15 INJECTION WHICH WAS 105 UNITS OF BOTOX
WHICH WORKED WITHIN AN HOUR TO STOP THE SEIZURES WHICH WERE COMING
EVERY 10 MINUTES. I DO NOT KNOW IF THIS INFORMATION WILL HELP.