6 Week Check-up

Posted by coleen dennis , May 24,2001,21:29   Archive
Good Evening....all!

I had my first follow-up visit with the neuro-ophth yesterday afternoon. I got the impression that I was upsetting him. First of all he asked how I felt I was doing with the first set of Botox. I said I was happy with how I was doing. Still blinking and stumbling around. He said remember that he said the first visit not to expect much to begin with as he would start with a minimum dose and work up. He said he started with 25 instead of 20 units each eye due to my eyes being pretty well closed. He has scheduled me for 33 each eye on 7/11 and then work up to 50. I asked him about Apraxia and he explained it to me and said that it sounds like that was what I was explaining was happening to me. I understood him to say that that is a different problem than Blepharospasm and probably would require surgery at some point to help with that. He wants to get the spasms under control before talking about surgery. I asked about using a cane and he didn't seem to think that was necessary. I explained that I was stumbling around with my eyes closing and he doesn't feel it is related to the Blepharospasm. I am going to check with my regular doctor as sometimes my Fibromyalgia can make me wobbly. I did get a cane (silver) and used it today at work. It helps with the walking and others seemed to be more interested in what was ailing me. I decided to get it even if it was just to make me feel better about walking around. With my history of health problems I have decided that I am taking control and doing what I feel works best for me. I am the only one experiencing what is going on inside myself. I think I have reached the bottom and am working my way back up.

Does anyone know what the guidelines are for driving when you have Blepharospasm? I found something on the internet regarding driving in England and you need to havea doctors note if you have Blepharospasm.

Coleen in PA where the weather was warm today.

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Re: 6 Week Check-up/Driving Risks

Re : 6 Week Check-up --- coleen dennis
Posted by Shirley-Arkansas-USA , May 24,2001,21:59 Top of Thread Archive
Hi Coleen,
Glad to see you're taking charge. You must with this disorder. Learn as much as you can and see someone that you are comfortable with and that you can talk to. I don't understand his saying that your stumbling around is not related to your Blepharospasm. Ask any blephro how many times they have tripped or fallen down or run into walls or cabinets. It does take a few tries to get the dosage right so if otherwise you like him and feel that he is knowledgeable about Blepharospasm, then you do need to be patient with him. Some doctors will also re-inject you with botox within 6 to 8 weeks.
Did he think that you have apraxia or a ptosis from the botox? Ptosis is generally technique related and can usually be prevented with an experienced botox doctor.

Just a comment about the driving. I'm no lawyer but if you have a known visual handicap and elect to drive, whether a doctor has advised you to or not, if you have an accident, rest assured that you will be taken to the cleaners. I doubt that your insurance would even cover you under the circumstances. You have pre knowledge that your eyes close for indefinite periods of time. It is documented in your medical history. You are taking a major risk.
Any one else want to comment on this? Do we have any lawyers out there?
I know that many people with Blepharospasm do drive and some only on a limited basis. I'm not one of them. This is a very sensitive issue.
If my surgery improves my eyes enough, I'll probably be driving a little again, too. I'm sure not there yet, though.

Shirley in AR. Who does miss driving.

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Re: 6 Week Check-up

Re : 6 Week Check-up --- coleen dennis
Posted by Lynn Yarbrough , May 25,2001,13:10 Top of Thread Archive
>Does anyone know what the guidelines are for driving when you have Blepharospasm? I found something on the internet regarding driving in England and you need to have a doctors note if you have Blepharospasm.

My advice is: STOP DRIVING until your spasms are under control. If your eyes shut 3-4 seconds and you have a spasm at highway speeds (60MPH) you won't know what's happening for the length of a football field. At street speeds (30MPH) it's just as bad - you can still kill somebody or lose control and kill yourself. Certainly you have no legal protection if anything goes wrong. If you drive you are risking your whole life for the convenience of "doing it yourself". Don't do it. It's not worth it.

I had to face this issue while my wife was pregnant with our 3rd child. She drove me 20 miles back and forth to work every day for months. I had to catch rides with friends for years. A company VanPool was a tremendous help. When I first felt that I was sufficiently free of long spasms I still drove very slowly. Many times the only thing that saved my neck was the adrenaline rush of a near-accident, which kicked my eyes open long enough to keep from killing people. But it was a tremendous stress, and a threat to our family.

Nowadays Botox and stress management allow me to drive without restriction, but I usually have my wife drive to where I get the shots, because by that time I am a threat to people and small animals.

Please -- wait until you get to that point where your eyes are free of spasms before you resume driving.

--- Lynn

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