Re: Just talking
Hi Diane, never worry about the grumbling - we all do it from time to time. So sorry you are having such a bad time, but I'm glad you are starting disability proceedings and staying home. Having the time to relax more than usual will help with the stress which is so important for us to do. You will get back to being more active again I'm sure, but now you need to do less and concentrate on your wonderful children and yourself. Take care.June in Toronto (beb/meige)
Re: Just talking
Diane, you just go ahead and grumble away. My eyes are the pits right now, too and after a time it does wear thin on your nerves. I find myself getting depressed easily. Guess it's time to go back and get more BOTOX.
Before you really, really consider having a myectomy done, borrow the video tape from the BEBRF on the surgery and watch it. Then, try a least two other physicians that are knowlegdable about BEB and giving BOTOX and have them give you your injections to see if a different doctor helps. Sometimes, that is all it takes. Doctors have different injecting techniques and sometimes that makes the difference in the BOTOX working or not working.
If all else fails and you do decide to have surgery, don't let anyone operate on you that hasn't done a lot of this particular type surgery. There are a lot of good oculo-plastic surgeons out there but only a handful of those are experienced at doing myectomies. Unless a surgeon does these routinely, he or she will just be practicing on you. Not a pleasant thought. Surgeons do surgery so if a surgeon is telling you that you need surgery (or his co-worker is a surgeon and can do it), get a second opinion from a Neurologist that is a movement disorder specialist.
I know that you just want it to all go away. We all do. Even if you have surgery, you will still have BEB. It is unlikely that it will make all your symptoms go away.
I may be depressing you more but I'm really trying to point out that you have other options and I feel that surgery should be at the tail end of the list. Others may disagree.Shirley in Arkansas
Re: Just talking
You do a good job of `telling it the way it is', Shirley. Hope you feel better soon.June in Toronto (beb/meige)
Re: Just talking
Thanks again for the wide shoulders and listening ears. I went back to my doctor yesterday. He had planned to give the Botox B injections but after doing some more evaluations he said he wasm't putting me through them this time.He feels that the botox has helped with the squeezing around my eyelids and eyebrows but I appear to be showing some lid apraxia and the botox is just going to make that part worse. Now I'm back to having my eyelids fall or my eye or eyes just closing.
The klonopin is helping the spasms across my nose but I'm staying so depresssed . He cut them back to one half twice daily for 5 days then one half daily. I waiting to see how this will affect the nose and throat spasms. I'm going to hanbg in there because I just don't think I could handle that surgery yet. I did some reading the foundation sent me on all this info and doesn't sound like my cup of tea yet. My doctor told me to go home rest and enjoy my flower bed.
Going to go now. Kids will be home tomorrrow. I like the weekends.
Talk with you all later.
Dianne from NC
Re: Just talking/Diane
Good advice from him , Diane, and excellent from Shirley as well. You have not had all that previous stress and decision making off of you very long and sometimes your botox injections don't work very well under this type of pressure. Maybe some time will be what it takes.
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