Just talking


Posted by Dianne Beavers ® (dianne Beavers,Dianne Beavers), May 09,2002,00:54   Archive
Hi everyone!
Had a rough week last week. Came home Monday and jst fell apart. Couldn't talk to anyone without crying or falling asleep. My doctor has recommended I stay home and begin disability procedures. I informed my school system last week and they have beeen very helpful. MY head has hurt alot this weeek and my eyes even though mornings are my best times have been awful. My neck also hurts alot. My throat has been tightening up more causing the hoarseness. Tomorrow will be two weeks since last injections of botox a and the doctor is talking about using the botox b this time. It just doesn't seem to work with my body. A myectomy has been discussed but I don't know if I can handle that yet. I feel I have already put my two children through so much. They've been great though! Well I guess I'll see what morning brings. Will see my doctor tomorrow afternoon. The weather has been beautiful but I stay so tired or my neck hurts so I haven't felt like doing anything. I"M NORMALLY AN ACTIVE PERSON AND I guess things are starting to get to me. Sorry for the grumbling just needed to get it out.
Diane from NC who wishes she could type again



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Re: Just talking

Re : Just talking --- Dianne Beavers
Posted by June in Toronto ® (June Floyd,June in Toronto), May 09,2002,10:06 Top of Thread Archive
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)




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Re: Just talking

Re : Just talking --- Dianne Beavers
Posted by Shirley-Arkansas-USA ® , May 10,2002,10:47 Top of Thread Archive
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




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Re: Just talking

Re : Re: Just talking --- Shirley-Arkansas-USA
Posted by June in Toronto ® (June Floyd,June in Toronto), May 10,2002,10:50 Top of Thread Archive
You do a good job of `telling it the way it is', Shirley. Hope you feel better soon.

June in Toronto (beb/meige)




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Re: Just talking

Re : Re: Just talking --- Shirley-Arkansas-USA
Posted by Dianne Beavers ® (dianne Beavers,Dianne Beavers), May 10,2002,19:50 Top of Thread Archive
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



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Re: Just talking/Diane

Re : Re: Just talking --- Dianne Beavers
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), May 11,2002,05:04 Top of Thread Archive
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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