Re: Update on Joyce W.
is this joyce whitt who was trying the myobloc also? she keeps sending me messages that are forworded from other people and i am afraid to open them because of viruses. i do hope she is okay. she has had a really rough time!!
Re: Update on Joyce W.
Shirley thanks for the update on Joyce. Glad that the surgeryis over
Hope everything goes ok for her.
Are you doing ok after your surgery?
Colleen in IL
Re: I'm 4 months post-op
Hi Colleen,
I'm about 4 months post-op. I'm still having the excessive tearing off and on. In general, things are better for me. Still a little residual swelling that only I notice and my eyes and forehead go through bouts of serious itching. I don't have to be led blindly around anymore. I definitely still have BEB and have squeezing and pulling from my forehead and lower lids. I just had botox again a week ago and it is starting to help. I still have the light sensitivity and still have to take my Klonopin and Benadryl and Adderall but at a lower dose. I would do it again. It has helped with my apraxia problem and I'm very thankful for that. Are you still using the Myobloc? How are your symptoms doing? Shirley in AR.
Re: I'm 4 months post-op
Hi Shirley,
I hope Joyce does well after her surgery, and I'm so glad that you are noticing a difference after yours.
Today we went for our second training session and I changed out the softset myself this time. She said I was doing very well with learning how to do it.Our granddaughter spent the night, and went along with us. She's nine and learned quite a bit about the pump too. We took her to the Spaghetti Factory for lunch. We enjoy her so much.
Evelyn, where it finally got up to 85 degrees today.
Re: Update on Joyce W.
Hi Kathy, Yes, you're thinking of the right Joyce. She says no more Myobloc for her. It didn't work very well for her.I'm hoping that this surgery helps her, too. She has had some very rough times. I've also been hesitant to open emails with attachments and haven't most of them. People will just have to understand. Shirley
Re: Update on Joyce W.
yes , i know. i didn't want to hurt her feelings but every one of the messages has an attachment and i don't know where some of these things are coming from, who the other forwordees are and sometimes it says undisclosed recipients. anyway after that virus warning, i don't do that or actually never have unless i know exactly who has sent it.
--modified by kathy at Fri, Aug 10, 2001, 10:29:19
Re: Update on Joyce W.
Shirley i go for more shots Aug.22 No more Myobloc the last ones lasted
only 8 days.It has been a long wait.
Take care Colleen in IL
Re: No more Myobloc
Hi Colleen,
I hope that the two weeks go by quickly for you. At least you and your doctor gave the Myobloc a shot (no pun intended). I'm sorry that it wasn't more helpful for you. We'll keep our fingers crossed for good results with the Botox on the 22nd. Shirley in AR. where it is cooler today.
Re: No more Myobloc
well this is discouraging. has it worked for anyone so far with BEB who is immune to Botox A??
Re: No more Myobloc
Kathy, I haven't heard any success stories with it for BEB yet, unless I've missed something somewhere. I asked my Movement Disorder Specialist about it and he just says that they are not finding it any better than Botox and it seems to be more painful. It also has more protein in it than Botox which is what you build up the antibodies to so there will actually be more of a risk of this with Myobloc than with Botox. It is just another treatment option. We will probably find out more about it at the conference and can let you know what they have to say. And it also is not officially approved or indicated for Blepharospasm although some doctors do seem to be using it for that. It is approved for Cervical Dystonia.Shirley in AR.
Re: Update on Joyce W.
Joyce just gently chewed me out , so i think she must be feeling better. i apologized to her as i certainly wasn't trying to be gossipy.
Re: Update on Joyce W.
Kathy, and anyone else that I have sent e-mails to, I apoligize if I sent you something and you thought might be a virus e-mail. Usually if it has a lot of names on it, it is not a virus. Usually virsus come with just one name on it and an attachment that if opened could cause problems. If you have a virus protection program you are not likely to open it because a box will pop up and tell you that you have hazzard material and to open at your own risk. Of course that would warn us not to open. If you don't want to receive any more e-mails, just let me know, I will be happy to oblige. I promise not to get mad either. I receive so many inspirational stories and uplifting poems or stories that I just naturally want to share with others. Thank you Judy for the e-mail and the beautiful Rose. I would have missed this if I was afraid to open the "paperclip" As far as my surgery, it went OK. I did have to stay ovrnight for observation because I had some excessive bleeding and they wanted to make sure everything was OK. I am glad I stayed because about 6 PM and on, my eyes began to have terrible pain. I alternated between Perocet and Demoral (sp?) They had to keep taking the bandages off and put lots of ointment in my eyes and then rebandage. I couldn't use ice packs because just the pack caused terrible eye pain. I made it tho and came home the next day. I had a lot of complains about the way I was treated. I had my eyes bandaged and for all practical purposed I was blind but I quess they thought I had X-ray vision. The worse part was when this nurses aid came in to give me a bath. She striped me naked and that was a VERY EMBARASSING situation. I thought about it for an entire week and I called Friday and told someone in Administration abput the treatment I received.
The main problem I am having now is spasms under the eyes. They are more forceful than before. At first I thought my top lid was spasms and I thought, O no, I went throught all this and my lids are still closing but after watching my face in a mirrow, I have decided that it is the lower lid is the one causing all the trouble. I quess I will have to have Botox in that area. (no more Myobloc) I discovered that if I take 2 Klonopin at a time, 3 times a day that seems to help with the under eye spasms. Patience, Patience, it takes time to heal and I am trying to be patient but it is hard. If you have any questions, let me know and I will try to answer. Oh yes, I can open both eyes altho the left eyes doesn't close all the way but I am to gently nmassage it and sorta of pull it down. I have been doing that and I do see progress. Your BEB friend in NC - Joyce
X-ray vision
I stayed overnight in "extended recovery" when I had surgery. My eyes were bandaged and drains were put in to help cut down on the swelling. I laughed when you mentioned X-ray vision because when the doctor came in the day after the surgery, he asked me if there had been much drainage (the nurse had emptied them a couple of times). I patiently told him that I had no idea, since I had bandages over my eyes and couldn't see. You'd have thought he would remember - he put them there (and had just taken them off).You've probably read many times here that some of us wear sleep masks or otherwise cover our eyes while we sleep because one or both eyes don't close. You might want to consider that if you aren't doing it already. Mine close fine now, but sometimes right after Botox, one will not close completely. Hang in there and take care of yourself. Virginia in AL
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