Any other post-op failures out there?


Posted by clara allen , Feb 12,2002,12:33   Archive
Hi, have not posted in a long time. I had a full-radical myectomy over a year ago in December. I must admit the spasms are not as intense or painful as before, but other than that not much improvement. I receive botox injections every 8 weeks, 135 units dispersed in over 20 sites around my eyes, nose and jaw. I have beb/meige. The shots do not last very long, only a few weeks of relief, then begin to wear off. I also take 2 mg. of klonipin daily, plus some other meds for other medical problems. I am receiving ssd. I had hoped to be able to at least drive, but find that I can only drive short distances and only during the few weeks when the botox is working at max. I have not been able to return to work. I don't know if it is from the meds or the distraction caused by the spasms, but I suffer from memory lapses, inability to concentrate, headaches, facial discomfort,clumsiness,depression, and have problems with handwritting and tremors of the hands, especially the left hand. I was wondering if anyone else was a surgical failure?? Sometimes I wonder if getting the botox shots are worth it. I get a few weeks of relief, get my hopes up, then when they wear off, it is like a gift is snatched away from me. Then depression sets in until the next round of shot; always hoping that maybe this time they will last longer. Sometimes I think I would rather just be blind, instead of this. At least I would not have he embarrassment from the eye squeezing and facial contortions. I would not have to get shots or take meds. I would not repeatedly have hope snatched away from me.



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Re: Any other post-op failures out there?

Re : Any other post-op failures out there? --- clara allen
Posted by Joanne Matuzas , Feb 12,2002,14:53 Top of Thread Archive
Clara, glad to hear from you--sorry to hear you are having such a difficult time with this disorder together with little relief from the
total myectomy. Your frustration is very apparent and most of us on this BB can relate in one way or another. This disorder stinks; there
are no two ways about it. I have not yet had surgery
but perhaps those who have will shed some light on that for you. I
do know that for me the meds do cause most of the side effects you mention. There are others who also believe the distraction from the spasms and the spasms themselves can cause those side effects as well.
And the yo yo effect of botox, meds, etc. is almost as difficult for me to deal with as the disorder itself(actually it is a part of this disorder). What works somewhat for me and some others here is the one day at a time concept--there is no and I repeat no stability of any kind with this disorder and that is what I sense you are looking for. I don't blame you for wanting your life back--you deserve it--we all do. But it's different now. For me it is a very delicate balance in accepting these changes and letting go--enjoying the good day and somehow moving through the bad ones without driving myself and everyone around me nuts.

You can take heart we all understand on one level or another. This is the place to vent. Joanne M. San Diego, CA




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Re: Any other post-op failures out there?

Re : Any other post-op failures out there? --- clara allen
Posted by Ann Doyle , Feb 12,2002,15:29 Top of Thread Archive
Today , I feel just like you do. Right after my shots, I feel great. I have bleph/Meige plus jaw and throat and now neck and hands. I get 20-24 shots of 100+. I'm due Feb. 28 and counting the days until I can count the hours. I hate not driving. I hate not working . I hate not being. I should be grateful for a patient husband. Children that care and freedom from financial worries. I guess I am. I don't like being fat and unhealthy--my choice. I used to be a long distance runner. Started at age 41. Quit near 60 and went into weight lifting and biking due to bad knees. I know what it feels like to feel good and this isn't it. Ann Doyle



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Re: Any other post-op failures out there?

Re : Any other post-op failures out there? --- clara allen
Posted by June in Toronto (June Floyd,June in Toronto), Feb 12,2002,15:44 Top of Thread Archive
Hi Clara, glad to see you posting again, but so sorry that things are so difficult for you. I know this disease is awful, but we have to deal with it as best we can and perhaps one day at a time, or even one hour at a time is what it is all about. What we can do for each other is to be here, to listen and to understand. Stay in touch, we care.

June in Toronto (beb/meige)




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Re: Any other post-op failures out there?

Re : Any other post-op failures out there? --- clara allen
Posted by Sally - in - Idaho , Feb 13,2002,20:50 Top of Thread Archive
Hi Clara. I had been wondering about you. The last we heard, life was going very well for you, with training for a new job and eyes much improved. So I hoped you just didn't have a need for the BB anymore.

I'm so sorry that things aren't working out as you had hoped. This disorder does seem to have many ups and downs, so we'll hope for more ups for you real soon. There are many people here to encourage and cmommiserate with you, so drop in oftn.

Sally in North Idaho




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