Frontalis Sling for appraxia


Posted by rita silver , Jul 02,2001,12:30   Archive
I hope someone who has had this surgery would contact me. Botox and two myectomies no longer help me to keep my eyes open.



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Re: Frontalis Sling for appraxia

Re : Frontalis Sling for appraxia --- rita silver
Posted by Larry Garrett , Jul 02,2001,23:55 Top of Thread Archive
Hi Rita, I'm sorry to be the one to tell you that once you have a full myectomy the frontalis sling is no longer an option. During the surgery the frontalis muscle is removed. If you only had a partial myectomy then it might still be helpful. You need to discuss this with your doctor. I too have had a full myectomy and I get 100 units of botox every three months for the last three years, even though I have never been helped by it. I'm still not giving up, I am waiting for Myobloc to be approved for use in BEB patients,maybe that will finally be the thing that works for me.
Larry Garrett



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Re: Frontalis Sling for appraxia

Re : Re: Frontalis Sling for appraxia --- Larry Garrett
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Jul 03,2001,09:08 Top of Thread Archive
Larry, the Myobloc is being used by doctors now. I live in NC and I went to a doctor in Cary , outside Raleigh and on June 4th we tried the Myobloc. I have had the Botox A in the past and it did not give me any relief except on one occasion. The Myobloc has a drawback - it has a stinging/burning sensation when injected. I had 7 around each eyes, 3 on the forehead and one on each side of the nose, 19 in all and they all HURT. I had 3 days of relief and I experienced more bluriness with the Myobloc and also double vision for several weeks.

With the Botox A my worse side efect was the dry scratchy, felt like briars in eyes for several days. I did not experience this with the Myobloc except on one occasion but I did have pink/red eyes (the whites oif the eyebal) on about 5-6 occasions and that was very unpleasant. I am going next Monday, July 9th and we will discuss surgery.

Actually on my first visit he said I definately needed surgery because I had too much muscle left in my eyes to have had a partial myectomny (May '99) but he wanted to try the Myobloc first to see if it would work on me. Since I did not have much success with the Myobloc we are going ahead and do the surgery.

If you have any questins you may e-mail me.

Joyce in NC




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Re: Frontalis Sling for appraxia

Re : Re: Frontalis Sling for appraxia --- joyce whitt/NC
Posted by rita silver , Jul 03,2001,13:29 Top of Thread Archive
Joyce, thanks for letting me know about myoblock, Botox no longer helps my appraxia and since I have had a lower and upper myectomy wwithin the
last 5 years. I also have meige.when I can't keep my left eye open the dystonia of my left foot and arm become immoble. I have sensory tricks to force my eyes open, I am absolutely fine as long as my brain is being challenged, but this can become very tiring. I think the only course for me now is to use the sling. I am an area rep in Boca Raton Fl. for the past 5 years. Thanks again, Rita Silver

--modified by rita silver at Tue, Jul 03, 2001, 13:31:46




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Re: Frontalis Sling for appraxia

Re : Re: Frontalis Sling for appraxia --- Larry Garrett
Posted by rita silver , Jul 03,2001,13:16 Top of Thread Archive
Thanks Larry for your responding. I will certainly discuss this prior surgery with my doctor. Rita



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Re: Frontalis Sling for appraxia

Re : Frontalis Sling for appraxia --- rita silver
Posted by Shirley-Arkansas-USA , Jul 06,2001,14:10 Top of Thread Archive
Rita, have you contacted the BEBRF? They would be able to give you names of people who have had the procedure done and you could call or email them.
As far as being able to have the sling done or not, it would just depend on what you have had done in the past. Some doctors won't do a Frontalis Sling before a myectomy with tightening of the levator muscle and removal of the loose skin of the upper eye lid is done first to see if that will help. You would need to check with someone with lots of experience in this area since you have already had two myectomies done.

Good luck to you.
I can relate to the apraxia problem.

Shirley in AR.




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