update


Posted by leprechaun , May 24,2002,19:18   Archive
Since my last posting I went to see a Dr. recommended by the Director of the BEB research foundation in Columbus Ohio.He has been with the research foundation since 1980.He said all the Dr.s I'm seeing in Dayton Ohio are doing everything correct.He did recommend that I have the limited myectomy due to severe droopy eyelids even thru I have only had two botox injections and am scheduled for my third on May 29th.The reason he is is due the fact that I had the droopy eyelids prior to starting the injections.He is sending his recommendation to the surgeon I'm seeing here and stated he is among the best.Has anyone had this done this early after starting treatments.



Recommend Current pageAuthor Profile
Replies to this message


Re: update

Re : update --- leprechaun
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 24,2002,20:21 Top of Thread Archive
Someone else will have to get back to you on this. Unless you have had beb for awhile and tried other things including both meds and gotten you botox injection sites right, I don't think surgery is recommended this soon.THANKS for geting back to us on your update and problem. Keep in touch, I'm sure someone else will reply.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: update

Re : update --- leprechaun
Posted by Shirley-Arkansas-USA , May 24,2002,22:21 Top of Thread Archive
I think that it all depends on the anatomy of your eyes. Some people do have severely droopy or heavy upper lids and I can see where you might be told to get this corrected whether or not you had Blepharospasm. If this is the case, you would just need to discuss with your surgeon as to whether or not you would want to have muscle removed from your upper lids (myectomy) or if you will just have a ptosis repair(Blepharoplasty) for the droopy upper lids to just remove the excess baggy skin and possibly tightening or advancement of the levator muscle which helps you to open your eyes. If you don't have muscle removed, also, from the upper lids, you will probably still need injections in this area (which will be more uncomfortable after surgery). The continued spasms in this area will also cause your upper lids to be stretched again over time.
I'm just throwing out some things to discuss with your doctor. Everyone is a little different with this. If you have not done so, you might check with a Neurologist that is a Movement Disorder Specialist who is familiar with BEB. Surgeons will almost always suggest surgery. I felt more comfortable having a myectomy after a Neurologist told me that it was a valid option for me.
I had my surgery approximately 2 years after the onset of my symptoms. It is not a cure. I got improvement but not as much as some people that I know.

Good luck to you and let us know what you decide to do.

Shirley in Arkansas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile