Re: Hemifacial Spasm
Hi Barbara, welcome to the bulletin board - you are doing well with your new computer. I have had beb and meige for about 7 years now, but maybe there is someone `lurking' out there with hemifacial spasm that can post to you. If you feel like telling us how long you have had this disease and whether you are seeing a movement disorder specialist, units of botox injected, etc. it would be helpful. The lip drop sounds like its from the placement of the injections in that area - your doctor should try to avoid that happening by moving the injection sites. Do post again - there are some great, caring, understanding people on this board. Best wishesJune in Toronto (beb/meige)
Re: Hemifacial Spasm
Hi June,
Thanks to everyone for the welcome to the bulletin board.
I have had HFS sense 1985. I currently get 40 units of Botox
every 3 months. There is so much I don't know about the
condition. What is a movement disorder specialist?
Thanks so much.
Barbara in Indiana
Re: Movement Disorder Specialist
Its a doc. that specializes in movement disorders, i.e., parkinsons, dystonias, etc. - that's my simple non-medical explanation anyway:-)June in Toronto
Re: Hemifacial Spasm
There's also surgery that heals hemifacial spasm called MVD Micro Vascular Decompression. The 8th artery is sitting on some nerves (in the brain behind the ear. They take out a piece of skull and put a piece of teflon between the two and you are spasm free. You may loose your hearing in the ear near the incision.
There is a site called Circle of friends and another called hfs-assn. Both are excellent and all about hemifacial spasm.
Hemifacial spasm is very similar to Blepharospasm and there is no cure for bleph. Ann Doyle
Ann Doyle,Thanks!
Ann, Thank you so much for all the info.It is a great site.
Barb. in Indiana
Re: Ann Doyle,Thanks!
Barbara, I meant vein,not artery. If you go to Yahoo first you can get to the other site. There is also a site 19 pages that shows the operation in detail complete with drawings , Ann Doyle
Re: Hemifacial Spasm
Hi Barbara. Glad that you posted. We do not hear from a lot of Hemificial Spasm patients on the board. As someone mentioned, a lot of people elect ot have the surgery which I understand has a pretty high success rate. Unlike BEB, there is a cure for the Hemnifacial Spasm through surgery although I am sure there are circumstances that prevent everyone from being able to have it done. Not being a Doctor, I hesitate to recommend anything but I certainly would explore that avenue. You should also look under the Hemifacial Spasm section on the BEBRF main page which you can get to from this site. It does have information regarding it and I believe the surgery. I had come across a woman who had HS and did not know it. She had the problem for over twenty years and never did anything about it. I mentioned to look into surgery and she did and today is fine. Again, what works for one does not work for everyone but one never knows until you investigate to see if you would feel comfortable with having something done surgically and if the Doctors (more than one) think it will help you. God Bless and I am sure things will work out for you...Alan
Alan, Beb/Hemifacial
Hi Alan. Thanks for the input. I was told I have BEB to begin with.
After I got my computer I have recieved so much info.,my head is
spinning! I have found the Hemifacial Spasm web site. It is a great
help relating to people with the same problem.
Thanks so much. Barbara
Re: Hemifacial Spasm
Hi Barbara,I don't have your probelem, but did want to welcome you to the BB and say I hope you will come often. It's a wonderful place for answers and mulling over symptoms. I believe someone was discussing hemifacial spasm fairly recently. Week-ends are usually pretty quiet on the BB, so it might be a couple of days before you get an answer. But don't give up! Sally in North Idaho BEB/Meige
Re: Hemifacial Spasm
Hello Barbara in Indiana, I also have hemi facial spasms of my left side of my face.Since 1995, I get injections every 3 to 4 months with good results most times.It sounds like you got too much in the lip area, this happiness to other parts of the face too. It is hard to get it just right.If you would like to email me you may do so at elnalepa@aol.com Edith from Ohio but in Flordia for the winter
Re: Hemifacial Spasm
Barbara:Welcome to the bulletin board! Here are two links to sites that I know you will love. They deal specifically with Hemi-Facial Spasm. Click on the address and you will be taken to their URL (area). http://www.hfs-assn.org/ http://hemifacialspasm.org/cof/index.shtml There is a difference between Blepharospasm and Hemi-Facial Spasm, though they act somewhat the same and both use injectible Botox as one aid to management. Hemi-Facial Spasm is caused by compression of a facial nerve as it exits the base of the scull. Blepharospasm is a type of Dystonia where the cause is thought to be a disruption in the Basal Ganglia of the Brain causing incorrect signals to the facial nerves. Hemi-Facial spasm can often be corrected by surgery in which a small pad is placed between the impinging artery and the nerve. If you step on a hose with water flowing through it(compression), the flow is either cut off or diminished. When you take the pressure off (surgical route) by lifting your foot, the water flows freely again. Take care and keep in touch, Judy Blackman
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--modified by Moderator-JB at Mon, Feb 18, 2002, 20:42:47
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