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Kerry
Kerry, Nurse (RN)
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Experience:  35 years in Nursing: OB/GYN, Peds, Oncology, hospice, Ortho, Neuro, Addiction, Recovery, Geriatrics,
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Botox to help Bells Palsy long term cases

Customer Question

My Bell's Palsy hit me in June 2001. I watched the Good Morning America show today July 19th and they had Barbara Walters interviewing a Dermtologist about Botox. He mentioned use of Botox for cosmetic, help in persperation and migrane headaches. However, I have been given 10-12 injections of Botox every 3 months for 3 years by my neuroligist to relieve the tormenting spasms, cramps, etc. on the paralyzed left side of my face. I was surprised the Dermtoligist didn't mention this today. Have you heard of other help for long term severe movement disorder patients? I am on Medicare and can't make an offer as I have been researching Bell's on my own for almost 5 yeas. Thank you.
Submitted: 11 years ago.
Category: Health
Expert:  Jack Schroder replied 11 years ago.
What caused your Bell's palsy?
Newer treatments for various palsies are being tried. You might want to go to a University Medical School Hospital and inquire about research on Bell's palsy. They often have programs and need patients to study. Maybe you can telephone such a school and ask about it that way. Some of your own research should give you the names of doctors who are studying palsies and their kinds of treatments. Call these people. Thay always are looking for patients to add to their research. What Botox is supposed to do is to paralyze the nerves involved (facial nerve branches), and while that may help, you are right to be looking for other help.
Customer: replied 11 years ago.
Reply to Jack Schroder's Post: Dear Mr. Schroader:

Having trouble writing you so you many have a couple of replies. Sadly, I was disappointed that your answer did not help me. Botox relieves the cramps and spasms in the face muscles, NOT, from the facial nerve which I understood you to say? My main facial nerve is totally dead! It is the muscles that cause be great discomfort, much like a Charlie Horse in the face as its worse spasm.

I live in a rural area in SW Florida and it takes 3 hours to get to my wonderful neuroligst for the Botox. I understand U. of Florida at Tampa has a Movement Disorder center but this is about 6 hours round trip and I am a senior. However, I have been told by my 6 neurologist just to "Hang in there?" I have had Bell's for going on 4 1/2 years and am told it is very unusually severe case!   Thank you for writing.

Ginny

PS There was an article of 2 pages on Bell's Palsy in People Magazine on May 23, 2005 which was interesting however the actors involved had Bell's luckily for a short time and are normal now.

Expert:  Jack Schroder replied 11 years ago.
I am very sorry to learn of your troubles. Hanging in there is hard, but if 6 neuros have said that, maybe that's all you can hope for.
The paralysis of your facial nerve must be related, although it seems that other nerves are involved. Keep up your research. Sometimes you may find something that escapes your doctors.
Expert:  Kerry replied 11 years ago.

Hello


I wish we could help you more. My only other suggestions might be to try a pain clinic, or a specialist in pain control. Your neurologists should be able to recommend a good one.


Kerry

Customer: replied 11 years ago.
Hello Kerry:

Thank you for your reply. Amazing as it sounds, I am not actuallin PAIN! I am very uncomfortable due to the spasms in my face which causes drooling of the mouth and cramps like a Charlie Horse on the side of my face! Of course, it is embarrasing to be in public but most people assume I have had a stroke! So this is NOT a pain management problem. I have yet to meet anyone who had Bell's long term. The majority of Bell's patients had it briefly and that is great. I have learned to cope after going on 5 years but I was a magazine editor years and gave lectures at seminars which I no longer do and find that I am far more reclusive. I do feel blessed that Botox injections are given around my eye (to actually keep it open) and around my mouth to relieve the tormenting spasms and contortions that my face makes. This last barely 3 months before the spasms come back as the Botox wears off. I have not tried Accupuncture as when consulting accupuncturest they have no history in relieving Bell's case plus they are expensive and no medical insurance will cover this treatment. I have tried homeopathic treatment without success. I went through the normal procedures when Bell's attacked and rushed to the doctor. Anyway, thanks for listening and it could be far worse! My French husband says I am still beautilful in his eyes and that is all that matters.   Thanks again, Ginny
Customer: replied 11 years ago.
Dear Kerry:

I did reply to you yeserday! I mentioned that I am not in pain! I am in great discomfort. There is a difference between discomfort and pain management. The Botox injections every 3 months help in the discomfort of the facial spasms, cramps, twisting and pulling. Thank you for writing and to Mr. Schroder however I have not learned anything new. However, thank you for answering.   Ginny D Filiatrault
Expert:  Jack Schroder replied 11 years ago.
Sorry we have not helped. What do your doctors say about your facial nerve? Is it totally gone? Then not only sensory but (can't think of the word) the control of muscles is gone? It is quite possible that without muscle stimulations the muscles would simply cramp rather than become flaccid. What do your neuros say about that? A neurosurgeon might have suggestion if that is possible. Of course, 4 1/2 years after the injury?
I wish I could think of something. Sorry.
Expert:  Kerry replied 11 years ago.

Hi again


This is a long shot, but you might want to ask your doctors about trying baclofen.


Here's a web site to explain it:


http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202080.html


It will relax more than just your facial muscles though, but I know it has really helped people with spasms in other parts of their bodies.


Kerry

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