Hemifacial Spasm


Posted by Sharon L OHara , May 30,2001,10:26   Archive
Do any of you have hemifacial spasm. I've been going on the assumption
that I had BEB but I attended a support group meeting here in Kettering, OH and people there seems to think I have HS. They are basing that on the fact that I only have one eye affected. I'm especially interested if anyone has had the surgery for HS where they
go in behind your ear and do surgery to pad an area between the 7 or 8 nerve and an artery or vein?



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Re: Hemifacial Spasm

Re : Hemifacial Spasm --- Sharon L OHara
Posted by Shirley-Arkansas-USA , May 30,2001,12:54 Top of Thread Archive
I have copied the link to the hemifacial spasm website. Generally, blepaharospasm does effect both eyes, sometimes one is worse than the other. You are welcome here whether you have BEB or HS. Do you have any spasms in the side of your face with the effected eye?

You might be interested in the audio tape from the last BEB conference. If you go to the top of this page and click on "BEBRF Main Pages" and then at the top of that page you will see "What's New". Under audio conference tapes from the 2000 BEB conference is one tape on Hemifacial Spasm. It is tape #4. A Dr.Amin Kassam gave the talk and it was excellent. I believe the one tape would cost $4. He discusses Microvascular Decompression surgery for HES. He comes from the University of Pittsburgh Medical Center and is the Assistant Professor of Neurological Surgery.

Have you been seen by a Neurologist that specializes in movement disorders? You really need to get a correct diagnosis. And I really recommend the tape as it has some very interesting information in it that I would want to know in making a decision on treatment options.

Like I said before, you are welcome here and can ask whatever you like.
http://hemifacialspasm.org/cof/index.shtml

--modified by Shirley-Arkansas-USA at Wed, May 30, 2001, 12:57:41




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Re: Hemifacial Spasm

Re : Re: Hemifacial Spasm --- Shirley-Arkansas-USA
Posted by Sharon L OHara , May 31,2001,09:26 Top of Thread Archive
Thank you Shirley. You led me to a good site. I haven't noticed and spasms other than my eye. I have not seen a neurologist. Are you the
same Shirley that just had surgery and posted pictures?



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Re: Hemifacial Spasm

Re : Re: Hemifacial Spasm --- Sharon L OHara
Posted by Shirley-Arkansas-USA , May 31,2001,10:40 Top of Thread Archive
Hi Sharon,
I'm the one. I'm looking a little bit better, now. It's been 6 weeks and I'm starting to notice improvement.

I do think that it is real important that you see someone that knows a lot about BEB and Hemifacial Spasm so that you can get an accurate diagnosis. You might contact the BEBRF if you have not already done so and ask them for suggestions. Also, read as much about both disorders as you can and you will probably be able to figure it out for yourself. You still need a good doctor, though.

Part of Dr. Kassam's talk, I believe, is in one of the back BEB newsletters. If you don't receive it, Mary Smith, at the foundation might be able to send you that copy.

Stick around, no matter, and visit with us.

Shirley in AR.




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Re: Hemifacial

Re : Hemifacial Spasm --- Sharon L OHara
Posted by Moderator-JB , May 30,2001,13:44 Top of Thread Archive
Sharon:

Welcome to the group!

Neither Hemi-facial Spasm or Blepharospasm are much fun, but then you've most likely discovered that by now :)

How long have you had symptoms? The following link statement (with the exception that there is now a group for HFS as Shirley has directed you to) is a good explanation of HFS.

http://www.blepharospasm.org/blephar3.html#A1

Please tell us a bit about you and yours, we're always happy to meet new friends.

Take care,

Judy
blkmn36@earthlink.net
Moderator




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Re: Hemifacial

Re : Re: Hemifacial --- Moderator-JB
Posted by Sharon L OHara , May 31,2001,08:59 Top of Thread Archive
I started with blinking in May of 1998. This progressed to the eye spasming either shut or halfway. Med. Dr. said it was nerves! I went to 2 opthamologists with the last one referring me to a neuro-opthamologist. He never looked at me directly and said you have " " diagnosis. I started throwing out Belpharospasm and he said yes, then I said, "isn't is unusual for it the be in only one eye" and then he mentioned something about hemifacial spasm. Anyway, I've been getting botox inj. since Jan. 2000, every 2 months leading up to a dosage of 5 in 8-9 sites around my eye, including the eyebrown. Twice during this time my eye opened on 2 occasions, 1 lasting about 10 days and the last about 5 days. Not enough to continue. When I called he said to keep my appt. in July and we would talk other options. I may be jumping the gun by reaching out to hemifacial spasm persons, but I want all the knowledge I can get before that appt. I even e-mailed Dr. Jannetta in Pittsburg, but he has not answered all my questions. However, he did e-mail me his phone number with the message, "Let us talk". Sorry, this has gotten so lengthy.

I've been working, but not without mistakes, etc. My boss is really understanding and has even bought my a much larger monitor for my PC.
It still gets very frustrating at times.

With one eye I don't have depth perception which is not without problems.

I realize I'm lucky it's only 1 eye and not both!!! I really admire all the belphos for their spunk. I've been lurking at this site for a year and a half. Reading and learning.

I am a grandmother of seven beautiful children and mother of 3 wonderful children and wife to my husband, who's had to be very patient with me.

I'm really talky today, that's not like me. I think I sign off now.

Sharon




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Re: Hemifacial

Re : Re: Hemifacial --- Sharon L OHara
Posted by Delaine Inman , May 31,2001,10:02 Top of Thread Archive
Welcome. Many of us with BEB have one eye that is much worse than the other. Mine is the left. When my symptoms first started it closed, but both eyes blinked and teared. Finally the right started closing as though to just give in to the left one, never with the force or discomfort of the left. Both eyes ever close?



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Re: Hemifacial

Re : Re: Hemifacial --- Delaine Inman
Posted by Sharon L OHara , May 31,2001,10:33 Top of Thread Archive
I've never had any trouble with my right eye, at least, not yet.
I guess I'm really leaning toward the hemifcial more than BEB, but I'm
not a doctor.



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Re: Hemifacial

Re : Re: Hemifacial --- Sharon L OHara
Posted by Shirley-Arkansas-USA , May 31,2001,11:18 Top of Thread Archive
Sharon, I'm really glad that you decided to post. If you've been lurking for a year and a half, you already know us. Welcome to the family.
It is nice to hear a little about you and your family. Jobs can be real stressors. It does sound as though your employer is trying to work with you on this, though. I know that it can be very difficult to continue a job with your symptoms.
I think that following up with Dr. Jannetta would be a good thing to do. I believe that he is in that same group or hospital as the Dr. Kassam that I was talking about that gave the talk on the Microvascular Decompression Surgery.

If it is HFS, I know that it is scary but it can be surgically corrected. Just be sure that you go to the best surgeon available to have it done if that is the route that you choose to go. I know that I am always harping for people to purchase the audio tapes but they are a wealth of information. It would be well worth the four bucks to listen to that one tape. The BEBRF doesn't make anything off of them. The cost is just for making the copy or copies and postage.

Don't be shy. You can be talkative anytime you feel like it. We're all out here working together for a common goal. (and to sometimes have a little fun).

Shirley in AR.




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Doctor/Patient relationship ...

Re : Re: Hemifacial --- Sharon L OHara
Posted by Moderator-JB , May 31,2001,11:59 Top of Thread Archive
Sharon:

If you started this in 1998 and it was Blepharospasm it most likely would have progressed to include both eyes by now.

Some physicians have the closed mouth approach. It may work for them but is an obstacle for the patient. You are the consumer and he is not providing what you need or want. You are doing all the work (research) and he is receiving the benefit of it. This is far too important a game to leave to chance and guessing - look for a doctor who will work on your problem with a team approach.

Judy




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Re: Hemifacial

Re : Re: Hemifacial --- Sharon L OHara
Posted by Sally - in - Idaho , May 31,2001,15:40 Top of Thread Archive
Welcome, Sharon. Don't worry about being "talky." The people on this bulletin board love talky people because it gives them a chance to talk back. You're getting some good answers and suggestions here. Come often and share with us.

Sally in North Idaho




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