Update-Botox-Hemifacial Spasm


Posted by denise mckew , Apr 29,2002,08:35   Archive
Hi Everyone

I saw my specialist, Dr Tarsey in Boston, last Tuesday for my first Botox for BEB/apraxia. I am seeing a lot of improvement with my eyes twitching and light sensitivity.
Unforunatly we are noticing signs that I still have some hemifacial spasm going on. This is how I was last Oct/Nov before the full blown BEB started. There is a pulsing of my lower eyelid on the right side, spasms that pull my mouth to the right. And when I get tired, or have been out too long, my right eye gets droopy.
He also is looking at the nerve damage on the right side of my face a little more intensly as I'm coming up on a year since my accident, and my face still has pain and numbness.
I see my nuerologist here in Maine in about a month. I'll be interested to see what notes Dr Tarsey sent her. The nueroligist here in Maine, Dr Carinsi, feels that my blepharospasm is secondary to something else. Anyone have any thoughts on that?

I was out shopping at TJ Maxx with my sister, and found many pink lens sun glasses that really minimize the flouresent lights. I got a pair for ten bucks. Pink seems to be in style. Now I need a perscription pair.

It's been snowing, sleeting, raining here in Maine for 2 days. We should see the sun tomorrow.

Anyhow, I hope everyone is doing well.
Take care
Denise





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Re: Update-Botox-Hemifacial Spasm/denise

Re : Update-Botox-Hemifacial Spasm --- denise mckew
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 29,2002,12:18 Top of Thread Archive
Let us know what they think, the beb is secondary? I thought that you mentioned you are an artist. What kind of art do you like to do?



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Re: Art/Kathy

Re : Re: Update-Botox-Hemifacial Spasm/denise --- Kathy in Atlanta
Posted by denise mckew , Apr 30,2002,12:39 Top of Thread Archive
Kathy,

I will paint anything! Right now I am doing some tole painting welcome signs and working with acrylics. I like working with contrasting colors - for example I just finished an eggplant on a chartruse background. It's very much on the graphic arts side. Over the winter I painted our androndack chairs bright yellow, and dinette set in a colonial blue. I have done oils in the past but find it difficult to work with oils now. I limit my painting to no more than 2 hours a day, because of eye strain and muscle aches, and acrylics are easier to stop and start with.

I also do photography, sew, crochet etc - anything creative. Martha's got nothing on me!...except maybe some organizational skills and a few million dollars.

Still getting better from the botox shots. My eyes are nearly back to normal and I have only had one eye spasm today. The right side of my face keeps pulling up. Who cares...I can see!

Take care,
Denise




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Re: Art/Kathy

Re : Re: Art/Kathy --- denise mckew
Posted by Pippa , Apr 30,2002,17:56 Top of Thread Archive
yes, isn't it wonderful how we can get pleasure from the small things now...like being able to see! Maybe we have had to get things into perspective to be able to appreciate things we took entirely for granted before.
What is tole painting? And what are androndack chairs? (S'cuse my ignorance again!)
I like to paint too, for fun, and just like a child. Never been taught, but enjoy the way the hours fly past without my noticing when I get started. I just copy pictures from say a Christmas card. I like oils because it is easy for me to rub out the mistakes with turps, and I make plenty of mistakes. Why do you find it difficult now with the oils? i haven't tried any since this BEB began though. But now that you have put it into my head....
Pippa



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Re: Art/Kathy/Pippa

Re : Re: Art/Kathy --- Pippa
Posted by denise mckew , May 01,2002,08:32 Top of Thread Archive
Hi Pippa,

Tole painting is decorative painting that I do on slate and wood. I work from patterns. I also am begining to make up my own. The androndack (sp?) are large wooden chairs usually used out side. You see them in a lot of seaside pictures. They usually tilt backwards and have large arms. To place your summer cocktails on!
I am using acrylics more now since my injuries. I just find it easier to stop and start with the acrylics. The clean up seems easier too - warm water.
I'll take some pictures and try to post some of my work.




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Re: Art/Kathy/Pippa

Re : Re: Art/Kathy/Pippa --- denise mckew
Posted by Sally - in - Idaho , May 01,2002,10:22 Top of Thread Archive
Since you asked, Denise, it's "Adirondack" ... like the mountains. They are such comfy chairs, even the cheap resin ones.

Sally in North Idaho who could drag a chair outside today, but I'll wait for evening starlight.




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Re: Art/Kathy/Pippa/oils

Re : Re: Art/Kathy/Pippa --- denise mckew
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 02,2002,06:28 Top of Thread Archive
Oils are more difficult and time consuming because you MUST have adequate ventilation and you have to take care of cleaning the brushes, disposing of the chemicals , etc. I do do oils.



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Re: Art/Kathy

Re : Re: Art/Kathy --- denise mckew
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 02,2002,06:24 Top of Thread Archive
Your colors sound great! I also have to limit my painting to that amount of time, sometimes less.



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Re: Update-Botox-Hemifacial Spasm

Re : Update-Botox-Hemifacial Spasm --- denise mckew
Posted by June in Toronto (June Floyd,June in Toronto), Apr 29,2002,14:22 Top of Thread Archive
Hi Denise, glad you are getting some improvement after your first botox treatment. Also hope the neuro can figure out what's going on for you next month.

Some people on this bb have mentioned they use pink lights at home and find them easier on the eyes - so if you find the pink lens sun glasses are good for you, perhaps you change some of your lights to pink ones. Take care

June in Toronto




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Re: Update-Botox-Hemifacial Spasm

Re : Update-Botox-Hemifacial Spasm --- denise mckew
Posted by Claire Wolstencroft , May 01,2002,13:22 Top of Thread Archive
Denise, I'm interested reading your comments about flourescent lights. When my eyes first started misbehaving, I had a neurologist who was convinced i had Myasthenia gravis..I haven't and spent two weeks in a hospital ward with huge flourescent lights. I couldn' t open my eyes for more than a few seconds and they decided that my "Myasthenia" was getting worse. As soon as I went home to soft lighting my eyes were much more well behaved and when I went back for a check up they decided my eye problems were attention seeking behaviour!!! I only put two and two together when we went to buy a car and in the showroom I couldn't keep my eyes open...you guessed...flouresecent lights!
My neurologist was convinced that my eye problems were psychological...he told me it was impossible that my eyes were so erratic!!!Thank the Lord for the optometrist who told me that it was blepharospasm, and the neuropathologist who explained the apraxia bit..I appear to have both. It's been so good reading the bulletins and for the first time in ages not feeling alone any more. And i too worked in a school!
I don't any more as it's too far to drive..my greatest joy has been having the time to home baking with my sons (13,15) and I'm hoping to start an art course in September
Love to you all,
Claire in beuatiful Macclesfirld U.K



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Claire Wolstencroft
Posted by Sally - in - Idaho , May 02,2002,00:06 Top of Thread Archive
Hi Claire,

Those fluorescent lights can be the most nasty things ever! I have to get in and out of stores quickly before they do their full number on me and cause me to become disoriented. The hour+ in church is usually more than I can take. By the second half, I'm in misery. We know it's not psychological, huh!!!

Sally in North Idaho who would love to visity the U.K.




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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Sally - in - Idaho
Posted by Claire Wolstencroft , May 02,2002,03:29 Top of Thread Archive
Hello Sally!
Church is a problem for me too...but it's because we have OHP for the choruses. I have problems with looking up too, and by the end of church my eyes are nearly permanently shut!
And then I start to fall asleep while the minister is preaching..as long as I don't start to snore or fall off the chair!
Do pink glasses help????
Love from UK where it's cold but the flowers are beautiful..and my kittens are driving me mad!
Claire



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Re: Pink Glasses

Re : Re: Update-Botox-Hemifacial Spasm --- Claire Wolstencroft
Posted by denise mckew , May 02,2002,08:15 Top of Thread Archive
Claire
I have gotten relieve from the pink glasses I bought. But make sure you try them in flouresent lights. I found that some filter light better than others.
Take Care
Denise



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Re: Update-Botox-Hemifacial Spasm/Claire

Re : Re: Update-Botox-Hemifacial Spasm --- Claire Wolstencroft
Posted by kathy in Atlanta (kathy,kathy in Atlanta), May 02,2002,09:20 Top of Thread Archive
Yes!! the fl41's come in different strengths to block out certain ultraviolet wave lengths that can trigger these spasms. Also try a pair of dark regular glasses to just calm your eyes down for awhile. When are judy and bob going to get this link posted for this non-ingestibele so we don't have to keep saying the same thing over and over...I'm beginning to feel like Shirley's parrot!!



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Re: Update-Botox-Hemifacial Spasm/Claire

Re : Re: Update-Botox-Hemifacial Spasm/Claire --- kathy in Atlanta
Posted by Ann Doyle , May 02,2002,16:48 Top of Thread Archive
If you wear glasses, your eye dr. canblock out any of the rays. Fluouescent lights hurt ,my eyes but so does murcery ligts/

Ann Doyle



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Claire Wolstencroft
Posted by Sally - in - Idaho , May 02,2002,11:32 Top of Thread Archive
Claire, I haven't gotten any FL41s yet because I want to be able to "sample" the differnt tints. I've suggested to my neurologist that he order some on $25 reading glasses and have them available in his office for patients to try, then they could order from Knighton. He hasn't taken me up on that suggestion, except to say that I could do that on my own. Well, I don't feel that affluent but thought his practice could manage such.

I, too, fall asleep in church when my eyes are to the point of complete closure. I used to sit beside an elderly woman who poked me (hard) if I dozed off. Sadly, she passed away a couple of weeks ago. I'll have to find a new poker to sit beside.

Sally in North Idaho where it is a most lovely day ... will be in the lower 70s with blue sky and breeze.




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Re: Update-Botox-Hemifacial Spasm

Re : Update-Botox-Hemifacial Spasm --- denise mckew
Posted by Ann Doyle , May 02,2002,16:43 Top of Thread Archive
There is an operation for hemifacial Spasms. It is microvascular decompression. Dr Jannetta and Dr Kassam in Pittsburgh are very good. There are 2 sites for hemifacial spasm: Circle of Friends and hfs-assn. use Yahoo as the search engine. Ann Doyle



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Re: Update-Botox-Hemifacial Spasm

Re : Update-Botox-Hemifacial Spasm --- denise mckew
Posted by Ann Doyle , May 02,2002,17:02 Top of Thread Archive
Hemifacial Spasm is the 7th cranial vein sitting on nerves. The MVD operation puts a piece of teflon between the two, so there is a cure for HFS for most people but as with all operations , there are risks envolved.
There is no known cure at this time for Bleph and I think may start with the basil ganglia. I believe the Meige syndrome is more to do with the mouth.
Ann Doyle



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Ann Doyle
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), May 02,2002,20:42 Top of Thread Archive
Anne, I think HFS is an artery pressing on the 7 th facial nerve.I have it and my botox is wearing off on the cheek area and I am getting a lot of spasms on the left side of my face.Yes I am aware of the operation, but as I have other medical problems I do not wish to risk it at this time.Edith Nalepa



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Edith Nalepa
Posted by Ann Doyle , May 02,2002,23:57 Top of Thread Archive
You are right Edith. I had MVD Oct. 2000 and was spasm free for 2 days. I'm the only one they know of that had both, 3 if you include Meige. I am also the only one that it had 0 affect, except for the 2 days on but that could be the beb.



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Ann Doyle
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), May 03,2002,16:13 Top of Thread Archive
Ann, do I understand you to say you had the operation and it did not work?If this is so, what did they tell you was the cause?Am very interested in this. Edith



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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Edith Nalepa
Posted by Ann Doyle , May 03,2002,16:54 Top of Thread Archive
Hemifacial Spasm HFS is a artery sitting on a nerve.There are no specific test for either Hemifacial Spasm or Bleph. When the Dr, opened my skull , he found a red thread on the nerves and cauterized it. I was spasm free for 2 days and the spasms got much worse. My eyes were closed for hours at a time (now days at a time). I made another appt. for surgery and he took an EMG. which showed that I didnt have HFS and the DR.recommended a movement disorder clinic. They both have the same symptoms. Although my doctor did not do the first surgery called MVD. he did develop the procedure and teaches others how to do it. He has done over 5,000 4 or 5 a week. He was voted neurosurgeon of the year 2000 and given an award in Vienna. He is to MVD as Dr. Anderson is to Myectomy and more so. He frequently does the second surgery of others botched jobs.
Anyway, I did go to a Neurologist who specializes in movement disorders and I also have bleph. Very unusual. Just like there are a few cases where a person has HFS on both side, not just one. I have Meige too. Ann Doyle

--modified by Ann Doyle at Fri, May 03, 2002, 16:55:34




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Re: Update-Botox-Hemifacial Spasm

Re : Re: Update-Botox-Hemifacial Spasm --- Ann Doyle
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), May 03,2002,21:36 Top of Thread Archive
Thank you Ann for the explaination. I thought they could tell for sure with an MRI or a similar test if we really have HFS. I have had no tests, but all my spasms have always been only on the left side, I can understand that in a few cases it could be 2 sided. I get good results from botox.Edith



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