what if botox doesn't work


Posted by Nancy MacDonald , Aug 22,2001,10:08   Archive
Hello I need your advise. I have been diagnosed with blepharospasm and meige syndrome. Am going to a specialist at Mass Eye and Ear in Boston. This Dr has been studying this condition for 16 years. I had my first botox injections August 1st and another booster set of shots on August 16th. My symptoms seem to be getting worse. Has anyone else experienced this. my eyes are pretty much closed all the time now.
I have tried hats headbands benadryl etc. Any suggestions??



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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by marie berger , Aug 22,2001,10:22 Top of Thread Archive
Hi Nancy,
I have been diagnosed with Bleph for about a year now. My first Botox injection was last Sept. Have had 3 since (every 3 mo.) The hardest thing to learn here is patience. It takes so long for the doctor and the patient to find the right dosage and strengths of medications that work. Everyone is different, but believe me, this is the place for support and encouragement. Good luck to you and keep praying.

Marie in Florida where it is hot and sunny ... for now.




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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by Owen Taylor , Aug 22,2001,10:43 Top of Thread Archive
Nancy:
I have just returned to work for the first time in a while. I had my first injections in early June and had my third set, (including a booster set) three and a half weeks ago. My eyes were worse until the past few days. I was pretty depressed and worried that I wouldn't function well again but I have gotten quite a bit better. I still can't drive very far but have no pain, my eyes don't stay closed very long, (except durng driving or around bright light) and I can play normally with my kids and even read to them.

It sure was frustrating and scary for a while. My eyes were helped when on the third set he injected from below my cheek to mid forehead.

While I realize everybody is a little different I had a lot of help from Panoptx brand dark glasses, ( I wear them all of the time). They have a web site with pictures. The difference in these glasses is that they block out all perimteter light by using a foam cushion around the perimter - they don't look to goofy... I am still waiting for the FL-41 glasses I ordered a couple weeks ago in the hopes that they will allow me to drive but in the mean time these glasses have sure helped.

So with all of that, Hang in there - There is at least one person who got better after getting a lot worse...

Owen




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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by kerry horton , Aug 22,2001,13:51 Top of Thread Archive
Hi Nancy:
My Mom is in the same boat as you. She lives on Long Island and I live in CT. We just got back from the BEB conference and we learned so much.
Mom developed symptoms of BEB in January. She had her first set of Botox injections at the end of June. Unfortunately she only got one day of blissful relief. We were devastated the following day when her eyes shut down again. The emotional turmoil of this disease can be debilitating all by itself and make the symptoms that much worse.
In this month's Weight Watcher magazine they talk about dealing with life's changes. Some of the hardest are those that are indefinite in nature. They can be the most difficult to deal with because "ambiguous changes don't offer closure...leaving you with a sense of unresolved grief, guilt and anger." I think that is the hardest part of this disease. We just don't know if anything will work or if things will get better so it is hard to know how to feel. We are left trying to focus on the things that we feel that we can "control". One of those is definitely taking "ownership" of BEB by learning all there is to know about it.
Mom and I have come to learn that Botox seems to take time for most people before they find just the right dose. Confidence in your doctor is absolutely critical. She just got another set of injections yesterday - so we are hoping that they kick in soon - with "guarded optimism".
I truly hope your eyes begin to "behave" soon.
I like this saying - "It ain't brave - if you're not scared." People fighting BEB are some of the bravest people I've met.
You are not alone.
Kerry




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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by Lynn Yarbrough , Aug 22,2001,20:36 Top of Thread Archive
Hi Nancy,

I was also diagnosed at Mass Eye & Ear back in 1990, and had the shots shortly thereafter. Botox is much different than most meds you might take; it's a lot slower in getting to full effect, and it may take three weeks to get the full benefit. Also, the condition is progressive, and you might have been on the way down at the time of your first shots and felt mostly the bottoming out before the shots kicked in. It's likely that you are not getting anything much from the second set of shots yet.

Please don't panic yet: there's a lot of experiences you will go through in the coming months, and most likely some of them will be delightful, if impermanent. Ride with it, and work with your Dr. to find the right mix of injection sites and doses to be most effective. It took me about six years and four Dr.s to work out a balance that now lets me go 7 months between shots.

To answer your original question: there are several options to pursue: Myobloc (Botulinum B), surgery, neurectomy, etc. Overall, I suspect B'm A or B is most likely to work out well.

Good luck, and hang in there!

--- Lynn




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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- Lynn Yarbrough
Posted by kathy , Aug 23,2001,10:25 Top of Thread Archive
lynn. is there any way you could share the ways your doctor figured out how to make them last 7 months??? i would like to know, especially if you had to have them more frequently previously.



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- kathy
Posted by Lynn Yarbrough , Aug 23,2001,13:03 Top of Thread Archive
As far as I know, it has been pure trial and error. I started off with 9 sites around each eye, re-inject after three months. Then 8, 7, 6, 5 sites over the 11 years, with 6 different Drs but steadily improving effect. Now it's steady at 6-7 months, 5 sites. A couple of years ago the shots gave me strabismus (double vision) in the periphery, so we backed off on the dosage at one site in each eye. I still have a little trouble with double images in each eye beyond about 40 degrees off center.

Feedback to your Dr. is important at every visit. Success in treatment requires that you be a team and communicate as needed. Let the Dr. know what you are experiencing over time, both in your eyes and in your feelings. Keeping a log or diary on a weekly scale seems useful (but I'm terrible about such things and don't do it.)

--- Lynn




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Re: what if botox doesn't workb

Re : Re: what if botox doesn't work --- Lynn Yarbrough
Posted by Nancy MacDonald , Aug 23,2001,15:21 Top of Thread Archive
Hi Lynn Do you mind if i ask who your doctor is in boston
My Doctor is Gary Borodic I just found him and don't know much about him and i am wondering if there is another specialist around. Thanks for replying

--modified by Nancy MacDonald at Thu, Aug 23, 2001, 15:23:32




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Re: what if botox doesn't workb

Re : Re: what if botox doesn't workb --- Nancy MacDonald
Posted by Lynn Yarbrough , Aug 24,2001,12:05 Top of Thread Archive
Dr. Borodic was the first Dr. to give me Botox shots. He is an excellent researcher and writer on BEB, although I must say his "bedside manner" I found to be overbearing. Anyhow, He was the first in the Boston area and I am not aware of any others. BEBRF should be able to tell you if there are others in Boston. I have a faint memory that MAYBE there is one in Rhode Island. I know there used to be one at Univ. Vermont.

In 1990 not much was known about how to use Botox -- it had just been approved by the FDA for use in BEB cases -- and IIRC the dosage was fairly high. To Dr. Borodic's credit, he was no faint heart in setting dosages.

--- Lynn




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Re: what if botox doesn't workb

Re : Re: what if botox doesn't workb --- Lynn Yarbrough
Posted by Nancy MacDonald , Aug 28,2001,07:28 Top of Thread Archive
Thanks Lynn for your thoughts on Dr B. I will check with foundation on other names. Thanks again for your help



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- Lynn Yarbrough
Posted by kathy , Aug 24,2001,10:08 Top of Thread Archive
thanks! i will take this in to him and ask if there is some way we could figure out how you did it. it would be really nice NOT to have my injections so frequently. i suppose when you try different things however, there's always the chance that your eyes might react worse. i think we are both striving for stability now during these hot months and wait for the cooler weather to make some positive changes. but i do appreciate it and will discuss this with him.



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- kathy
Posted by Kelly Saffell , Aug 23,2001,21:35 Top of Thread Archive
I'm right there with you Kathy. I get mine every 8 weeks for beb and every 12 in the jaw for meige. I'm doing ok but there is definitely no end in sight!



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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by Moderator-JB , Aug 22,2001,20:44 Top of Thread Archive
Nancy:

You are pretty new to the injections. It usually takes a minimum of 3 shot sessions for the doctor to fine tune the placement and number of Botox units best suited for you.

Botox affects all of us somewhat differently. From the beginning (almost 5 yrs. ago) my Botox reactions have been mixed. My left eye is helped little because of Apraxia in that eye. My right eye is helped more. The movement and most of all pain from the jaw spasms is helped immensely from the Botox. (I have Meige and Torticollis)

Give it some more time, (easy for me to say :)

Judy Blackman
blkmn36@earthlink.net
Please e-mail me and we can chat if you wish.




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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by Virginia , Aug 22,2001,22:55 Top of Thread Archive
In addition to the suggestions others have posted, there are medications which help some people. I take clonazepam, but others get help from other meds. You might want to discuss these options with your doctor.

You might have apraxia of lid opening. If the doctor has been treating BEB patients for 16 years, he probably is aware of this possibility and can advise you on it. There is information about apraxia on this site (go to main page and scroll down to find it).

Good luck and hang in there. Sometimes it takes a while to find out what will work for you.




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Re: what if botox doesn't work

Re : what if botox doesn't work --- Nancy MacDonald
Posted by kathy , Aug 23,2001,10:36 Top of Thread Archive
what was the purpose of the booster shot? the first one didn't work at all? i have had times when it took up to 3 weeks for the botox to work. there's also the off chance that the batch of botox was not potent. i have heard of that on this board.



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- kathy
Posted by Nancy MacDonald , Aug 23,2001,15:15 Top of Thread Archive
Hi Kathy Yes the booster was because the first set didn't work . Well that is encouraging... 3 weeks huh. Well I guess I have nothing else to do but wait. Thanks for replying.



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- Nancy MacDonald
Posted by kathy , Aug 24,2001,10:13 Top of Thread Archive
nancy, i have had this happen as i explained to you and also lynn did. it IS very frustrating to wait that long but maybe this could be part of the answer. it is usually not the norm however.



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Re: what if botox doesn't work

Re : Re: what if botox doesn't work --- kathy
Posted by Nancy MacDonald , Aug 23,2001,15:16 Top of Thread Archive
Hi Kathy Yes the booster was because the first set didn't work . Well that is encouraging... 3 weeks huh. Well I guess I have nothing else to do but wait. Thanks for replying.



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