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Botox repetition
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Posted by: Refua shelema ®
07/08/2012, 17:30:44

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After 12 years and 2 unnecessary eye and forehead lifts I finally found out I have blepharospasm. I did an injection and had no issues for 25 days straight. Then went back and the doctor says he didn't think I have blepharospasm. I almost cryed because this was the fist instance in my life where i had consecutive relief for over 2 day straight. He gave me a 2nd injection mix with some other drug which only lasted 7 days. QUESTION: if I need injections months is this a problem? And does anyone know of an experienced injector in NY?



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Re: Botox repetition
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Posted by: judith k ®
07/08/2012, 18:34:52

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Hi,

Sorry to hear all this.

Please clarify. You were diagnosed with blepharospasm. What were/are your symptoms, and why were the eye and forehead lifts "unnecessary"?

Is the doctor who diagnosed you different from the doctor who injected you?
What kind of doctor/s? Neurology, ophthalmology, movement disorders?

If you are saying that you never before went for more than 2 days without relief
and that after being injected with botox you had 25 days of relief, that is a HUGE improvement! That sounds very significant!
You could ask your doctor WHY, given your history, he thought you DIDN'T have blepharospasm.
Did he think the relief ought to have lasted for more than 25 days? If so, didn't he talk about adjusting dosages or injection sites?
There can be a lot of trial-and-error involved in figuring out the best injection sites and dosages for YOU.

One suggestion is that you talk to that doctor more about this.
If you don't want to see that same doctor again, get a copy of your medical records (you should do that anyway), be sure you have a record of where the injections were given and what the dosage was.
And find out what the "other drug" was that was mixed with botox the 2nd time.

And then get the diagnosis confirmed, and see an experienced injector, whether it's the doctor who diagnosed you or another one.

Whether you are talking about upstate or NYC, you're going to be able to get to an experienced injector. You haven't said where you live in NY, but I think you're probably very lucky—even if you have to take a bus to get somewhere. There will be plenty of good doctors within reach.

You should make sure you get a proper diagnosis, though.

Do you have insurance, is that a problem?

If you go to the blepharospasm.org page, look for the support groups—one thing you can do is get in touch with the support group contact person in your area.
Also, you can contact the BEBRF (benign essential blepharospasm research foundation) office in Beaumont, TX, and you can get a list if doctors in your area who inject for blepharospasm (though being on the list of NY injectors doesn't constitute a recommendation).

I think that others on this board who are in NY will also make recommendations.
But where are you?

Judith K
May you have a Refuah Shlema~



Modified by judith k at Sun, Jul 08, 2012, 19:46:08

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Re: Botox repetition
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Posted by: June in Toronto ®
07/08/2012, 18:40:20

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On the main bulletin board page there is a link for BEBRF at the top - contact them and they might have doctors that have been recommended in NY. Others might post back to you.

So sorry you are having this problem - why did the doctor change his diagnosis - on what grounds? As you had such good results from the botox injections (I assume it was botox?) why did he change it for a '2nd injection mix with some other drug'? I guess the answer to the latter question is that, telling you that you didn't have BEB, he wouldn't give you the same injections, but why the 2nd mix? Strange.
best wishes June in Toronto




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Re: Botox repetition
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Posted by: DianeLDL ®
07/09/2012, 21:54:50

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If you are in NYC, you should be able to find an experienced neurologist in movement disorders.

There should be someone on the BB or as mentioned BEBRF website.

Refuah shlemah!

Diane
דיאן




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Re: Botox repetition
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Posted by: lisao ®
07/10/2012, 08:06:25

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Dr. Stephen Frucht, director of the Movement Disorders Clinic at Mt Sinai hospital in Manhattan. (link with info attached)

I have not yet gotten botox from him (though I am scheduled to), but the man who recommended him to me has been getting botox from him for years and says he is extremely skilled and effective. (This man has multiple dystonias and tried botox without success from several neuros before he found Dr. Frucht, who was able to help him dramatically. He doesn't get injected for BEB because he has too many other dystonias requiring the max allowed amount of botox. But I gather from speaking to Dr. Frucht that he has a great deal of experience with BEB.)


Related link: http://www.mountsinaifpa.org/patient-care/practices/movement-disorders-center

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