SD-AD First Botox Shot question
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Posted by: Amelia ®

05/04/2003, 13:33:24

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Hi everyone! It is going to be so nice to have other sufferers and their families to talk with! What a horrible disease this is! I am 32 and was diagnosed about 3 months ago after having symtoms for about 2 years. How my life changed at work and out in public not being able to talk normally! I became exhausted trying to talk everyday as I am a very outgoing, talkative person and deal with the public at work. Thankfully I have a wonderful husband and mom who really help me get through everyday and they really kept my spirits up. Anyway, I received my first Botox shot 1 month ago. I was breathy for about 10 days, but didn't mind at all since I was able to get the words out smoothly! I felt like within 3 days of getting the shot I had gotten my voice (as well as my life) back. My symtoms did return after only 3 weeks. When I called my specialist, he set me up for another shot this week. I know they play around a little with dosage, but has anyone else had a shot last only about 1 month? I am curious if I can expect it to last longer the more shots I get or what? Thanks for any info and hope to get to know some of you! Take care, Amelia






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Re: SD-AD First Botox Shot question
Re: SD-AD First Botox Shot question -- Amelia Top of Thread Archive
Posted by: Renee ®

05/04/2003, 14:27:07

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The shots will vary from shot to shot and from person to person. I don't think any amount of time is "average" as far as how long the shots last. I don't think you can expect them to last any longer the more shots that you get. The shots vary depending on the amount of botox(myobloc), the location, the skill of the physician in placing the shots, etc. Good Luck and Welcome to the spasmodic dysphonia bulletin board.


Renee ADSD/ Austin, TEXAS







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Re: SD-AD First Botox Shot question
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Posted by: Amelia ®

05/05/2003, 20:28:58

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Thanks for your input! Amelia, Minneapolis, SDAD






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Re: SD-AD First Botox Shot question
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Posted by: David Barton (NZ) ®

05/04/2003, 17:39:01

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Hi Amelia - and welcome to the NSDA bulletin board!

My first Botox shot (2.5 units) only lasted about 1 month too.

In my experience subsequent shots lasted a lot longer. I've had over 40 shots over a 12 year period and currently get a dose of 10 units in one vocal cord only. I wouldn't claim my voice is perfect all the time, but it sure is better and less effort that untreated SD!

We'll look forward to reading how you get on.

David Barton (AD/SD, Auckland, NZ)







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Re: SD-AD First Botox Shot question
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Posted by: Amelia ®

05/05/2003, 20:31:24

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Hi David, I am looking forward to my 2nd set of shots tomorrow (well not the shots but the effect afterward). I am anxious to see how if it does last a bit longer this time. Thanks! Amelia, Minneapolis, SDAD






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Re: SD-AD First Botox Shot question
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Posted by: Tom D. ®

05/05/2003, 18:59:23

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Hello Amelia.

I'm about one treatment ahead of you and I can say, even at this point, that there is light at the end of the tunnel! I suffered for several years with a deteriorating voice and was turning into a nervous wreck trying to deal with it socially and professionally. As SD is not a common thing for MD's to encounter, my condition was (mis)diagnosed as being everything from allergies to anxiety. (I'm not slamming the medical profession here, I'm actually quite sympathetic about the lack of SD information out there- I really feel that any doctor I dealt with was genuinely doing his/her best in order to help me!)

I was fortunate enough to be able to have an extremely astute Speech Pathologist working at the voice clinic that I attended. After extensive therapy, she recognized that I had "hit a brick wall" as far as progress went. An equally competent ENT doctor was in charge of the clinic. When the MD heard my voice and saw the way that my cords (mal)functioned during a scope exam, she referred me to another doctor who deals with SD and other voice disorders a great deal of the time.

In January of this year I had bilateral injections (per side) of 3.5 units . That was my first treatment and the injections were done without a scope to guide the MD to the exact point at which to place the doses. Because my Adam's apple is very thick and quite calcified, the doctor had a great deal of difficulty in getting through it and being able to hit the precise injection spot with the needle. The results were much like you described- short and sweet. I went back in March and had a repeat treatment- this time with the MD using a scope to be able to pinpoint the exact desirable injection site. The dosage was increased to 4.5 units per side. I experienced a breathy voice for about three weeks and then things really improved! My voice, although far from being perfect, is the best it has sounded in the last decade! It is still quite limited, in so far as pitch range and volume are concerned, but the constricted "strangulation" voice is gone and people are remarking that they can at least understand most of what I am saying.

The latest treatment has left me feeling so much more confident and relaxed. I can honestly say that I have not felt better in many years and I'm being reacquainted with what the feeling of relaxation is like!!!

Remember, Amelia this is a long term thing, and it's bound to take some time until you get the dose that's right for you. Hang in there- and always say to yourself "It could be a lot worse- it's only a non life- threatening voice condition and there's someone else out there suffering with a more difficult problem". It's working for me!!

All the best!
Tom D.
9 years AD SD
Ontario,
Canada







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