first botox: still have very little voice
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Posted by: Frances Jordan ®

09/06/2002, 01:01:17
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I got my first Botox shot in both vocal cords on Aug. 20th here in Dayton. I have been whispering since the 3rd day after and not able to teach. I was never depressed with my speech before the shot - embarrassed and frustrated sometimes, yes, but not depressed. I am now depressed and scared. Has anyone ever lost their voice and not regained it??? Have my vocal cords been irreparably damaged? Did I talk too much those first 3 days and hurt my cords myself? I'm trying not to run in circles and wave my hands in the air in a panic, but it's difficult. Now I shall deep breathe and wait patiently and philosophically for an answer.






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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: Linda S. Adamson ®

09/06/2002, 09:19:03
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Paula, I can understand your state of concern at this first experience -- my own first treatment isn't all that far behind me. What I have found (and have learned from so many others on this BBd, at support group meetings, and at the patient symposium I attended) is that there's lots of variation, and the impact of Botox varies both by individual and over time for each individual. I had very different reactions to my 2 treatments, which were on opposite sides and of different dosages. With one, my voice got definitely worse immediately, and didn't improve very much over time. The second treatment gave me a nearly normal voice almost immediately (I'm AB, so my specifics may not apply to you if you are AD), which lasted a few weeks and has been very gradually tapering off.

I've found that learning as much as I possibly could from every possible source gave me a great sense of security with the uncertainties and variations (if that's not a contradiction!) in the treatment of SD. I realize I've got no guarantees, that each treatment may get very different results until my doctor and I settle into a pattern that works best for me, and that the Botox may not work for me forever; I wasn't even counting on getting any benefits, since the likelihood of good results for AB is much less than for AD.

I'm also an educator, and I know what I went through when I initially realized that I had lost my "teacher voice." I can empathize with what this is doing to you as a teacher (what grade/subject?); please hang in and know that the result immediately post-Botox won't last forever, by all I have learned so far. And there may be much better voice down the road for you.

all my best,

Linda Adamson

AB, Annapolis MD

--modified by Linda S. Adamson at Sun, Sep 08, 2002, 10:05:58







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Re: first botox: still have very little voice
Re: Re: first botox: still have very little voice -- Linda S. Adamson Top of Thread Archive
Posted by: Lylia Bennett ®

09/06/2002, 15:19:39
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Hello, I understand how you feel. It has been several years since my first Botox injection. I was injected with 5 units in each cord. Within 3 days, I was totally voiceless. Not even a whisper. I also experienced flu like symptoms for two or three days. I hesitate to tell you this, but I could not speak for 5 weeks. Then the voice began to return, and it was miraculous. My voice was 100% normal for about 6 months. During those first few weeks my husband was more upset than I. He thought I would never be able to speak again. In my research before the injection, I knew that the voice would be breathy and weak, but would get better. I didn't know the voice would be totally gone, however. As a result, I didn't panic. Also, I had given up my position with the school system several months prior to this because of the SD so I wasn't in dire need of a voice. It sounds as if your injections hit the mark well. Your voice will return. Hopefully, you will feel a miracle has happened in your life. Next time,perhaps, the dosage could be dropped so you won't have such extreme reaction to the Botox. Don't fight trying to speak. The Botox will need to wear off just a bit before your voice recovers. Keep us informed. Good luck. Lylia Bennett diagnosed 1989 with AD/SD. Berke surgery 7/2000.






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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: john brenner ®

09/06/2002, 10:39:22
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Frances,

What you are experiencing can be a normal reaction to the Botox shot. It can take up to a few days to feel the full effect (in your case 3 days). What you did not mention was the dosage. Getting the right dosage is 50% of the battle (the other 50% is getting injected in the right spot). Given that you are now whispering, it appears that the doctor hit the right spot.

Dosage however is another issue. Get too much (everyone is different)and you can spend up to 6 weeks like you are now ("breathy" and no volume). Get too little and you will not realize the benefits for as long and need to go back sooner for a shot.

I have been getting shots for over 2 years now and still not sure that I have found the right dosage. I get 2.25 units injected into each side. The "normal" dosage is 2.5 units, but again everyone is different. I have read some people getting as low as .625 units and the other day saw someone that had gotten 30 units and still needed to get more!

Given that you are a teacher, I would recommend working your way up the dosage scale rather than down. Like you I and currently 2 and half weeks into my last shot and I also do not have any volume.

Hope that this is helpful and more importantly that we can both speak next week.

John

AD / SD







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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: Larry Becnel ®

09/06/2002, 14:59:15
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The prior posts in answer to your question pretty much said everything and said it all well. What you're experiencing is frustrating, I know, but I trust that that you will in due course benefit from the treatment. This Botox business is a rocky road--but, for me, there's no other road available. (Oh, I tried running in circles and waving my hands in the air in panic, but my friends said I looked ridiculous.)






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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: Sherry A. Kjellberg ®

09/06/2002, 16:43:37
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I call myself "the Botox Queen". Six years ago I was "airbagged" in a low-impact car wreck. (Airbags can do some major damage in low impact wrecks). After many docs and the usual run-around that you are all aware of, I found a neurologist who diagnosed my chronic whiplash pain as "dystonia" and started injected Botox every four months. That was a miracle, as the chronic pain went away. It did not help my voice, however, and I'm a community relations dir. for a large alcohol and drug treatment company...high voice usage. A new doctor from Johns Hopkins moved to Denver and I started Botox injections with EMG guidance last November. The first few injections he gave me made my voice worse. Just this Wednesday he finally upped the dosage to 3 cc.s on each side and I almost immediately got a soft breathy voice. Hooray! I hope my old voice goes away for as long as it wants to, if it means I'll have a "normal" voice for a period of time. So, don't panic. Be glad. I've had to go through about ten injections, gradually more each time, to finally loose my voice! Botox wears off after a few weeks or months. Enjoy your quiet self and embrace it!!! You will be glad, and next time the doctor will know not to give you as much.

-Sherry in Denver







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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: Michelle Jen ®

09/13/2002, 21:36:13
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Hi Frances,

I had my first Botox shot on June 5th. I could not talk above

a whisper for a full seven weeks! Then I started to get my

volume back in the 8th and 9th weeks but it was still

hoarse sounding for a while. Now it's pretty good. It

was scary not knowing when it would come back, especially

when the doctor finally admitted that he was surprised

it was taking so long and didn't want to make any guesses

on when my voice would return. (He finally told me that

I should come see him at the end of September if it

didn't come back by then, but it came back over

a month ago).

-Michelle







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Re: first botox: still have very little voice
Re: first botox: still have very little voice -- Frances Jordan Top of Thread Archive
Posted by: chris moore ®

09/28/2002, 11:15:12
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Hello Frances, I got my first botox injection this past May, 2002 after 3 years of struggling with SD. I was so frustrated because I went into a whisper stage for about a month and it seemed like a year. Finally my voice did improve and almost got to a place of normalcy from about July 1st 2002 thru Sept 7th or so. My voice is getting bad again quite quickly, maybe right on schedule as been posted in here, lots of folks have mentioned the 4 month mark as an expected time frame for the need of a second shot. I'm somewhat depressed over this whole SD issue too. I think I've always been able to keep things in perspective by realizing how much worse things can be but lately its been tough. I almost gagged AND I swallowed during my first injection and I wondered if I messed the doctor up by my moving the injection area around somehow. I'm contemplating whether to get another shot next month , right now. I'm thinking i'm going to give it a try . I wish you luck, Chris Moore






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Re: first botox: still have very little voice
Re: Re: first botox: still have very little voice -- chris moore Top of Thread Archive
Posted by: David Barton (NZ) ®

09/28/2002, 12:19:17
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Hi Chris

Yes, the gag/swallow reflex can be a problem with the Botox shots. A couple of suggestions .... having a popsicle stick or similar across the mouth makes it harder to swallow ... and consider asking your doctor to spread the contents of the syringe over more than one site ... so, inject in 2 or 3 sites - that way it is a kind of insurance policy that the Botox will reach the right spot.

Good luck!

David Barton (AD/SD, Auckland, NZ)







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Re: first botox: still have very little voice
Re: Re: first botox: still have very little voice -- chris moore Top of Thread Archive
Posted by: gavin hadley ®

09/30/2002, 08:55:42
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Chris..

According to your message, you have had about 2 months of near normal voice. Count your blessings my friend because that is pretty darn good. My "good voice" period is normally more like one month. Get that next appt. scheduled and like David said, have your ENT try spreading the botox around a little. You could get even better results.

good luck.

gavin hadley







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Re: first botox: still have very little voice
Re: Re: first botox: still have very little voice -- chris moore Top of Thread Archive
Posted by: Eileen Giddings ®

10/04/2002, 16:31:42
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I just had my first botox on Sept 17. I swallowed the whole time!! The more he told me not to swallow, the more I swallowed. But, my voice is much smoother than it was, but it is still breathy with not much volume. But I'll take it. Its the first time I can be understood on the phone in 6 years. I'm very happy. I guess if you don't expect too much, even a little improvement is worth it. I also got botox in my left neck muscle because I have spasmodic torticollis. My head is pulled to the left. I have been able to sleep much better. It's so hard to get to sleep when your neck is so stiff and un relaxed. I always thought it was my fault ; blamed it on stress; but now I know it isn't my fault.

Good luck.






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