Re: Thinking of Having Botox Treatment
Hello TerriMy experience with Botox has been good. 37 injections so far over a ten year period. The side effects are usually minor - however many patients experience a period of prolonged breathiness - I'd describe this as a 'main' effect rather than a side effect. The injections take away the effort involved and give you a smooth voice without the breaks typical of SD; however it may be difficult to project your voice over background noise for sometime. At this time Botox injections are recommended by most medical experts to be the treatment of choice for ADductor SD. This website describes the procedure quite well: http://depts.washington.edu/otoweb/botox.html Good luck with whatever you decide. David
Re: Thinking of Having Botox Treatment
Hi Terry,I have had my third botox treatment .People say you have your voice back.It gives the wonderful feeling of being able to express yourself and communicate freely with much much much less effort which is a key i think.
After 20 years you owe it to yourself to try this treatment.I have adductor (ad) spasmodic dysphonia.Think of the neck as any other part of the body that has muscles.I understand your concerns but there are worse things in life.We are very blessed to have this treatment available to us. Keith
Re: Thinking of Having Botox Treatment
Dear terry,
It really does give so much relief, I have had ADSD for 15 years and it was great having botox, I didn't mind the breathiness at all, just being able to talk on the phone and without EFFORT was amazing. And I am absolutely terrified of needles, and it is really not that bad - 10 minutes out of your life (mybe 15) for alot of relief. Give it a try, it's worth it. As to any other side effects, I didn't have any (no swallowing problems or anything) but I would not recommend a hot, spicy soup (eg Laksa) afterwards for a while - one BIG mistake I made!! - it went down the wrong way at a restaraunt and I choked and spat it all over the table (this was a day or two after the injection!). Some people have some problems swallowing liquids (cause the throats too open) but it does take a few times to get the dose just right for you and I got alot of relief from it. 20 years is a long time, you will be so surprised at the ease with which you can talk.
All the best of luck
Narelle
Re: Thinking of Having Botox Treatment
Hi Terri,
Go for it! I can only second the responses you've already gotten. I'm whimping out for my next BOTOX next week. I'll take a Valium before I get the shots.
The worse side effect I had was difficulty coughing. It sounded horrible. Breathiness and difficulty swallowing weren't bad. Being able to speak normally was worth it all.
When people commented about how good my voice sounds, I say, "What a difference a little botulism makes." They think that was the cause of the bad voice. I tell them that's what makes the good voice. Quite a conversation starter; and I can actually hold a conversation. It's great.
What ever you choose, I hope it works for you.Don
Re: Thinking of Having Botox Treatment
Hi Terri,
I may be the only one to suggest you try what I did successfully about 6 years ago,and have no problems now except for the occasional catch in my voice[very minor]
I had severe ADSD diagnose in 1992 and went through 3 years of Botox injections with very mixed results.
Through desperation I tried vitamin B6,[ I won't go into the long story].
It worked and I'm fine.I don't want to dicourage you from Botox, but if you're uneasy about it , taking B6 won't do any harm and may, I hope, help you.
Start with 25 milligrams 3 times a day and look for improvement within 2 months.
If you get any change in your voice please email me.
Good luck
--modified by pat rambo at Wed, May 09, 2001, 11:54:20
Re: Thinking of Having Botox Treatment (and B-6)
Pat,Regarding this and your other message, I'm really glad you feel B6 has been so successful for you. Another person posted about B6 last July. Consider this however. I know (in person, face-to-face) 3 people who have been on Botox for moderate to severe AD cases who, for one reason or another, had to stop the shots after taking them for several years, as you have. Voila!...when they didn't get their next shot on time, the SD they had originally been treated for did not come back with full-force (to the pre-Botox level). Also, while we were in Michigan at the SD Symposium, we talked with a local leader there (who had been part of the original Botox testing in the late 80's) and he is now down to .3 units bilaterally. That is a very tiny dose for a good-sized man. His voice was beautifully smoothe and strong. Bottom-line...there seems to be (in some cases) a *latent Botox-effect* (wish I could come up with better terminology) which enables some people to go off Botox permanently with a much better voice than their original SD. There are also such things as rare remissions. You could be one of those folks who remitted or had the latent-effect. I don't mean to be a nay-sayer (because my philosophy is "whatever works") but, between 1992-1994, I was on a rigorous nutrition and vitamin supplement program because I was convinced I could cure my severe voice-problem (which no doctor could figure out) with nutrition and the proper balance of vitamins and minerals. I just went back and read the labels and I was taking almost 100mgs of B-6 every day. During that period, my voice got worse. I was in the SD-development-process. The process that goes on with a classic case when SD comes on gradually and gets progressively worse until it plateaus at very-severe. I plateau'ed in 1994. The nutrition program and supplements never helped my voice...even though I was in excellent health overall!! LOL.
So, I'm not putting down B-6. The body needs it. But, there might be another reason (which you reveal in your posts) why your voice is doing better. The excellent doctors in Michigan advised us that, just because something happened at the same time as something else, *cause-and-effect* should not be assumed. Alot of people at the Michigan Symposium surfaced those sorts of issues re their own cases. Different things work for different people and all of our cases are unique but that's great that your voice is so much better. --Lynne
Re: Thinking of Having Botox Treatment
Hi Pat,
Are you talking over-the-counter pills, or injections? How often?I ask because I have recently started taking a B complex to help reduce stress. Stress is bad ... bad. Mike
Re: Thinking of Having Botox Treatment
Hi Pat,I read your post regarding SD & B-6. I have had ADSD for 17 years now. I also have a syndrome called Fibromyalgia which is a muscle tissue disorder causing chronic pain all over the body. I think there are 18 tigger points. Well, anyway I recently went to a Symposium on Fibro and I learned a lot from the doctors and speakers there. We, were told B-6 may help, but to be careful with taking over the counter products due to the ingredients, etc. And that to much B-6 can hurt worse than help you. I read you should start out by taking 25mg 3 x's a day. Well, how much do you take now? What product do you use. That is Name brand? Have you heard anything related to Fibro and/or vitiams such as B-6 being bad for a person? Anyone out there that can help answer these concerns about B-6 would be helpful. I tend to agree with Lynne's post. Be Careful taking B-6 or any over the counter medications. Consult with a doctor prior to your start. Each persons chemistry is different so please be careful. Thanks everyone and Best Wishes. Regards, Jan
Re: Thinking of Having Botox Treatment
Hi Terri!
I've had SD for four years and I've had two Botox shots. They lasted much longer than most peoples' (7-9months each). Recognize what the folks here see as drawbacks and hopefully your experience will be successful! (I haven't had more shots because I'm starting a family and I'm staying away from Botox, and everything else, these days! Once kids arrive and my doc ok's it, I'll have another shot)
The greatest drawback for me was the swallowing- I didn't catch on to tilting my head for a while! I expected the breathy/no voice and when my voice came back stron(ly?), I was thrilled! A voice just like the old days!
Docs have to figure out the right spot to hit your vocal cords as well as the correct amount of Botox, but once they have that set, it's a four minute procedure.
My doc also recommended bringing a "hand holder".. It did wonders for me just to have my husband and the doc chit-chatting during the procedure. Best of luck whatever you decide.
Re: Thinking of Having Botox Treatment
I just want to thank all of you who have responded to my posting. I've never communicated like this over the internet - what an amazing thing, and such a comfort to find others with the same condition. I figure one shot of botox won't hurt and I may also look into some of the alternatives - B6 and Neurontin, etc. At least I'm finally taking a step after so many years. Thanks again for sharing your experiences...
Re: Thinking of Having Botox Treatment
I can't communicate like this face to face. Isn't this place great! All this information right at our fingertips ... ain't it cool!Sorry, got a little exicited there. ;-) Mike
Re: Thinking of Having Botox Treatment
Hi Terri,I have had ADSD for about 17 years now. I was only diagnosed in 1998 with this and since that time I have taken Bo-Tox Injections. Well, that is up until February of 2001. I have been without a normal voice now for going on 7 months. I have taken 3 Bo-Tox Injections since November of 2000. Even though this time they haven't worked. If you have suffered this long, I would encourage you to go ahead and at least try it once. It is scary having a needle put into you throat, but it is really not that bad if you go in with a positive attitude. Think of it this way. You have probably tried a lot already, and nothing has worked so far. Right? Well, what have you got to lose? If you don't try it you will always wonder if it would have worked. Yes, the side effects are very scary and I understand your being hesitant. However, which is more scary the constant bother of spasms and not being able to talk properly or going for Bo-Tox and at least you can say you have tried every option. The side effects for me was strangling on water or getting choked, etc. and the long term effect of the whispery breathy voice. But, as I look at facing surgery, that even scares me worse. And as I look back at Bo-Tox well, I think it was a wonderful relief at times as sometimes my voice would come back the very next day and then other times it wouldn't, but I did not have to push as much when I did talk. And the relief of just having a whispery voice vs. a breaking Skippy voice was worth it all. However, I still have my dislikes about Bo-Tox, etc. This is a personal choose you must decide what is best for you. For me, I begged for it for years before I was even diagnosed with SD, but they would not let me try it, because they said it was a poison. Well, yes it is, but if you have an experienced doctor you have nothing much to loose. However, I do suggest you do research and find someone who is familiar with SD and doing the injections. As the inexperienced do at times seem to miss the right location to inject the medication. But you will know in about 3 days time after taking the injections as to whether it is working or not, because the more strangled you get and the breathier and whispery you are you know it is doing its job. When you attempt to drink water try to put you Chin down to your neck and intake small amounts of water and swallow then clear your throat and swallow again before taking another drink. This takes practice and you must be in control of your swallowing process. I have learned to hold small amount in my mouth and swallow small amounts each time. Also, practice on your breathing deeply by putting one hand just under your breast line and the other hand on your chest. Upon breathing in your stomach should swell outward and upon breathing out your stomach should shrink in. I don't want to make you go for Bo-Tox, just telling you my experiences and suggestions. I just was so bad I was to a point where I had to do something to get relief. Bo-Tox is strange, it works for some and for other's it doesn't. So again this is your choose. I hate decisions don't you? I went to Nashville, TN at the Vanderbilt Voice Center after learning that the neurologist out in my area was not experienced enough to hit the spot each time. But, I could count on Vanderbilt hitting it each and every time. So the more experienced the doctor the better. If you have further questions or concerns please do not hesitate to contact me or anyone on this BB. If you stay here long enough you too will know this BB is a wealth of information. Best wishes, Jan
Re: Thinking of Having Botox Treatment
I had my first set the end of Feb. I was to say the least very, very nervous about the same things that you are - a needle in my throat, the choking problem afterwards, etc. It was almost a non-event. Very easy, little discomfort, over in a very few minutes. 3 days later as the doctor had told me I had some choking with swallowing thin liquids like water, juices. I used a technique given to me by Dot Sowerby to tip my jaw slightly downward while swallowing. It worked. The choking lasted only a few days and then I had speech therapy and learned to get my voice up out of my throat and into the front of my mouth. So far I have had very little relapse in my voice. I know it will come as I also have been receiving Botox for blepharospasms and cervical torticollis and they always wear off sooner or later. But I'm not at all nervous about the next time when I'll have to go again.
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