Posted by: soflgringo ®
01/30/2006, 17:19:03
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I am going on week three here after my first botox shots and have to say I am not delighted so far. My voice has been basically gone since the day after the shots, I think it is gradually coming back but still very bad. I would not describe it as breathy, more like gaspy, especially if I try to use the phone. I am hacking and spitting, which I think has to do with not swallowing right. I swam laps yesterday and it was tough and my voice was completely gone when I got out of the pool. If the end result is only a month or two of good voice (as some have reported here) I think it is probably not worth it.
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Posted by: JanStu ®
01/30/2006, 19:58:56
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My experience with the shots was 2 to 3 weeks of the breathy, then high (really high) pitch, then gradually back to normal. During the first week were flu like symptoms. This was followed by 2 months of good voice. Then the voice begins to deteriorate. At after about 2 weeks the voice falls off rather rapidly. I was getting shots every 3 1/2 months. Chlorine seems to have a drying effect. I was unable to talk after swimming, but it comes back. Try gargling with plain water several times after swimming. You will also find that singing is impossible while in the "good voice" period with Botox. The botox in the good voice restores confidence and makes you feel confident. It also helps you forget you have the problem because you have a voice you can count on. The side effects have to be carefully weighed to determine what you really want to do. The improvement that I have been able to make with the acupuncture, HRT and speech therapy is very encouraging. GOOD LUCK!!
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Posted by: mdubovick ®
01/30/2006, 22:39:52
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Botox results will vary. You can't base any decisions on the experience of one shot. I had some swallowing difficulties but it went away in one week. I found that two things help that; one is to lower your chin down towards your chest before swallowing. That helps the coughing. And lowering the Botox dose eliminated the swallowing difficulty for me. The temporarily near-total paralysis of the vocal cords will subside. If the end result is only a month of good voice, then you're right, it may not be worth it. But at least give yourself and your doctor the chance to adjust the dosage and see if things improve. Try to keep a record log of how the shot is effecting you each week. Bring that to the doctor on your next visit. That will help the doctor figure out how to change the dosage and maybe the technique too. ps - soflgringo = clever userid :)
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Posted by: soflgringo ®
01/31/2006, 01:30:42
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You are right of course. Like a lot of medical treatments the botox makes you worse before you get better, and those side effects here are pretty pronounced. I am a little suprised though at how rough this is on life, work and my body. The term "breathy voice" does seem a bit of marketing hype, sort of like calling Hurricane Katrina a soft summer rainstorm. Thanks very much to everyone for their encouragement.Joel, the South Florida Gringo, supposedly with a combination of SD and tremor that sometimes becomes disabling in front of Circuit Court judges, and now with a dog that has severe dental problems. We are both just getting old and falling apart, and the treatments are very expensive.
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Posted by: joan ®
02/03/2006, 06:35:36
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Hi,
Your treatment sounds good. Could you please tell me if you know of anyone I might contact around CT, NY, MA, etc.? I'm in CT.
Thanks so much, and good luck,
Joan
jaklownds@hotmail.com
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Posted by: mdubovick ®
01/30/2006, 22:31:51
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Jan, can you please provide any additional information about the acupuncture designed for SD? Does the technique have a name? Where is it being done? Where are the needles being inserted? Any info you can provide will be appreciated.
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Posted by: Linda K ®
01/31/2006, 14:10:07
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Does accupuncture work for both AB and AD SD? I was wondering if you could please give me some information and let me know where you are getting your treatments. Glad to hear accupuncture is working well for you.Good Luck!
Linda
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Posted by: JanStu ®
02/01/2006, 20:37:51
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Linda,
I have ADSD. I believe there is also a treatment schedule for AB.I live in Michigan but go to Dublin OH for treatments. I had acupuncture for 3 months and got started on the HRT therapy, then started on the Protocal of 8 sessions. When some improvement was noted, I began the speech therapy with a speech pathologist. After listening to a tape of my first speech session, it was determined that it was all "coming together" and I had improved over 50%. I'm really pleased with the progress. It is not embarrassing or depressing anymore. Just a feeling of accomplishment, even though it is 'baby steps', I just keep getting better and more confident. As both the Dr and Speech Pathologist say, it's not a cure, but careful management, knowledge, and training which gives you back a normal speaking voice, without making you a captive to the disorder. I went to an acupuncturist is the Jackson, Mi area first and was very disappointed. I only saw him for the "intake" appointment and decided I was going elsewhere. You really have to be proactive about it to get results. Where are you located?
We are currently out of state, but when I return perhaps I can find out the names of the medical publications which would have the information. Then you can ask your doctor is familiar with it.
Hope this helps.
JS
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Posted by: JanStu ®
02/01/2006, 21:11:27
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Linda,
I see for "Heard of this" that you are in Cinncinati, OH. My Dr. in is Dublin, OH.
(Link deleted per bulletin board rules.)
He may be able to help you.
JS
Modified by Moderator-WB at Thu, Feb 02, 2006, 21:35:52
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Posted by: Scott B ®
01/31/2006, 17:47:37
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I'm on shot #3, 11 days post-injection. I sound like a dog that has had it's vocal cords cut. I am pretty much unable to function out in the world. I timed this injection so that I wowuld have a good voice for the convention I am at right now for work, and that has backfired badly.The first two shots worked well enough, but didn't last very long (7 weeks or so). I've also noticed I can't sing while the Botox is working. I think I'm done with it. I tried the SD accupuncture treatment before I got the Botox, along with Traditional Chinese medicine, and neither did much for me. I am getting very frustrated and depressed about this condition. I tried to talk to my 10 month old on the phone today, and couldn't.
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Posted by: JanStu ®
02/01/2006, 20:49:55
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Scott,
How long did you do the acupuncture? Was it the 8 step Protocal?
The acupuncture in conjunction with Speech Therapy with a Speech Pathologist, not just a therapist (tried that - very little improvement). I took the shots for 6 years and planned my life around the shots plus had to plan on the lung infection I had within 2 weeks of every shot. No, I couldn't sing either. My singing voice has now returned.Keep looking for the right team to help you. They are out there.
As you become more proactive and locate the good people to help you, the depression will go away. Do keep telling yourself that it really could be worse. There are so many life threatening ailments out there and we only have to deal with a vocal disorder. Also, work on your breathing and watch yourself in the mirror as you speak. We all hold our breath or force the breath and we create all of these strange habits as we try to cover up or sound as normal as possible. I found a book which helped. It is: Is Your Voice Telling On You? by Daniel R. Boone Singular Publishing Group Inc San Diego, CA Good Luck and keep on trying. It takes a long time, but the first step is getting the diagnosis so you know what is wrong!
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Posted by: kim ®
02/02/2006, 21:41:48
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Hi,I wanted to get in on this too. I had one Botox inj. done 6-1-05, I was so optomistic (sp?) that it would work. It did not. Mine was done under general anesthesia, so I had Hospital bills, ENT bills, and anethesia bills. Which would have been fine, had it have worked. Not only did it not work, but I developed a tremor in my voice, which I never had before, and thank God, it went away after time. My first Botox shot was on a Wednesday, I was allowed to have Thursday off work to recupe, then went back on Friday. Well, I had such horrible relux I spent the whole day sick in the bathroom at work. I was offered to go home, but too sick to drive. I continued like that for about 4 days. However, I'm still considering trying another one, just to see. I'm not for sure yet. Kim/ABSD/Houston
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Posted by: Speed Racer ®
02/02/2006, 23:30:42
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this thing is nuts Kim.I got my first shot 40 hours ago, and I have not felt a dam thing...in anything, anywhere...not sick, not tired, same as always, my job may be in jeprody I think on top of it all... Go figure huh? Write me girl, We should visit, it's not working for me either so far ...spent a grand...yuk... Rob Scott,
ABSD 6 yrs
Dallas
speed64racer@netzero.net
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Posted by: awelfare ®
02/02/2006, 17:51:06
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I just found out that I have sd today. I am concerned about using botox. Is it really worth it?
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Posted by: Marilee ®
02/02/2006, 22:03:55
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"Is it really worth it? " That answer varies with the
individual, but MY answer is "Yes!"I have adductor spasmodic dysphonia (AD/SD), plus
Paradoxical Vocal Fold Motion (PVFM), which causes the
vocal folds/cords to spasm out into the airway, causing
very uncomfortable shortness of breath. For 5 yrs. Botox
is the only thing I have found to relief that, as well as
help my voice. Yes, there are some temporary, minor side-effects, but they
don't last long, and can be tolerated much easier than the
disorder itself. When you read past posts on this bulletin
board, you'll find some who resolve to do without Botox,
but most at least give it a try. If it doesn't work too
well the first time (because the doctor uses too small a
dose, or wrong placement), the next few times can get
more effective. Some patients use other helps in addition to the Botox
injections, such as acupuncture for all-round help, speech
therapy, anti-anxiety medications, relaxation methods. You can be glad you have a definite diagnosis, even though
it is frightening to hear, at first, and can be very
life-altering. We have all been there, so know how you
feel. Please feel free to post more questions or concerns,
as everyone here is very caring & helpful. Do you have
AB or AD? ADductor is more easily helped with Botox. This board hasn't been working very well for a day or two,
so you can e-mail me if you wish. Warm regards, Marilee in Indiana, U.S. gcazz@juno.com
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Posted by: Barbara S. White ®
02/17/2006, 01:15:51
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Question? I believe you are saying that you had the shortness of breath when youi needed botox again. I have heard several people say they were short of breath right after the botox. I too have had a problem with breathing or shortness of breath right before I'm ready for another botox. As soon as the botox starts wearing off, the breathing difficulty comes. Actually I didn't have a problem the first year but the second year of botox it started and it got progressively worse with each injection. I too wondered if botox could possibly have anything to do with it. I was diagnoised with asthma before I ever took botox so don't think the botox caused the asthma with me, but I have heard a lot of people are misdiagnoised with asthma when the have SD. Botox worked very well for me except, like I said, when it was wearing off and the breqthing problems which increased with time. I mean my breathing got really bad. I decided to have the SLAD surgery and was required to wait an extra two months after I really needed another botox before I had the surgery so they would be no problem locating the spasmodic nerve. I did that and I thought I would die before I had the surgery. In fact I had to take anxiety pills to get through that time. My surgery was very successful and am in the healing process right now. I have no spasms in my voice at all but still going through the raspy voice. It was breathy at first and low but the volumn is almost normal.It is suppose to take about 5 to 6 months to get back to normal. Actually the post surgery side affects are the same as the side affects are for most people after botox. Personally, I didn't have the breathy voice other than one time when I had a double dose. I of course went back to the .5 injection since 1 unit was too much for me. I know .5 is a pretty small dose but it did the job for me. Anyway, I do understand what you went through with the shortness of breath when botox was wearing off. You are the only other person I have heard say this happened when the botox was wearing off but a lot say they had the shortness of breath right after botox. Very interesting. I truly pray that the new accupuncture works out great for you. Keep me posted as I will be starting a support group soon and want to have as much information about various treatments as possible since we are all so different.
Blessing to you,
Barbara / god4me@comcast.net
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