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Posted by: John Brenner ® 09/28/2002, 20:19:43 Author Profile Mail author |
It appears that after 2+ years now with this dreadful condition I now might have mixed SD. My last 3 Botox shots have left me breathy for up to 3 weeks, but no real quality voice once the breathiness wore off. I am finding that after the breathiness that my volume remains low and that it can be a struggle to get the first sound out of what I am trying to say. Still have some minor breaks, but not as bad as before. This sounds like an AB side might be present or now at least my bigger problem vs AD. I am considering asking to get the injection for AB for my next shot to see if it works any better. Has anyone struggled with a case of AB and AD? If so, how do you decide on what shot to get each time? I know that you can't treat both at the same time or you may not be able to breathe! Also curious from the current AB'ers how successful botox has been for them? I recall reading that Botox was 70% - 80% successful for AD, but something less than 50% for AB. Is that true or has the success rate for AB gotten better? Thanks,
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Posted by: Sarah Bayle ® 09/29/2002, 18:19:01 Author Profile Mail author |
John, I have both AB and AD. I tried Botox for about 1-2 years and found that the unmet expectations along with the loss of breath and voice, and inability to swallow were not worth the minimal success I experienced. My doctor treated my AB by doing one side and having me come back 1-2 weeks later and he would be able to treat the other side. (My AB symptoms were stronger) I had been initially treated for AD and he decided to drop that and treat me for AB. I felt confused and frustrated. (I am also an avid swimmer and felt I could not attain my best in the pool when I was treated for AB, as it reduced the volume of air intake.) I'd be curious to follow your treatment success as recently I've been thinking about giving Botox another try. My voice also has alot of tremor, a huge variance in good versus bad days and it was difficult for me to hear whether or not my voice was any better after the Botox. At this point in my life: I'm a bit embarrassed to admit I can't remember why it is that treatment for AB is less successful? What is the nature of the condition that makes it more difficult to treat than AD? I think I blocked a great deal of my experience in the otolarygology clinic. I'm only now, a few years later- able to consider going again and only now able to try to understand it better. Sarah AB/AD with tremor |
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Posted by: Sarah Bayle ® 09/29/2002, 18:31:55 Author Profile Mail author |
Actually, the breathing difficulty does not arise from treating both AB and AD. It is part of the treatment for AB. The process, or what I can remember, is that the doctor does one side of the abductor muscles. You can now only open your airway up 50% of full volume. After the initial injection wears off about two-four weeks you must return to the clinic to receive a second injection. The second injection is timed so that you are quaranteed the original injection site has recovered partial function so volume reduction on that side is now only, say, 35% or whatever. Thus, you are certain to have some airway. The second injection is to the other side. This injection is placed in the other side of the abductor muscles and knocks out the airway on that side. Although my doctor suggested that I shouldn't notice the reduced air volume- I did not like the feeling I had of wheezing or struggling for intake. I think he thought that I exaggerated my sense of breathlessness but to me it was quite noticable under heavy excersize. I could not chat with my children while we hiked in the beautiful Cascade Mountains in the Pacific Northwest where I live! Anyone else out there to tell us about their AB treatment and heavy excersize, etc.? Sarah |
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Posted by: William Vanderlinde ® 09/30/2002, 10:25:01 Author Profile Mail author |
Sarah, As you pointed out, injections for AB tend to restrict the airway. We use the AB muscles to open the vocal cords for breathing, so weakening them with BOTOX can make it hard to breath. Like your yourself I notice this problem only during heavy exercise, but another person in my support group once had what her doctor called an "exaggerated reaction" to an AB injection. She literally could not walk up a flight of stairs without getting out of breath. I recall we did a poll on the bulletin Board about six months ago to see how many people with AB were getting benefit from BOTOX. My recollection is that it was about 50% which is the number that doctors often quote. No one knows for sure why AB injections have such a low success rate. The AB muscles are located behind the larynx which makes them hard to get to, and the concerns about restricting the airway limits the dose that can be safely used. But there are many people who receive AB injections that clearly had an effect -- their breathing was restricted and a video strobe showed the cords' abduction was reduced -- and yet the patients received absolutely no voice benefit. Some researchers at NIH believe that AB/SD is a very complicated disorder and may in some cases be caused by a reduction in AD muscle activity rather than spasms in the AB muscles, hence the poor treatment results. Bill Vanderlinde
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Posted by: Lu ® 09/30/2002, 14:16:58 Author Profile Mail author |
Dear Sarah, I just had my first botox in April for my AB/Tremor S.D. at the Mayo Clinic in Scottsdale. I have written about the painful experience in a previous posting. I want to assure you it was my first and have chosen at this point not to go back for a second but don't want to discourage anyone who has had good luck to do so. I stressed the Mayo/Dr. Bansberg were wonderful and hold no animosity towards them just this disease/disorder. I'm an exercise fanatic and also lift weights which I've done for yrs.. After my shot I noticed I had alot more mucus as well as the breathiness almost feeling like I was having more of an asthma attack regarding any kind of high energy activity. It was more tiresome to do my workouts and afterwards I sounded like I could barely talk. The shots they gave me on both sides were difficult because they couldn't find the muscle to inject and went in several times before finding it. I find that I now sound like I have both AB/AD more so than ever before along with droopy eyelids that I never had before the injection. I don't think it's common for most people to experience the droopy eyelids and no one(Dr.'s) seems to know why I reacted to the botox in that manner. I still work out but I'm sad to say the injections didn't work for me. I'm keeping my ears open to see if any improvements have been made for the AB/injections and if that's the case will try to work up the nerve and energy to give it another shot but until then I shall do my best to work with my Dr. to try to figure out different solutions other than botox. My best to you and everyone out there with the success of botox and once again we are all different so just because it didn't work for me doesn't mean it won't for others. Sincerely, Lu |
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Posted by: Mitch ® 10/01/2002, 20:56:21 Author Profile Mail author |
Hi! I'm pretty new to the BB & I think I have ab/sd. I go for the test on Oct 9th. Reading about how difficult it is to treat AB/SD,I can't help but get discouraged. I work for a major Telephone Co. & have to talk on the phone all day,which is a day-long struggle,as you might imagine! Has anyone been able to go out on disability for SD? Are companies sympathetic about it.Is it recognized as a true "disability" for Social Security benefits? These are the things I've pondered lately,not knowing what the future may hold & if I can keep doing my job. Anyone please respond. I'd appreciate it! Mitch Rollins, Norman,OK |
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Posted by: bd560 ® 10/01/2002, 22:00:06 Author Profile Mail author |
Keep your chin up Mitch.. it can be frustrating if you have SD, but you have to deal with whatever you might have to face with a positive attitude. I'd wait until you know for sure what your ailment might be but being prepared is always good. I can't answer on the disabiltiy issue but I do sense alot of companies are not as informed on the problem. Good luck and hope your results turn out ok. Bon in Socal |
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Posted by: Sarah Bayle ® 10/02/2002, 13:29:24 Author Profile Mail author |
Mitch: I know it is discouraging...I have had AB/AD for twelve years and it is a struggle to get through every 'voiced' interaction. I have studied American Sign Language for two years and have relationships with people who have no idea that I have a voice disorder because we always sign together! I know it seems like an extreme response to the difficulties associated with SD but I'll tell you that I am never so relieved as when I am in a situation in which there are NO expectations that I can speak!! It is a very freeing feeling for me. But, I did want to mention that you may have a test on October 9th but there really is no clear cut answer to your question: my doctor was never certain if my symptoms were most strongly associated with abductor or adductor or tremor problems. So, don't base too much on any one day of tests- I've done that and left feeling more confused than enlightened and quite frustrated. I encourage you to request that your doctor provide you with documentation of your disability and begin any claims with the government ASAP. We are disabled and there are many jobs which we are unable to compete at equally because of this disability. But make sure you make relationships with people who don't care or know what you sound like: Deaf people, children, pets, good friends, etc. because struggling 24 hours per day isn't healthy for any of us. Hang in there and keep posting. Sarah |
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