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Posted by: Carrie Starr ® 11/24/2002, 23:09:13 Author Profile Mail author |
I was recently diagnosed with AB and would like to hear some personal stories from some other ABer's. My problem began 7 years ago and has gradually gotten worse, although I do think it's still fairly mild. Before now, I had gone through hypnotherapy and that actually worked for a while. Gradually though it came back and so I went to the doctor again. He did put me on medication for my irregular heartbeat and anxiety/depression which helps with a lot of the secondary symptoms I feel and also has helped my voice somewhat. I was excited after I was diagnosed because I finally had proof that it wasn't "all in my head". After reading some of the messages on the bulletin board though, I'm a little discouraged. How much do the botox injections really help? I would hate to have to go in 3-4 times and year and pay all that money if it's not going to be very successful. Also, I read messages from people that said their voice sounded like the Godfather or Minnie Mouse directly afterwards and I really don't want to deal with that either. How about speech therapy? Has anyone had much success with that without having the botox? Any and all information I can get from you would be appreciated. I do go to the Univ of Iowa Hospitals, which has one of the top Oto departments in the nation, so I feel I'm in good hands, but I really want some hard facts before I put myself through all this stuff. Thanks for your input! |
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Posted by: fancynancy ® 11/25/2002, 01:18:00 Author Profile Mail author |
Hi Carrie, Welcome to the BB...you came to the right place. I also have AB SD (about 11 1/2 years) and am still learning about treatment. Botox has worked for a few of us with AB (not me but I'm still trying), but not as successful as the ADers. It may take a couple of visits to the ENT to get the proper dose of Botox and injection location. Yes it sounds like a pain in the A** but it's certainly worth a try. The Godfather voice, I think, is something the AD style injection gives as an immediate side effect...it gradually gets better. |
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Posted by: Linda Spain ® 11/25/2002, 05:45:27 Author Profile Mail author |
Hi, Carrie. I, too, am an AB-er, a severe one. It was very hard work, but I've had great luck with speech therapy. I went from barely able to communicate verbally to having a highly functional voice (I do often use amplification, though). I've written several posts lately; you may want to find and read them. Right now, I'm in a huge rush, but felt that responding to you quickly was more important than sharing my experience directly as you requested. Also, I don't use botox. All the best,
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Posted by: Carolyn Hutchison ® 11/25/2002, 09:58:18 Author Profile Mail author |
Hi, Carrie, I've had ABSD for most of my adult life and finally got a diagnosis in 1995. I've had many Botox shots, with varying degrees of limited success, and have decided not to get any more unless I get very desperate. I never experienced either the high-pitched or whisper voice following a shot. Generally, I would experience some limited positive impact for about 6 weeks. The "golf ball" in my throat would feel a bit more relaxed, and I found it easier to say certain words--the C and H words, for example. However, on the negative side, I did experience some breathlessness during exercise and I had to pay far too much attention to chewing and swallowing. A couple shots actually left me feeling like my throat had shut down somewhat and it was difficult for me to project against the tightness I felt. I've tried both hypnotherapy and acupuncture with limited success. It seems that, no matter what the intervention, the same symptoms remain. I have not tried speech therapy. My doctor wasn't too hopeful about it. More important, though, I don't think I have the time and energy to spend doing that. So... I'm just living with my voice and I do explain why it is the way it is. I have a "high-profile" job--police chief--and have found it helpful to explain why I don't have a "command" voice, thought to be very important in policing. Anyway, good luck with your decisions. If I can be of any help, let me know. Carolyn Carrboro, NC |
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Posted by: John Comer ® 11/25/2002, 10:54:41 Author Profile Mail author |
Welcome to the BB. It is a great source of information. My best suggestion is that you take some time in the near future to explore some of the many postings about AB. I live just north of you in Minnesota and have AB. My treatment at Mayo Clinic has consisted of surgery and Botox injections. I have been treated there for over a year now and the results are varied although I am encouraged by the progress in the past couple of months. As you will find out AB is the least common of the problems and the most difficult to diagnose and treat due to the location of the muscles involved. Botox is available with mixed results. Check out the postings. You will find lots of info. Good luck. John ABSD Minnesota |
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Posted by: Robin Stull ® 11/26/2002, 00:03:40 Author Profile Mail author |
Carrie - Always like to respond to the ABers to let you know you are not alone! When I first started posting on this BB in January 2001 it seemed as tho' there were very few ABers. My AB SD came on very gradually and it took me approx 3 years to get diagnosed (several doctors later.) In 2001 I went from having a mild case, to having a severe case - by December often all I could do was whisper. I had had my first Botox the day before Thanksgiving, and it seemed that it made no impact. However, at the end of January 2002 my voice "suddenly" started improving and as it turns out it was a delayed effect of the Botox (I can give you more info on this via email if you wish - or that part of the story may be in one of my archived posts.) I went from whispering, having to think about how to say anything and painful neck and shoulder muscle splinting (affected just by trying to talk) to being able to pick up the phone and not even think about it! Since then I have had Botox shots in May and September and my voice has never been as bad as it was. It also has never been as good as it was this last March-April. I do have to think about how to talk. I have never made a successful attempt at speech therapy. I was very adamant about trying it - for coping techniques - when I was first diagnosed but by the time I found someone willing to try and went through the insurance referral hoops, my voice had deteriorated so much that the speech therapist gave up on me after 3 sessions. Pretty disheartening. BTW, ABers don't usually have the problem with Mickey Mouse voice, etc. after Botox - that's a side effect for the ADer's. I believe our main transitional side effect is shortness of breath. I'll be glad to give you more info via email if you wish, or if you do a search on my name you may get most of the information (I tried to post updates.) I wish you well, Robin (AB/So. Calif.)
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Posted by: sarah bayle ® 11/26/2002, 08:58:05 Author Profile Mail author |
Hello! It is interesting to read the variety of stories which arise from the same diagnosis of ABSD! I have AB and I did try Botox for about 1-2 years of maybe 4-6 injections in a variety of spots and dosages. It was a struggle every step of the way-painful,scarey,loss of voice,etc. I made a conscious decision to quit as the stress involved in searching for symptomatic relief made my symptoms worse! I've had sudden onset of this voice disorder in my first trimester of a twin pregnancy 12 years ago. My daughters are gorgeous and my voice has never recovered! Best of luck with your search for information. Remember that the hard and true facts are few and far between as this unusual disorder hits and affects many of us in different ways. Sarah |
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Posted by: Katrina Lantz ® 11/29/2002, 22:12:24 Author Profile Mail author |
I too have AB. I was diagnosed in August of 2000 and first noticed problems with my voice in January of 2000 so I was rather quickly diagnosed. Starting taking botox injections in October of 2000 and usually get them every 4 months although I have been going a bit longer since June. Good Luck |
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