Posted by: mariaa ®
09/03/2007, 11:33:01
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Its amazing how some doctors no NOTHING about SD. I have had SD since I was 17 and I an 43 now. That is not true that you will get worse. You can in fact get better. Some people get better, some have good and bad days. Everyone is different. I have no idea why the doctor told you that. My guess is that he or she is not experienced with SD.
As far as botox goes, I have started it this past March for the first time in my life. Its ok. I dont like the initial side effects, like breathiness, and hoarsness. But when that passes the voice is smooth. I went to speech therapy for years with great success. Of course I had to use the techniques all the time and practice them. But, I got away without Botox all those years. And when I was pregnant I had NO symmptoms of SD. THis is not a lose lose situation at all. A good attitude and I can do this attitude will help alot. Belive me stress and worry make anything worse including SD. The botox is a different amount for any given person. And everyone can atest to that. THe shot isnt a big deal. Its a shot thats it. THe reason I decided to get the botox was because I am back in the work force teaching again and wanted to try it. I will say that I did teach without for years and used the speech therapy. It helped alot. To me botox is a quick fix and speech therapy is a long haul approach. It is all a personal decision. I may opt to do both so I dont need injections that often.
You will be fine and you probaly wont get worse. Dont worry about that........
Hang in there a take the approach YOU feel comfortable with.
Take care,
Maria
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Posted by: beachbum ®
09/03/2007, 13:30:35
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What is your Dr's speciality, Otolaryngology, Neurology specializing in movement disorders? In my experience with AD/SD since 2001, I've never lost my voice completely and never been told that. It's difficult to get the volume out when I'm really fatigued, stressed out or it's hot and humid. Vocal cords tighten up, spasm and the sound is horrible. Botox, if it works for you,(everyone is different) will help your voice sound smooth and normal for a approx. 2-3 months aft the breathy stage.
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Posted by: tschaale ®
09/03/2007, 15:25:08
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See, my doctor told me it wasn't progressive but I know in some cases that is not true. My uncle has gone from his SD being barely noticeable to you cannot understand a word he says. I'm very afraid of that happening to me. I have had SD for many, many years and it is worse than when it started but the progression has been slow.
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Posted by: Mitzi ®
09/14/2007, 19:45:01
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I have had AD/SD for 20 years and am now 44. It has definitely been an up and down thing, but it has also fluctuated according to my stress level. Some days are good and some bad. Trust me when I tell you this, no medical professional that has knowledge of this disorder has any proof that it is a progressive disease that only get's worse! I was diagnosed in Norway by a Neurologist and an ENT, who have treated SD before and I never heard the words...it will only get worse! There are treatments that work differently for everyone, but please do not get more stressed because you have "heard" you will get worse! What you need is alot of support and information from people that are going through proper treatment and alternatives and please, do some research and find a Dr. who has a specialty with SD and treated other's with it. I am so thankful for all of the information, support that I have gotten from this forum. So, it feels good to be able to give support and basically just be there for someone else. Mitzi AD/SD Florida
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Posted by: Michele ®
09/15/2007, 00:14:39
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I was diagnosed almost two years ago. I don't know what type you have, but mine has not worsened. I asked my doctor if it would and he said not likely. I have halting/strangled speech and a struggle to get words out. They never told me it would get worse. I have never heard that from anyone I have spoken with in regard to this disorder, and have heard from people who have dealt with it for years and never heard of anyone losing their voice entirely? I think it is very rare, and doctors are very confused about the treatments and diagnosis. As far as Botox, have not tried it.....will not, until has been around longer and hear how it works for people. One woman did tell me that after Botox wore off, her voice became worse and never regained its initial "milder" problem. Her problem became even worse and she had to continue Botox to keep up. It is so new, I am not sure if I trust it. It is POISON!!!! You are basically injecting a paralyzing plague into your vocal cords?! Makes me VERY nervous!Look into books like:
"Speechless/living with spasmodic dysphonia", by Dot Sowerby (who went through Botox treatments...) and books by Dr. Morton Cooper, who does NOT belive in Botox. My doctor pointed me toward both, mainly because doctors probably don't have a clue!
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Posted by: mariaa ®
09/15/2007, 13:12:11
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I have had botox three times, and my voice always came back. I am not worried about that in the least. THe botox does wear off.
I also held off on it for 20 some what years. It has been around that long in use for SD.
I am comfortable and trust my doctor. So. I know he knows what he is doing.
I use to fear it. But now that I have experienced it, its hard to tell how I functioned with out it. I sound amazing. Perfect.
I think in my own opionion, when the botox wears off that I sound BETTER than I did before I used it. Because your breathing becomes better, you are now using proper breathing when you dont have spasms. And when the botox wears off, you are STILL using proper breathing because its like retraining yourself.
That is only my personal opionion.
Everyone should do what makes them feel comfortable and when and if you are ever ready for botox u will know it.
I reached rock bottom and wanted to fix it. And I am happy I did. No regrets whatsoever. I got a promotion since botox and a big raise.
I am a special ed teacher and I do behavior analysis caseload work with children privately.
Thank you for reading my post
God Bless and good luck
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Posted by: dmoores ®
09/15/2007, 17:35:24
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Thanks for the info.. I did have the Botox for the first time a week ago but I am skeptical also about putting a poison into my body that they know little about. I may not get another one. It's been over a week now and I don't really think my voice is better, it's just different. It's still weak and breathy. My only real concern at this time is how I'm going to continue doing my job. I can squeak out words but it doesn't take long and I get a sore throat. Maybe I just need to give it time. Thanks again for the info., I'll see if I can get the books.
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Posted by: magistramarla ®
09/15/2007, 23:26:10
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Hi,
I'm also new to all of this. I was just diagnosed with SD during the summer, and I just had my first Botox injection on Wednesday. By Friday, my family, my students and my co-workers already noticed a difference in my voice. My voice is still a little weak and breathy, but it's definitely better, and I think that it is getting stronger each day. I also feel that I'm breathing a bit better.
I know that the fact that Botox is a toxin bothers a lot of people. I look at it this way - throughout history, people have used substances that can be used medicinely that are also capable of being harmful or even toxic if misused. Asprin originally came from willow bark. As a midwife's assistant in the '80s, I got very familiar with using herbal tinctures. We would use things like black cohosh, which can be very dangerous if overused, and a wonderful thing call goldenseal, which stopped bleeding and dried up the cut end of an umbilical cord very quickly.
I would be the last person to use Botox cosmetically, but I think that this medical use of the substance is a very good thing for those of us who have a real medical need.
So far, so good for me. If I can keep teaching and comfortably present at the Foreign Language Teacher's conference in November, I'll be a very happy camper.
Marla
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Posted by: Mary Bifaro ®
09/16/2007, 13:37:27
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There have been several posts in this thread talking about the book, "Speechless". It is available for purchase via our NSDA website at www.dysphonia.org which has a link from this bulletin board forum. Visit there under "Publications and Videos" to purchase "Speechless" and a brochure on Botox injections. Additionally, the NSDA website has useful information on many matters of interest to SD patients. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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