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| Does anyone recover from SD? |  | ||
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Posted by: Frustrated ® 10/09/2008, 14:03:34 |
Does anyone know of anybody who has recovered from SD? |
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Posted by: Vash ® 10/09/2008, 18:07:51 |
I read of someone who was scarred in the muscle spasms from Botox injections and partly recovered his voice. If it will worsen in the future, I don't know. |
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Posted by: debbieo ® 10/09/2008, 19:27:46 |
Based on testimonials that I have read and through my own experience, I feel that some can have great and measurable improvement. I think that you have to be guarded as to protecting your general health by getting exercise, eating right, doing your voice therapy, and having a positive attitude. Since I don't do Botox I can't attest to that approach, but I know that in my case I got a lot better. Good Luck. |
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Posted by: frustrated ® 10/10/2008, 03:05:48 |
I found an article about the Dilbert creator Scott Adams title "Dilbert' creator recovers from rare disorder" This was published in 2006. I wonder if he still is SD free? |
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Posted by: Laurie ® 10/10/2008, 12:51:09 |
He recently blogged about his experience with a surgical procedure used to treat SD in 2008. Surgery is one way to address the disorder, although for me it has too many risks. Laurie |
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Posted by: iloveme ® 10/11/2008, 01:42:54 |
I have yet to meet with my SD specialist, but based on my current research, I am considering surgery. I know there are risks but I would seriously rather die than face living with this for the rest of my life. There is also a possibility of becoming mute after surgery but I'd rather take the risk.
Any thoughts? |
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Posted by: Vash ® 10/11/2008, 08:31:53 |
Have you tried Botox yet? I strongly suggest you do. Fact is, there's no current cure for SD. I believe surgery is mostly experimental and will probably make your voice worse. I know how stressful SD can be. Sometimes I think being mute is easier. But there's no reason to torment yourself because there's a temporary remedy out there! Botox. Way it works is, you get the shot, you can't speak for maybe a week then you get a normal voice for 2-4 months. Fair trade! Plus there's a Botox plan for people with SD that saves you money. And another positive thing, doctors are studying this disorder. Maybe a cure will appear! |
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Posted by: Hoarse Whisperer ® 10/11/2008, 12:05:19 |
It sounds like you're having a really hard time dealing with this diagnosis, which is understandable. Before surgery, you owe it to yourself to explore all treatment options available, especially Botox. It can truly be miraculous for some people, especially those with ADSD. Sometimes you have to experiment with the dosage for awhile, but I've met people with ADSD who get Botox injections and their voice sounds completely normal. Your statement that you'd rather die than face living with SD the rest of your life is worrisome. I would highly recommend that you seek counseling with a mental health professional, especially one who has experience helping people who have been diagnosed with a chronic condition. Yes, not having a good voice can be terrible at times, but unlike many movement disorders, it isn't life threatening and it doesn't get progressively worse. You still have good health, your eyesight, your hearing, etc. You're fortunate to live in a great country and to be able to further your education by being in college. You finally have the correct medical diagnosis and treatment is available. Many good medical professionals and scientists (especially those at the NIIH) are studying the disorder in an effort to come up with even better treatments. There is so much to be thankful for and there is no reason that you can't live a long, fulfilling life. There will always be challenges and things that will detour the course of what you planned. As your online moniker suggests, take care of yourself and love yourself. Lori
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Posted by: mdubovick ® 10/14/2008, 15:38:27 |
When you said, "I have yet to meet with my SD specialist", does that mean you've diagnosed yourself based on what you've read? |
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Posted by: Diana Prater ® 10/16/2008, 20:29:24 |
My doctor did not recommend the operation at all. And I spoke to another dr. years ago before they started using botox and he didn't recommend it either, too risky. We all know what you are going through with your voice. It could be embarrassing to me lots of time and until here lately I actually didn't admit I had a voice problem(LOL). If anyone mentioned why was my voice that way, it really hurt me. I pray all the time for healing and I am also praying for a cure for this.
God Bless! |
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Posted by: NYer AdSD ® 10/17/2008, 18:53:17 |
"I love me", I hope your voice doesn't define who you are. I hope there's more to you than just your voice. And, I'm sure your family and friends thinks there's more to you than your voice why death is more suitable than adapting to "this". I do think you should consider Lori's advice and seek professional counseling and helping you to reconsile the "trauam" that you feel SD is. I hate not having my voice. I don't like sounding funny. I have a job that requires phone useage daily and I record myself at times and think how awful. But, there's so much more to life. There's so much potential to you as a human being. Yes, this is difficult, but there are worst fate. Just researching SD and dystonia, I'd hate to have Cervical Dystonia with all that neck writhing and pain that comes with it. Pray for strength in dealing with whatever comes your way. Not to trivialize what you're experiencing -- but there are so much more worst things out there, worst disabilities out there that people have to triumph over daily, and remarkably, they do; those people I admire greatly. Hold on and be strong. Your life has more meaning, hon, than just your voice. |
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Posted by: Irish ® 11/27/2008, 00:28:52 |
Hey there,
Yes, I have had the SLAD-R surgery from Dr. Berke at UCLA. It was the best decision I ever made. I suffered with SD for 38 years and I too didn't care if I lost my voice forever. This surgery is for adductor only and you must be in excellent health. It is between you and your doctor. Please keep in mind that it is a risk and it is your decision, but the utmost thing to consider is the surgeon and his skills. I went to the best. I cannot tell you how happy I am and I communicated with 7 other surgery patients who have also had positive results. All seven of those people are willing to share with you if you wish to email. Please contact me if you want to know more. trish0@dslextreme.com |
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Posted by: Gary Lea ® 11/28/2008, 01:02:58 |
Likewise me. I'd be happy to talk with you. Email me first at glea@shaw.ca. Gary |
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Posted by: Gary Lea ® 11/28/2008, 00:59:48 |
Dr. Berke's office can speak to the issue of being rendered mute as a result of the SLAD-R surgery. I rsearched this very carefully before I had my surgery nearly two years ago. There were definitely cases of terrible results early in the history of the surgery. To my knowledge nothing like that has occurred in the past 7 to 8 years. A few, I understand, regress to SD again, down the road but the vast majority of SLAD-R patients report satisfaction. The huge challenges of living with the disorder far exceed the risks of the surgery at this time, in my opinion. Gary |
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Posted by: Gary Lea ® 11/28/2008, 00:54:28 |
Scott Adams recently had SLAD-R surgery. Gary |
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Posted by: MzNikki ® 10/15/2008, 13:19:29 |
I have read about some people's SD going into "remission". Wouldn't that be awesome! You might check under the archives and type in "remission". Medically, there is no cure, only botox. Me, I've turned to prayer and extreme faith! |
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Posted by: rickyaz ® 10/20/2008, 23:32:22 |
I have been in remission for nearly one year. My voice recovered from "moderately severe" ADSD diagnosed by Dr. Robert Craven, ENT, Tucson, Arizona, to 90 to 100% of perfect. I have no idea why this occured. The voice improved over a period of six weeks beginning November 2007. I received six botox injections, but none prior to remission. I'll post more details in a couple of days, just wanted to reply to this.
Thanks, Rick ADSD. (Tucson, AZ) |
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Posted by: MsWrite ® 12/22/2008, 15:01:52 |
SD is an incurrable disorder, but Dr. Gerald Berke at UCLA performs a surgical procedure with a 95% success ratio of stopping the spasms. If they don't return within one year, he says they aren't likely to return at all. I had the surgery on Sept. 16, 2008. I've been back on my job for three weeks now. My voice is limited in volume and tone, but I have no spasms, and it's WONDERFUL!! Please contact Dr. Berke's office for more information. Head and Neck Surgery; Phone: (310) 206-6688 |
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