Posted by: sopranick7 ®
06/03/2014, 15:40:44
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Oh my, how do you feel about all of this Cindy? I think it is a positive that this Dr. recognizes what it is. I know many of us struggled for a while with a diagnosis and thought we were going crazy. Botox will help you. I bet this board will help you a lot.((hugs))
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Posted by: cindyg ®
06/06/2014, 13:04:36
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Thank you. I didn't know what to think when I was told I have SD I never even heard of it. I'm scared to get the injections, but I just hope it helps. Does anyone ever get cured form this ?
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Posted by: Gentildj ®
06/29/2014, 06:36:58
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Getting BTX injections sounds worse than it is! ReAlly does not hurt and you will more times than not see positive results. Be patient in working with Dr. To find the right dose and right injection spot! BTX is our best tool at this time and join a support group if at all possible ! The people are tremendous and you will gain so much from other people,s experiences!
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Posted by: rdcrawford ®
06/30/2014, 22:02:24
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Cindy, best of luck to you. My first round of botox helped for 6 months, the second for 3 months and the third didn't work at all. The specialists at Rose medical said that wasn't strange. Hope you have better luck.Rich
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Posted by: nada23 ®
07/01/2014, 06:33:56
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Botox is trial and error. I've been getting shots since March 2013(every 3 months). Good luck!
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Posted by: dennis couch ®
06/05/2014, 19:25:20
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Hi Cindy, If you go the NSDA site, you will see a category where you can search for support groups by state. Botox can work rather well but sometimes takes a little patience with your doc to find a good dose amount for you.
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Posted by: cindyg ®
06/06/2014, 13:09:52
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Thanks for the information I hope the injections work.. The closest support group from me is 3- 6 hours from here . I live close to Amarillo Tx.
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Posted by: pb2233 ®
06/08/2014, 11:52:35
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Hi Cindy, welcome to this site! I too had no idea what SD was when I was diagnosed, about 10 years ago. Read as much as you can from this site. When I started I read about two years worth. Ha! Where did I find the time? Anyway, you will learn a lot, and even find similarities and lessons. I was shocked to talk on the phone with someone who sounded just like me, for the first time. It was better than talking to myself. Ha! Anyway, enjoy your experience here, and good luck on your journey.Paula
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Posted by: cindyg ®
06/08/2014, 12:42:46
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Thank you Paula.I'm trying to read as much as I can because it's so interesting. I can't believe I've never heard of it before. My husband works with a man that has it and he got his first injections last week and his voice is back about 75 back already. I'm scared to get the injections but excited also. I'll keep up with my results and I love talking to people with the same problem as mine it helps..
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Posted by: Gentildj ®
07/01/2014, 19:06:47
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Don,t let fear keep you from joining a support group! Botox can help and make your life much better! Be patient and find out the best BTX amount and location! Getting BTX shots is not bad and spams will stop after BTX takes effect! A support group is a lot of fun and you learn a lot! There are people from every profession and thrilled to meet new members! Don
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Posted by: Keith ®
07/14/2014, 21:23:06
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Hi Cindy,First of all, you have a good attitude about the whole thing. Besides botox, another option you can consider is trying voice / speech therapy. If you can locate a good SLP (speech, language pathologist) who is well versed in dealing with SD, it can really help. Were you diagnosed as having mixed AB and AD? AB is more treatable with therapy but is a bit more difficult to treat with botox. The administering physician needs considerable expertise to accurately place the botox into the muscle affected. With AD, that responds less to therapy but achieves better results from botox for the most part. It is important to get a clear diagnosis. Also, if you do decide to pursue injections and don't get a good result from the doctor you're with, don't hesitate to 'shop around' and try someone else. This website is an excellent source to research ENT's all over the country. I drive 300 miles one way to go for my injections, because the doctor I have is so highly skilled (I have AB). Also, don't necessarily expect great results from the first injection. It could certainly happen, but don't get frustrated if it doesn't. Sometimes it takes several injections to 'titrate' to the correct dose. Also, please discuss with your doctor the potential side effects, which, if you get any, are temporary and then go away in a few days or so. What you want to aim for is a dosage of botox that provides the greatest benefit with the least amount of side effects, if any. Then, after time, you'll begin to see how long your benefit period lasts and you'll know when it is time to think about getting the next injection. Best of luck to you. Keth
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Posted by: cindyg ®
07/14/2014, 21:46:24
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Well I went back in June and my dr said well your voice is no better so I want you to do speech therapy for 6-8 weeks then if your not better I'll send you to the other ent Dr to see about getting botox injections. So I go see her this Friday. I'm scared but excited to see what she has to say . My speech therapist thinks I have abb . I'll post how everything goes along the way. Thank you for all the support.
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Posted by: Keith ®
07/25/2014, 21:42:13
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Hi,I hope the speech therapy goes well. As I mentioned, AB responds well to voice therapy IF the skill of the SLP that you are working with is such that he or she is well versed in treating SD. Best of luck. Keep us posted. Keith
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