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Starting a discussion group for Spasmodic Dysphonia: Will you join?
I have Spasmodic dysphonia, which is a rare disorder affecting the vocal cords. Only treatment for now is Botox, which does help. Otherwise, I struggle with trying to talk, my voice breaks up when speaking. There are about 4,500 people who are living with this disorder. It can be very debilitating, depressing and frustrating. It affects the muscles in the throat and has a link to the wiring of the basal ganglia. Any help, comments or tried and true self help treatments would be helpful to hear about. Thank you!
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Welcome, @vistagan. I'm tagging @sguttmann, @katgallant, @bruceandruth1970 and others to make sure they saw your first post and question.
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2 ReactionsMy Spasmodic Dysphonia was diagnosed in 1983, so there are probably more options now. At that time the doctor paralyzed the left vocal cord. It has left my voice raspy, but there is no problem speaking. I also did some speech therapy and Botox injections afterwards.
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3 Reactions@bruceandruth1970 do you think the surgery was worth it?
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1 Reaction@trevorbrouelette For me it was.
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1 Reaction@bruceandruth1970 so it sounds like they removed the spasm nerve from one side of the vocal chord and left the other one in tact, but you later on got botox in the non treated chord? I believe that is what we now call unilateral SLAD-R surgery.
I am afraid to get it bc of complications but I am not satisfied with the temporary nature of botox.
The T2T surgery seems more attractive to me but its only available in Japan, and any complications later couldnt be treated in the US.
Stay strong and happy holidays
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2 ReactionsDebilitating, frustrating, and depressing describe it perfectly. How are botox treatments working for you? For me, they are better than nothing but its a rollercoaster of good and bad. Doctor visits and insurance headaches are a nightmare too.
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2 ReactionsI also have SD w essential tremors diag which makes it worse after visit w Stanford ENT who said sorry if you don't do Botox then we cant see you. at least that is what the speech therapist I was assigned to in only 1 visit said can't help you. I am on anti rejection meds for kidney transplant w Mayo Clinic AZ and will NOT do botox for life and understand it's a hit or miss w side affects and interaction w transplant meds.. My Allergist And asthma dr referred me to Sutter dr in SF Voice Disorder dr. I just finished w 4 sessions w 1 of her voice specialist. Then appt #2 in Feb w Voice Disorder dr ENT. SD worse in last 6 yrs of 20 yrs compounded by inherited Essential Tremors. The speech therapy has helped! some days better than others. SD is embarrassing and aggravating especially w all my medical appts making them on phone
w " I can't hear you- your holding phone away" by people and med schedulers on phone. Botox as solution was 1983. I will not do botox. Yes SD embarrassing even trying to order food. Is there devices for phone calls. I live alone. There are 2 types of SD. My voice locks
@colleenyoung I also have SD compounded w essential tremors. My comment below. Pls keep me in this grp
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2 Reactions@sguttmann sorry for the delay in my reply… please feel free to contact me if you want. We all support each other and that really helps.