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Want to connect with others with Spasmodic Dysphonia: Will you join?

Posted by sguttmann @sguttmann, Mar 25, 2022

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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tct | @tct | Jan 15 8:20am
In reply to @bvpepper "I lost my voice August, 2025, when I had a large goiter and my thyroid removed..." + (show)
Profile picture for bvpepper @bvpepper

I lost my voice August, 2025, when I had a large goiter and my thyroid removed surgically, and my vocal cords were damaged. I’ve had a small surgery to increase my ability to breathe, and I’m
thankful for that.
I’d like to form a group to practice the voice devices to help each other learn.
Is anyone interested?
I understand there are about 7,000 people in the US that have paralyzed vocal cords, but I have found no group, speech therapist, or assistance from the medical profession for provision for any post_ diagnosis assistance!
Anyone interested in a group? Or anyone who knows of others with the same diagnosis???

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@bvpepper
Yes, I’m interested in following this discussion.

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bvpepper | @bvpepper | Jan 15 1:57pm

What would be the next step?
I have two people interested, im happy to say!
Any ideas?
Thank you for your message!!!
Barbara

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vicrochoffman | @vicrochoffman | Aug 22 4:13pm
In reply to @vistagan "Hi, I'm in the UK and there is not a lot of information regarding this condition,..." + (show)
Profile picture for vistagan @vistagan

Hi,
I'm in the UK and there is not a lot of information regarding this condition,
After searching, i came across this forum, i was diagnosed 4 years ago and i get very frustrated,
I have a strange question, and was wondering if anyone else has had a similar experience,
I have found when i've had a few Guinness {my tipple} i speak with no problems, but the next morning i am back to having the same symptoms,
I find if i can talk with no problem when drunk,, what good would botox do, there must be some other disorder they haven't found,

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@vistagan I was recently diagnosed with vocal tremor and paralysis of one chord at UC Davis ENT Center. I have had one Botox injection and didn’t notice improvement. I’m currently trying speech therapy but don’t see it doing much. They are now recommending trying a filler injection into the one paralyzed chord. It’s frustrating because I feel like a guinea pig with no real answers or results.

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