Starting a discussion group for Spasmodic Dysphonia: Will you join?

@sguttmann, thanks for starting this new discussion group dedicated to spasmodic dysphonia. I've also added the discussion to the ENT group. I think fellow members like @patriciagsr @seaside162 @cathleenmc @maxine321369 @kathystl would like to join you.

SGuttmann, how long have you been living with spasmodic dysphonia? How often do you need botox treatments? Does working with a speech pathologist help?

Hi, thank you for allowing me to start this group. Two years I have had SD. Started with the first round of covid, self-treated which left me with a fungal infection in my throat. Then I slowly started losing my ability to talk. Speech therapy did not work for me plus I could not afford it.

Thank you @colleenyoung for thinking of me...I will join

Hi, I don't have spasmodic dysphonia, what I have is Oropharyngeal dysphagia, Cricopharyngeal achalasia and Paralysis of left vocal fold. There are some differences. I had some surgeries in Mayo Clinic, one of the restilane injection in the vocal chord. Sadly it didn't work for me, after that I had some fat removed from me and inyected, didn't work either. I felt really desolated. Without being able to talk nor eat I felt really isolated from the world, it was very difficult. What finally worked for me was seing a specialist. I went to Dr Milan R. Amin in NYU Languone Health (NYC) and after some consultations he suggested a surgery in which he changed my vocal chords and implanted a new one. For my dysphagia he did a ablation of my esophagus, an both have helped me a lot. After that I did speech therapy because the therapy I did before didn't work because I had no vocal chord.
Hope this helps a little bit 🙂 let me know if I can be of any additional help

Hearing your story, it does help me to understand that there are more options available if needed. Thank you for your insight and response. I know about isolation; it is very difficult to live in a world that communicates verbally, and we struggle to get a sentence out. I may contact you at some time for more information.

I don't know if anyone is still using this discussion but I have had SD for two years. I traveled to Salt Lake , University of Utah and had botox injections. It really didn't work for me. I sounded like Marge Simpson and I finally gave up. I haven't found any other options and am trying to learn to live with it. I currently live in Mesa AZ and wished I could find a support group.

I have SD also. I opted for surgery many years ago, so my left vocal cord is paralyzed. I have a gravelly voice, but it is easier to talk. I used to get Botox injections at Mayo Clinic in Arizona which worked well.

That's interesting. I asked my doctor if I could have surgery and he said the type that I have, surgery wouldn't work. But I should get another opinion.

love to join. It would be great to find out what our individual history is.

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,