Re: Welcome to the forum!

[palall]

Hi Katieh,

I have ADSD and have had three lots of Botox injections at the QE also. My experience was that my voice was reduced to a whisper every time and this lasted for about 4 to 6 weeks then no improvement at all in my speech.
They tried altering the dose and injecting one side only but i had to reluctantly give up the treatment because i couldn't risk going through voice loss again. Botox works for some but i wasn't one of them.

Everyone with SD experiences different symptoms and my voice can be reasonably fine then change from hour to hour. I don't have swallowing problems though i can imagine that must be awful.

Keep us posted as to how your voice reacts.

[katieh]

Hello Everyone,

I last posted in December 2011 following my 2nd Botox injection, to which I suffered a very strong initial reaction which left me feeling that the injections didn’t suit me.

After the reactions subsided, which took about 2 weeks, my voice stabilised but remained hoarse and I admit that I didn't think it was worth while continuing with the treatment. However, as time lapsed and the Botox started wearing off I noticed the worsening of various symptoms most notably an increase in the frequency and severity of throat spasms and tightness. The quality of my voice had deteriorated to the point where virtually everybody I spoke to made comment about it or asked if I had a sore throat or had I been shouting, etc! In consequence, I really struggled in my full time job which involves a lot of telephone work and dealing face to face with people and started a downhill battle with depression. The increased stress/anxiety just further exacerbated my symptoms.

By the time my 3rd injection was due I was really struggling and was desperate for help. I then realised that I had been so focused on the fact that my voice had not returned to its pre-dystonic days that I had overlooked the improvements I had experienced over the 2 month period notably a reduction in the frequency and severity of the throat spasms and tightness.

Whilst in the waiting room for the Botox clinic I met another SD sufferer and cannot even begin to explain how listening to him talk and sharing our experiences helped me emotionally. I left hospital that day no longer feeling alone and a freak.

It has now been 4 weeks since my last injection. This time I was injected into both vocal chords and to date it has been my most successful and positive treatment. The throat spasms and tightness are greatly improved once again. My voice is fairly quiet and still ‘hoarse’ sounding but the breaks are fewer. In consequence, I have found that not so many people are asking me about my voice which makes work life so much more tolerable.

On a negative note, I have lost my laugh (which is now silent) and I can’t raise my voice. I am still suffering breathlessness too which I feel has been worse since my last injection.

With regard to my swallowing issues, I am now taking a prescription anti reflux medication on a daily basis and am pleased to report an improvement, definitely not cured, but much easier.

Anyway, enough from me now!

Best wishes to you all,
Kate

[Rob Launders]

Hello,

I just got a reminder from the past - an email from this forum. I think my last contact was 2011, but I am still an SD sufferer, so feel supportive of the forum and all you others.

I receive botox, on the NHS, at irregular intervals at the London Throat Nose and Ear Hospital. Wonderful service, but intermittent. I am generally coping just fine with this, but stress and hayfever can really hit the voice still in the absence of botox injections. However, looking back over 30 years, I have more recently kept out of the bad periods. I had 3 bad periods, 30 years ago, and 14 years ago - each involving total loss of voice for 12 to 30 months - and 9 years ago when I got a (private) diagnosis and (eventually) started treatments of botox throat injections.

Bon courage to all sufferers of spasmodic dysphonia !

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