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TOPIC: vocal dystonia

vocal dystonia 4 years 7 months ago #2285

  • rachie123
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Hi All

I am 35 years old and I was diagnosed with vocal dystonia about 3 years ago after having symptoms and speech therapy for 3 years previously. Since diagnosis I have embraced treatment in the form of Botox injections into my vocal cords, however recently am aware that this isnt working as well as it initially did. Also, I'm not sure if I'm having spasms elsewhere in my body or if its psychological.
Does anyone know what the chances are of vocal dystonia spreading to other muscles?

I'm new to the forum but feel very supported by finding you all!
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vocal dystonia 4 years 7 months ago #2287

  • Paul.King
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Rachie,

You might want to raise your questions with our helpline - call 0845 458 6322 or if you prefer email This email address is being protected from spambots. You need JavaScript enabled to view it.
Paul King
Moderator / Dystonia Society CEO
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vocal dystonia 3 years 11 months ago #2866

  • Supergran
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Scary the vocal spasms isnt it......in my case I had other symptoms which effectively means generalised dystonia and the vocal thing came later I thought......but then when I look back I would have to say I am wrong because my speech back then always after a sentence ended in what I can only describe as a stuttered spasm with the last letter/s of the sentence I hope this makes sense to you and then one day I realised that I would stutter a whole word effectively the last word or so of what I was trying to say went missing and from that the vocal thing is not good for me...went to the clinics....dietician to help me eat without the food going the wrong way down, I would eat toast for breakfast and then about 2pm in the afternoon I would have a ferocious fit of coughing and in my mouth was bits of the toast I had for breakfast. I have to say I was a little entertained by this at first but was told there is nothing good about this because the food going into my lungs would give me pneumonia. so I considered myself to be appropriately chastised and this is still a case of work in progress. I then went to speech and language and was taught how to look after my throat which I thought was good as I was already gargling to make my throat more comfortable and with that my voice sounded better.

This bit gets a bit trickier because my throat spasms were full on and this affects your breathing and eating and talking not wanting to scare you but for me that is a trip to hospital an IV treatment of procyclidine and it is honestly on the clock works in 3 mins which is amazing I call it my magic jag.I now know when its coming I am out of breathe then a cough comes and there is nothing normal about this cough....I have always said it works the same muscles in your body that weight trainers work when they are looking for that V shape...then I recon I have about 15-20 mins to get to hospital in comfort before it becomes challenging to breathe and this challenge lasts one ambulance crew told me 45 secs which does not sound to bad until you consider you dont have a deep breath of air before this happens so there can be a shaky thing that gets involved as well.

With all of this detail please tell me I have not freaked you out the key to success here is take control and keep control, learn to read your body...it speaks volumes at times like this and dont mess about when you know your throat is in spasm. 999 and go!!!!

Take care and god bless I am off to hospital now to practice what I preach....my back feels like I have been slam dunked against a brick wall and the pain is making its way round the front of my ribs. I had a few bad experiences or incidents which was less than helpful and I made a complaint. The outcome of this is we are a step closer to paramedics being able to carry and administer the drugs needed which would mean for us that we can stay at home and not have to go to casualty for this treatment.

All the best and know that you are not alone

Christine XX
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vocal dystonia 3 years 8 months ago #3034

  • ScattyMe
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I have just been in conversation with my Daughter in law who has a friend with Spasmodic Dysphonia
That lady had tried botox and it had very little effect . She has now had surgery on some nerves in her neck. apparently they had died. so not sure what the surgeon dd but it took about 6 momnths to regain her full vocal range again.
Guessing she is about my age in 60's as DIL is same age as my daughter.
I am trying to get more information and will post back when I know>
We can then try to find out if this is posisble in UK>

Stay strong
myGp keeps telling me it is psychosomatic. YET I am not stressed most of the time and a couple of weeks ago I went in for a procedure that was excruciating because the surgeon did not give me the amount of sedation I asked for. So if that was not stress what was and yet no difference to my voice. or focal dystinias in general. No spasms either. GRRRRRRR
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vocal dystonia 1 year 8 months ago #3928

  • paula42
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Hi been diagnosed with voice aphonia, been to ent few times and had camera in, seen top doctor who can not give me answers as to why my voice has gone, been like this for 8 months now and struggling to come to turms with it. I'm currently having speech therapy since January and no improvement in olso seeing a councillor to try and come to terms with it, I've been diagnosed with a large posterior chink in which the vocal cords are not coming together and leaving a gap where air is coming through, been told there's no surgery only if one of the vocal cords were not working, I can not speak on telephone it's really changed my life.
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