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NHS treatment and surgical procedure.

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NHS treatment and surgical procedure.

Post by surepay on Thu 05 Mar 2009, 2:00 am

Its was good to find this forum as sd by its nature makes the sufferer very isolated.

I was diagnosed withh adductor sd in 2004 and had a course of 3 botox injections. The first gave me a good voice improvment but the next 2 left my voice weak for several weeks and there was little improvement. I have since just struggled with the voice.

I recently moved to the South Coast and my voice continued to weaken. I saw my doctor about the problem who referred me to a consultant who said that the NHS does not fund botox injections here and they just offer voice therapy but there is a long waiting list for this. I got the feeling that there is a low priority attached to my case by the NHS as I am over 60 and not working - why should I need a voice?

Looking on the internet there is a surgical procedure which has been tried in US called thyroplasty Type2 which is administered under local anaesthetic and is reversible. Has any one information on this ? I guess its very unlikely the NHS would ever provide this.

Hope to hear from others affected.

surepay

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Re: NHS treatment and surgical procedure.

Post by Nintey on Thu 05 Mar 2009, 3:12 pm

Hi surepay and welcome to the forum! I know exactly what you mean about feeling isolated when you have SD, I'm lucky as my partner and family are very supportive but sometimes I think its hard for them to understand and you do feel like you're on your own with this condition.

I had the same experiences with botox, the first injection was great, I had a breathy voice for about 3-4 weeks but then my voice was really good for around 2-3 months. But the following 3 injections I had got less and less effective so I stopped having them as they weren't giving me the desired results.

Do you do any kind of voice exercises or therapy at the moment? I recently read Connie Pikes book (she is a qualified speech therapist who developed SD and has now largely overcome it through voice therapy) and the exercises she explains seem to help, although I have only been doing them a few weeks so its too early to tell yet, but its great practicing in the comfort of my own home and at my own pace.

I have heard about a process called denervation/enervation surgery, I wonder if this is the same technique? The doctor who administers this claims a 85% success rate but it takes 3-4 months before you can speak at all after the operation. It involves 'cutting' the nerves and when the nerves regrow to form a full connection, apparently people report waking up one day able to speak 'normally'. But I think your right, I doubt the NHS would ever provide this and I'm disappointed that all the surgery for SD is being pioneered in the US, it seems like we don't have any doctors pushing forward for this surgery in the UK.
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Re: NHS treatment and surgical procedure.

Post by surepay on Fri 06 Mar 2009, 1:30 am

Thanks for your reply.

It's good to be able to communicate with others affected.

I think the NHS is very lacking in support and understanding for this. The last consultant I saw
appeared sceptical that this is "real" disorder, discounted the use of botox -which he said
was anyway too expensive. So I'm waiting to get on the waiting list for voice therapy (12 months I was told) which I had before and didn't work. He gave me the impression that because I'm over 60 and retired I should just live with the condition.

I asuume that NHS in Nottingham is somewhat more supportive as you can get botox and presumably a more sympathetic response?

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Re: NHS treatment and surgical procedure.

Post by Nintey on Mon 09 Mar 2009, 5:58 am

Yes the NHS in Nottingham were pretty good, when I was originally diagnosed with SD they referred me to voice therapy then to a botox specialist. I was told that botox injections were the only treatment at the moment and that the waiting list was about 5 months. He did say I could pay to go private but that would cost around £500 and the waiting list was just as long, so I waited and had it done on the NHS.

I think its terrible that the NHS are not willing to provide botox to you, have you been told that your only option is to go private and pay for it then?

You would think the consultant would have been more helpful and maybe recommended another hospital where you could have botox injections on the NHS or where there would be a shorter waiting list for voice therapy.
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Good News and Bad News

Post by Rob Launders on Thu 27 Jan 2011, 7:38 am

Hi everybody,

I have joined today and am reading up the posts, for which thanks!

Good news: I had this condition 24 years ago (though I didn't know then what it was!); it was caused by stress (career difficulties) and lasted 2 years; but it went suddenly and I just knew that day it had gone; it was about 9 months after the stress sorted itself out.

Bad news: I have had it now since April, just diagnosed as Adductor SD, but here (Salford, Greater Manchester) they want the speech therapy before they will think of Botox. Here's hoping I get treatments in time.

Cheers, Rob

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Re: NHS treatment and surgical procedure.

Post by misty_chua on Sat 29 Jan 2011, 8:48 am

Yeah, I believe there's a stress connection. (Although my traditional doctor said it's should not be caused by stress). The statistics and testimonials I've been seeing are the same. Stress, then there's a breaking point where the nervous system is down, sometimes you get a cold, then bam! The voice has not recovered. But time and again, I've heard of people getting healed.

Good luck, Rob! Hope it works out. What happened before, what cured it? You didn't have any treatment? It just cured itself after the stress was gone?

Misty

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Re: NHS treatment and surgical procedure.

Post by Rob Launders on Sat 29 Jan 2011, 10:14 am

Thanks Misty,
You asked what happened before and what cured it.
Well, I had a pretty good job and had my first career check when I got pushed out. My next job I had the strangulated voice thing throughout, and there was an assignment that was going badly to which I said to the boss 'I was determined to see it right' which he misheard and sacked me again. I then got a great job, director level, voice still bad; this time things went well and I guess my confidence came back and with it the voice, but not immediately. It was perhaps 9 months after I made my mark. And it came back spontaneously and pretty much completely, all I had was the odd thing, like I would get stuck on certain words on the phone.

So, some 24 years ago, I had an attack, it lasted 2 years and went when the mind decided. Perhaps it is one's own feeling of self-worth returning, and it takes time!

The final irony was that with the director level job, the owner of the business decided he preferred me without so much voice!

Anyway, if what I have now is SD, then I had it then also, and it is for me stress related, and related to one's own self respect. An involuntary tightening of the vocal cords which can only be overcome with vocal tricks to produce some voice.

Rob Launders

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Re: NHS treatment and surgical procedure.

Post by misty_chua on Sun 30 Jan 2011, 10:02 pm

Thanks, Rob. If your body healed itself 24years ago. It would still have the same power to heal itself now. All the best!

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Re: NHS treatment and surgical procedure.

Post by aadam on Sun 20 Feb 2011, 3:20 pm

hi anyone know where i can get support on SD in the UK , or where i can even get botox injections privately ? much appreciated , Aadam

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Re: NHS treatment and surgical procedure.

Post by liannemorgan7 on Sat 04 Feb 2012, 6:19 am

OMG.

I am so glad to have found this site.

I recently hit the front page of The Sun this week and also a few news programs. I am trying to set up a face to face support group in the UK.

How can I spread the word on this site?

I have had sd for 4 years. I have been doing Connie Pykes exercises since December and they are really helping me. I also take GABA 1500mg herbal tablets (banned in the UK) I get them from Ireland.

I attended a job interveiw this week and I was great, its a miracle (really)

Please message me your location and hopefully we can meet and exchange support to each other - stuff the bloody NHS they have been Useless, AND PAYING PRIVATLY HASNT HELPED ME EITHER.

Love to you all x

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