Dystonia and Botox - My Journey

In September 2006 I started developing a painful condition in my neck. It began twisting in 3 directions, with painful muscle spasms. Finally in June 2008 I was diagnosed with Spasmodic Torticollis, also known as Cervical (neck) Dystonia. This video includes some of my story plus photos before and after treatment with Botulinum Toxin (Botox).

Category:

People & Blogs

Tags:

• Dysport injections
• Dystonia
• Botox
• Botulinum Toxin
• Warner Pidgeon
• Dysport
• Vicar
• Spasmodic Torticollis
• Christianity
• Healing
• ChristChurchTV
• Christ Church Billericay
• Dystonia treatment
• Dystonia research
• Dystonia Society supporter
• health
• video log
• pain
• therapy

[warmelody12g]

hey, me 2. Decided I would chime in. I also have Cervical dystonia and have for over 10 yrs. I get regular Botox shots in neck every 3 mo. It has made a whole world of difference. It took about 2 yrs. before I got on disability and could get the shots. NOW I AM CONCERNED....JUST HOPE MEDICARE WILL LET ME CONTINUE GETTING THESE MUCH NEEDED SHOTS.

IF ANYONE OF YOU ALSO ARE WORRIED AND HAVE CHECKED AROUND ABOUT IT, please let me know.

[TheRevwmp]

@warmelody12g Hi there, thank you for posting your concerns. I realise what a privilege it is to get my Botox injections every 3 to 4 months here in the UK, and I hope and pray that Medicare will indeed continue to pay for your shots too.

Kind regards, Warner.

[euphonies]

I came across your video looking for treatment for my dad who suffers from camptocormia, basically dystonia of the stomach and hasn't been able to stand up for 2 years now. Do you know of patients having used botox for dystonia elsewhere in their bodies? Thanks so much for your encouraging video.

[TheRevwmp]

@euphonies Thank you for your encouraging comments and for the question.

I am sorry, I haven't personally heard of anyone having Botox for that type of Dystonia but that does NOT mean it doesn't happen. If you live in the UK I would strongly recommend getting in touch with the Dystonia Society on 0845 458 6322 or email support@dystonia.org.uk - if you live outside the UK please get back to me and I will do what I can to find out for you.

With my kind regards,

Warner.

[1petelee]

No doubt this video will help save many people from years of excruciating pain, disability and disfigurement. Way to get the word out, Warner. I'm astounded at the widespread ignorance of this disease on the part of medical doctors here in the USA, and their arrogant refusal to at least do a little research before they start cutting people open. It took me maybe an hour to diagnose my own CD. Now I run ads on craigslist to raise awareness. God bless you. GOOD things happen to good people, too.

[TheRevwmp]

@1petelee Many thanks for the encouraging response. It does indeed seem as if diagnosis and treatment is at least a little better in the UK than it is in the States. I seem to having far too many conversations with Dystonia sufferers in the USA who do not seem to be getting the quality of advice and treatment that is available to us here. However, that is one of the reasons for posting the video, in the hope it will help, bless and encourage a few people at least. Kind regards, Warner.

[TheRevwmp]

@ukpanic77 Thank you for getting in touch. This is one of the reasons I posted the video. Yes, the great news is that in the UK Botox injections are available on the NHS and they are available in a good number of hospitals. Where do you live?

For help and information you could get in touch with the Dystonia Society on 0845 458 6322 or email support@dystonia.org.uk

If I can be of any help please just come back to me.

Kind regards,

Warner.

[ukpanic77]

Hi, i believe i have suffered with cervical dystonia for around 2 years now, Dr's haven't diagnosed it but after it recently worsening ive been doing alot of research and most definatly think this is my problem. Do you know if botox injections for CD are available on the NHS as i am currently out of work...

[TheRevwmp]

@MadMadamJess Thank you for the encouragement Jess. I too will be praying that you get a great result from the Botox. I had to be quite patient. It took 6 months before my head returned to a central position. God bless you! Warner.

[MadMadamJess]

Hey man...I too suffer from Cervical Dystonia and just had my first round of Botox injections about 2 hours ago. My god!! I've never experienced so much pain during a medical procedure. I'm so thrilled to see you looking a bit better than the original pic! I know what it's like to not be able to get up..and spend most of your time in bed...I hope and pray that the Botox helps me as much as it has helped you. You are an inspiration! :)

xoxoxo

- Jess