Does anyone have secondary dystonia with chiari malformation?

[BethEngland]

Hi everyone this is my first post on here and I am looking for any help on chiari malformation and dystonia. I have a brain lesion and an 8mm chiari malformation. In October last year I had full body dystonia and that eased to just eye spasms, however, the full spasms are back this week. I have found websites that suggest chiari malformation can cause secondary or acquired dystonia but the neurologist is adamant this is not the case. I just wanted some information from those that know about it. I'm in England and having trouble being taken seriously with these hideous spasms. I have terrible spine and head pains, especially the neck and balance issues too.

Thanks in advance for any information.
Beth.

[selmaS]

It can take time to get in here to see a specialist as well...mostly bcuz there are more of us then there are of them.....so it is worth the wait even tho waiting is not easy.

Keep us posted on what you find out and feel free to keep asking questions.

[BethEngland]

Thanks Selma I will.
Best wishes,
Beth

[selmaS]

  Hi and welcome to the Chiari forum.

We all have had Drs tell us Chiari itself is not an issue so for one to say some of your symptoms are not related is not a stretch...

Finding the right Dr is key.....have you looked into the Ann Conroy Trust...it is a list of Drs that are supposed to be Chiari specialists.

If you need a link let me know.

As for the muscle spasms and other dystonia symptoms they are some of the top complaints from most if not all on this forum.

Medical schools did not adequately prepare Drs for this conditions OR the related conditions ....it was just a 5 min talk and then they move on....this is why finding a true Chiari specialist is so important, they have gone above what they were taught and did research...and keep it as a focus of their practice.

Each one of us will experience this differently......

Hang in there and know you are not alone.

[BethEngland]

Hi Selma,
Thanks very much for your response and information. I'm so glad to hear that I am not the only one with dystonia and chiari. I was treated very badly in October and told they had ruled out anything serious causing my dystonia. I have a brain lesion and chiari so I don't know what they think is serious. I believe one of the specialists from the Ann Conroy website works at the hospital I would be referred to so I just have to hope I am allowed the referral next week. It takes 18 weeks here before you get an appointment after that.

I am very grateful my sister found this forum for me and for your responses. It makes me feel less lonely with all of this.

Best wishes,
Beth.

[linnielou232]

Hi and Welcome to this forum.  You will find a lot of helpful information here, it not that at least support.  I have never had dystonia, but I have had to deal with full blown seizures this past year and I had my Chairi surgeries 5 yrs ago and the Dr.s here in the states can't figure my spasms out neither.  I just suggest don't stop strying, go to different Dr's and more oppion's.   You know what is going on in your own body and you have to be your own spoksmans. Wishing you bettther answers.  Here to help or just listen if you need .
Linda :)

[BethEngland]

Hi Linda,

Thanks very much for your response and support. Sorry to hear that you are still suffering even after surgery. Here you can't even see a neurosurgeon unless a neurologist refers you. I go next week and hope that happens thereafter but i'm not holding my breath as I have been left without help for 3 months.

Best wishes,
Beth.