Spasmodic Torticollis (Dystonia)

Duiske

Hi, after 2 yrs of being prodded, poked, x-rayed and scanned, i have finally (last week) been diagnosed as surrering from Spasmodic Torticollis. It is a form of Dystonia which causes a muscle in the neck to spasm, which in turn results in the head being pulled to the right. I have come across a website, www.dystonia.ie, which gives general info on the different forms of dystonia, but very little specifically on SP. I was wondering if there are any fellow Irish SP sufferers out there who could help me get more info on things such as treatments, personnel experiences,
etc. I guess I would just like to know what I can expect from now on. Any help would be greatly appreciated. Thanks.

snorlax

if you run a google search on spasticity you will probably see it coming up in lots of other conditions like CVAs( strokes), in a cervical cord spinal injuiry spasticity is often present, cerebral palsy or other conditions that affect the tone of the muscle.
spasticity means when then muscle fibres tighten and contract to become more rigid and more inflexible which makes the joint harder to move, it can also lead to permanent contractures of the muscle/ joint if left untreated and active and passive range of motion is not kept up in the joint. .Spasticity is also known as hypertonia.
"Dystonia" is defined as a movement disorder in which involuntary sustained or intermittent muscle contractions cause twisting and repetitive movements, abnormal postures, or both.

flaccidity is also known as hypotonia.

anything from temperature, to stress to massage can influence your tone (your muscles are often more contracted/ toned after a stressful day in the office hence a hot bath can sometimes relax the muscles), also more anxious people often are more toned when you run your fingers over the muscle. in your case i recommend you see a physio or occupational therapist (normally part of a multidisciplinary team) they can work with you either by making splints/ braces and keeping active and passive range of motion in your joints (the bones in your neck being cervical vertebrae, and joints in between each, including the atlanto axial joint for your skull). also i suggest googling for other terms like cerebral palsy where variations of muscle tone are common.

snorlax

im just going to give you this wikipedia likn as it may explain it better then me. try looking for research articles to on various treatments, there are one or two that are free to access and if you don't understand a term google it or use wikipedia as some of the tems used in health science are quite complex.

http://en.wikipedia.org/wiki/Dystonia

Duiske

Thanks for the reply snorlax. I have to go back to St.James in 2 weeks for an MRI scan, as specialist thinks there is a possibility it is related to an accident I was involved in about 7-8 months before I noticed symtoms. He says that if there is a link, there is a small possibility that it could be something that could be operated on. If not, then he thinks Botulinum Toxin injections and physio may be the way to go. Anyway, thanks again for the reply and link.

snorlax

yes it's probably Botulinum toxin type A and Surgery are often used in medical managment, Therapies are often done in conjunction with medical treatment. try looking for the neurodevelopmental frame of reference or the normal movement frame of reference (although be warned they may be a bit waffley!)..these treatment approaches are the most common used by OTs and PTs, aswell as compensatory approches like finding different ways of doing things (functional activities), sometimes using assistive devices, or even just organizing how the stuff in your cupboards are laid out in order to stop further strain-more of an OTs job (occupational therapist).

mick102

I was diagnoised with cervical dystonia 5 months ago. My head turns to the left constantly however when i am rested i have no problem keping my head straight. About 4 years ago i noticed that my neck was not straight, it seemed to bent to the right! at this time my head was not turning to the left but over time my head felt like it needed to turn to the left(which would explain the theory that your eyes will always want to go to the centre of your body).

I got CT and MRI scans but the orthopeadic only looked at the MRI which showed i had a herinated dick on C6 C7, he recommended traction which did not help, I then went to a neurologest and she said i have cervical dystonia. Ive recieved 2 botox treatments but they are no help.

Ive been doing some research and have been looking into the possability that my atlas could have been misaligned for the past few years(evident from old photos).Even my passport photo from 13 years ago show a slight bend in my neck! It is only possible to see a misaligned atlas using a CT scan however the orthopeadic didnt view my CT scan and maybe when they saw the herinated disc he failed to keep searching for more damage!!

Has anybody else got experience in this?