hemi attack aug 6 10 006.MOV

MILD Ballistic Attack caused from Hemiballismus. I had 3 the day prior to this taping and my muscles were totally wasted. I have absolutely no control over my left side during an attack as the trauma was to the right side of my brain. My head jerks to the left (so now I keep it there to prevent soresness later), my left arm rotates in a circular motion and my left leg jumps around. If I am restrained in any way my body reacts violently so I refuse to be restrained.
It was nearly a year before I was diagnosed. I also have Syringomyelia; a Syrinx inside my spinal cord as well... caused from the same riding accident where I was thrown into a wall and broke my back into two places and hit my head against the wall. Both of these are rare, progressive, incurable and attack the central nervous system. I am told that I am the only KNOWN person to have both of these two rare neurological conditions and here in Halifax, Nova Scotia, Canada, they have no idea how to treat me. In the last 6 weeks I have had 11 Ballistic Attacks and I am losing the ability to walk again. In the last 11 years I have had to re-learn to walk 7 times and I can feel I am headed in the same direction again. I now use forearm crutches for very short distances, and Scooters for longer distances. I can not push wheelchair wheels due to Whiplash Associated Disorder so I use them for emergencies only with other people pushing them.
After I have an attack I am very ATAXIC. I have no control over the use of my legs as well NO CORE STABILITY.
I am seeking help. Hopefully someone that has experience with Hemiballismus will be able to help with treatment or direct me in one way or another. Serious inquiries only please to charliemilne@ymail.com.
Thank you for your time in watching this.

Category:

Science & Technology

Tags:

• Hemiballismus
• Ballismus
• Ballistic Attack
• Neurological Disorder
• Neurological Research
• Syringomyelia
• Syrinx

[twfoth]

I hope you don't mind me saying but I'm a 2nd year medical student in the throws of exams, frustrated by a poorly taught unit on neurology and psychiatry.

Technical description of a condition couldn't possibly substitute your personal experiences as someone who's affected by it and the video you've created during an attack. I sincerely would like to hear how you are managing now and if you have had any responses to this video. Thank you as well, for re-establishing my interest in neurology.

[simplirristible]

HI @twfoth I have to apologize.... I had very difficult issues getting logged into youtube. No, or course I do not mind. I hope I can be of some help.

No, I did not get any response from anyone with both of these conditions, so as far as I know I am still the only known. I have, however, gotten some infor from NIH and Emory hospital in regards to clinical trials or research and since Hemiballismus is so very rare, none of them include both conditions. So hoping for spine and brain trauma trial

[missamelie17]

Hi sweetie! My name is Amy & I suffer from syringomyelia and spinal cord tumor at T12 level. i had surgery a few years ago & had a permanent shunt inserted, laminectomy, etc...My thoughts are with you. I ADMIRE you for your courage, strength & BEAUTY! Thankyou for sharing with us....my pain is constant & chronic and i don't know what to do. I get spasms & also relearned to walk after my surgery. I pray & hope for research for us and coming generations. Blessings and more blessings your way<3

[acdw382]

OMGosh Charlie-you are amazing to be able to do what you do with this condition. Hopefully sharing thisvideo will help you find people that can relate or maybe even help.

[simplirristible]

@CyborgNinja7 Thank you very much though. I do hope you can join our awareness site for Syringomyelia and Arnold Chiari Malformation; we welcome everyone from anywhere in the world.

[simplirristible]

@CyborgNinja7 Hi, thanks for the info. I am on Clonazapam, which is recommended for Dystonia and have been for many years for the treatment of Hemiballismus. Am also now just switching over from one anti-seizure med to another, although they aren't working, and I hope to go off of them after speaking with my Spinal Cord Specialist on 24th Sept/10. The only med that stopped them was Nitoman, and I could not function on it. Please join me on smawareness.ca for SM; I'm the NS, Canada Rep.