My name is Marysia and I suffer from both Arnold Chiari and Syringomyelia.
After my Foramen Magnum decompression operation in 1992, the only information I could find on the internet about these diseases came from excellent web sites in the States. I realised that there should be help available to sufferers in the U.K. so, Michael my husband, set about creating the first web site in the U.K. dedicated solely to Arnold Chiari Malformation (Hindbrain Hernia), and Syringomyelia.
My problems began when I was 21 with a range of odd symptoms which did not fall into any specific medical category. I was seen by Orthopaedic Surgeons, Neurologists, Chiropractors, Osteopaths, Physiotherapists and it was even suggested once that I should consult a Psychiatrist!
The problems continued as did the pain and numbness in my lower body, left leg, and spine. The upshot of this was many ghastly invasive investigations including a Myleogram which subsequently gave me another problem - Arachnoiditis. Finally in 1983 it was discovered that I have Degenerative Disc Disease which accounted for much of my lower back pain. To date I have had 9 major spinal operations.
The pain in my neck, chest and arms when I sneezed or coughed however, did not go away. Fourteen years later, when I sneezed one day, the pain around my chest became unbelievable. This was a completely new ball game! I immediately saw a local Orthopaedic Surgeon who sent me for yet another MRI scan. This one did not show as we had expected, a prolapsed thoracic disc, but rather surprisingly a Chiari 1 Malformation and an extensive Syrinx from C1 to L1. Two weeks later I had my decompression. To date the syrinx is still collapsed, I can sneeze and cough without fear. However, owing to 14 years being lost, the neurological damage to my spinal cord is gross.
I have had to change my life to a certain extent to accommodate my disabilities but basically there is life With ACM and SM and I intend to live it as fully as I possibly can.
My thanks go to Mr.N.Garvan. F.R.C.S.
Consultant Neurosurgeon for carrying out my operation and vastly improving the quality of my life.
My thanks also go to,
Consultant Spinal Surgeon, for carrying out my last three back operations.
The World Arnold Chiari Malformation Association, W.A.C.M.A. have invited me to be their U.K. representative. I am delighted to say that I have accepted their offer.
Please take time to sign my Guestbook, (which can be found under Email and Links), as your comments may be of interest to others.