Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
Hi, I am new here so please be gentle!
My name is Lucy and this summer, after years of being treated like a hypochondriac, I was diagnosed with Chiari Malformation and Syringomyelia. The surgeries may be in the near future for me but not right now. I don't really want to have any seeing as they are unlikely to help me feel better but will consider them if my neurosurgeon is worried about things getting a lot worse without.
At 16 this has completely turned my life upside-down, I am in constant pain in my limbs, hip, head and spine and my mobility has been severely affected (considering getting a wheelchair). I am unable to go to college or work as I am active for maybe 2 hours a day at most.
I know there is no easy answer to this but how has anyone else coped with such a devastating turn of events?
I feel completely lost and helpless, I had so many ambitions and things to look forward to which now feel completely out of reach.
I don't know anyone with either problem so if people could please share their experiences with me; it may be of consolation to me that I'm not the only person in the world coping with it.
Thank you.
P.S. I already posted this in the chiari malformation forum but put it on here too incase one forum is more active than the other.
My name is Lucy and this summer, after years of being treated like a hypochondriac, I was diagnosed with Chiari Malformation and Syringomyelia. The surgeries may be in the near future for me but not right now. I don't really want to have any seeing as they are unlikely to help me feel better but will consider them if my neurosurgeon is worried about things getting a lot worse without.
At 16 this has completely turned my life upside-down, I am in constant pain in my limbs, hip, head and spine and my mobility has been severely affected (considering getting a wheelchair). I am unable to go to college or work as I am active for maybe 2 hours a day at most.
I know there is no easy answer to this but how has anyone else coped with such a devastating turn of events?
I feel completely lost and helpless, I had so many ambitions and things to look forward to which now feel completely out of reach.
I don't know anyone with either problem so if people could please share their experiences with me; it may be of consolation to me that I'm not the only person in the world coping with it.
Thank you.
P.S. I already posted this in the chiari malformation forum but put it on here too incase one forum is more active than the other.
I had pain in my back and neck for a long time and I had went a chiropractor for the pain and treatments that he said would help me,but it just kept getting worse and when I went to my GP all he would do was run a few test and take some x-ray`s[once he did a bone density test]but he would not follow up with anything else.So finally after 4 years of dealing with the pain and missing work I finally switched my GP and had ask her if she could think of anything that could be done to help because I was getting desprate.She sent me to have some MRI`s done and when she goot the results back she was really worried by what they had told her.She told me that she was not up on SM so she sent me to a NS and in December of 2005 I had surgery on the syrnix in my c-spine because at that time I was loosing the strength in my arms and couldn`t feel my hands.From the time of my first MRI until the surgery was from June of 05 until December of 05.Not everyone has to have surgery that quick but I did because of no one really knowing what test to actually do until I changed my GP.I have been told that Syringomyelia is a rare disorder,but I am finding out that more and more people have it and don`t know it.Mine is more likely caused from trama to my spinal cord from an motor vehicle accident that I had in 1992,when I was thrown out at 60mph.
I don`t know what is in store for me for the rest of my life but I do know that I have to keep fighting and I will not give up and I do encourage you to keep fighting.They suggested that I should get into a PT program and learn how to stretch and try and build some strength back in my arms and legs,so that is where I am at this time.I do have to go to the NS next week in Lubbock,Tx. to find out how I am doing and every year I have to have MRI`s done to make sure that the three syrnix`s in my neck,thorasic,and lumbar spine haven`t gotten any bigger or started to swell up my spinal cord like it did in my neck.
I do hope this is what you wanted and that I haven`t discouaged you in your quest to find out more about SM & Chiari.One good place to find out more is the American Syringomyelia Alliance Project.
Your friend,
Monte