syringmyelia...paraplegic - Rare Disorders Message Board

hotwheels · 08-10-2001, 10:26 PM

Hi, I have posted on other boards with my problem but as yet have had no responces. Is there anyone out there with this. I have a cyst in my spinal column, I think it has developed within the past 5 years. I am also a paraplegic. What worries me is that the cyst is above my level of injury and I am worried about my level T4 creeping higher. Can anyone give me any advice?

amandabowler · 06-14-2005, 01:58 AM

Hi HotWheels, I don't have this disease, but was hoping to find a board with a post about it. My mom was diagnosed with it about four or five years ago. I don't remember exactly. Anyway...as far as I know the cysts tend to grow with gravity, which would have them grow down, so esentially your level of paralysis shouldn't be afflicted unless it starts growing in the opposite direction. But I was looking for a board to try and find people with this same syndrome because I have a question. My mom says that it causes her a lot of pain, yet then she'll do things that you would think she wouldn't even be able to THINK about doing if it caused her the amount of pain she SAYS it does. She also will be fine and then all of a sudden feel like she's going to pass out if somebody asks to do something that she doesn't want to do. I understand and respect that it's a real disorder and I'm not doubting that. I love my mother more than anyone in the world and would switch places with her in an instant if I could. I'm just wondering if she's truly in the amount of pain she says she is. Mainly I ask because she's fine until she realizes there is somebody around, and then she can't even move. Insight would be appreciated.

kirafaye · 06-17-2005, 06:06 AM

I hadn't see this either...I have syringomyelia from mychiari malformation....mine goes from c2-t10 so I am lucky to be standing.....I have a friend who is in a wheel chair from it and I am trying my hardest to stay out of it.

hypokelly · 06-29-2005, 04:50 PM

Hello hot wheels,Amanda,& kira,
My father had syringlomylia, so when I saw your post I had to read it as there is very few that have this disease.
My father past away 3yrs ago, but not from this disease( heart attack)
But this disease was diagnosed about 5yrs prior.
I can remember growing up and he was always in such pain with his back. Dad had surgery to shunt the fluid off the spine, it helped for a bit, but he did eventually end up in a wheelchair, as he kept falling.He also had a hard time with feeling hot and cold.

spyrogirlkim · 09-26-2005, 05:56 PM

I had an MRI about a year ago and just got the reports on it a few months ago.It says I have 2 syrnigomyelia's.I don't know why the doctor didn't tell me.I guess they aren't woried since it aint there body.There has been 2 doctors tell me I will end up in a chair.I also have lots of tumors on my spine.