hotwheels
08-11-2001, 01:26 AM
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?
Sponsor
amandabowler
06-14-2005, 04:58 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. :bouncing:
kirafaye
06-17-2005, 09:06 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, 07:50 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.
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, 08:56 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.
cbhigh22
01-17-2008, 12:33 PM
My name is Caitlin and I live in Pensacola, Florida. I'm sorry to hear about your story. Sounds like you've been through alot in your life. I know this might seem kind of strange but I'm in school to become a physical therapist assistant. I have an assignment where I have to interview a person who is a prarplegic as a result of a spinal cord injury and then write a paper on the information I recieve. I understand if you don't have the time but I would greatly appreciate it if you could help me out. Its only a few questions and I will include them at the bottom. If you decide not to, thank you for taking the time to read this and I hope God blesses you with a speedy recovery! God bless!
What is your level of disability?
How does the family provide support with your injury?
How might the family deal with or cope with the disabled family member?
How does the disability or disabled person affect and change his/her family?
How do the roles of the disabled family member change within the family?
Are there any social support systems available for someone with your injury?
What is your level of disability?
How does the family provide support with your injury?
How might the family deal with or cope with the disabled family member?
How does the disability or disabled person affect and change his/her family?
How do the roles of the disabled family member change within the family?
Are there any social support systems available for someone with your injury?