Syringomyelia

sassa

Hi I'm just wondering (hoping really) that there is someone on here that can give me some info on Syringomyelia? My granny suffers from it and has very intense pain and extremely limited motor functions because of it. We have spoken to her gp to try and get some info on it but couldn't get anything more than what you find on wikipedia (which really is where he found out his info)
I'm hoping someone can point me towards a support group or in the right direction to get the info we need.
I've done google searches and have found one group in ireland but they're website says under construction last updated January 2011.
Really hope someone can help as its hard trying to help her pain relief and make her comfortable without fully understanding the disease.

up for anything

There seems to be quite a bit of information out there but you will probably need to dig through it a bit to find helpful stuff. It is always worthwhile contacting the UK and US support groups and asking them about support here. It sounds like a small world for the people afflicted with it and they probably know what is going on worldwide. Good luck with helping your granny. It doesn't sound pleasant at all.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002373/

http://www.conquerchiari.org/Education.htm

http://www.ninds.nih.gov/disorders/syringomyelia/detail_syringomyelia.htm

There seem to be lots of addresses for further information at the end of this link.

http://www.ninds.nih.gov/disorders/syringomyelia/detail_syringomyelia.htm

On the website under construction there are these contact details. Have you tried them to see if they are operational.

To get in touch with the group you can
ring or text our helpline: 087 6109974
email syringomyelia@eircom.net
or write to us at
Syringomyelia Self Help Group,
Kellystown,
Slane,
Co. Meath.

Some links to various groups.