Dual Diagnosis of Spina Bifida and Arachnoiditis

I have a spinal arachnoid cyst that goes from T2-T8. I also have Spina Bifida and use a wheelchair for mobility. I had surgery to decompress the arachnoid cyst about 1 month ago. Before my surgery I had terrible symptoms like burning pain in my lumber area, pain and pins and needles down my left leg which I don't normally have much feeling in, my bladder and bowels did not work at all. I intermittantly catheterise which meant that I contstantly had a UTI, Its not like I had many accidents (except when I had the UTI's) but I just had to go much more often - every 2 hrs instead of the usual 4. I am still in a lot of pain after the surgery with pain still in my lumber area and down my leg but my bladder and bowel have improved 100%. I get dizzy and have terrible balance still and I fall a lot but I am hoping this will all improve with time. I also drive and I am hoping I will be able to get back to doing so soon. Another problem that I have experienced after the surgery is that I contracted a very painful staph infection. I think it has come back for the 2nd time so I will be going to see my GP this afternoon to see if I need to get back on antibiotics. I live in Sydney, Australia and am wondering if there is anyone else in this forum who has an arachnoid cyst and spina bifida. If so, I would love to speak to you about how you are dealing with this. It is very hard to be alone in this.

Tanson Tanson
31-35
2 Responses Feb 8, 2009

hi tanson. my name is natalie and i was also born with spina bifida L-5. i recently had a myelogram and came out with spasms. i use a wheelchair but still stand to transfer but every time i get up now, i leak. my back has started to hurt from the spasms, and i can't sleep at night cause my legs never stop twitching. could this be Arachnoiditis? how did you get it? any support would be helpful as i'm slowly deteriorating. i used to be independent, now i'm not.

Thank you Lovesew1. That is very kind :).