Just Been Diagnosed With 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
2 Responses Feb 8, 2009

I had a cyst and a number of the problems you mention when I was dealing with tethered cord. I would guess your doctors ruled this out as a concern? The cyst was a result of the tethering of the cord. Once untethered my systoms also improved. If you would ever like to talk I am Tom at tla54956@aol.com Age 54 married with kids 25 and 16 I dealt with my leg pain with Neurton (sp) it worked better than pain killers.

Hi, I have just recently been diagnosed with Arachnoiditis. I have had such bad pain in my upper leg and groin areas. It has been getting worse to the place where I can't sit very long or stand very long. I had a mylogram about a month ago and they have verified this diagnosia which is a surprise to my neurolgist. She says it is very rare. She has double my pain medications. I am on Fentanyl 100 Microgram patches every 48 hours and dylaudid 50 mg 5 times a day and finally it has began to help some. I have been in bed, flat, with the heating pad for weeks with no let up. I am so hoping to find someone that can share this with me. They say that the 3 back surgeries that I have had in my lifetime has caused this probably. I see you are a lot younger.