Arachnoiditis

[looby24]

Hello my daughter has just been diagnosed with this condition. I have done a search on this forum and found little information/posts. I guess it's understandable as it's classed as a rare condition. I just wondered if anyone can offer any suggestions for doctors/ centres that can offer help and treatment. The orthopedic surgeons who diagnosed her condition following an MRI have not suggested any treatment. Just another MRI in six months.

Information on the internet sounds all very scary.

Any information gratefully received

[Batty1]

Sorry your daughter is having this problem and your right information on the internet is scary but it’s still important to read everything you can from reputable sources … I just read 90% of this is from spinal surgery, did you daughter have spinal surgery?

[looby24 in reply to Batty1]

Hello and thank you very much for replying. Yes she had emergency spinal surgery last year. It was a complicated procedure to address some spinal abscesses which scarily developed into sepsis. A nighmare but she pulled through. Not to mention that she was pregnant during all this and had a terrible time before and after with major pain for which she could not take full pain meds because of the pregnancy. Baby was fine, thankfully and we thought this nighmare was all behind us. But now some pretty persistent back pain, which we thought might be related to looking after the little one, actually turns out to be caused by various things going on in her spine, including scarring in a few areas, fluid build up and nerves clumping. She also had a spinal injection during childbirth, which she really did not want. I do try to stick to only reputable sources of information on in the internet and I kind of wish I had never read some of the information about arachnoiditis. I really hope that it does not worsen beyond the pain she experiences just now. We also would like a second opinion, hoping for a change of diagnosis.

The little I found also highlights injuries (like traffic accident or sport ones) as possible causes , spinal injections, etc. I understand it's a pretty rare condition.

I really need to find out what can be done to help and stop any progression if possible.

I hope to find some help on this great forum !