Lumbar puncture, CSF leak questions
 

I know internet can't diagnose, but would really appreciate some feedback here. Anyone had a CSF leak? Are the symptoms I describe consistent? Any suggestions on what I could do?

I had LP few years ago, normal. After the LP, had chronic low back pain, swelling, feeling like I'd been cut in half, feeling like something was creepy-crawling around in my spine for a few months, couldn't squat or bend for several months without both legs going numb, loud popping sounds in the area of LP when I bent, stiffness of the area, a numb toe, and within 6 months started stiffness of upper back especially thoracic area. Absolutely no headaches, and had absolutely no headache even with the LP which everyone was saying I would get. The LP was traumatic with like 10 pokes and with a lot of blood since apparently I have calcification and bone spurs. Most of this went away after about a year, but I have chronic mild low back pain and mild/annoying hip pain that I know is nerve related.

Fast forward about 2 yrs, suspected paraneoplastic AE, with lots of neurological symptoms, tumor was benign and removed. No LP or antibody test, so never confirmed. Bedridden for 3-4 months during this time. Got a lot better after surgery. Got so better that I start exercising and getting really active this year - lots of back exercises, too.

Then it comes back.. I start getting stiffness of thoracic and low back, stiffness of the flank, low back and hip pain worse, but now also difficulty with speech and concentration, mood issues, and sensitive to light and sound which were some of the symptoms I was getting with the suspected AE. Currently no headaches.

Hospital wants to do LP to test for AE, but I have this really bad gut feeling about the problems with previous LP and wonder if this could instead be a CSF leak. At the same time, if problems are from AE and I'm not treated that could end up badly.

I have no idea what to do and don't want to make things worse with the LP. I already mentioned the symptoms after the last LP and it was dismissed.