Originally Posted by baby_diver

Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.