Hello all

First post by a newbie.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks.

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.