Quote:
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.
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Ya, AUD here. New Mexico USA.
I have been leaking for 10 months since the epidural in child birth. I have endured 5 blood patches. My primary doesn't even know what a dural repair is and thinks a CSF leak is "impossible". The doc that did my myleogram said he saw a leak in the room and that I was very low on fluid but his report said the opposite. A neurosurgeon in Lubbock TX viewed the disk and said he saw 2 leaks and a possible 3rd but that he didn't work on leaks, his report was "patient says she has orthostatic headaches, possible CSF leak". I just saw another Neurosurgeon in Dallas TX that I paid for myself and he lied about looking at the disk, gave me a COMPLETELY FALSE report stating that he checked me up and down(he never touched me), said my eyes were reactive to light(not a flashlight in the room), pulled a blood pressure and pulse out of the air, said I was weepy, too well groomed to be suffering any real problems, that my pain is a 5 on a scale of 1-10(which I was never asked) and wrote that my pain at times interferes with my house work( a knock on my being a homemaker I guess). The patient advocates on the base who I asked for help getting my doc to refer me to neuros told me I was too upset and asked "what was really going on?" insinuating that I'm faking headaches, vomiting, blackouts, interscalpular pain, kidney pain, heart palpitations, neck pain and lumbar pain because my husband is deployed. My mother-in-law keeps telling me its just migraines....I think CSF leak is a bad word in the medical field. You are not the only one who feels unbelievable. Good luck to you, AUD