Quote:
Originally Posted by jmilphoto
Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!
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I too have been suffering from this for many years, just in the past four months it became very chronic. Nothing but waiting for tests specialists and talking to deaf ears!!!! I went to er at a trauma center and viola! they knew just from my symptoms and did a blood patch!!!! Although it did not last but one day I have shown some improvement since but am stii symptomatic this is very rare and totally misunderstood illness and is very hard to endure, people are clueless!!!!!! most of specialists that know are to far away to get to so far none that i know of in my area i am dealing the best anyone can hope nuero app will get me another blood patch if he even hears me this time seems he also knows nothing!!!!!! hang in there these sites are popping up more and more we just need to keep talking and posting till everyone knows about this illness that has debilitated so many people. thanks for listening feel free tp write, call, text, email and send to others dealing with this would love to exchange stories with more people everyone counts! and i want to hear as much info as i possibly can .