Quote:
Originally Posted by lisalailey
I have been suffering with a spinal leak (headaches everyday for about a year and half. Had 1 blood patch done which has not worked, trying to keep my headaches under control but finding it hard with 2 children & work. If anyone has any info on low pressure headaches or help with pain releif that would be good, regularly taking 6-8 paracetamol a day which is now taking its toll on my stomach, possibly going for another blood patch soon but very nervous, I have a vascular malformation which affects the right side of my back, had bit of a nasty operation a couple of years ago on this.
again this is something which few doctors seem to know much about. Any help or advise would be great.
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Welcome to NT!
It seems like CSF leaks are rare and very few docs really know how to deal with them. They have treated yours the same as if it were due to a lumbar puncture -is that how it happened? If not, they probably need to figure out where the leak is in order to patch it.
In that case if I were you, I'd skip the general neuros and get to a major clinic - like Mayo. I'd want all the experts available looking into this to get it resolved asap. You've suffered enough, and this needs to be fixed.
Meanwhile, what I was told after the lumbar puncture may help you with your low CSF. Drink plenty of caffiene and water, to help replace the spinal fluid. Lay down flat (I know you can't do that all day, but as much as possible). Avoid lifting and straining.
I'd also avoid aspirin and products that contain it - that can keep your body from clotting and closing that leak.
Good luck. I really hope you get some relief soon.
