Nicolette, how are you doing after the spinal surgery? I may need to have that done as patching has not worked so far. I’m curious if I’ll ever return to exercising after having it done.

Holly, I have a diagnosed CSF leak and my headaches are positional. If I lay flat I never get a headache or tightness in the neck. Once I'm upright it takes about an hour or two and my neck gets really tight then around hour 3 the headache starts in. If I lay back down it clears up in 1/2 hour or so. I had a brain MRI (with no contrast) and that showed normal. The leak was found when a CT myelogram was performed. This test will usually detect leaks in the spine. If it's suspected the leak is in the head sometimes a cisternogram can detect that. I've read that if you have drainage from the ears or nose a cisternogram with pledgets can be a useful test. I've never had that test but read it's uncomfortable, particularly the pledgets. I've had two myelogram and another lumber puncture and I didn't find that to be too bad. My imagination of the procedures was far worst then the actual procedures. This is just my understanding from what I’ve read so take it for what it’s worth.

My surgery was successful but recovering has been tough. I've been in physical therapy for 7 months now and with the help of Amitriptyline my pain is finally backing off. I'm still having headaches every day but They are way better. I had a very large fluid collection built up from ten years of it being misdiagnosed. The worst part of everything was the myelogram and cisternogram. The surgery was easy compared to that but I was very heavily dosed on pain meds. My advice is start physical therapy as soon as possible. I waited a couple months and think I set myself back by doing that.