still in utter hell. csf leak not located.

After week of heavy lifting, digging, carrying, bending, when stood up one morning: severe pressure pain thru R ear, followed by extreme dizziness, spine swaying and straining and weak, legs weak, hard to stand or walk , pressure in both sides and lower back of head and behind neck and nose. TWO years now. Finally to Boston Brigham and Women's, 3 hrs each way. Had thoracic area myelograms, no leak seen. Had MRIs. Had blind thoracic and lumbar blood patches at different times; possibly slight help: less feel of spine falling backward when standing. EVERYONE PLEASE name your hospitals and MDs who help, or don't help with CSF leak. I remain trapped alone in my house because I can only stand for short time or about 20' at a time. All symptoms disappear lying down at night and appear quickly when standing again: first I feel the weird pressure in both sides of the head, then all of them. If I TIP my head up, or down: all symptoms magnified: spine and legs very weak, dizziness severe. I saw Dr Shuhan Zhu at Brigham and Women's, neurol. Interventional radiologists did the myelograms and blind patches. Dr Zhu thought it must be venous fistula. Now seems over her head and wants me to go to Duke etc. I think it would be smarter to first have MDs/neurosurgs? at these big Boston hospitals rule out any other possible spinal cord compression like cervical myelopathy, since symptoms include head and down entire spine. Apparently MRIs don't show typical signs of cervical myelopathy, but all scans are done lying flat, not standing up when symptoms are severe. Before I must try to go to Duke, change insurance, pay someone $1000+ to stay in my house and take care of my canaries, figure out how to stand/walk in airports etc. I'm utterly overcome, still. What does anyone think? You may remember me from earlier. Live in Maine.