Spinal leak?
 

I had encephalitis last year and have yet to completely recover. Since then I have had 5 spinal taps 8 MRIs, 4 CT scans, along with other numerous test. Everything is coming up normal and the doctors have all but given up on me. My symptoms are fatigue, weakness in arms and legs, headaches that are better when I'm laying down, draining in my ear, eyes shaking (seizure like but can't physically see it and doesn't show up on EEGs),stiffness in the neck, nausea, and pain when pressure is applied to lower back. I believe that is everything I forget sometimes cause there is so much. But the my symptoms come and go, one second I'll be fine the next I can't move from the pain. There are days when nothing's wrong at all. The doctors think I'm faking to get attention but I'm not, I also got depression from the encephalitis so they like to blame the depression but I know it's not that either. Reading online it sounds like a spinal leak and I was wondering if anybody had any other ideas. I'm planning to head off to college fall of 2013 and would love to have my life back to normal by then. If anybody can help I would really appreciate it.

Hi Katie, So sorry you are going thru all this! My husband had a psuedomenengicele (probably did not spell that right but is a spinal leak) His was caused from a myelogram.

He went for about 8 mos after the myelogram with an out of this world headache. His orthopedic dr had no idea what was wrong with him. His headaches were so bad he would just spin against the wall crying in pain. He had most of the symptoms you have described except for the draining in the ear. He didn't find out what it was until his dr sent him to New Orleans to see a Dr Whitecloud. He took an x-ray and immediately recognized the symptoms and sent us back to our dr suggesting they do an MRI (but a certain kind of MRI with a certain kind of imaging or something to that nature--This was about 25 yrs ago) His Dr ordered the MRI and confirmed what the other dr saw on the x-ray. His dr said he was sure glad they found out because he was beginning to think my husband was a hypochondriac and was imagining the pain!! He did apologize though.

Anyway they had to go back in and fix that. I sure hope that is not the problem with you but I would ask about it or maybe even get a second opinion. Were any of your MRI's with contrast? Maybe they wouldn't pick it up unless they were maybe specifically looking for it. I don't know. Hoping they will find out soon for your sake. I know what my husband went thru. It was terrible. Good luck and God bless you with relief.

Sheer stupidity even if it was that long ago. I had a spinal leak when I got up the morning after having a pre-op myelogram. I followed orders to the T as I had numerous myelos and knew the potential. I called the neuros office, told them what was going on and to have a room ready for me in 30 minutes. The office manager told me to wait until my three oclock appt. at which time I advised her to have a room waiting in 30 minutes or the entire (huge) waiting room which was always SRO would know that I had a spinal leak due to THEIR myelogram. The room was ready. I saw the surgeon immediately and it took two patches to clear it up. I can't imagine going on that way for months on end. I would have ripped my head off and any doctor who looked the wrong way at me. Best wishes.