I was diagnosed recently only because I went to the eye doctor. My eyes haven't been dilated in years so they decided to check up on them. It was actually the doctor who deals with contact lenses who found the problem. He said that my optic nerves were extremely swollen and that it could meant that a brain tumor is pushing up on them. He wanted to schedule me for an emergency MRI or CT scan of my head. But it was already 5:00 and offices were already closing for the day. This was a Friday too. So all weekend I had the words in my head of "brain tumor" and "possibly going blind". Monday finally came and I had an MRI early that morning. I also had my first appointment with my neuro doctor that afternoon. He explained to me a little bit about my scan and there were no tumors or anything. I didn't expect it, but he wanted to do a spinal tap to test the pressure in my head right there in the office. This was the first of many to come.

The first tap went smoothly and I was only uncomfortable for a couple seconds. The pressure reading was over double the normal pressure number. My second tap was in a different office at a different part of town and my doctor had a student or trainee with him. I think that he was trying to talk to much and explain to her what he was doing and it ended up not being where it needed to go. After fishing around for a while with me having shooting pains from my ear to my right knee, he finally got a reading and the pressure was even higher than the first tap. This made no sense because I started the medication diamox and was expecting it to be better. He double my medication intake and I wasn't seen again for three more weeks.

The next visit, was unbelievably painful. He numbed the area three different times and went in three different times attempted to find where he needed to be. I couldn't take it anymore. I have a pretty tolerance for pain but this was just crazy. Finally he said that he just couldn't get a reading for the day and I basically went through all that for nothing. To him though, my eyes looked better. He wanted me to meet with an eye doctor that day to confirm with their equipment that my nerves are improving. After 4 hours at another doctors office, the eye doctor that my neuro doctor knows, said that to him they look borderline between healthy and swollen. At my first visit, they were way off the chart and swollen. This was good news.

Eventually I have to go back and try for another spinal tap. Just thinking of it makes me quiver. I guess he has to confirm that the pressure is down. The last thing I want is to loose my vision.

The symptoms I've had seem to be improving lately. I do have, however, many side effects from the drug. My legs will go numb at any given moment and my face and mouth will feel droopy. My eyes will feel like fluttering behind my lids and my fingertips will loose all feeling for moments at a time. The headaches that I've had for years seem to not be as bad and less frequent. I'm working on loosing weight. When I was diagnosed I was 5'5'' and 180. Currently I'm about 165. In January of this past year I topped out at 200. I also had the nausea and the dizzy spells. I pretty much had to just lay down with a wash cloth over my eyes so I wouldn't see the room moving. I guess I'm just curious about what a shunt is. and if all of you are experiencing the side effects from diamox. I don't want to have to do anymore spinal taps. When the first was so easy, I thought I could handle it but after the last two I'm not sure.