Discouraging news

Here I am, writing a second time in one day.

Dr Heffez called this afternoon after studying my ct scan. The news is sobering to us. My brain ventricles are "tiny" he said. He has decided that with them being so small he doesn't feel that the shunt tubing can be placed in any other position that will be better. His comment was that the ventricle it is currently in is so small that if the tube was taken out it would be impossible to get it back in there and he feels that other positions would result in the same problems. He also decided that it is not worth adjusting the shunt to a more open position since the ventricles are so small and wouldn't drain any more then they are already. That is a problem because my pressure is still too high. So we are back to square one. We know what the problem is but can't seem to find a cure.

At this point the only option that is not "extremely difficult" is to go back on the Diamox that I was on in November and had so many problems with. Unfortunately when I previously took it I was very nauseated and it didn't help the headache at all. There is one other drug he mentioned that I could take--Topamax--that I took previously as well. It made me so disoriented and dizzy that I walked into walls and drove over curbs so at this point it probably isn't an option. I have taken countless meds over the last 2.5 years and there are only 3 that I really struggled with and of course these are two of the three.

Dr Heffez is an extraordinary doctor but specializes in Chiari, which I also have. So I am wondering if there are any doctors out there that specialize in the Pseudotumor Cerebri--which seems to be much more rare--and have additional ideas. I haven't found any yet. As I checked into the doc in Omaha it appears that he specializes in pediatrics and may not be the best choice but I'm not sure yet. I will keep looking.