I had increased pressure due to Hydrocephalus last year. They found a tumor in my brain that was the cause of this. I had the tumor removed. I was told that during surgery there was a chance that my surgeon may have to put in a shunt to control the future pressure. The surgery went great and he didn't have to put in the shunt. My pressure decreased on its own (probably from the surgery itself) and I recovered quickly. I felt great and resumed my life normally.

4 months after my surgery I started feeling funny again. I got back in touch with my surgeon and let him know that I wasn't feeling right again. It continued to get worse and he finally had me come in and have a Lumbar Puncture done. My result from the puncture was a 28 which is pretty high from what I understand. He said that I needed the shunt after all.

A couple weeks later I had a Codman Hakim Programmable Valve / Shunt put in. The valve was set to a 12 for my surgery. (So I went from a 28 to 12) After surgery I never really felt better. I came back in for my 2 week follow up to have the stitches removed and he lowered the setting down to an 11. I almost immediately felt worse. I got a couple of terrible headaches the next couple of days. It was so bad that I had to make him see me again ASAP. I went back in a couple of days later and he now raised the setting to a 15.

He now believes that my body may have adapted to a higher pressure setting and that we set the valve too low. So unfortunately I guess it takes quite some time for the body to produce CSF and he said it will take a while for my pressure to go back up. So now we are in the trail and error phase where we will keep raising it every month until it gets better or worse.

I guess the bottom line is that I have yet to feel better and I'm wondering if anyone has had experiences with a programmable valve and how many adjustments did you have? I have not had any headaches since he raised the setting but I still don't feel better either. Exactly how sensitive is each setting? Can one setting make all the difference? Please help.....Any feedback is greatly appreciated

- MARK-