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-

One notch (1cm/10mm) can be a lot, just right or not enough - and we've seen all three with my child, but most people can handle more than 1cm changes. My child had two separate adjustments of one cm last year and those were just right or even slightly too much (but slightly too much was better than previous setting and it did smooth out). Because she's been so sensitive, we tend to adjust by one setting. But in the last month she's gone up 4cm and it only slightly helps. Staying hydrated is really important! Note being somewhat/very constipated can also affect draining/pressures. Some people get other blockages at the distal end of the tubing, I'm not personally familiar with those.

If everything else is working, how you generally feel in what positions can guide what adjustments you might need. If lying down help you feel better or you are worse at the end of the day, your setting may need to go up. If being upright helps you feel better, the setting may need to be adjusted down.

A shunt tap can be done to get a ballpark idea of the pressure but it is putting a needle into your system so they don't like to do that. But they already did same for lumbar puncture so they are unlikely to do another for a while. A shuntogram (flow study) might show if things are flowing very slowly but the test is influenced by the skill of the person doing it.

What setting was she programmed to during surgery? What settings was it changed to? And what were her symptoms after the changes. I feel most comfortable when I'm laying down.

Well, last revision was nearly three years ago. The revision gave her some extra room to go up on a programmable valve by putting it in series with a low flow valve (anti siphon device wasn't enough). She was set to equivalent of 18cm or 17cm at that time. She's now maybe equivalent to 28cm so she's gone up a lot, there are just a few notches left before she hits the top setting. If you need 28cm, your codman runs out at 20cm so they will have to revise you with an alternate system that could include a codman with another valve or something else. Strata goes to ~25cm ish - bit different, my kid did poorly on that valve because at the time (7 years ago) she needed 3cm and it didn't go low enough. Don't recall osv range or any other common valves. 28cm is pretty high so it requires they really consider what you'll need.

Which reminds me of the other thing to pay attention to. If you are siphoning, lying down will help. If you don't have an antisiphon device, you may need one. And there are people who may need something more but valves in series which my child likes are probably not comfy for a lot of people, i.e. ymmv.

So when the codman plus asd stopped being enough, we couldn't find a good setting (we tried many settings). Generally when the system is good one, we've seen the classic over draining symptoms and raising the setting was enough for a while. Over draining eventually returns and we go up again, wash rinse repeat. My kid has had slit ventricles for years (except in May - her ventricles were not slit on an MRI, were small again two weeks later, that was just weird) and she has always had low compliance. Slit ventricles don't really happen with people shunted in adulthood.

Yeah my Codman has the anti siphon feature. And 20cm is the highest setting it goes to. I just had another appointment with my neurosurgeon this past week. Again he seems to think that my body may need a higher pressure.

I only started having symptoms for about 2 months when my lumbar puncture was done. So he thinks my pressure might need to be on the high end. He just adjusted the valve to a 16 now. He only wants to go a notch at a time but says I may very well need it fully opened at 20.

He says everyone builds CSF / pressure at different rates. Any idea on how long it takes to go up one notch? Even though I'm set at 16 I may still be low until the pressure builds up.

I do feel like I'm getting a little better but it's happening so slow so it's hard to tell. But we are pretty sure at this point that we are adjusting in the right direction now. I have had any headaches in weeks.

So again, any idea on how fast the body would produce enough CSF to raise 1 setting. I'm 32 years old. Pretty healthy other than this.

If you are over draining and need a higher setting, you are not going to ever make enough csf to raise the pressure (visualize over draining, you can't catch up without slowing the draining, aka raising the opening pressure on the valve!!). A person makes about the same amount of csf daily (avg adult makes bit over 500ml/day, completely replaces csf in use more than 3x a day). Yes, people can take a while to adjust to new settings but that's more a factor of compliance, my daughter takes longer than many but if the setting is too high, we figure that out quickly. Your surgeon is being careful but maybe too careful given the details, two notches should be ok or less time between adjustments. It sounds like you need to ask what the plan is if your right setting is anywhere above 20cm. My daughter's pressure issues are probably not the same situation as yours as she is still a growing child shunted as a baby and did not have any obstructions in her ventricles. Kids' pressures change as they grow and most don't need lots of adjustments, those who do need adjustments usually stabilize by 8-12yo.