hi Tammy.
my OP was 23. my 5 yr old son's OP was 23. he has autism.
so you were not higher than 23 and they shunted you? I would never think that they would shunt us at that pressure, but it must have been for your vision loss.

I would do a search on this topic and also on ihaveiih.com because I've seen threads that discuss this issue before. people's OPs are all over the place. I get the sense that brain fog is worse at the more borderline pressures. that is my worst symptom. but there is a lot of variation and I've heard of others who seem to have "normal" ICPs way down where your normal seems to be.

My very first diagnosing pressure was 43.
Two days later it was 31.
2 days after that, 28.

The week I was diagnosed I had 3 LPs in a row.
It was awfulface.

Nine years out of your shunt? That's AMAZING.

Yes I do know that OP's are all over the place. I do believe that one person's tolerable pressure is not another person's. it is a varying thing from person to person. I have been run through the gamut with this disease, and in turn have armed myself with a lot of medical knowledge and research, with the aid of a few doctors. I was just wondering about your actual OP numbers to add to my research. In doing this research, we have come across a great deal of problems with the shunting procedures that are done on PTCer's. The biggest problem is shunt failure, of which ventricular shunting is the worst for failure. Our ventricles are normal sized, which means they are small. If you place a shunt in these ventricles, then as the spinal fluid is drained off, it collapses the ventricle on the tubing, thus clogging the tubing so that it cannot drain any more fluid. So then you get to go back into surgery to have that portion of your shunt replaced. Some people's ventricular shunts last longer than others, for me, mine were being replaced on average every 4 months. So my local NS said that there was no way that we could continue to do this without having some serious complications eventually. So he sent me out of state to a university hospital, which is a teaching hospital, so they would have newer treatments available. This is where I got my cisternal shunt placed all those years ago. You see, lumbar shunts fail because they are at the bottom of the spinal canal, and gravity causes them to overdrain. Cisternal shunts are placed in the cisterna magnum space, in the neck where the base of the skull meets the top of the spinal column. This space is large, and doesn't collapse like the ventricles do. And it is at the top of the spinal column, so it doesn't over drain. This is the ONLY type of shunt that should be used for PTC! I have been advocating cisternal shunting for quite a few years now, and a lot of people have been able to find Neurosurgeons who know about, and place cisternal shunts. I am trying to prevent PTCer's from having to go through all of the shunt replacements that come with lumbar and ventricular shunting. There is absolutely no need for them to put us through a lifetime of replacements, when a cisternal shunt could be the last shunt you will ever need. So for those of you looking a shunting procedure as your treatment, do your research before you see your NS! And if your NS doesn't do cisternal shunting, then find one who does, there are plenty of them out there!

I had an my first LP a week ago today and my opening pressure was 53. Since I was so high my doc has given my 6 month to start getting better and then we start the surgery talk which scares me.

http://www.ihaveiih.com/t458-peter-was-wondering-what-others-icp-readings-are

Mine was not tested when I was the sickest. A neuro put me on Verpamil and I had some improvement and after 4 months on meds, my op was 26 & 32 before shunt surgery. A few months after shunt surgery it was 17, but my headaches had returned. I then had a stent placed in my right venous sinus. I haven't had it checked again, but would like to. I have a feeling my tolerance is lower than the textbook standard.

maybe the reason the ventricles collapse is because that's NOT WHERE THE PRESSURE IS HIGH. the pressure is high in the space outside the brain. just like all the other treatments for IIH, we get treatments that were designed for a different purpose and jerry rigged for us but it just doesn't fit. the VP shunt works for people with hydrocephalus, which we don't have. thank you for the info on the cisternal shunt; that does seem to make more sense.

My opening pressure after my first (and so far, only) LP was 36. I have been on 1000 - 1500 mg of Diamox for almost a year. I have headaches at least 7 out of 10 days. I am currently on Medrol as well to try to knock out a headache I have had for almost 2 weeks. My doc has not even mentioned a shunt.

Mine was 20! Yet, my optic nerves were so swollen I could barely move my eyes from side to side and I was seeing flashing lights all day everyday! I didn't have any vision loss but a few weeks before my LP I started waking up with tunnel vision. And I had headaches everyday. I couldn't believe it when they said how low it was... I kept wondering how anyone could have a higher op and function! That was a year ago and I haven't had an LP since then.

My first spinal tap was early September opening pressure was 45. Second was 16 October was somewhere around 22. My recovery took longer after the second one even though the opening pressure wasn't as high. I do not feel good after my spinal taps and need 2-3 weeks recovery. I get mega low pressure pain and cant get up over a 45 degree angle, cough, sneeze, or laugh without excrutiating pain. Then I go less low pressure headache and in moves the high pressure pain at the same time. I don't get a moment of pain free. EEEHHH!!!
Val

I was told my opening pressure was 42.