I am hoping someone can help me. Back in 2004 I was diagnosed with IIH. I had a non programmable LP Shunt fitted in 2007. I was doing well until 2yrs ago. It started with severe eye pain & a sharp pain in my neck. Anyway, since then I have had terrible neck pain, lower back pain, eye pain with movement, fatigue, headache at back of head, numb face, numbness & tingling in arms. I’m on a lot of medication now to help with the pain. My neuro sent me for an MRI which has come back normal. I am wondering if my shunt is overdraining as it gets worse when sitting or standing & only relieved by lying down or Caffeine. Any advice would be great. Thanks

I think your conclusion sounds reasonable.  I have never had a shunt.  I would think that your NSG could assess the shunt for overdraining, or for failure.  if they tell you it's normal, I would consider getting a second opinion.

YES! I can tell you from experience because I also had a LP Shunt in the beginning and ended up with lower pressure symptoms at times because it was overdraining. It was so frustrating! I would see a surgeon that would tell me the shunt was overdraining, do a spinal tap to confirm, then send me for migraine treatment because my pressure was normal. After 3 revisions and even more years, I finally made it to the Cleveland Clinic. The surgeon there told me that they had stopped using spinal taps to confirm overdraining because your spinal fluid disperses when laying down and results were inaccurate. They did the original surgery based on my symptoms (after the usual MRI, CT Scan, and slew of tests to rule out other causes). It did help for awhile, but I eventually ended up with a VP Shunt and it seems to function much better.

I felt a little hungover in the mornings, but ok once I was up and moving. Unfortunately, the longer I sat, the worse my symptoms became. I basically guzzled Dr Pepper to get me through the afternoons at work (caffeine helps with low pressure symptoms if you don't drink it all the time) and laid down as soon as I got home. I also had to completely crash at least one day a week in order to continue working. I used hot pads on my spine, cold compresses on my eyes and necks..anything that would help relieve my symptoms.

If you are not getting anywhere, I would request an ICP Monitoring. It is unnerving because they do drill a hole in your skull and put a pressure gauge in your brain, BUT my pressure plummeted as soon as I sat up and dropped even further when I stood. I didn't really feel anything and recovery was quick. They didn't even make me do the full 24 hour period for monitoring in ICU because it was so obvious. They scheduled me for surgery right away and I haven't had any further issues (knock on wood!).

I also found benefits from massage, acupuncture, and reiki, if you can afford any integrative medicines..most of them aren't covered by insurance.

If you use the search icon on the home page for "low pressure", you'll see all the posts regarding this topic. Let us know if you have any further questions or concerns, and we'll do our best to help you through the process.

Take care,
Julie

Thank you so much for your replies. I am going to ask about the ICP monitoring as this has been going on far to long. My last MRI showed Chairi Malformation so maybe that is causing problems too. I will get there, lovely having nice people to talk to that fully understand. x

I'm glad we can help!

Btw, I also developed a Chiari Malformation after years of overdraining. Although most of the surgeons denied it, one finally confirmed that the pull of LP Shunt could have caused it over time. We're hoping it will reverse with VP Shunt, but no change at last review. I wasn't born with one and didn't develop until after several years of LP Shunt and overdraining, so not sure how else they would explain it.

Keep us posted on your progress, and take care!
Julie