LP Shunt still overdraining after 30 revisions in 3 years

[JulieHolland]

I was diagnosed with pseudotumor cerebri 3 1/2 years ago. After trying all of the meds and still losing vision, it was determined I needed an LP Shunt to save my vision and relieve my headaches. The first neurosurgeon I went to placed an LP Shunt and for a month after, I complained that something still wasn't right. He told me I just had to adjust to the new pressure. Finally after a month, he ordered an LP under fluoro. and my pressure was 31 with the shunt. It was found out that the needle had come out of my spine, therefore, my pressure was building up again. My vision was severe enough I was sent to an Opthalmologist who performed Optic Nerve Fenestration on my rt eye and when he made the incision, fluid hit him in the face. (this was after draining off some fluid in my LP).

My neurosurgeon refused to revise my shunt and wouldn't return my phone calls or my PCP phone calls, so my opthalmologist referred me to a Pediatric Neurosurgeon who treated a few PTC patients with shunts because of her knowledge of shunts.By the time I saw my new neurosurgeon, I had to have the ONF on my left eye as well. My first appt with the new neurosurgeon was Nov 05 and since then I have had 30 revisions. *knock on wood* I have never had an infection, but everything else that could go wrong has.

I have had my tubing coiled on my side, out of my abdomen, more times than I can remember. I have had a valve bust and leak CSF on my side until it finally built up enough pressure it came out an incision. I have had every programmable shunt possible, I have had a horizonal/vertical valve once before, and that is what I have now. I had an abdominal wall hernia which entangled my bowel and tubing. You name it, it has happened.

My vision is stable but I have lost all but 5%-10% of my peripheral vision. I am now dealing with overdraining. When my shunt is working and connected properly, I have always had problems with overdraining. It was found out 2 months ago, the tubing had disconnected from the needle in my spine causing the CSF to free-flow for 2 weeks. Although it was only 2 weeks, it was horrible pain and the pain has returned. I don't have any fluid pockets where CSF could be collecting and I do get relief when I lay down, so I know it is overdraining or disconnected. I do have an appt. Tues with my neurosurgeon but this is a constant problem.

I know that weight loss can be beneficial and I have gone from 254 to 229 in the last 2 months, but it is hard to be active or exercise when you can't stand to be up and eating right only helps so much. My parents are frustrated that I haven't seen another neurosurgeon, but the surgeon I have, has been willing to cancel her own vacation to be there for me. She hasn't given up but we are running out of solutions. She will not place a VP shunt due to slit ventricles. Any suggestion would be great! Do you think another neurosurgeon would have other ideas that would help me? Do you think it is time for me to move on? I am just scared to find another neurosurgeon who will give up on me like the first one did.

It is also to the point that I am nausea and vomit on occasion and not even an injection of pain medicine from my PCP or local ER relieves the pain (my neurosurgeon is 3 hrs away). I am just frustrated and don't know where else to turn or what to do.

Thanks in advance!

[crystalhanzelka]

You should consider a VP shunt.  I have read these have a more reliable rate of success that LP shunts.  The NS here in Texas will not even consider an LP shunt.