LP Shunt Malfunction

[Neon8RN]

I currently have an LP shunt due to Pseudotumor Cerebri/Intracranial Hypertension. It was first placed in April 2008,, with a revision done in December 2008 to add a programmable valve. Things have been going great until the last 3-4 weeks. I have started getting high pressure headaches again, like I did before the shunt was placed. I ended up in the ER, had shunt xrays taken twice, and eventually a spinal tap. My pressure was indeed elevated (in the 30s), so they took some of the extra fluid off. Then they programmed my shunt valve to let out extra fluid than it had previously been doing. I went home, and about 1 1/2 weeks later, I started to get the high pressure feeling back again. I went into the neurosurgeon's office and they programmed my valve down one more level, to let even more fluid out. Now, my shunt is programmed at the lowest level, and there is no more turning down that can be done.

I always get copies of my tests and medical reports after my visits to have for my personal records. Upon reading the reports of my shunt xrays from y ER visit, a kink was noticed in my shunt tubing near the valve. Noone ever said anything to me about this. They saw the kink in the first shunt xray, and took another shunt xray 4 hours later to verify that it was a kink...and it was. Now, I would think that this kink could be the cause of my problems. What do you think? If there is a kink, do I definitely need surgery to fix it?

Any similar experiences, advice, or comments is appreciated.

[selmaS]

Hi...sorry we have not been on this thread since Oct.....but by ur comment it has brought it back to the first page.

May I ask is ur dr a chiari  specialist?...were u checked for other possible issues...like a syrinx, chiari, ....sometimes the IIH has another root cause....it is also believed that weight can be a reason...but there r many thin people with this condition to say that is not a constant rule.

If u r having low pressure HA's and the shunt is set to only allow a slow release of CSF...could it be u do not need the shunt?...I am as confused as u...and would suggest u get another opinion on the shunt.

I am happy to have u as part of our family here, but so sorry the reason u had to seek us out.

"selma"

[TiredofPain352]

Well, I'm not sure if you all are still reading or checking up on this. But I got a LP shunt for the same thing in Nov 09. I've have 2 surgeries to fix the catheter that releases the CSF in my tummy. Currently I have been having low pressure headaches instead of high pressure! This has been going on since December. Now almost April 2010. My doctors just don't know what to do. My shunt is set at the highest setting to release the least amount of spinal fluid. I'm not sure what to do. My doctor told me to apply for disability (I'm 23). My headaches get so bad, I have to lay completely flat and when I get up, I'm throwing up cause the pain is so bad. My doctors don't know why my headaches are so bad. My vision keeps getting worse in my right eye. Tomorrow 3-31-10 I'm getting another field vision test to see how much more vision I've lost in my right eye. in November I had lost a quarter vision. Ah, I don't know what to do.

[selmaS]

I am glad u had such a long period in which u were feeling well.....but, we r here even if u r feeling well : )

it helps the newbies for those that went thru surgery and it helps those that went thru to understand the different stages we will face after surgery....I am noticing that symptoms I thought were gone can resurface, not as intense or as long, but return none the less.

I am praying u r just going thru one of the healing stages and that it will pass.....

"selma"

[Neon8RN]

Thanks Selma! I had been doing so well, and thus I didn't need to be on the forum. I am really hoping I don't need another surgery, but I am sensing I probably will.

[selmaS]

HI...haven't seen u on the forum for a while..so sorry u r having this problem.

It seems reasonable that the kink could be the problem...but I am not experienced in this area to suggest if this is or isn't the main issue u r having. But, I would deff ask ur dr about it.....I also am not sure, but it does sound like a surgery may be indicated to correct the kink.

I hope someone else that might have this same experience adds so helpful info for u.

Good luck and please post an update on ur progress.

"selma"