OPTIONS FOR REMOVAL OF FLUID POCKET FOLLOWING PITUATORY SURGERY

[sorehead1959]

HAVE HAD 4  SURGERIES  FOR REMOVAL OF PITUATORY TUMOUR FOLLOWING 3 CSF LEAKS,  LAST ONE 5 WEEKS AGO.   STILL HAVE SEVERE HEADACHES AND POCKET OF FLUID IN SURGICAL AREA WHICH HAS NOT DISPERSED.  MAY HAVE TO HAVE FURTHER SURGERY TO DISABLE PREVIOUSLY INSTALLED SHUNT SO ... [More] FLUID CAN DISPERSE.  WHAT WILL THIS INVOLVE?  WHAT ARE MY OPTIONS? [Less]

[ldhk7737]

Try to see Dr. Jeffrey Bruce at NY-Presbyterian (Columbia University) in New York. He's a fantastic Neurosurgeon specialized in  Pituitary Tumors - that's all he does and they also do studies over there, which I participate as well.  I had surgery with him and not a single problem. He's been to Dr. Oz twice. At least try to contact him if you live far from NY. You can Google him. It's pretty easy to find. Good luck! God bless.

[horselip]

Hey-
Tell me more about your last CSF leak surgery.

I am a pituitary patient and cranial CSF leaker too. I had Transphenoidal Pituitary (Jan 2006) surgery to remove a Rathke's cleft cyst that imploded. Then the headaches began, sigh.

Then I had another surgery (1 1/2 years ago) where several spots were patched in my skull base. The surgeon also did a lot of work in my sinuses. I've still got a leak.

Surgery #3 is coming up in July. My surgeons are talking about putting in a shunt as there are several areas in my skull base that are thin and so they want to try and keep the pressure down to prevent yet another leak from sprouting.

So that is my own experience. I'm no expert and just beginning to learn about shunts as this is all new to me :(

If anything I just wanted to let you know that you are not alone. I don't really know enough myself to advise on your options. But I would think that a malfunctioning shunt is not a good thing to have.

What is helping me right now is fairly aggressive pain management and laying flat on my back with my legs elevated in the afternoon. This really reduces my head pain. It is impossible to live life lying down and I am such a wuss when it comes to pain. uck

sending you a virtual hug!
Horselip

[rumpled]

Alas, some people's anatomies make them more prone to the leaks. So if you have a disorder called psuedotumor cerebri in conjunction with the pit tumors, and/or anatomy prone to leaks (there is someone else here too), then you tend to have a lot of leaks.

I assume they have tried the medications, the positional thing where you have to lay flat (going crazy), and have you drank tons and tons of coffee? Do you feel better in certain positions than others?

The shunt is a pretty standard operation - they put them in kids to adults as needed to make sure the CSF is at the proper pressure. Perhaps your shunt has clogged so that is why they need to disable it. Are they going to install another one?

Unless they can determine the underlying issue and resolve them if they can be (ie - sometimes the leaks are caused ironically by be overweight) you may have to have multiple surgeries until one takes.

Have you consulted another opinion?