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]
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.
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
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.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.