Shunt pressure after Brain tumor removal

18 months ago I had an Acoustic neuroma removed. During the operation I contracted a rare skin disease in my CSF. (I don't want to mention the infections name as There has only been less that a dozen reported world wide in the CSF and I don't want the Dr's to come across this post.)
I underwent over 12 operations, numerous Lumbar drains and I am on my 4th shunt. This shunt was specially modified the last time to try to accommodate the dead infection cells. My immune system is now in my brain and is causing all types of problems.
I have been on antibiotics for 16 months and see my Infectious Disease Dr tomorrow to hopefully be taken off of them.
I spent 5 days in NICU and recently got out. I had a lumbar puncture to test my CSF pressure. It was a 23. I was scheduled for surgery but they did a shunt study with the dye injection to find out where the blockage was. The tec had to manipulate the shunt for 10 minutes for it to be soft enough for the injection. The test showed it was working fine but within hours the drain tube swelled up and you could see the drain through the skin. To make a long story short I was discharged 1 1/2 days after the test with no operation and no explanation. I started feeling nauseous the day after the test and have been so since then. It has been almost 10 days and I have been vomiting off and on and have been sleeping 14-18 hours a day. My wife pesters me enough to wake up and eat (God bless her patience with me)
My head feels like it about to pop and walking a straight line is impossible. I don't see my neurosurgeon for another week.
The neurosurgeon is great but I have been in a training hospital and I only saw him once this last visit. Avery other Dr I saw was residence and they can't even keep their stories straight about what they said and what to do. They never even told me I was being discharged. The nurses were amazed and upset that I was and they didn't know until the last minute
So me question is should I find another hospital and Dr, should I go back to the ER there or another hospital. This is the best hospital in the area. The only other hos[ital in the area that could help I am not to sure about. I saw the main neurosurgeon from that hospital and he told me that he would do the initial operation but the tumor was so large he  didn't want to. He actually told me to find another Dr.  
I am at my whits end. I'm 41 years old and I can't even drive my kids to school. I have been reading about  Trepanation but with my luck of late I would foul that up.
Typing this letter has me in so much pain that I am taking some pain meds and curling up in a ball and going to sleep.
Sorry about my rambling but I wanted to make sure I had as much info as I could in this post. If it wasn't for the red squiggles (spell check) under the words as I type this letter would not have been understood at all. :-}
Any thoughts would be appreciated.
Signed
Frustrated and in pain

[rumpled]

Wow... have you been through the wringer and back. I am at a loss.

If I were you, I would go for another opinion. Do you have at least a good PCP on your side? Not that they are very helpful, but just for monitoring and may help you find another doctor.

Did you get the surgical reports and pathology reports from the hospital so you have an idea what happened - or at least their version of what happened?