I understand and have had similar problems. Maybe this will help. I started with the diagnosis of pseudotumor cerebri(I make too much cerebral spinal fluid so the intracranial pressure is increased. I was losing my eyesight so a lumbar peritoneal shunt was placed. 2 months later I started with a severe headache at the base of my skull. My neurosurgeon said that it was nothing. The pain got worse, I couldn't sleep. I went from neurologist to neurologist for help. The only help they offered was narcotics and anti nausea meds. That was not a solution for me. (I can't take narcotics) I wanted an answer. Finally an MRI was done with views that showed I had an arnold chiarii malformation. (I had had so many MRI's at this point. Why was one not done to look for ACM when I complained of pain at the base of the skull after lumbar shunt plcmnt)

I talked to the neurosurgeon and he said that until things got worse we did not need to do anything. By the time that I had major swallowing problems, could not grip with my left hand. Was very dizzy. Had walking problems he finally decided that we should do surgery. He did surgery but did not put a metal plate in to hold things in place.

After the surgery, the grip in my left hand returned and I was able to walk better. The swallowing got better but it has never returned to normal. I still had problems with being dizzy and the headaches did not improve. We found a blood pressure medication that helped with the headache at the base of the head. It did not go away but was better. We also had to swith my shunt to a VP shunt in the brain. (LP shunts are contraindicated with ACM and may have caused or at least exacerbated my ACM)

I was so miserable that I switched neurosurgeons and got an opinion as to what was going on with my head. He did a special form of an MRI that shows the flow of CSF. We discovered that my CSF was getting trapped in the skull and could barely even get any past to feed the spine. Another surgery was done but this time it took 2 surgeries and a total of 15 hours to fix the problem from my last surgery. There was so much scar tissue and because there was no plate in place the scar tissue blocked the opening (foramen magnum). The surgery took so long to dig all of the nerves and scar tissue out. A plate was implanted to hold things in place.

It has been 3 years. I have done so much better since this last surgery but there was a lot of nerve damage from this surgery so now I have burning nerve pain across the left side of my scalp. I cannot tolerate the medications used for the nerve pain. Ice and compression are my only solution.

I would check to see if they have done a CSF flow MRI on you. The second surgery was definitly worth it even though I ended up with the nerve pain.