The decision lies between the rock and the hard spot

Was at the Chiari Institute at the prescribed time.  Filled out all the paperwork, dictated the usual history to the PA, she did some tests we hadn't seen before - thought we'd seen them all.  One was to see if Vanessa could bend her thumb back to touch her wrist - she can.  The other was to check how far backward she could bend her knee - quite far.  Then came the neurosurgeon.  He asked bunches of questions and explored her MRI films.  He said there is a spot on the left side of her cerebellum tonsils that is being compromised.  He said it was clear her brain is still too far outside of her skull, but that will always be like that.  There is NO cure for Chiari and as patients age, the disease usually progresses.  He explained they can go in and remove bone and tissue from the left side of her skull to give more room for her brain to function properly.  He would also cauterize her cerebellum tonsils to shrink them some.  Surgery 'probably' will stop the tremors on her left side, may stop the left pupil from becoming so large during a headache, would stop the numbness and tingling on her left side. It would probably stop a few of the other symptoms also. It 'could quite possibly' stop a 'good bit' of her pain - no guarantee.  But he cannot stop all of her pain and anyone that tells her they can are lying.  He said she will most probably be on some sort of narcotic for the rest of her life.

This would be her 3rd decompression surgery and each time you open the neck and skull up, the chances of needing a shunt increase exponentially.  After the first decompression, almost no one needs a shunt, after the 2nd surgery, very few need a shunt. . . from the 3rd surgery on, almost all patients need a shunt. . . which adds a whole new host of problems.  Also each time you open the neck up, it weakens the muscles and the stability of the brain and neck, causing more hyper mobility and since Vanessa is already exhibiting some signs of hyper mobility, there would be an increase.  (The finger to the wrist thing and the knee thing.)  If the neck becomes too mobile a fusion is required and then you lose 80% of the flexibility and movement in your neck.   

He also told her that studies have shown if you have been out of work due to a disability for over a year, the odds of getting off of heroin are greater than going back to work. At this point Vanessa was in tears. 

He told us to go home and await the results of the doctor's conference occurring every two weeks where the doctors of the practice discuss new cases. They will all review Vanessa's case and see if the benefit of surgery outweighs the risks described above.  Then she has to decide if she is ready to have her head opened up again and risk the consequences. 

So does one choose a surgery that could 'possibly' help or could 'possibly' make things worse, when they are already unbearable.  Tough choice.