12 years after brainstem epidermoid cyst removed

Capsule left on cranial nerves. Due to unsuccessful CSF repair 3 wks after first neurosurgery(despite lumbar drain for several days,)I dealt with intense pressure headaches for approx. 18 months until CSF finally stopped leaking. I can't help thinking although my neurosurgeon says my MRI looks fine..no regrowth, I keep wondering...
..what role intense pressure x 18 mo.may have had on my entire brain (while leak was healing.)
..what role the lesions/scar tissue that remain on cranial nerves have on my numerous symptoms?
..why pituitary &/or hypothalmus are now abnormal & being evaluated yearly?
..why I have developed Central Sleep Apnea in the past 3 years?
..why I still have intense pelvic pain (endometriosis stage 4) despite hysterectomy & removal of rt. ovary & most of left ovary?
..why the endo has not been helped by different trials of Lupron Depot--most recently since Oct/07 treated with daily Femara, Progesterone every other day, monthly lupron shots (now have 8 monthly shots)..and am still is just as much pain (feels like a really bad period or early/mid labour!)
..2 summers ago heart rate dropped to the 40's x 2 months..full cardiac work-up as heart rate began to improve & told that my heart is not the problem & it is "likely due to brainstem" by Electro-Physiologist/Cardiologist.
..other times since before the tumor removal & to this day...I have episodes that may last days, to several weeks where I feel like somebody is sitting on my chest & I am extremely fatigued..recent exam revealed normal sinus rhythm, & "likely due to brainstem history" by local ER staff.  When this happens it is 24/7 & when it goes away it is gone until the next time.  Although I do suffer from anxiety & depression, both are well controlled & I am not anxious when this chest pain happens as I know it will eventually go away.
..Although I have a team of great doctors, I need to know if there is anything that can be done to stop all these neuro symptoms from developing &/or continuing.  I am in constant pain, go from my chair to my bed, very fatigued, have my cold packs & hot packs plus pain medication & am still in excruitiating pain most of the time.
..THESE ARE MY DAUGHTER'S NEURO THOUGHTS & I AM HER MOTHER SENDING THIS TO YOU TO SEE IF ANYONE OUT THERE WOULD BE ABLE TO HELP IN SOME WAY..THANK YOU.


This discussion is related to condition after craniotomy/spastic.

[squeemy]

Could you please post this question in the Dr.'s forum.  Thanks so much