Expert: Claes-Gustaf Nordquist, M.D. - 8/25/2008

Question
QUESTION: I have a tumor in the ons where the third nerve exits and it leaks and these leaks cause scar tissue to build up.  I get double vision if not looking straight ahead I cant smell anymore and I fall alot besides all the headaches and vomiting. Is there anything more to help me?  The sezuire meds cause me to have alter states. I dont get sezuires I get dizzy spells but they keep giving me seziure meds. Now it is neurotin, it causes me to fall asleep right in the middle of something, even eating. There has to be a better way of dealing with this isnt there? Ontop of all this Medicare has as of Jan 08 stop paying for my pain meds, codeine 60mg., unless with asprin or asprin subsitute which I cant take due to kidney and liver problems. I have to choose between pain meds or utilities and food these days.

ANSWER: What kind of tumor do you have and what has been done in the past with regards to it?



---------- FOLLOW-UP ----------

QUESTION: it is a cranophyangioma.  They tried surgery which they had to stop as it was entangled in the brainstem.  Surgery caused more problems - memory and dystonia spasms.  They functioning of the pitutary & hypothalmus is imparied.  I'm suspose to take steriods daily but I don't usually as I don't like all the side effects. I'm to take cortef.  In addition in the last yr my kidneys have shut down four times.  they don't know why but it is always sfter a day  of the spasms and they say my cf is 6xs normal or more.  my fever goes up and my white count goes really high.  They said I have diabetes insipdus from it as well.  I hope this helps. thanks.

Answer
Dear Kathleen, this was a hard and difficult question! To be able to give you a good answer I would need a very complete knowledge of your case which I do not have. In fact you would need a team of neurologists, endocrinologists, neurosurgeons, radiation therapists & medical oncologists to do that. Has radiation therapy (and chemo therapy) been discussed or done? If i were in your situation I would seek second opinions from numerous specialists along the lines above!