The Neurologist's Tale

Yesterday I finally had my much-awaited appointment with the neurologist.  Wednesday night I was required to stay up late (till midnight) and rise early (4am), because for this exam I was supposed to be tired.  Not a problem :)

They led me into a small exam room, had me lay down on an inclined table about the size of a postage stamp (my feet felt as if they were going to slide off the table).  Then the doc affixed twenty-odd electrodes to my skull.  I didn't have a mirror but I must have looked like something out of a horror movie . . . which is nothing new, electrodes or not.

I was told to keep my eyes closed during the test, because there would be flashing lights (no disco balls though), then the lights were turned off and the show began.  I relaxed as much as I could . . . and sometime during the test I heard gentle, soft, snoring.  My wife had fallen asleep.

After the test we met with the doctor and got the results.  He said I had a risk of seizures . . . hell, that's no real surprise.  He said he was going to prescribe Keppra for me.  Told me I'd be on it "indefinitely".  I just shrugged.  Hmmm . . . I have neuropathy in both feet, take medication for high blood pressure, liver pills for bilirubin (all of the above are little mementos of my trip down brain tumor lane), so why not throw in some seizure meds, too?

He also gave me a brief exam, didn't find anything unusual.  I was tired (make that exhausted, because I'm still recovering from chemo).  I see him again in another month.  By then I should be more back to normal.  I was on chemo for seven months and I was never so glad of anything to be off it.  Hope I get to stay off of it.

Can you see a neuro-oncologist (NO)?  A neurologist is not qualified to treat brain cancer.  My NO prefers Vimpat + Keppra based on his treatment of a variety of brain cancer patients.  I have never had an exam like you described and saying you have a risk of seizures after what you were diagnosed with is not a breakthrough.  Are you getting MRIs?  How often and who are they being interpretted by?  All of this is really important. An experienced NO with knowledge of the latest treatments and clinical trials is really important.

Good luck, JG

On Dec 16, 2012 6:44 PM johngiustino wrote:

Can you see a neuro-oncologist (NO)?  A neurologist is not qualified to treat brain cancer.  My NO prefers Vimpat + Keppra based on his treatment of a variety of brain cancer patients.  I have never had an exam like you described and saying you have a risk of seizures after what you were diagnosed with is not a breakthrough.  Are you getting MRIs?  How often and who are they being interpretted by?  All of this is really important. An experienced NO with knowledge of the latest treatments and clinical trials is really important.

Good luck, JG

Hi John,

I'm seeing three different neuro-oncologists at two different places.  I'm also seeing my primary care physician (he is the one who referred me to the neurologist).  I've had two MRIs since beginning treatment in April, one in later June (four months after surgery, which was February 28th), and another one September 28th.  The first had what I describe as some "chatter"-- that is, there was probably some swelling from the radiation (I had thirty-three proton treatments), but the docs said there was no evidence of recurrence.  The September MRI was better, the report said, to put it in docspeak, "there is no evidence of recurrent or residual neoplasm".  The doctors at the lab where I had the MRIs interpreted the results, as well as the docs at two different hospitals.  I have another MRI scheduled for January 4th, and I have an appointment January 10th to discuss the results.  At this writing I haven't noticed any "deficits", but of course that is always subject to change.  The hospital I've been treated at is Loma Linda in California, acknowledged by some to be one of the top cancer centers in the country; I've met people there from all over the country who have sought treatment there.   I'm fortunate to have them literally in my backyard.