Neurosurgeon Appointment

My head is so full right now; I don't even know where to start. And, yes, it is 3 in the morning. I am too keyed up to sleep right now - in an awesome way.

Because I told many people that I would post the outcome of my appointment with the neurosurgeon today, I will cut right to the chase: the neurosurgeon (head of Hopkins - so he is probably not a very smart guy) does NOT think I have a brain tumor. I do have a mass in my brain, but his opinion is that it is simply a congenital deformity. Basically, I have an "abnormal" mass of extra tissue in my left ventricle, which reads like a tumor on MRI but is not tumor tissue, just "extra" brain. I think the clinical implication is that my brain has the equivalent of a third nipple. The mass is certainly strange and rare, but is not life-threatening or dangerous, if it never changes. I will be followed with periodic scans going forward just to make sure it is not growing or changing over the course of the next five-seven years, but the neurosurgeon is pretty confident it will remain static.

I feel like I just received a stay of execution. Two and a half weeks ago, my doctor called and said "You have a brain tumor." Not - I THINK or MAYBE or MORE TESTS TO CONFIRM, but "you HAVE." I had to repeat those exact words three times because it was such a surreal moment:

"You are diagnosing me with a brain tumor?"

"Yes."

"OK, to clarify - your diagnosis is ..... brain tumor? Really? Brain tumor!?"

The second I hung up the phone, I started researching immediately. I am a manic researcher - whether I am buying a vacuum cleaner or possibly getting my brain cut into - I want to know EVERYTHING about the pros, cons, insider tips, etc. While some of the medical journals were certainly over my head, the gist of what I could extrapolate was that almost any sort of brain tumor is bad and you die. Some types of tumor hasten death more quickly than others. My heart nearly stopped when I read that the average five-year survival rate was @ 30% for ALL brain tumors - regardless of whether the tumor is benign, malignant, treated, or untreated. Not great odds.

I had just gotten my head wrapped around this idea when we met with my doctor the day before Thanksgiving. She informed me that she and her colleagues had reviewed my films and had narrowed down the classification of tumor to three possible types: mengianoma (ok - can be dealt with - would be best kind to have out of the three, but they did not really think it was this one b/c of location), neurocytoma (also - not super-awful - exceedingly rare, so may be unlikely), and .... drumroll, please ... astrocytoma. I now know that "astrocytoma" is one the scariest words in the English language.

This sort of information kept me up at nights:

(Medscape) Astrocytoma: Malignant astrocytoma represents one of the most devastating tumors affecting children and adults. Surgery and adjuvant conventional radio- and chemotherapy have had minimal effect on changing the poor prognosis, which remains at a median range of only 9 to 12 months.

I was told that the neurosurgeon would review my new scans and make the call on what type of tumor I had, and what to do about it. First line treatment is most often surgery - to biopsy, get a tissue sample and remove as much as possible. For obvious reasons, brain surgery is not without risks. To add to the stakes, the Hopkins neurologist told me that there were only about 20 people in the country that are "acceptable" at removing intraventricular tumors because it is such a difficult area of the brain to access surgically.

As I began mentally preparing myself for my appointment, I played through the scenarios in my head: Worst case: Inoperable, astrocytoma, prognosis of months? Better case: Can remove through surgery, is benign, surgery not as risky as had been told, may have a few years ... maybe more? Best case: Think all can be removed, will have full recovery! Either way - I was bracing myself for the "surgery on your brain" news and all the inherent risks.

I did not tell Jeff or my family this at the time because it seemed over-the-top morbid, but I recently spent the better part of a day checking into options for hospice coverage. I got a packet of info from one of the brain tumor non-profits and was going through the checklist of things to do while dealing with a brain tumor diagnosis. Step Ten: Line up hospice care, now, before surgery, while you are healthy and have the strength. Wow. There are no words to express how chilling it is to call to inquire about your own hospice care when you are 32 years old.

So - the diagnosis of "line up hospice care" to "you have a brain nubbin" is a a pretty big discrepancy. When we had my appointment yesterday, we had already sent my scans and records to Mass General/Harvard and Pittsburgh (kind of random - but one of best intraventricular surgical guys is there) for second and third opinions. I am assuming all will we well with that. I debated calling those off but 1) it is my brain and 2) well, it is my brain. Want to be 110% sure ... maybe 120%.

I still have weird symptoms, which the neurosurgeon thinks may be a pseudotumor. Not super scary like the word would implicate - simply means elevated pressure in the CNS. Not a huge deal. He wanted me to have the lumbar puncture done to look for that and some infectious agents - will schedule that for post-Christmas/New Years. I think I have vastly exceeded my quota of medical drama for 2007 already.

So, my original post was correct - I have an imperfect brain. However, it is not an imperfect, lethal brain, and for that I am very, very happy.

At the risk of this sounding like an Oscar speech: Thank you, a thousand times over, to all my friends and family who read my notes, sent me wonderful mail and presents, called me over and over (even when I was not returning phone calls), and prayed for me or kept me in your thoughts. I can honestly say that I would not have dealt with this terrifying time so well had I not had your support and love.

Love, J

PS I ROCKED those lucky pants at my appointment .... in case you were wondering.