Saturday, May 14, 2011


...but a missing cyst and clandestine plans...

Missing Cysts

Last December, during a routine scan here at home, a cyst was seen in my sweet son's brain, attached to a tumor and snuggled against the brain stem.

In late December Steven started an oral prescription medication for hair loss.

In February the cyst and accompanying hiccups were noted by the brilliant doctors at the NIH. These doctors, who study VHL more intensely than anyone else, suggested immediate surgery. My sweet son, because he was in the middle of the last semester of college and didn't want to ruin his plans for an August start at law school, asked if the surgery to remove this tumor could wait until May.

After a long and convoluted conversation about symptoms, dangers, and outcomes, all agreed that Steven would wait until May, return to the NIH, have this nasty tumor removed, and start law school without any hiccups or VHL worries.

On the way home I began talking to my sweet son about the importance of keeping his local neurosurgeon advised of these plans. So Steven made an appointment with this Dr in mid-March, and I accompanied him.

Dr. V saw the cyst, commented on symptoms, and asked why the drs at the NIH would recommend surgery when the only symptom is hiccups. We explained what the good drs at the NIH told us. To the best of our muddled understanding, the drs at the NIH are finding that brain stem tumors almost always need to be removed, that beginning symptoms are a precursor to horrible side-effects of the tumor, and that they feel now that it's better to remove these tumors before the horrible side effects occur, as swallowing problems, numbness in limbs, and constant nausea don't always cease after surgery.

Dr. V listened intently, nodded his head a few times, and told Steven to re-scan in May and come back to see him.

Which bring us to the most recent scan of my sweet son's battled brain.

The cyst has all but disappeared.

No miracles, folks, as a miracle would mean that the cyst had completely disappeared. A miracle to us would be a brain free of disease or a gene that corrected itself. A miracle would be a drug that prevented further surgeries.

This is just a cyst that has followed a path not seen in VHL and diminished to a size that is barely visible.

After looking at the recent scans, that were sent overnight to the NIH, a resident dr working in neurosurgery at the NIH phoned my sweet son. This dr mentioned that the difference in the cyst doesn't appear to simply be a different cut of the MRI machine. This dr asked Steven if he has had radiation to that tumor, in an attempt to explain this finding. Steven, of course, replied "no", but he did mention this medication for hair loss that he's been taking since late December. The resident told my sweet son that his scans would be reviewed the next day by the lead drs in VHL studies at the NIH. The next day, in a flurry of missed calls and email correspondences, Steven was told that VHL brain cysts don't simply disappear or diminish significantly in size. He was also told that these drs won't answer any questions about what could make this cyst diminish so brilliantly until his next appointment in August, because cysts attached to tumors in the brain of a VHL patient simply don't diminish significantly. These doctors also deferred to Dr. V in regards to surgery plans. Dr. V, of course, doesn't see surgery as an option now. He would prefer to watch this tumor closely and be informed of the next MRI from the NIH. This MRI will happen in August.

August is also when my sweet son starts law school.

My son, to say the least, is frustrated. He's frustrated because his plans for this summer, including a meaningful internship that he had to pass up and exciting travels that couldn't happen, were cancelled, based on a brain surgery that was all but written in the books. He's abundantly frustrated that even the most brilliant drs in this field don't have answers for him. He is most frustrated that he's now expected to start law school with what we consider a very unstable tumor.

And we, by association, are frustrated.

Clandestine Plans

I teased a bit back in late December, amid the tears and disbelief that accompany a bad scan, that this prescribed medication that my sweet son was taking to treat hair loss might be the answer to prayers for thousands of VHL patients.

I was simply teasing.

After seeing the latest scan, however, I began thinking about the timeline of the changes in the cyst and the medication, the fact that this medication inhibits the formation of certain male hormones, the common but unproven belief that VHL tumors respond negatively to hormones, and the response from the NIH doctors that VHL brain tumor related cysts don't simply go away on their own.

And I brilliantly decided that the decrease size in the brain stem cyst was directly correlated to the taking of this medication.

And I suggested to my sweet son that we now work on proving causation between the medication and the cyst in the little lab that we like to call "the upper left shelf of the corner kitchen cabinet".

I hope this is the miracle pill.

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