In the last few weeks, my endovascular neurosurgeon, Dr.
Berenstein, sent my case to be reviewed by Dr. Lundsford in Pittsburg. Dr. Lundsford
is essentially the founding father of radiation treatment for AVMs in the
brain. His review on my case said that I was a good candidate for radiosurgery,
and he is 70-90% sure radiosurgery would totally obliterate the AVM (but it
would take up to 3 years to know).
70-90% is a HUGE and unsettling range! So, I compiled a list
of questions and I went to meet with the radio-surgeons who work at Roosevelt
hospital (closer than schlepping to Pittsburg).
I first met with Dr. Ghattan (I had met with him last year
regarding an open skull craniotomy) to discuss radiation treatment. He drew out
my case for me and showed that my specific case is very tricky. My AVM is in
the vermis (the part that controls my balance and my eye movement) sandwiched
between the cerebellum and the brainstem—prime real estate. So, the trouble
with my case is that it’s deep in the brain, and it’s in a very sensitive
place.
If my AVM was not in such a sensitive spot, radiosurgery
would be the answer for me.
The way radiation works is, they put a helmet on my head and
shoot 200 beams into my brain targeting the AVM; each beam is too weak to cause
any damage to the surrounding tissues on its way to the AVM by itself; but once
they all meet at the AVM they add up to full dose of radiation and begin to
harden the arteries involved in the AVM over a course of 3 years. The trouble
is that with this radiation there will be spill over. Generally, spillover isn’t
super dangerous, but if spillover hits my brain stem, it would cause permanent damage
to my eyes or balance. Since they understand the real risk and severity of
spillover, they would lessen the dosage of radiation and therefore, lessen the
amount of over flow (but then the AVM isn’t getting the necessary dose of radiation.)
Dr. Ghattan reviewed my case with Dr. Parikh (a radio-surgeon
at Roosevelt) and they made a fake measurement of what would happen if they set
up the machine for radiation for my AVM. They found that with my case they had
a 75-85% success rate with a 15-20% damaging spillover rate. Those are not
comforting odds on either account.
Other than radiosurgery, my other option is that I can just
leave it alone and wait… the unnerving part of that is that every year there’s
an added 2-4% chance of hemorrhage, and every day I will be living knowing that
I have a ticking time bomb in my brain that can burst at any second.
As of now there are two types of radiation machines, the
Gamma knife machine which uses gamma rays, and the linear accelerator which
uses photon rays. They are basically the same when dealing with AVMs in term of
the success rate and spillover.
Silver lining? There’s a different type of radiation that is
being used on cancers and non-AVM issues. This radiation uses proton beams. The
difference with the proton beams is that they can basically program it to not
have any spillover. Without spillover, they can target my AVM with 100% necessary
radiation. Obviously, this would be the best
situation for my case—unfortunately, they don’t do it on AVMs yet; and if and when
they do start using this method on AVMs it would take years before it would be
tested, trialed, accredited, and then used.
So, now I’m left with 3 options: do I do the gamma knife or
linear accelerator therapy—hoping to fall in the 75-85% and not the 15-20%; do
I wait for proton therapy to be ready for me—which could be up to 20 years; or
do I just leave it and hope for the best for the rest of my life?
