The week unfolded carefully and slowly, as if it knew I could
only handle one answer at a time.
I spoke to the neurosurgeon’s sweet nurse first. After I filled her in on the immunologist/allergist plan of “desensitizing” me to Dilantin, I asked her if they had “cyberknife” technology available to them. It turned out that they do in fact, but they call it “gamma knife” – just different schools and manufacturers, but essentially the same thing. I asked then why they hadn’t offered that option to me, especially after I had had so many reactions to medications, and had had to cancel surgery because of those reactions.
I spoke to the neurosurgeon’s sweet nurse first. After I filled her in on the immunologist/allergist plan of “desensitizing” me to Dilantin, I asked her if they had “cyberknife” technology available to them. It turned out that they do in fact, but they call it “gamma knife” – just different schools and manufacturers, but essentially the same thing. I asked then why they hadn’t offered that option to me, especially after I had had so many reactions to medications, and had had to cancel surgery because of those reactions.
Deep sigh.
She told me that
because of the size and location of my benign meningioma, I am definitely not
a candidate at this stage of the game to have stereostatic radiology. It is
because the brain tissue around the tumor is so very valuable and the size of
my tumor would require a larger beam to take care of it, that they dare not use
it. Jeopardizing healthy brain cells is not an option, and so I am really at
peace with this knowledge even though it would have been nice to be able to
treat the tumor to an exit from my body without opening my skull up.
Almost immediately after that call, I got a call from my
Primary Care Physician who has been quite good about staying on top of all of
this process, I have to say. And, she echoed what I had just heard, “I looked
at your MRI this morning, Amanda, and at three centimeters and being right in
the area of the left temporal lobe, I have to say that it is highly unlikely
that you’re a candidate for Cyberknife treatment.” Sigh. I was prepared for
that answer at least, and when she asked if I still wanted to get yet another
opinion, I said that I thought there were enough doctors’ appointments going on
that I didn’t need to waste my time that way. She agreed because of the good reputation of the neurosurgeon that I'm using for this experience.
Hitting a dead end medically is not a terrible thing when
you have the information you need. It is only when one cannot understand why
the path is not open that makes it disheartening. I struck the whole option off
of my list for now. It is possible that there is a reason I followed the path
to its end, and so I share this information in the hopes that it may serve
someone else as a good answer.
I forgot to mention in the last post that I had also
discovered that our insurance plan will cover appointments with Osteopaths!
Yay. This is a healing modality that has served me very well in the past. Like
a chiropractors, osteopaths are specifically concerned with spinal alignment and
the cranial-sacral flow. Unlike a chiropractors, they have medical degrees, can prescribe
medication and are somewhat, grudgingly acceptable to the mainstream medical
profession. I had set to work to find an
Osteopath who was in the network of providers for my health insurance. No one
was listed so I called the insurance company and they told me that since there
wasn’t a listing I could pick whomever I wanted to work with, and they would
simply have to fill out some paperwork to become a provider for them. More
paper trails to follow and work to do, but in the end I found a very good
option and made an appointment for Thursday morning.
Thursday morning my husband and I drove the kids into
school, and made our way over to the Osteopath. He dropped me off, and I went
into a cozy natural wood-filled office. Wood benches, wood counters, wood
tables and chairs. Lots of wood. Did I mention wood? This will mean something
in a moment. My new Osteopath also is an acupuncturist, and so we had a long
talk about the work previous acupuncturists have been focused on in my health
scenario…namely my gallbladder meridian. It turns out that my
gray-ball-of-dirty-laundry tumor is located near the end of my gallbladder
meridian. It is a “wood” channel of acupuncture work. Did I mention wood? Plus,
I happen to be a Wood Dragon in Chinese astrology. I always find all of these threads
of commonality very interesting.
He did an osteopathic adjustment of my head
and sacrum and I admit that I felt lighter than I’d felt for a long, long time,
at least immediately following the adjustment. As the day wore on I felt the
adjustment acutely and I’m sure I’ve sunk back out of alignment, but this is
normal for a bit until the body becomes accustomed to being in “neutral” again.
He also gave me recommendations for another neurologist who will be my back up
plan should this drag on past whatever the immunologist can do for me, a
naturopath (which isn’t covered by insurance) and an ecological doctor (who I
could consult if the immunologist/allergist’s plan fails).
One thing that has happened on this journey is that I have
received dozens of recommendations and suggestions from all directions. I feel
badly not following every single one of them, but this is the truth of the
situation: there are only 24 hours in a day, and my energy for this lasts about
four of them and then there are other things to do in a day. I have to pick and
choose very mindfully where I spend the resources of time, energy and
money. I also am not allowed to drive,
so that all of my pursuits have to be reachable during times when I can get
help. I can’t run up and down the front range of Colorado at will to seek help.
However, I have kept all the names, and modalities recorded, and should I need
to, I will give them a shot, but even starting over with a new neurologist at
this stage of the game seems pointless, until I give the immunologist’s plan a
shot. One thing at a time is all I can do, and though it seems very slow to my
friends and family; perhaps, it is the most thorough and least panicky plan I
can pursue. Think of me as a turtle. I am slow and steady, and I will win this
race somehow.
Then I heard back from the immunologist’s nurse after a day
of phone tag, on Friday, and I have an appointment to meet with him on Tuesday
morning to choose one out of TWO plans for getting me ready for surgery. Yay! I
love to have options in a controlled setting. So, I’ll update you about those
after that appointment. Maybe we’ll get
this show back on the road again soon.
Meanwhile, all week I was pursuing a deeper understanding of
myself in this situation. The revelations that those precious discussions uncovered
were astounding and very emotional for me. They deserve their own post and so…to be
continued…
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