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June 10, 2013
May 21 Email: Finally, a Plan
Date: Tue, 21 May 2013 21:57:47 -0400
From: Jon Nathan
Subject: Neuro Update: 05/21
Hi everybody. Thank you once again for listening to my updates and
your continuing support.
Today was an eventful day for me. I had my first outpatient physical
therapy evaluation. The therapist seems experienced and competent.
She wants me to continue most of my current at-home routine and to
increase duration and intensity for my exercises. I am also adding
a treadmill component, and she has suggested a few more balance
exercises. We are still determining the outpatient schedule, but
it will probably be about once a week.
I also had my follow-up neurosurgeon visit. This was one of the
most awaited milestones in my recovery. The doctor seems pleased
with my progress and state in general. We've put together schedules
to gradually decrease most of my medications. They are still
necessary for comfort and recovery, but some of the side effects
would be nice to be done with. Specifically, one of the drugs
causes some blurry vision. This is obviously not ideal.
His evaluation of the neuropathology report is that the rare abnormal
astrocytes that we saw were possible low-grade tumors, but my body's
natural defenses took care of them. Astrocytes are support cells,
not firing neurons, but they are definitely part of the neurological
system. He now thinks the most likely explanation for my issues was
localized chronic inflammation. I am scheduling a follow-up MRI for
mid July, and we will see how things look then. Then a follow-up
doctor visit for the end of July. There's always a chance of
recurrence, but we will stay on top of it. My symptoms continue to
fluctuate but slowly improve as I continue my therapies.
Most importantly, I have a plan to wean myself from my neckbrace.
For the next two weeks, I will have 4 hours of freedom per day. And
the following week, 8 hours. And the following week, 16 hours. Then
the following week, I will be neckbrace free. I will not have to
wear a soft brace during this process. I still need to be extremely
cautious and take things slowly. I'm not allowed to lift more than
a few pounds above my head, but I am able to extend my range of
motion. I can start to gradually do some simple isometric exercises
with my neck and shoulders. I am allowed to gently bend and twist
my neck, but the emphasis is still on safety. I will continue to
use my walker for the foreseeable future. My doctor thinks that the
full recovery process is still going to take in the range of months
to years. But I will continue to work hard at it.
When I put Sylvie to bed tonight, I said look, no more special
necklace! And she said, now I can climb again! I cannot tell you
how much I wish to be back to normal.
I have scheduled a professional shave and haircut for Thursday
morning, and am very much looking forward to it. The incision site
is clean and healed. I'm going to take a hot shower without my
shower brace and fully scrub it tonight. Unfortunately, massages
are not recommended for another few months. I also wanted to
investigate acupuncture as a possible therapy, but my doctor does
not want to add too much extra into the mix. Maybe in the future.
Occupational therapy continues as usual. Nothing new or interesting
there. I won't be able to type with two hands for the foreseeable
future. And when I can conduct a vehicle, it likely will not be one
with a manual transmission.
I am looking to receive my doctor's clearance to resume work, from
home, in about two to three weeks. I would be able to carpool into
the office after that. I have no date for being able to drive into
the office myself. That will be determined by my neck mobility and
manual dexterity.
Thank you again for reading through this, and I will continue to
send updates as important events occur.
-Jon
Posted by jon at June 10, 2013 4:18 PM