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June 10, 2013
Mar 28 Email: A Fourth Opinion and a Decision
I had a clinical visit with an expert neurologist to examine my condition, review all my test results, and get a fourth opinion on March 21, 2013. A week later, I put this email together.
Date: Thu, 28 Mar 2013 15:29:59 -0400
From: Jon Nathan
Subject: Re: Neurological issues
Once again, thank you for your continuing support and concern. I'm
adding a few new people to this distro, so sorry for the surprise
and please bear with me if this is new to you. I'd like to continue
to keep this private for now.
Last week I got a fourth opinion from an expert neurologist. We
discussed my history, symptoms, and test results. His initial
impression was that I most likely have a spinal cord tumor. He
didn't think it looks like inflammation or similar processes. He
asked for a few days to discuss this with my neurosurgeon and the
radiologist.
Yesterday, I heard back from my neurosurgeon, who confirmed that
the three of them had spoken. The consensus opinion is that it is
an intradural, intramedullary spinal cord tumor. I've scheduled
surgery for April 15th.
The procedure itself is relatively invasive. My neurosurgeon will
perform a laminectomy. He will remove the spinous process and
lamina of my C4-C6 vertebrae and install a series of small splates
and screws to reattach them upon completion. He'll then use X-ray
fluoroscopy and a microscope, as well as my previous MRI images,
to try to locate the abnormal tissue. There are three general ways
it could play out. 1) If it's visually obvious and clearly
circumscribed, he will resect it. 2) If it's visually obvious but
not well circumscribed (diffuse), he will resect as much as he can.
3) If it's not visually obvious, he will perform a biopsy on a tiny
slice of tissue. The resected tissue will then be examined by a
neuropathologist. Assuming the tissue is identified as abnormal,
he will then remove as much as possible. My neurosurgeon thinks
that options 2) or 3) are most likely.
Often in-procedure analysis is inconclusive because of the small
size of sample and time involved. The tissue will then be sent to
a lab for further analysis. These results will determine future
treatment. Certain types of tumor cells respond to radiation, while
some respond to chemotherapy. The most common types of spinal cord
tumor (astrocytoma, ependymoma, hemangioblastoma) generally respond
to radiation. If the tumor is clearly circumscribed and fully
resected, we may choose to do nothing further. But in the most
likely scenario, my neurosurgeon will remove as much of a diffuse
mass as he can without impacting neural tracts. Then I will go
through targeted radiation therapy a few weeks after that.
The procedure itself will take 4-8 hours, and I'll stay in the
hospital for 2-3 days afterwards. I'll probably take another 2-3
days off to rest and recuperate, but I should be ambulatory at that
point. I'll wear a neck collar and take it easy for 6-8 weeks,
then start physical therapy and rehabilitation.
My symptoms are still about the same. I have a lack of sensation
in my feet and shooting paresthesia in my back and arms. The
intensity fluctuates a bit from day to day. I'm not in pain, and
I'm otherwise pretty happy and healthy.
My prognosis is generally favorable. At the least, my symptoms
should stop progressing. I can hope to regain some function in my
feet and legs. The paresthesia should stop. The swelling that's
compressing my spinal cord should reduce. This will not be immediate,
but might take weeks or months.
There are risks involved, including infection, further neurological
defecit, numbness, and paralysis. Especially because the diagnosis
is still a little murky, it's hard to really know how things will
go. I made the decision to go through with this based on confidence
in my doctors, understanding of my condition, and desire to treat
it. I am keeping a positive attitude and am confident that we'll
be able to handle this.
-Jon
Posted by jon at June 10, 2013 12:32 AM