June 9, 2013
My feet are numb and tingly
In November of 2012, my lovely wife and daughter and I took a family vacation to southeast Asia. In Malaysia, we attended my wife's cousin's wedding, took in the sights and culture and food, and spent time with her family.
Everyone in Malaysia wears sandals. Flip-flops, open-toes, plastic, leather, pleather, whatever. It's too hot to wear socks and shoes. So I bought a nice cheap pair of black pleather sandals and clomped around in them. They weren't particularly comfortable, but my feet were cool, and it allowed me to better blend in with the locals ;).
My wife and I left the kid with her family in Malaysia and took a side trip to Bangkok. It was an amazing mini-vacation, just me and her. We took in more sights, shopped, ate, walked around, got massages, reconnected with each other, and generally had a fantastic time.
It was some time during this trip that I noticed numbness and tingling in my feet. It was an uncomfortable and peculiar feeling, but it wasn't painful or too uncomfortable. I figured it was related to all the walking around with my cheap plastic-soled pleather sandals, and that it would get better on its own.
But it persisted, and even got a little worse. By the time we returned home from Asia, my feet were persistently numb and tingly. This caused me to be clumsy and awkward in my gait because my brain didn't get feedback from my feet about where they were and what they were doing. It prevented me from running and jumping and playing sports and doing all the activities that I was accustomed to. It also manifested itself in shooting paresthesia, starting in the middle of my back and and running down my shoulders and arms all the way to the tips of my fingers. I could trigger these pins and needles by violent actions such as throwing myself to the ground or banging into a wall, or by common simple actions like coughing or sneezing.
I continued to think it was a transitory impairment, and that it would get better on its own. I continued my active life. But I had a few incidents that concerned me.
I lifted weights at the gym as usual. When you do squats, you lay a weighted barbell across your shoulders and squat down and stand up. With anything more than minimal weight on the bar, this caused serious paresthesia.
I also kept playing soccer. I'm a goalkeeper, which means I throw myself all over the place actively trying to get hit by by soccer balls and other players. It's hazardous when you are healthy to begin with, and I've injured myself many times in the past. But with my impairment, I had two major problems. The first was that on more than one occasion, I temporarily paralyzed myself by diving into the ground. The paresthesia shot through my arms, core, legs, and feet. It felt like a mild electrical shock through my whole body. It lasted about 10 seconds, during which I was unable to get up off the ground or move at all. But it went away, and I got back up and kept playing. The second problem was that I was just becoming clumsy and uncoordinated. I couldn't move or run normally. I couldn't kick the ball well. I couldn't jump. I was playing terribly. It came to a head when one of my teammates rightfully berated me for an awful play where I stumbled, missed the ball, and fell.
At this point, it was late November 2012. I decided to take time off from sports to let my body recover. I figured it wasn't a big deal, and that I would get better with rest. That's how things normally work. But by the middle of December, it wasn't better, and was in fact worse.
Posted by jon at 6:30 AM
I made an appointment with my primary care physician and saw him towards the end of December, 2012. He said, "you're young and otherwise healthy, and shouldn't have problems like this," and referred me to a neurologist. Due to the holiday season and general physician scheduling difficulties, I wasn't able to get an appointment with the named expert at the recommended practice until some time in February, 2013. But there was an opening with one of his newer associates for January 3, 2013. I wasn't getting any better on my own, and I didn't want to wait, so I took the appointment.
She examined me and determined that yes, something was amiss. I couldn't walk in a straight line. I couldn't balance well at all. I couldn't feel different pokes or pricks or prods on the tops or soles of my feet or on my toes or ankles. The paresthesia shooting from my shoulders was repeatable and concerning. There were many potential causes for my symptoms, but she didn't think that it was related to walking around Bangkok for 5 days in poor quality sandals. She decided to start a series of tests.
The first test was bloodwork. I went to an independent lab the next day, January 4, 2013. They scanned for a whole host of diseases and conditions, levels of hormones and antibodies, and other blatantly significant findings related to metabolic levels. Four days later, January 8, 2013, the results came back. They found low levels of vitamin B12 and D3, which were not especially suspicious or concerning with respect to my symptoms. They were also easy to treat with supplements, so I quickly purchased some and began a regimen. Nothing else concerning like Lyme disease or diabetes that might manifest my symptoms was apparent.
The second test was an MRI of my cervical spine (neck). It took place the same evening as the bloodwork, January 4. Since the paresthesia originated there, it seemed like a reasonable place to start the diagnostic imaging process. My neurologist suspected something might be going on in my spinal cord. The test results came back the same day and showed an enhancement (abnormality) between my C4 and C6 vertebrae. There were also some signs of mild stenosis (spinal cord compression) and moderate bulging discs. These results started a chain of events that would take me to unexpected highs and lows.
Posted by jon at 7:24 AM
The Brain MRI
The findings from the MRI of my cervical spine prompted further tests. The neurologist ordered an MRI of my brain for the following day, January 5, 2013. The order itself said "demyelinating disease," which caused me no small amount of panic. The most common demyelinating disease is Multiple Sclerosis, and one of its common symptoms is loss of sensation in the extremities. I did some research and started to think this could potentially be my condition. Some things didn't really align, but the neurologist's order said "demyelinating disease," and in my state of alarm, it seemed like many of the MS indicators described me.
When I went into the radiology center for the brain MRI, the tech looked at the order and asked me, "How long have you had MS?" I bit my tongue, gave her a shitty look, and said as evenly as I could, "I don't know." Meanwhile, my head was spinning. I thought that the neurologist had diagnosed me with MS, and that the radiology tech was only discussing common knowledge.
The MRI itself seemed to last hours. If you've had one before, you understand that it can be stressful and difficult. If you haven't had one, I'll describe it briefly. During the procedure, you are positioned on a narrow padded plank and then drawn into a narrow opening tubular opening in a large machine. Your face is about 3-6 inches away from the roof, and the rest of the tube is not much wider than the average individual. If you are claustrophobic, it can cause some level of distress. You are given earplugs and instructed to stay still and calm for the duration of the procedure. The technician talks to you through a speaker inside the machine to give you instructions, update you on status, and keep you calm. Then "the magnet" spins up. They perform multiple imaging sequences. Each sequence runs for a different duration, with a different magnetic field strength, is modified by different radiofrequency pulses, and targets a different location in the patient. The MRI may also be ordered with or without contrast. Without contrast is the default, and means you just get imaged once. With contrast means that you get imaged once, then injected with a contrast agent and imaged a second time. The contrast agent is a gadolinium-based solution that enhances the visibility of internal structures. It is generally only ordered under certain circumstances.
You experience a series of loud, cacophonous, and dissonant but generally rhythmic atonal beeps, bloops, clangs, and bangs. It's similar to an orchestra warming up in the way that different discordant sounds mix for brief periods, anywhere from 45 seconds to 6 minutes or so. You feel as well as hear the magnetic fields throughout your entire body. The whole experience can be very disconcerting if you don't relax and stay calm. But you can also be lulled to sleep by the process if you can convince your mind to shut off.
My circumstances called for contrast. After the first sequence of images, they withdrew me from the machine, gave me the contrast agent intravenously, and reinserted me into the machine to experience it all again. In fact they only redo certain sequences with contrast, so the second run only took about half as long as the first.
This whole procedure is controlled by a computer operated by the radiology technician. The end result is a series of black and white images of your bones and internal soft tissue structures, which are then analyzed and interpreted by a radiologist. The radiology center provides you with a CD-ROM containing the images and a summary report of their findings, which you then provide to your referring physician for further analysis and explanation.
In the time between having the MRI and discussing the results with my neurologist, I was in a fairly anxious state. Multiple Sclerosis is a serious disorder, and though there are treatments and therapies, I was extremely nervous that the MRI would confirm that diagnosis. I did a lot of research to convince myself that I was ready for just about anything.
Posted by jon at 2:19 PM
Good news, bad news, and no news
I got the results of my brain MRI two days later, on January 7, 2013, about 30 minutes before I was to board a flight from Dulles to San Francisco. I was having a delicious Potbelly pizza sandwich near terminal C2 and preparing myself for 5 hours of tedium and poor customer service.
My neurologist explained that the brain MRI order itself was drawn up by one of her colleagues since she happened to be unavailable that day. She also explained that the term "demyelinating disease" probably should have been preceded by "examine for" and that it was a guideline for the radiologist, not a diagnosis. She said that she is usually more verbose than her colleague, and apologized if the order had caused me any panic or distress. "You're damn right it caused me distress! I thought I had MS!" She apologized again for the terse verbiage and said that testing hypotheses was part of the diagnostic process, and that there would likely be more twists and turns along the way.
The good news was that the MRI did not show any of the brain lesions characteristic of MS, and that we could safely conclude that it was not causing my condition. The report focused more on my sinus cavities than my brain, which was a good thing. I had suffered fractures to my nose and facial bones playing soccer the previous fall, so this was not a revelation.
The bad news was that we still didn't know what was wrong with me.
My symptoms were still roughly the same, though they tended to fluctuate in intensity from day to day. I continued to have a lack of sensation in my feet and shooting paresthesia in my back, shoulders, and arms. This caused general clumsiness and prevented me from pursuing my normal active life. There was something wrong with me, likely related to the enhancement on my spinal cord between my C4 and C6 vertebrae.
The neurologist ordered further tests. I was signed up for a third MRI, this time of my thoracic spine (back), as well as a full metabolic workup (blood tests) and a lumbar puncture examination (spinal tap).
I had the thoracic spine MRI on the morning of January 17th, 2013. By this point, the administrative and technical staff at the radiology center were starting to recognize me and chat even more courteously with me. I'm not sure it's good to be a regular at places like that, but at least the customer service was pleasant. The MRI was taken with and without contrast, just like the previous two. The results came back the same day and showed no abnormalities. No enhancements, no lesions, no bulging discs, no nothing. Whatever was causing my condition was not coming from or affecting my thoracic spine.
The following day, January 18, 2013, I went into the hospital for a full metabolic panel (more blood drawn). The results were uneventful and actually showed increases in my B12 and D3 levels. This however hadn't improved my condition, confirming our belief that it was unlikely to be the cause.
Following the vampirism, I went through a lumbar puncture (spinal tap). This involved lying prone on an operating table while technicians extracted cerebrospinal fluid (CSF) from my spinal cord. They used a local anesthetic (lidocaine) to numb the area between my L3 and L4 vertebrae, then used fluoroscopic (real-time, continuous) x-rays to guide a needle between these vertebrae and associated tissue and into my spinal cord. They withdrew a small amount (13cc) of CSF. This procedure took about 20 minutes, after which they then wheeled me into a recovery room. Spinal taps historically have a bad reputation, but for me it was relatively quick and painless if not pleasant.
The recovery was where the real boredom began. Because of the risks of headaches due to CSF leakage, bleeding, and back pain, I had to lie still while supine for 4 hours afterwards. I read my book, screwed around on the internet, and generally daydreamed for the duration. I suffered no actual complications from the procedure and was happy to go home as soon as I was cleared to leave.
The results for these two procedures came back a few days later. The lumbar puncture report came back on January 22, 2013. It showed no abnormalities or surprises. The one important subject going in, oligoclonal bands (MS indicators), came back negative (in a good way). There were also no signs of tumor cells such as lymphocytes. My test results were unable to show anything specifically wrong with me or help in diagnosing my symptoms.
Similarly, the metabolic panel results were uneventful. A few hormones were slightly above or below normal ranges, but none of these were deemed likely to be related to my symptoms either.
We were no closer to diagnosing the root cause of my lack of sensation, though we were able to eliminate a wide range of possibilities.
Posted by jon at 3:58 PM
The possible diagnoses
My neurologist and I discussed the results of all my tests, including the clinical, imaging, sanguineous, and CSF examinations, on January 30, 2013. She endorsed but could not confirm two possible theories. It could be a lesion caused by localized acute inflammation, or it could be a neoplasm (tumor). She suggested I make an appointment with a spinal neurosurgeon to review the tests and try to come to a diagnosis.
I saw my first expert spinal neurosurgeon on February 5, 2013. He was most interested in viewing the original cervical spine MRI imagery from January 4. He looked through the sequence of images and within about 60 seconds proclaimed that the enhancement was a neoplasm. He thought that it explained my symptoms fairly cleanly. Further, the edema (swelling) that would follow from a neoplasm would explain the signs of stenosis and appearance of bulging discs that were identified in the original MRI as well. He then explained that he had not treated this specific sort of condition in years and referred me to another expert spinal neurosurgeon. His staff coordinated a clinical appointment for me with the new doctor for February 13, 2013.
This was to be my fourth physician's opinion on the subject. We had been through 2 rounds of bloodwork, 3 MRIs, the lumbar puncture, and multiple clinical examinations. Despite all this, we still didn't have much of a diagnosis. We knew a few things that it was unlikely to be, but to actually treat the issue, we needed to know what it actually was.
The new expert spinal neurosurgeon did not immediately agree with the previous one's interpretation. His opinion was that it was spinal stenosis (narrowing), which causes pressure on the spinal cord. He did not think the enhancement necessarily represented a neoplasm or inflammation. After learning of my tendency to throw my body around recklessly, he was more convinced that it was stenosis caused by some sort of traumatic or gradual injury. He recommended that we wait until early March and take a follow-up MRI of the cervical spine, at which point we could compare results with the original MRI of January 4. The 2 months between imaging should be informative, he said, and would help us come to a better conclusion. As my symptoms had not changed dramatically over the last few months, it wouldn't be that risky to wait a few more weeks before making any decisions or formal diagnoses.
Amongst all the doctors, we had 3 reasonable possibilities. It could be inflammation, neoplasm, or stenosis. Only time, more tests, and more procedures could tel.
This brings us to the point in the narrative where I began to inform select close friends and relatives of my condition and attempts to diagnose and treat it. I sent detailed status emails on a semi-regular basis, which I will now repost with minimal editing. The prior blog entries were written with the events further in the past, but I did try to ensure accuracy by referring to all my test reports and notes for dates, terminology, and opinions, and analyses.
Posted by jon at 11:08 PM
June 10, 2013
Feb 14 Email: First Visit with my Neurosurgeon
I had a clinical visit with my second expert spinal neurosurgeon on February 13, 2013. The next day, I put this email together to update select friends and family of my neurological condition and status. Some people knew about my issues from personal conversations, but I wanted to capture my experience in written format.
Date: Thu, 14 Feb 2013 11:14:48 -0500
From: Jon Nathan
Subject: Neurological issues
Thanks for being so supportive as I've tried to diagnose and treat
my strange neurological issues. I saw an expert spinal neurosurgeon
yesterday and he looked at all my previous test results. His
diagnosis is that I probably don't have a tumor, but likely have
cervical spinal stenosis. He did not agree with my previous doctors,
who thought the compression of my spinal cord was caused by a tumor.
Spinal stenosis is a narrowing of the spinal canal, usually caused
by old age, wear and tear, or injury, that compresses the spinal
cord and degrades neurological functions. It's not great, but it's
less serious than a tumor.
The next step is to have an MRI of my cervical spine with tractography
in 2-3 weeks. The doctor will then compare those results to the
previous ones and hopefully make a more definitive diagnosis. If
it's a tumor, it should be clear and more well-defined by this time
and with this methodology. If not, the stenosis should clearly be
the only thing going on.
If it is stenosis, it still may require surgery. But that surgery
is less invasive and less dangerous than removing a tumor. I'm
also looking into non-surgical treatments, which would definitely
be preferred. The doctor advised that I take things easy, which
means that I still can't play soccer for a while.
I'd still like to keep this information private for the time being.
Thanks again for listening to me and supporting me. I really
Posted by jon at 12:01 AM
Mar 8 Email: Cervical Spine MRI with Tractography
I had my second cervical spine MRI, this time with tractography, on March 1, 2013. One week later, I put this email together.
Date: Fri, 8 Mar 2013 12:00:12 -0500
From: Jon Nathan
Subject: Re: Neurological issues
Thanks again for being supportive and concerned. Last Friday I had
another MRI of my cervical spine. They used tractography, which
is a computerized image enhancement technique that attempts to show
the nerves of the spinal cord in more detail. It's commonly used
for brain MRIs, but unusual for the spine. The technical director
of the MRI center said it was the first time they had done it on
the spine, and developed and administered a new procedure for me.
The radiologist at the MRI center prepared a report based on the
images. The findings were somewhat inconclusive, but it seems most
likely that it is not a tumor. They say a tumor is not entirely
excluded, but I think they are just being conservative. It seems
more likely that I have compressive myelopathy, meaning the spinal
cord is compressed by some combination of bulging discs, degeneration
of the uncovertebral joints, stenosis (narrowing of the spinal
column), and inflammation of the cord itself.
The radiologist also compared the images to my MRI in early January,
and stated that the narrowing may be worsening. My own symptoms seem
to fluctuate, but I'm still mobile and not in pain. It does not
appear I will be able to play soccer any time soon.
I have a followup with my doctor in 2 weeks. He'll be able to
better explain the MRI results and propose a course of action. From
my own research, it looks like laminectomy (decompression surgery)
could still be indicated. In the mean time, I am doing yoga,
stretching, and strengthening exercises.
Thanks again for your concern, and I'll keep you posted.
Posted by jon at 12:11 AM
Mar 20 Email: Tumor Diagnosis
I had a clinical visit with my expert spinal neurosurgeon to review my second cervical spine MRI (with tractography) on March 20, 2013. Later that day, I put this email together.
Date: Wed, 20 Mar 2013 22:37:12 -0400
From: Jon Nathan
Subject: Re: Neurological issues
Thanks again everyone for your concern and support. This afternoon
I met with my Neurological Surgery specialist. We reviewed the
images and report of my MRI with Tractography from March 1st. He
thinks that they indicate a tumor. The mass is diffuse, but the
details of the enhancement itself, the surrounding edema, and rate
of progression are consistent with a tumor.
In radiology terms, the word enhancement means an abnormally bright
area in the image. The enhancement is larger than my first MRI in
early January, and the swelling around it is greater too. It's
still relatively small, about 3mm, but it's in the spinal cord and
intertwined with some nerve tracts. This is not the best news,
especially since he originally thought it was not a tumor. But the
differences between my original and recent MRIs lead him to this
I'm going to get a 4th opinion from an expert neurologist. He will
try to determine if it could be any process (inflammation, sarcoidosis,
demyelinating lesion) besides a tumor. I hope to have this in the
next week or so.
Assuming the consensus is that it is a tumor, I'll likely undergo
surgery in a few weeks. The surgical procedure is tricky because
it's a small mass in a delicate space. The neurosurgeon would
perform a laminectomy of my C4-C6 vertebrae and locate and remove
the abnormal cells. Then a neuropathologist on site would examine
the cells under a microscope to try to identify them. Likely the
initial results will be inconclusive, and samples will be sent to
a lab for further tests. The mass itself could be one of many
things, and is likely benign. This identification will determine
future treatment (radiation, chemotherapy, steroids, etc).
My symptoms are still roughly the same, and they still fluctuate a
bit. Whatever this turns out to be, I think I'll be fine in the
long run. Prognosis for this procedure on someone of my age and
health is generally pretty good.
I'd like to continue to keep this information private until I get
a more definitive diagnosis. By that, I mean don't post it to
Thanks again, and I will keep you posted.
Posted by jon at 12:27 AM
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
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.
Posted by jon at 12:32 AM
Apr 17 Email: Surgery!
I had my surgical procedure on April 15, 2013. Two days later, I put this email together.
Date: Wed, 17 Apr 2013 23:32:59 -0400
From: Jon Nathan
Subject: Re: Neurological issues
Hi everybody. Thank you again for your wonderful support and concern.
I went through the procedure as described on Monday. It is now
Wednesday night. There were some risks to the procedure that were
realized, such as further loss of function and neurological deficit.
My surgeon went into my spinal cord and was unable to visually
distinguish any abnormalities. He used imaging techniques to locate
the area of enhancement. He cut out three or four small pieces of
tissue, about 1 mm squared each, and gave them to the neuropathologist
for examination. The neuropathologist noticed gliosis, which is a
symptom of neural damage. The damage could be either inflammatory
or neoplasmic in origin. We won't know results until we get the
full lab report back. At this point in time, the results should be
back tomorrow or Friday.
In the process of removing these tissue samples, one or more of my
neural tracts that control touch sensitivity was severed. This was
a known risk, but it is causing me problems right now. The right
side of my body from the middle of my pectoral muscle to my toes
is numb. I have poor proprioception of my right hand and foot.
This makes it extremely difficult to walk and causes discomfort.
Also, my neck is very sore from the procedure. I have to wear a
hard collar for the next 3 weeks. This prevents me from moving my
neck, so I can't look down at my feet to understand their position
in space. I am viewing this new deficit as a challenge to be treated
with hard work and pharmacology.
I hope to be released tomorrow, but it will likely be to a
rehabilitation facility. I will make those arrangements tomorrow
morning. I will probably be in the rehab facility for 3 to 4 days,
but that is just speculation. I am able to stand up, but my balance
is unsteady because my feet do not get feedback from the ground. I
cannot walk on my own, and probably cannot walk with an assistive
device such as a cane or walker either. Right now, I need two people,
one on each side, to hold my arms while I clumsily walk down the
hall. *Update: I can now walk with a single assistant!* I am on a
full course of medications. It seems that each drug has a side
effect that necessitates another drug. I've been on two different
antibiotics, a skeleto-muscular pain reliever, vascular constrictors,
nerve signal blockers, antacids, steroids, insulin, muscle relaxers,
and painkillers. I am not in pain, just discomfort. Sensation has
been slowly returning to my right hand and foot. I think it will
continue to improve.
I'm grateful to Siri for allowing me to dictate this message. I
definitely cannot type. Apologies for the disjointed nature of
this message. It is hard to edit and reorder.
I was just transferred out of my private room in the ICU to a shared
room in the spinal recovery floor. My roommate is a very confused
old man. He says he has been here 3 years, and he wants to watch
the football game. Redskins! He is constantly babbling. I'm not
sure how aware of his surroundings he is. It's a little sad, but
annoying as anything. I am trying to convince the nurses to bring
him a large dosage sleeping pill. Or even better, bring that for
me. "We're not too far from the airport, you see." And now he's
threatening to take a shit right in his bed to the tune of Mary had
a little lamb. Get me out of here! :)
The next step is to get discharged to the rehab facility. I never
fully understood the concept of relearning how to walk until now.
My brain knows how, but it can't tell my body. There is some degree
of plasticity in the spinal column and brain, but it will take some
time to reroute the signals. Days, months, years, we'll see. I think
that once I get in to a program I can regain function quickly.
Then we wait for the neuropathologist's report. My neurosurgeon
think that if there are tumor cells, they will find them in the
biopsy samples. Then I'll work with a radiation oncologist to
determine an exact radiation plan. If not, and this is just
inflammatory, I'll be put on an even stronger course of steroids.
The uncertainty of the diagnostic process is frustrating and
depressing, but that's how the scientific method works. Develop
hypotheses, devise and execute tests for them, and refine your
understanding of the situation. Exclude unlikely possibilities, and
repeat. There have been some backs and forths in my process. It
makes me long for a Star Trek medical tricorder.
"My birthday is right around the corner, June 6th. Pearl Harbor
I will keep you posted as I learn more.
Posted by jon at 12:44 AM
Apr 19 Email: Inpatient Rehab
I was discharged to a rehab facility on April 18, 2013. The next day, I put this email together.
Date: Fri, 19 Apr 2013 10:17:59 -0400
From: Jon Nathan
Subject: Re: Neurological issues
Hello again everybody. I cannot continue to thank you enough for
your support and concern and kind words throughout my ordeal.
Last night I was discharged from my surgical hospital to a
rehabilitation facility. I am about to go through occupational
therapy and physical therapy. I do not know how long I will be here
yet, but hope to know more after my two sessions today. I will be
focusing on regaining fine motor skills such as dressing, grooming
and washing myself as well as gross motor skills such as walking
I have been progressing every day, and sensation is slowly returning
to the right side of my body slowly. My neck pain is gradually
lessening, and I hope it continues to get better. I'm off of all
intravenous drugs, and everything is by mouth except an occasional
injection or blood draw. One of the strange things that I forgot
to mention yesterday was that I was on a PICC. This is an acronym
for peripherally inserted central catheter , which means that they
pumped drugs more or less directly into my heart. I am trying to
narrow down my medications to the drugs that work in the quantities
and schedule that is helpful.
I am once again in a private room, which is helpful for my sanity.
I do miss my old roommate, but only a little bit. I am sure his
new roommate will keep him company.
I realize that my medical jargon is sometimes dry and boring, but
it is helpful to me to write it out. I'll try to share more of my
feelings and sensations though. Right now, my right hand feels
like the claw in the vending machine at an arcade. I feel like I
could reach in and grab a stuffed teddy bear and drop it in the
return slot. It does not completely feel like it is my own limb.
Proprioception of my feet and hands are slowly returning. I can
better sense where they are without looking at them, which is good
because I really can't look at them. My neckbrace prevents me from
turning or raising or lowering my head. My feet feel like bricks
attached to my ankles. This is actually an improvement over the
cinderblocks they were earlier in the week. I'm still waiting for
results from the neuropathologist.
Waking up in the morning produces a confusing sensation. The
combination of the drugs and the fitful sleep (they wake me up
multiple times a night to perform tests or draw blood or give me
medications) make me forget where I am when I actually do wake up.
It takes me a minute to realize where I am and why I am dysfunctional.
This feeling has been lessening over the last few days, and I hope
Thank you one more time for your offers of assistance and visitation.
If anyone local would like to visit me on Sunday, that would be
wonderful. There's no physical therapy scheduled for Sundays, so I
will be very bored. Please coordinate anything like that with Julia.
I am open to receiving gifts of food as well. The food here is not
awful, but it is not great. One of the side effects of the steroids
is that it raises my blood sugar, so unfortunately I'm not able to
accept too many sweets, or else I need to take insulin, which I
would like to avoid.
Now that I've figured out how to efficiently dictate and edit emails
I will try to send updates every day. Thank you all again and again
for your support.
Posted by jon at 1:01 AM
Apr 20 Email: Perpetual Rehab
I had been in the rehab facility for two days on April 20, 2013. That day, I put this email together.
Date: Sat, 20 Apr 2013 19:47:45 -0400
From: Jon Nathan
Subject: Re: Neurological issues
Hello everybody. Thank you again for listening to me discuss my
condition, procedures, and rehabilitation. The act of dictating
them to friends and family is cathartic to me and helpful in the
recovery process. Reading your encouragements and insights is also
extremely helpful, and I am grateful for them.
Yesterday I went through three hours of physical and occupational
therapy. The physical therapy focused on posture, muscular control,
assisted walking, and transitioning between positions such as sitting
and standing. I'm able to use a walker mostly by myself. We did
some backs and forths down a corridor with mirrors at either end.
This allowed me to see my feet and legs, which was extremely helpful
in understanding where they were in space. I still do not have a
good sense of where they are in my head, and I cannot bend my neck
to look at them. We also focused on posture, including how to
position my hips, shoulders, arms, legs, and feet. It is amazing
that what was once second nature now needs a lot of coordination
and concentration to achieve. I think I am slowly making progress
with this, but my shoulders and neck still get tired and sore easily.
We also did some stairclimbing, which was not too strenuous.
Occupational therapy focused on showering myself, drying off
afterwards, and dressing myself. I am slowly getting better at this
as well. The biggest issue is that I cannot bend my neck again.
This makes it difficult for me to see what I am doing. There are
some orthopedic devices that aid me in this process, such as sock
pullers and object grabbers. I am making use of those.
I'm also working to streamline my medications. I'm trying to focus
on a single time-released painkiller, one or two muscle relaxers,
and then the steroids. There are a few ancillary drugs that I'm
trying to wean myself from. It helps to have a clear head when you
need to concentrate on every single movement of your body.
The rehab process is a great big compromise. There are six major
categories among which I need to strike a balance. Exertion, rest,
toughness, medication, comfort, and posture. It is difficult to
optimize all of these at the same time, but that is what I need to
attempt. There are trade-offs everywhere. I am learning that posture
is actually one of the most important factors. All my time doing
yoga should have prepared me better for this! Posture is one of
the most difficult things to master, but should provide great
results. If I can keep my body in a non-stressful position, a lot
of good will follow from that.
I am still fighting with strong lack of sensation on the right side
my body. It feels like my right arm was bound with heavy cord and
the circulation has been cut off. My natural inclination is to try
to stimulate blood flow by keeping it constantly in motion, but
this actually does not help. Right now I think the best thing to
do is to closely watch my motion and try to will the neural connections
to regenerate. I am not sure if this is actually scientific, but
it is my current method. My doctor's analogy is that my nerves are
like a classroom of students with a substitute teacher. The substitute
teacher needs to regain control of them, otherwise they will just
run around like crazy. I will ask him more about this.
Today my neck is still sore, but I think it is slowly getting less
so. Finding good posture, good medications, and just allowing time
for the surgical site to heal seems to be helping. This is still
one of my greatest obstacles. I have to wear my hard collar for a
total of three weeks, so I hope to gain more relief by then.
Today's physical and occupational therapy sessions were also
productive. I had an hour of physical therapy first. We focused on
stretches, posture and positioning, and body awareness. Then an
hour of occupational therapy focused on manual dexterity and regaining
control of my hand-eye coordination. After a break and lunch, I
had a final hour of physical therapy. We did more stretches and
posture work. We also started working on unassisted movements, such
as standing still without my walker. We also did marches in place,
with minimal balance support from either a bar or the wall. Both
therapists emphasized important underlying aspects of movement,
coordination, and positioning. They also gave me a list of exercises
to perform on my own which I will do tomorrow. There are no organized
sessions on Sundays, so I will be exercising by myself and resting.
On Tuesday, there will be a meeting between the therapists, nurses,
and administrative staff at the rehab center. They will discuss my
progress and prognosis. At that point, we will have a better
understanding of how much longer I need to stay here. The factors
involved are my progress, goals, personal safety, and the safety
and support in my home environment. This will determine my further
treatment and discharge plan. I probably won't know a lot more until
after that meeting.
In the meantime, I am working hard to follow the plans of the
therapists and doctors. I'm taking some more time off from work so
I can recover and rehabilitate properly. Once again I really do
appreciate everyone's support and encouragement. I will emerge from
this, it will just take time and hard work.
Posted by jon at 1:07 AM
Apr 21 Email: Even Patients Get a Day Off
At this point, I started writing daily email updates. I sent this one just after midnight.
Date: Mon, 22 Apr 2013 00:27:03 -0400
From: Jon Nathan
Subject: Neuro Update: Sun 04/21
Hi everybody. I'm going to start a new thread every day for status
updates. Please keep the responses, encouragements, and requests
Today was a free day. I focused on static therapy. I did seated
exercises, mostly stretches and extensions, and manual dexterity
exercises as suggested by my physical and occupational therapists
respectively. I also rested quite a bit. I think it was productive,
as I relieved a lot of stress. I was also grateful to receive my
visitors today and yesterday. It means a lot to me that you were
able to come out and see me. No pressure to anyone, of course. I'm
just expressing gratitude.
I am also working hard to understand how each medication affects
my mental, physical, and neurological state. That may sound sort
of goofy, but I think being in touch with my body has to be a part
of this process. Each drug is prescribed for certain symptoms, but
symptoms often are fuzzy, or overlap, or are not easy to pin down
or describe. The staff here understands that I'm taking an active
role in my care, and they're giving me a good degree of freedom to
influence my treatment plan and schedule. For instance, I cleared
myself of interruptions from 10 PM until at least 6 AM. Rest has
to be a part of my recovery process, and not being awakened at 4
AM for blood sugar or blood pressure or oxygen level tests will
allow me to sleep more soundly.
Tomorrow I will dive back into active therapy. I think this will
become easier as I retranslate these cues to muscle memory. Maybe
I will come out of this experience with better posture and body
control than before.
My pain and discomfort symptoms are still fluctuating, but I think
that the peak amplitude of the curves may be flattening. As I have
said frequently, neck and shoulder pain are currently my biggest
obstacle. If I can continue to get this under control, it will go
a long way towards discharge. I've also started laying on a hot
pack, which seems to help relax my muscles too.
I'm also working on regulating my bowels. I won't say too much more
about that unless you ask me privately ;-)
One more minor issue I am working on is the lack of sensation in
my right abdomen, back, buttocks, thighs, and calves. I have put
a lot of effort into regaining sensation in my right hand and foot,
and I have felt some occasional burning pain in those extremities,
which is a good thing, but there is more to it than that. The
numbness in my right buttocks causes me to feel off-balance when
I'm sitting or lying, as if there is a hole cut out in the seat
below me. With some effort of concentration, I can will myself to
be comfortable. It's just another component of the process. I'm
going to ask the doctor more about this tomorrow as well.
I know I've said this before too, but relearning all of these things
that were once innate is not easy. I have a great amount of respect
for people who have been through similar circumstances. I cannot
imagine what actually losing a limb would be like. I am trying not
to overly dramatize my situation because I really think, in the
grand scheme, I am not in that terrible shape. I really appreciate
everyone bearing with me as I try to sort out my thoughts, feelings,
and intentions for my healing process.
One more thing to expect next week is the return of medical jargon
and treatment plans as opposed to some of the emotions and feelings
I've been expressing recently. I'm still awaiting the neuropathologist's
report, which will hopefully provide insight to the root cause of
my issues. If the treatment plan includes invasive therapies, so
be it. If it's just physical rehab, posture, willpower, and time,
I can handle that too. It is always difficult not to know, but I
hope to know more soon. If results continue to be inconclusive, I'm
not sure what the next steps would be. Probably more steroids rather
than radiation or chemo therapy treatments.
The food here continues to be edible. Not amazing, not awful, not
flavorful, but healthy and plentiful. I've always been a good eater
within my parameters, and I think I've gained a bit of weight here.
Part of that may be due to the bowel regulation that I discussed
earlier, but I'm working on that as well. I understand how to keep
my salt and sugar levels reasonable, so I am now willing to accept
offers of savory and sweet snacks :-). If I consume them in moderation,
I think I can avoid insulin and blood pressure medications.
Now that I've cleared my mind and rested my body, I'm going to try
to get a good nights sleep. I'm looking forward to working hard,
fixing myself, and going home soon to my wife and little girl.
Thank you again and again for listening, and I will try to write
Posted by jon at 1:13 AM
Apr 22 Email: Therapy and my Intestines
Date: Mon, 22 Apr 2013 17:36:04 -0400
From: Jon Nathan
Subject: Neuro Update: Mon 04/22
Hi everybody, continued thanks for everything.
Today I worked very hard. I had to physical and one occupational
therapy session. PT continues to focus a lot on posture and attention
to muscular and joint alignment. I also did a good amount of walking
without a walker. I need to concentrate on about eight aspects of
my gait to move effectively. This is difficult, but that is what I
have to do. I'm getting better at controlling the pain in my neck
and shoulders, which helps as well. I am starting to be able to
view my legs and feet a little more while walking, which helps with
my proprioception. I am sore and exhausted now as a result, but I
think it is for a good cause. One phrase that I'm happy to be on
top of is, "I would like my Valium now please." I will rest and
recover for the remainder of the evening.
OT focused on more fine motor skills. Picking up and manipulating
small objects with my right hand is difficult because of the stiffness
in my fingers. I think I have neglected this area little bit because
my left hand is in extremely good shape. But I need to stop
compensating and concentrate on regaining right-side dexterity. I
will be brushing my teeth and eating at least part of my meals with
my right hand in an effort to address this.
One more fun detail is that my bowels are still not moving regularly.
Trying to find a comfortable position on the toilet is difficult.
All of my old tricks cause discomfort. I will ask the nurse for
Still no word on the pathology results. I'm continuing to pester
the doctors about that. One unrealted item that I've neglected to
discuss until now was that I had something of an abscess on my right
elbow prior to this procedure. It was swollen and spongy and ugly
looking, but it did not cause much discomfort or problem. Somehow
through the course of all the treatments, it seems to be clearing
up on its own. It is good to know that I do not have elbow cancer
on top of everything else :)
I'm also working more with hot and cold therapy. A warm compress
on my back is relaxing, and I hope to stimulate sensation with a
cold ice pack on the right side of my body. The doctor thinks that
my extremities and core are regulated by different neural tracts,
and that it is a similar process to retrain the students to listen
to the substitute teacher. Meaning that there is not much I can
do except take the time and work at it. Recovery in this specific
area is not expected to go quickly, but it is one of the more
The doctor and therapists seem to be encouraged by my progress.
Tomorrow is their team meeting where they will discuss my prognosis
and hopefully discharge plan. It seems reasonable to me right now
that I could leave here by the end of the week, but that is obviously
not my decision. I would probably need additional time at home
before I could return to anything resembling a normal life, but it
will still be good to get out of the inpatient rehab center. And
I've said this before, but when I can take off my neck brace, I
think a lot more things will fall into place.
Thank you again and again for listening to me discuss this. I will
continue to update with my thoughts and progress
Posted by jon at 1:15 AM
Apr 23 Email: Light in the Middle of the Tunnel
Date: Tue, 23 Apr 2013 19:55:05 -0400
From: Jon Nathan
Subject: Neuro Update: Tues 04/23
Hello again everybody. I cannot keep thanking you enough for your
Today was an eventful day for me. We started with early morning OT.
My therapist push me very hard, and made me realize how much work
I still have to do. She thinks the fine motor skills in my right
hand will return, but it will take time and effort. I'm glad to be
able to compensate with my left hand for now, but I know that that
is not the long-term desirable state.
Today's physical therapy focused on more balance, core strength,
and posture. I'm getting better at this slowly. I've said it before,
I know, but once I get back some sense of where my right leg is in
space, and can take off my neck brace, I will be even better. I
think I still have two more weeks with the brace, but I need to
confirm that as well. We also did more walking without the walker.
I still need a human assist, but it is getting easier. We also
discussed home shower techniques, such as the use of a shower chair
and possible handlebar. This all translates directly into my release
from the rehab clinic.
Sensation continues to return slowly to my extremities and core.
The doctor confirms that there are no real magic bullets besides
hard work and perseverance. And maybe stem cells ;-)
Today all of the staff had their patient evaluation meetings. My
case manager gave me my feedback, and it is generally positive. I
have an expected release date of this Saturday, 04/27. This is in
line with my original expectations, but it still leaves a lot of
work to do. I will continue my present rehab plan here at the center
for the rest of the week. When I get home, I will need more therapy.
We are trying to coordinate that with an outpatient program at a
local hospital. The initial expectation is a few hours a day, 2 to
3 days a week, of assistive therapy, but it is not entirely decided
This outpatient therapy is intended to bring me back to full
functionality, so I expect to reintegrate many parts of my previous
life as I go through it. Unfortunately, I don't think that means
playing sports anytime soon (watching sports should still be fine).
I will probably be able to work again soon, but I don't know
timelines. I will put those together with the help of my original
doctors and new therapists. I am grateful for the professionalism
and support that I'm receiving from my work in this regard. I will
still be on a good amount of medications for the near future, which
makes extended concentration difficult. My focus will be comfort
and progress in the aftermath of this procedure.
We are still awaiting the neuropathology results from the original
procedure. I don't know the source of the delays, but I am asking
for updates every day. Once we know what the root cause was, we
will continue to fine-tune our treatment plan. Future treatment
seems likely to align with the therapy plan that I have just
discussed, but we will have to see.
Despite the continued uncertainties and difficulties, I still think
that this was the right course of action to take. I understood the
risks going in, and the benefits were tangible. Sometimes things
just don't work as perfectly or quickly as one would like. I'm
trying to strike a balance with optimism and realism.
I'm going to get a lot of rest tonight so I can push again tomorrow.
Maybe I can ask for some vodka on top of my painkiller nightcap
;-). That would definitely help me sleep even better!
Again, thank you for all your support. It motivates me to know
that I have people helping me through this.
Posted by jon at 1:23 AM
Apr 24 Email: Urine Trouble, Mister
Date: Wed, 24 Apr 2013 20:38:20 -0400
From: Jon Nathan
Subject: Neuro Update: Wed 04/24
Hi everybody. Continued thanks for your continued support. With my
new goal of meeting my upcoming discharge date, I am working hard
to make progress and go home.
This morning my occupational therapy session went pretty well. I
was able to manipulate small objects that I had not been able to
the previous few days. My OT is challenging me with more and more
tasks and giving me more homework. I think this is a good sign.
Afternoon OT focused on more personal tasks such as bathroom posture,
showering, and grooming. I am getting a lot better at these things.
I will probably need a shower chair for home, but that should be
the extent of it.
I am also gaining a lot of confidence with my physical therapy
sessions. I am receiving less assists in my movement. We are also
slowly ratcheting up some of the resistance in the stability
exercises. With concentration, I'm doing a much better job of
walking and building towards a normal posture, even if there is
still a bit of cognitive dissidence between my brain and body. We
continue to work with mirrors, which is slowly helping me regain
my proprioception. The afternoon PT session included some outdoor
walking on unsteady services. We did ramps, grass, curbs, and
generally uneven terrain. They're not yet ready to allow me to
resume my parkour, but it is on my (very) long-term goal list.
One amusing story that I forgot to relate yesterday was a "urine
trouble, mister" incident. After my early-morning OT session, my
therapist forgot to remove her safety belt from my waist. Every
time I need to use the bathroom, I am supposed to call for a transfer
assist. Sometimes the assist takes a few minutes, but I'm supposed
to wait for them for safety reasons. If I can't wait for the assist,
I have a small urinal bucket that I can use. This time however the
combination of the assist delay and the safety belt precluded me
from preparing myself and using the urinal in time. My OT was
sufficiently horrified and apologetic about the situation, but I
was still a bit upset for making a mess. My urinary sensitivity,
control, and anticipation is still not at 100%, but I think it is
slowly getting better.
There have still been no updates about the neuropathology results.
I continue to request updates regularly. I hope to know more soon,
but unfortunately this has been a black hole so far.
Some people have asked how I am mastering Siri. The truth is that
I'm actually using the microphone dictation icon within the apps
rather than Siri herself. That seems to work a lot better than
trying to ask her to do things directly.
Again, thank you so much for your support. Please keep sending
notes, pictures, etc. I will be sharing some of the snacks with the
staff here too. I really do appreciate it, and I am glad to be able
to pass the gratitude on. If I haven't replied directly to one of
your messages, do not worry. I have read it and at the very least
taken it in :-).
Today was a very positive day, and I hope to have another one
Posted by jon at 3:08 PM
Apr 25 Email: A Day of Challenges
Date: Fri, 26 Apr 2013 00:44:10 -0400
From: Jon Nathan
Subject: Neuro Update: Thurs 04/25
Good morning everybody. I had composed the last few daily updates
in the evenings to recap my day. I'm going to start early today
because there were some extra fun challenges that I wanted to be
sure to document.
The doctor renewed his concern about blood clots in my calves, so
he put me back on the leg massage devices and blood thinners. The
trick is that the devices are sleeves that go over my calves and
attach to an air pump at the foot of my bed. This means that I am
directly attached to the bed. I require assistance to detach the
devices. You may see where this is going. In the middle of the
night, if I need to urinate, I need to be extra aware and timely
about my bathroom assist request. With all the extra pressure on
my bladder, this happens frequently last night. I was able to keep
everything neat and under control, but it was an effort.
The second challenge this morning was that my breakfast order was
lost. I ended up with a default menu, which was not really to my
liking. I ate enough, and I continue to eat enough, but it just
threw me for a loop. I guess this is a minor mental challenge that
I will need to push through. My regular food lady is back on her
schedule today, so she has hopefully straightened things out for
me for the rest of the day and tomorrow. Again, minor issues, but
it just means more to concentrate on. I suppose that is a good thing
in the long run. I need to make an effort to be on top of all aspects
of my care, including nutrition.
This morning's physical therapy went relatively well. The therapist
is challenging me a lot more. I did not use the walker at all, and
I focused on full body balance and core exercises. One therapist
that I had not seen before made a minor crack about my instability,
but I do not trust her. I think I am continuing to make progress.
This afternoon's PT session will include more outdoor work, including
uneven territory, ramps, steps, and general navigation without a
walker. I am also being upgraded (*update: I now have been upgraded!)
from in-room required assistance to in-room independence. I have
been slowly pushing this for the last few days, and I think they
are coming around to my level of confidence.
Next up is more occupational therapy. I hope to continue to be
challenged during this session. I will pick up this narration in
This afternoon's OT was a short session. We went over the fundamentals
of a bunch of different exercises, and put together plans to continue
them once I am discharged. We did a lot of silly putty and clothespin
manipulation. My therapist thinks that I am making progress in
controlling multiple fingers at once. Earlier this week, each finger
ran riot on its own. Moving multiple fingers together towards a
common goal is slowly becoming possible, but requires a lot of
concentration. I'm also trying to regain some strength in my wrist
which apparently disappeared.
Then we had a strenuous PT session. We did a lot of outdoor
maneuvering. I think I am getting stronger. I am testing the
sensations on all parts of my feet, and trying to balance on the
edges, balls, heels, and soles of my feet. Things like standing
on my toes, rocking on my heels, and rotating on my ankles are
actually not simple. This will continue to require practice. Also
maintaining alignment between my two legs continues to be difficult.
This is one of those things that should get better once I am able
to remove my neck brace and view my legs. I'm continuing to
concentrate on all aspects of motion, including foot position, knee
bend, quad contraction, hip position, transabdominal contraction,
and neck and shoulder position. I'm sure I haven't consciously
thought about any of these things previously. My therapist continues
to push me to walk without the walker, and is teaching Julia how
to watch my posture and balance to be able to correct me as well.
I am pushing hard through all of these training sessions. Julia had
a meeting with the rehab doctor, and he expressed that he was pleased
with my progress but afraid that I may be pushing myself too hard.
He is afraid of some sort of fall or setback if I tire myself out.
I guess I will need to incorporate more rest into my sessions even
though my inclination is to just keep going. As always, striking a
balance is important.
My meals are back on track. I'm not sure what happened this morning,
but the nice lady fixed things for me. My food continues to be
plentiful and healthy, if not necessarily tasty. I am incorporating
even more fiber and water into my diet. I also realized that some
of the stool softener pills that I had been taking may have been
expired by two years, so I am taking new ones. Hopefully a new
future of regularity awaits me!
I think I am also finding a good balance with my pain medications.
I am now able to concentrate and remember more things that I would
have discarded over the last few days. It still is easy and
pleasurable to zone out and rest though. Modern medicine may not
be able to diagnose everything, but they have made some inroads in
palliative relief. I realize that my situation and condition is a
lot better than some people that are here. I am trying to be
friendly and cheerful and supportive to all of the other patients
and staff. Maintaining a positive attitude has always been part
of my rehab plan, and I am now making an extra effort to share that
with those around me.
Still no word on the neuropathology results. We specifically asked
the doctor what's going on, but he said that he had no updates and
did not know if the delays were due to complications, backlogs, or
any other factors. Or maybe the original timeline was just inaccurate
or unrealistic to begin with.
Tomorrow will be my last full day at the center. I will continue
to work hard but incorporate more rest in my sessions. I am excited
to be able to go home on Saturday morning. It will be great to be
back in familiar surroundings with my wife, kid, and cats :-). I
am a little nervous as to how Sylvie will view me when I return.
We have always had a physical, active, and fast-paced relationship.
I only hope that she does not knock me onto my ass ;-). The cats
should be happy to sit in my lap again though. I am not as worried
We are working with the rehab center's case manager to coordinate
my future outpatient therapy. It will likely be at the center where
I had my original procedure, so I will be in close contact with my
original doctors and physicians' assistants. Hopefully this will
get me closer to medical results and future treatment plans. Whether
it's good news or bad news, I will try to attack it with the same
attitude and enthusiasm that I have attacked this rehab so far.
While incorporating a little more rest ;-).
Thanks again to all for reading this and supporting me. I'm sorry
if some of it may sound redundant, boring, too personal, or
self-indulgent. I'm just trying to get through this as best I can.
Much love to all of you.
Posted by jon at 3:31 PM
Apr 26 Email: Last Day at the Facility
Date: Sat, 27 Apr 2013 08:49:20 -0400
From: Jon Nathan
Subject: Neuro update: Fri 04/26
Good evening everybody, and thanks for sticking with me. It is
Friday night, and my last night here in the rehab clinic. I'm looking
forward to going home tomorrow morning.
Today was actually a bit of a rough day for me. I slept extremely
poorly last night because I had to wake up to urinate three or four
times. That I am allowed and enabled to navigate to the bathroom
on my own just made it worse. The doctor ran some blood and urine
tests, but was unable to identify anything interesting. Maybe it
was just a culmination of all the drugs, stress, and work that I've
been doing for the last week.
Being so exhausted caused me to struggle through my early-morning
OT session. I don't think I regressed, but I don't think I made a
much specific progress. We went over a lot of previous exercises
and set up more for my upcoming discharge.
Morning PT was also difficult. With so many things to concentrate
on, and my mind a bit sluggish, I was a little sloppier than usual.
But I tried to get through it while focusing on some specific
muscular control, including back and shoulder tension release. We
went over exercises for my discharge as well.
After morning therapy, I underwent a routine discharge leg sonogram.
This was to confirm the lack of blood clots or DVT. I used this
exam as a opportunity to take a quick nap ;-). I got my blood sugar
and energy levels back up with some coffee and fruit at lunch. I
declined the heavier portions of my meal, including the pizza and
extra cereal. Maybe part of my intestinal issues have been that I
have just been eating too much. I cut back at dinner too, so maybe
that will help.
Afternoon OT was a brief evaluation of my ability to shower, dress,
and groom completely independently. I had no problems doing this.
Since this had been one of my original goals, I guess I can be
pleased with my progress.
Unsurprisingly, we still don't have any neuropathology results.
This weekend I plan to continue the exercise routines outlined by
my therapists. Next week, I will have in-home therapy provided by
contractors. After that, I will be participating in an outpatient
rehab program at my local hospital. I don't know the frequency or
duration of that yet.
I'm sorry if today's update seems a little weak. A number of factors
conspired to tire me out for the day. I'm continuing to come to
grips with my new condition. There are times when my head feels
completely clear and I don't understand that there's anything wrong
with me. But then I try to do something simple, my body does not
respond, and I am jolted back to reality. I am trying to stay as
positive as ever, but as I've said before, I am still trying to
find a reasonable balance between all of the factors. I may need
to take more note of the old adage, "work smarter, not harder."
Don't worry though, I will not fall down a hole or regress. It will
just take time, effort, and smarts to overcome.
Once again, continued thanks for your continued support. I really
appreciate everyone's encouragements and kind thoughts.
Posted by jon at 3:52 PM
Apr 27 Email: Goin' Home
Date: Sat, 27 Apr 2013 22:32:57 -0400
From: Jon Nathan
Subject: Neuro update: Sat 04/27
Good evening, everybody. Once again, I cannot thank you enough for
all your support through this process.
This morning I was successfully discharged from the inpatient rehab
clinic. The doctors, nurses, and staff were all very helpful in
getting me on my way. They summarized my near-term therapy, pharmacy,
and recovery plans. They also instructed me on the medium-term
therapy that I need to pursue. Once that gets underway, I will pick
back up with my original doctors and get back on track with my
medical plan. That will be over the next few weeks. For the rest
of this weekend, I will be doing a lot of resting and simple
exercises. I may even take an excursion to the Sunday morning sports
bar to watch some soccer.
Sylvie was ecstatic that I was home. She gave me princess Band-Aids
for the few minor scratches that I had picked up on my fingers and
declared me all better. She also put some stickers on my walker
for identification and healing purposes. I was a little emotional
about the reunion, but was able to keep it mostly together. It was
great to be able to read her books and put her to bed tonight. I
am not supposed to lift more than 10 pounds, but I could not help
myself and had to pick her up and hold her. I don't think I caused
myself further damage by doing this, don't worry.
The cats were all over me too. They claimed no one had fed them or
paid them any attention while I was gone. They assisted with my
I want to send a special thank you to my family. My wonderful wife
has kept a great attitude and a helpful spirit through this all. I
could not have gotten through this without her. My mother and
in-laws have also been very helpful in keeping the house and kid
in shape while I was gone, and I appreciate this greatly as well.
I am relearning how to navigate my house. The walker is not the
easiest way to get around, but I'm using it as much as I can. I'm
also using handholds and doing a lot of shuffling.
I also started eating some of the wonderful food that arrived while
I was gone. I really appreciate all of the thoughtful gifts, and
will endeavor to eat them all. I think I will need a new workout
plan when this is all done.
I may not send daily updates going forward, so do not worry if you
don't see something from me each day. I will write updates upon
major milestones though. Hopefully those will be relatively quick
Going through this process has been humbling, challenging, and not
always as rewarding as I would have liked. Your support through it
all has made it much easier.
Posted by jon at 3:57 PM
May 5 Email: Waiting at Home
Date: Sun, 5 May 2013 23:51:03 -0400
From: Jon Nathan
Subject: Neuro update: Sun 05/05
Hi again everybody. Sorry I have been out of touch for a while, but
I have been busy, and there have been no substantial updates.
In-house therapy turned out to be a bust. There was not a lot of
time to do it, as I am transitioning to outpatient therapy at my
local hospital clinic. I'm continuing to do the routines that I was
originally given, for both occupational and physical therapy. I am
slowly seeing progress, more so with the physical aspect. Occupational
will continue to be difficult as I attempt to regain nerve sensation
and control in my right hand. They continue to say it will take
practice and time, and I believe them.
One exciting part of my rehab is that my wife braved a scary
craigslist encounter to procure a full-length mirror for me. She
was undaunted by a deserted house, a creepy, snoopy, elderly neighbor,
and general bad vibes. The mirror itself is crucial for helping
me regain proprioception of my legs.
I had a follow-up doctor's visit last week, but ended up with more
unanswered questions. I will get a copy of my neuropathology report
on Monday. The informal version was that there were no significant
tumor cells found. There was a very small possibility of low-grade
tumor cells, but that does not appear to be the real cause. I am a
bit concerned that the report will be inconclusive, but we will
see. I'm also awaiting confirmation on the date that I can remove
my neck brace. The first two things I will do when that happens
is to get a professional shave and a massage! Then the third will
be to find a hot tub and soak in it for two straight hours.
My doctor wants me to schedule a follow-up MRI in four weeks. He
wants me to gradually lower most of my medication quantities and
schedule to about half of my current amounts by that time. My
general discomfort is becoming less, so I am amenable to this.
I wish I had more answers and news, but unfortunately, this process
is not quick or easy. I am working hard to get better, but as I've
said quite a few times, it looks like it will not be fast.
I am continuing to take time off work to concentrate on my
rehabilitation. I am grateful that they have been flexible and
understanding through this process.
Thank you again for your continued support. I will make more updates
as events unfold.
Posted by jon at 4:00 PM
May 14 Email: More Questions than Answers
Date: Tue, 14 May 2013 09:51:38 -0400
From: Jon Nathan
Subject: Neuro Update: 05/14
Hi everybody. It's been a while since I've sent an update, so here
we go. Once again, thank you for your continued support.
Last Monday, I received my copy of the neuropathology report. It
was sparse and not very decisive or clear to me. I had an appointment
with my neurologist, who is contacting the pathologist to try to
understand more details. The short version was that there were no
tumor cells found, but there were markers of antitumor proteins and
general cell growth proteins. I am trying to get a better understanding
of if these proteins are common, or if they only appear when there
are tumor cells to battle. If that is the case, and they have
combatted a low-grade tumor, then that would presumably be a good
thing. But that is just speculation right now. They also found
chronic acute inflammation, which may be the most likely underlying
cause. I'm still trying to get a better understanding of the entire
I have a follow-up appointment with my neurosurgeon on May 21 as
well. I hope to be able to remove my neckbrace at that time. It
continues to be uncomfortable for me, but I am working hard to
control the posture and tension in my shoulders and neck to relieve
I'm continuing to do at home physical therapy. I am increasing the
repetitions and duration of my physical therapy sets as I get better
at them. I am also incorporating more rest and drinking more water
between the sets, which helps as well.
I have an outpatient physical therapy appointment on May 21 as well.
We will see how this goes, especially in light of what I am currently
doing on my own.
Occupational therapy continues to focus on manual dexterity. It is
difficult to quantify, but it seems like I am getting a little more
dexterous with my fingers. Sensitivity is still definitely not
I'm sorry if this message isn't very informational or interesting,
but the recent process has not been all that interesting or
informational for me either. I'm continuing with my rehabilitation
while slowly healing and waiting for medical advice. In general,
I feel good, and am in good spirits while I work through this
Posted by jon at 4:07 PM
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
Thank you again for reading through this, and I will continue to
send updates as important events occur.
Posted by jon at 4:18 PM
May 29 Email: Slow Progress
Date: Wed, 29 May 2013 21:05:29 -0400
From: Jon Nathan
Subject: Neuro update: Wed 05/29
Hi everybody. Thanks again for listening to me and supporting me
while I continue to work on my fun issues.
The last week has gone really well in general. I was able to remove
my neck brace for four hours each day. I did two hours in the morning
and two hours in the evening. I also kept it off for meals and
showers. Showering without it is especially great because I can
scrub my neck without any worries. It's amazing how much this freedom
of motion this helped my coordination, proprioception, and mood.
It also takes a ton of tension off of my neck and shoulders. This
is what I had been waiting for for a long time. I am also backing
off my medications. This seems to be going well.
I had a real shave at a luxury barbershop the following day. It
felt great to just lean back and get fully cleaned up. I asked for
a creative haircut, but the barber just trimmed it. Maybe I will
get a mohawk next time.
This week, I get eight hours a day without the neckbrace. I am doing
four hours in the morning and four in the evening. My neck continues
to feel good and I am able to expand my range and quicken my motions.
I am still sleeping with it, but I've gotten used to that at this
I'm continuing to do my physical therapy. I had an evaluation with
a trainer last week, and a actual session this morning. She is
challenging me with balance exercises and limited input stimulus.
Specifically, doing things with one or both eyes closed. She also
bumps and disrupts me while I'm doing the exercises. The goal is
to get my visual, vestibular, neurological, and muscular systems
to all work together. I am also trudging less, expanding my stride,
and walking a bit more normally. I am 95% walker-free at this point
as well. I bring it with me in the car when we go out. We have had
a few excursions around the neighborhood and to the mall where I
haven't used it, and I feel comfortable and confident without it.
It is getting harder to justify the handicapped tag on our car.
My occupational therapy continues to make minimal progress. My right
hand is still numb and has poor sensation. I continue to do my
exercises, but this will be the longest part of my rehab. I am
getting better at doing normal tasks, like eating, with my right
hand. I need to use chopsticks left-handed, but it turns out that
I'm actually good at that. Becoming right-handed again is requiring
a great deal of concentration, but I am putting in the effort.
I had a follow-up with the expert neurologist. He had a conversation
with the neuropathologist who examined my biopsy samples. The
consensus seems to be that this really was some sort of inflammation
or lesion. The neuropathologist suggested we could always do another
biopsy, but my neurologist politely declined on my behalf. I still
don't have any good explanation as to how this all came about. All
I know is that I need to continue to work hard, work smart, be
patient, and I will get better.
Thank you again for supporting me through this process. Your feedback
and encouragement mean a lot to me. I will continue to slowly get
Posted by jon at 9:34 PM
June 10: Continued Progress
Now that I have a relatively good understanding of my condition and prognosis, I am going to make these updates public. Instead of sending email to a small distribution list, I will now post updates in this blog. I also wrote entries describing the onset of my issues and early diagnostic efforts, which I hadn't put in writing before. I converted all of the update emails into blog entries, so the whole story is here now. Future updates will be as well.
The last two weeks have been busy for me. My PT has been very strenuous. In addition to my core, leg, and balance exercises, I have added back and neck exercises. I'm continuously modifying and making my routine more difficult. I'm also cutting back on some things as I integrate the treadmill. I started by walking one-hour 5K's. After three of these, I was confident enough to try to jog. I've done two 30-minute two-mile jogs so far. It's not a very fast pace, but I am focusing on my form. That is, I am actually lifting my feet and knees and not just walking. If you use mapmyrun, you can see my workouts there. I've also added more stretching to my post-workout routine. If I don't stretch, I am very sore the next day. I'm also 100% walker free. It's still in the trunk in case of emergency, but I haven't used it in about two weeks.
I also rode my bike again. I did a 5 mile circuit of the neighborhood, on both streets and trails, without much problem. I have a few scrapes on my leg from some spinning pedals, but in general everything went well. I hope to be able to pull Sylvie in the bike trailer this summer. That is one of my most serious goals.
I am making very slow progress with my manual dexterity and sensitivity. My right hand still feels numb, swollen, and generally difficult to coordinate. My OT thinks I'm making some progress though. At my last session, I showed improvement in the grip strength, peg insertion, and block flipping tests. The tests related to sensitivity, like identifying objects or localizing sensations, have not significantly improved. We knew going in that this would take the longest of all of my faculties to regain, and that is still holding true. I've also figured out that sitting on shitty chairs contributes to the numbness in my feet. I have been using a cheap folding chair, but I am going to stop. I ordered a nice new office chair which should be here soon. In the meantime, I will sit on cushioned chairs.
As of today, I only need to wear my neck brace for eight hours a day. That means that I will just sleep in it, and not use it during the daytime. I'm used to sleeping in it, so that's not a problem. The real trick would be to actually get eight hours of sleep :). Next week though, I will be neckbrace free. I will continue to regain strength in my neck muscles with my PT routines.
I'm also backing off most of my medications as per my doctor's schedule. I still feel good in general, but we may have been too aggressive with some of them. I've had a few recurrences of my original paresthesia, so we may need to continue to adjustment my pharmaceutical schedule.
I'm going to try to drive around the neighborhood tomorrow. I'm an excellent driver, slow on the driveway. My vision has been clearing up as i backoff the medications, so I'm confident that it will go well.
In general, I feel pretty good. I am mobile, coordinated, and healthy. I still have a lot of work to do, but I'm ready to do it. Julia thinks that I have been overdoing things the last few weeks, and she's probably right. Without my neckbrace, I feel like I am my normal self, and that has caused me to push harder In my PT, OT, and chore list. I need to rest more during my routines, get more sleep, and better prioritize my tasks.
Once again, thank you all for reading this and offering support and encouragement. I really appreciate it, and it helps my rehab and recovery. Now that this information is publicly available, feel free to discuss it with others. I'd prefer not to make a big deal out of it though. It's a difficult situation, but not as bad as those many others face. As long as I continue to work smart, I will continue to get better.
Posted by jon at 10:44 PM
June 27, 2013
June 27: Working, Driving, and Chugging Along
The last two weeks have been especially busy for me. I returned to work on Monday, June 17. I'm trying to reintegrate my work life with my personal life and rehab routines while working from home. It is difficult to strike a balance, but I'm trying hard to do these three things in addition to getting enough rest.
Work itself is not so bad. The project I had been running was canceled while I was out, so I am trying to find new ones to attach myself to. There is enough work to go around though, so this is not hard. The difficult part is just getting back into the routine. The emails, meetings, conference calls, and the work itself all keep me very busy. Typing continues to be difficult for me. I'm using my left hand and the index finger of my right hand. It is frustrating because I used to be a pretty fast and accurate typist. Now I am extremely slow, make lots of mistakes, and need to review everything I type. I can make mistakes in an email and it's not the end of the world. But if I'm actually doing computer work, syntax is everything. Small typos can cause large problems. I need to be extremely careful with all of my computer work. Of course I always needed to be careful, but it was a lot easier before. Luckily my job doesn't require me to make actual production changes. Mostly I am planning projects and writing documents, scripts, and automation tools. This limits the scope of what I can break.
My rehabilitation continues as before. I'm done with my outpatient occupational therapy for now. I hadn't been thrilled with my OT's guidance, so I am not unhappy to be done with her. After my next neurosurgeon visit, towards the end of July, we will revisit future OT programs. I'm still doing my manual dexterity exercises, but progress is slow and hard to quantify. My symptoms still fluctuate, and there are days when my hand feels like Captain Hook's. Some days are better though and I feel almost normal at times. Right up until the point where I need to pick something up, or type, or even just remove my keys or wallet from my pocket. Then I am reminded that I still have problems. In the grand scheme of things, I'm actually in good shape. I'd love to talk to someone with a prosthetic hand to see how my situation compares to theirs.
My physical therapist is frustrated with me. At my last visit, I was a bit of a mess. I had rolled my ankle a few days before, and I re-rolled it during our session. I had also gotten an irritant into my eye the night before, so my vision was affected. She thinks that I am going too fast in some areas, like strength-based exercises, and not paying enough attention to basics like balance and control. She did not like the fact that I am doing regular push-ups when she had recommended wall push-ups. She does not like that I am jogging outdoors when she thinks I should be doing tightrope walks. The balance and core exercises have gotten pretty boring, and I admit that I have gotten aggressive with some of my other exercises. We had a good discussion about this, and came to the conclusion that my workout had become unstructured and needed to be reordered. We agreed that I would do 10 to 15 minutes of balance and control at the beginning of my workout. Then I would move on to the things that I find more interesting, like push-ups, squats, and other strength and conditioning exercises. I told her that my eventual goal is to be able to do a CrossFit routine. She thinks that that is reasonable, but cautions that I need to focus on fundamentals first. Reluctantly, I agree. To that end, I've joined a new gym. I am going to the same gym that Julia goes to. This makes it easy to coordinate our workouts as well as the kid's swimming excursions. I'm going to visit with a personal trainer (note: not a physical therapist) to try to figure out a good routine. Right now, I am not entirely sure how to structure my routine at a gym with so many machines, weights, and amenities. I've spent a lot of time there standing, staring, and trying to decide what to do. I have been doing all my workouts at home, with no accessories, for two months, so the options at the new gym are a bit overwhelming. I intend to continue to work hard at physical therapy, and the gym will help in the long run.
My medication schedule is still being tweaked. I cut back to once a day on my primary muscle relaxer. I am still taking steroids, but probably need to back off them again. My doctor wants me completely off them two weeks before my MRI, but I think that they are actually helpful. Maybe I just need to drop down to an even smaller dose or frequency. My vision has returned to normal. I thought it was being affected by one specific drug, but that drug is the one that I continue to take at the same dosage and frequency. Maybe it was another drug, or the combination of them all, that caused problems. But in any case, I'm happy not to have blurry vision anymore.
I have also started driving in small amounts again. I am doing daycare drop offs and pick ups, which Julia appreciates greatly. I'm also running local errands. I haven't had any problems yet, and hope to continue to expand my range and duration. I might even drive into the office next week. I don't envision driving every day, because it is a bit tiring, but I think I will gradually work up to that.
Overall, things are good. I have been in good spirits, stayed healthy, and kept a good attitude with the kid. I'll continue to work hard. I'll continue to rest. I'll continue to stay positive. The most difficult part for me is that this will take a long time. Being patient has always been difficult for me, but it is more important now than ever.
Posted by jon at 8:59 PM
September 25, 2013
September 25: The Road to Recovery
First of all, my apologies for being so slack about writing updates. Thank you to everyone who has continued to ask about my health. Life has been gradually returning to normal, which means extremely busy. The good thing is that I have been able to handle it really well. My symptoms, namely numbness and tingling in my feet, have generally subsided. I am a lot more coordinated and fluid in my movements and gait.
My follow-up MRI showed that the edema around my spinal cord has decreased. The enhancement was also less severe than before. My neurologist was very encouraged by the results. He thinks that the space created by the procedure, in conjunction with the steroids, were what helped to relieve my symptoms. Given my physical recovery, reaction to drugs and therapy, the neuropathology report, and the latest spinal cord imaging, he reconfirmed what was his original diagnosis: acute inflammation. This is good news, because tumor cells were the alternative.
I am now back to work at the office as well. I had been working from home for a couple months. This was helpful because it took the stress of driving and commuting off my back. It also gave me more time to perform my therapy routines at home. But it's also good to be back in the office. It restores my original routine and helps me keep in touch with my coworkers.
I further reduced my medication program as well. I am fully off the narcotics, steroids, both muscle relaxers, and stool softeners. I continue to take an anticonvulsant, which is extremely helpful for my condition. I am still fine tuning the dosage and frequency but think I have found good amounts.
I completed my courses of physical and occupational therapy. Both of my therapists were pleased with my progress and happy to release me to the wild. I am doing real exercises again, which makes me feel great. I'm working with a personal trainer at my gym. He understands my condition and tailors my workouts and activities appropriately. I have even been running. I ran a 5K race and have been jogging around my neighborhood. I've had a few unrelated minor injuries, including a calf strain and a groin strain, which have limited me a little bit. But I am working through them as I continue to work out and get back into shape.
The trickiest part continues to be my manual dexterity. My right hand is still numb and lacks control, but it has actually been getting better over the past month. My tactile sense is improving, and I am able to do things a little more normally. I am practicing typing with each finger as opposed to just using my index finger to mash on the keyboard.
Overall, I am doing things more and more without really thinking about them. I'm able to complete daily tasks and generally go about my business without putting in the mental effort and concentration that I needed to just a few months ago. I'm able to kick a soccer ball again with fluid motion and facility, but I am still in forced retirement from actual competition.
I got clearance to give blood as well. I've given platelets twice, and will continue to visit the vampires as often as possible.
I've commissioned a painting from one of my artist friends. He has had spine surgery as well, and as such is in a unique position to understand my situation. The painting features a skull and the cervical vertebrae with the word "Strength" written beneath. The word is in the old-fashioned font common in old hand-drawn medical diagrams. It is nearly complete, and I will post a picture of it here when it is done.
I knew going in that this process would take a lot of time. It has been 5 1/2 months, and I'm now starting to see some recognizable progress. I will keep putting in the effort to recover physically and neurologically from this incident.
Posted by jon at 11:57 PM
November 24, 2013
November 24: Strength
The last two months have flown by for me. There have been days when I hardly think about what I've been through. I'm working, working out, and spending time with my lovely wife, daughter, and cats. My life is slowly returning to normal.
The biggest improvement has been my physical strength. My nagging injuries have subsided, which has allowed me to do my normal strength training. The goal that I've set is to do 10 pull-ups. I'm currently about 9 short. To reach this goal, I am lifting weights, doing pushups, running on the treadmill, rowing, and taking part in the 30-day plank challenge. I had my final 1-on-1 session with my personal trainer. He has given me a lot of ideas for exercises and a boost of confidence as well. I am going to join my lovely wife's training group, Team Chocolate. They have a team cheer and everything. Hopefully I can keep up with them!
My neuropathy is still an issue. If I don't take my medication on schedule, I get fire and compression in my right hand and foot. I bumped up my dosage a few months ago, but my tolerance is still building. I might need to increase it again. I have an appointment with my neurologist in early January, so I'll discuss it with him then.
My sensitivity is slowly improving. I'm trying to retrain my sense of touch, but it continues to be a long road. My foot seems to be making more progress than my hand. Walking, jogging, and especially balancing are easier every day. My gait is still a bit awkward, but less so than just a few months ago. My fingers still have a ways to go. I'm using them to type poorly right now, so that's something. My proprioception is still off. Because I can't see them, putting each finger into its hole in a glove is tricky. But I am a lot more confident with it in general. I am even comfortable holding up to and including my third vodka in my right hand.
My mantra has been Strength. It has been so for a long time. When my lovely wife and I traveled to India a few years ago for a yoga retreat, one of the exercises was to choose one word to express what we wanted to be, what we aspired to. Others chose words like compassion, or love, or kindness. I chose strength. Of course, one always wants to be strong, but I'm not sure I had ever outwardly expressed it in quite that way before. Saying it out loud made it more real, more purposeful. It was with that in mind that I approached all aspects of my life.
My friend Joe went through a spinal surgical procedure similar to mine. He is a geek, a mountain biker, and a tremendous artist. His work is bold, emotional, and inspirational. I commissioned a piece of art from him because I knew he understood what I went through and that he could express it in meaningful way. I asked for a depiction of a skull and cervical vertebrae, with emphasis on overcoming trauma. He put together this amazing work of art:
The splattered paint symbolizes the inherent disorder and chaos in the world, while the crown symbolizes control over that chaos. The italicized font is meant to suggest a medical diagram you might find in an old textbook. Each cervical vertebra is labeled as well. The piece is called "Painless III," and I've added the subtitle "Strength."
Posted by jon at 8:05 PM
August 20, 2014
August 20: Stronger Every Day
It has now been more than a year since my procedure. I didn't commemorate the anniversary in any special way. No dinner out, no party, not even a blog entry. That's because for the last 9 months I've been working and progressing slowly and steadily. I haven't achieved any milestones or had any breakthroughs. I haven't cured my woes or reverted into a shell. I've been working out, thinking positive, and concentrating on my posture, gait, and motion. I'm lifting weights, running, and doing hyperthermic conditioning. I've been steadily decreasing the dosage of my last remaining medication. I've gotten to the point where dropping it any further causes discomfort. It's good that I've found this minimum required amount, but it's frustrating that I can't decrease it further.
I really would like to wean myself from this last medication. If not for reasons like potential side effects of long-term usage then for the principle of overcoming a challenge. In order to quit the medication, I've researched some alternate treatments for my neuropathic pain. There are a few classes of drugs that are usually used to treat my symptoms. The first, anticonvulsants, is what I'm currently taking. The second, SNRIs, often have negative side-effects. The third, local anesthetics, seem to only provide moderate benefits. The fourth, opiates, have all the pros and cons usually associated with opiates. Since none of these stood out, I decided to investigate alternative medicine. Western doctors don't understand it, but there have been numerous studies in which acupuncture has been an effective treatment for dozens of conditions. I don't think Qi is real, and I don't know how sticking needles into your skin would activate it anyway, but there have been very few gory deaths from impalement by acupuncture needle. It was a low risk option with potentially great rewards. I found a practitioner, made an appointment, filled out a 12-page questionnaire, and went for a session.
The acupuncturist's office was like a massage therapy room. Dim lights, white noise machine, babbling fountain, and quiet ambient music helped to set a relaxing tone. The therapist was interested in my full medical history and symptoms. I think he was a bit disappointed that my issues only manifested in my right hand and foot. He noted that most of his clients have a myriad of internal problems but was ready to try to help me anyway. He was unsure at first whether his therapy would be of benefit but said we'd know pretty quickly. He indicated that people with neuropathy from different causes tend to feel immediate relief from acupuncture but was not sure that my cause fit the pattern. Indeed, the needles didn't do anything for me. He inserted needles into my left hand and foot, all the while poking my right side and checking for sensations. Every time, I said, "feels the same." He eventually acquiesced and said he didn't think he'd be able to treat my symptoms. He did offer me a "traditional" relaxational acupuncture session. I had needles jabbed into my back, neck, arms, and legs, and lay face down on the table for the remaining 20 minutes of our session. I left relaxed but unchanged.
So it's back to the medication for me. There are a few other options in the anticonvulsant category that I can try, including the prodrug (precursor) variant to my current medication. It is supposed to last longer and have higher bioavailability than my current drug, so I've reached out to my neurologist about it. Its use would be off-label for me, but my doctor seemed willing to try it anyway, especially since it's so similar to my current prescription.
There is no magic bullet, only time and effort.
Posted by jon at 10:52 PM