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A Remarkable Success Story - Spinal Stenosis with Myelopathy



When I reached age 50, after riding an upright two-wheeled
bicycle for many years, I started to notice an increased uneasiness when riding
because of balance.   I knew of no
particular reason for the uneasiness, and my primary doctor was not
concerned.  At about the same time, I
noticed an occasional muscle spasm on the top of my head.  Over the years this symptom subsided. A
question many years later:  were those
symptoms a sign of changes to my neck? In spite of my symptoms, my  solution to continue cycling was to get a
three-wheeled trike.   Also over a period
of time, I noticed increased issues with my balance and walking.  My balance was not so severe that I would
fall.  Again doctors had no explanation
for it.

About two years ago,  I experienced even more increased difficulty
with balance and walking  with
a need to be careful for fear that I would fall.  I began physical therapy, which helped, but I
still had issues with my balance and walking.

 I scheduled an
appointment with a neurologist who was a movement specialist..   At this time I was having issues walking in
open space, like a parking lot, or while crossing the street.  I was walking with a wide gait with some hand
swings.   I started to use a cane.  An MRI of my brain was done, which came back
normal.  Great news, no brain tumor or
any stroke!  Sometime later, other tests
were done.   The neurologist diagnosed
possible ataxia, so  he ordered a $15,000
blood test. The blood test was somewhat experimental, so after my insurance
paid, my maximum out of pocket was $600. The good news was that the blood test
came back negative for ataxia. 

While visiting friends in Chicago, I learned about another test that
might help me diagnose my problem. I  made an appointment for this test that
utilizes something called a Zyto Scan machine.This machine showed I had inflammation of the neck with no further explanation.
Some supplements were suggested.  Over
time I found these supplements did not help, but at least there were no side
effects and I had a clue that my neck was involved.

A six month follow-up visit with the neurologist just confirmed that
there were no neurological issues. Another round of physical therapy was
prescribed. The physical therapy entailed a lot of leg work and neck movements
to try to help with balance.  Well, a
miracle happened! I thought I was cured!! 
I could easily walk through open spaces and parking lots.   That lasted two weeks until I woke up one
morning with some neck pain and the same walking and balance issues resurfaced all
over again.  I went to my primary doctor
to explain my neck pain and how I was doing so well until suddenly I wasn’t.  He ordered a neck X-ray and referred me to an
ophthalmologist.   The ophthalmologist
insisted that my eyes were great and was highly critical about my glasses
prescription prescribed by another neuro-optometrist eye specialist in hopes of
helping me improve my balance. I went to an ear specialist who insisted that my
balance issues had nothing to do with any ear problems. So now the primary
doctor wanted an MRI of the neck.  My insurance
said no and wanted me to do even more physical  therapy. 
For the third round of physical therapy,  I went to a specialist that does an innovative
type of physical therapy, IMT (Integrated Manual Therapy).  This type
of therapy uses light touch self-body healing techniques.    Well, it did not take
more than a couple of sessions for the therapist to realize that I had a
serious neck issue and that I might need cervical fusion.   The light touch work actually moved the neck
vertebrae away from the spinal cord, and for an hour or two I could walk normally
without any balance issues.  So that made
me realize that the previous physical therapy required a lot of neck work. I
wondered,” Did IMT move the vertebrae off a compressed spinal cord lasting only
for two hours?”  If that were so, I
decided, now we may have something of a solution to my problem in the absence
of other issues.  (What is also very
interesting is that a neck massage also seemed to miraculously cure my balance
issue for an hour or so.) My neck seemed to me to be a common denominator.

So now I’m
thinking the idea might have been that this was all in my head. A problem with
walking in open spaces or crossing the street was all in my head? Not true, in spite
of Internet references to people having this issue with no apparent cause.    

Time to get a
neck MRI.  I waited for the results but
was not contacted about it.  I was
thinking, “Maybe it was a good result and I have to wait to see the neurologist
to get good news.”  I had my primary
doctor pull the written result and I went down to the hospital to get my MRI
disk.  My primary doctor showed me my spinal
compression in the C3/C4 area alongside a picture of a normal one with a nice,
round, uncompressed spinal cord.  The
written report clearly stated a signal problem at C3/C4.  From an electrical engineering standpoint,
this to me means there is resistance to getting signals down from the brain to
the lower body.  Since the spinal cord is
fluid, from a plumbing standpoint, this seemed to me like a compressed water
hose?

While waiting to
be given an appointment with the neurologist and the neurosurgeon, a friend gave
my MRI results to a Chicago area chiropractor. 
The chiropractor was very adamant that I needed surgery.  I decided to start some research on ACDF (anterior
cervical discectomy and fusion). 

The
neurosurgeon I saw was in the same hospital group as my neurologist and primary
doctor.  He looked at my neurological
report and said that I likely still had some undiagnosed problem and did not
think ACDF was necessary, and said I should come back in six months at which
time we would do another MRI.  He looked
at the MRI out in the hall and did not even sit down next to me to discuss
it.  I decided “OK, great, maybe I have
an honest surgeon that did not want to do unnecessary surgery.” I would have
agreed to surgery if he was willing to do it.

Now it was time
for me to get other opinions, especially since the IMT person was also adamant
about the necessity for neck surgery.  
Fortunately, with the help of my out of town friends, I got six other
opinions.  All 6 said that I needed the
ACDF.  I talked to one neurosurgeon for
20 minutes long distance over the phone about it. 

I finally found
a local spine surgeon to see me.  He
immediately sat down with me with the MRI and suggested ACDF at C3/C5.   He wanted to go down one level to avoid any
future issues.  He said that I should not
wait or the problem could be irreversible.  
The way it was now, he said that it might take a year or two to reverse
the damage done, if at all.  I told him
to schedule the surgery, thinking that I might do the surgery down the
road.  The spine surgeon had me do a CAT
scan the next day or so.  About an hour
after a review of the CAT scan, the office called saying to do the surgery
sooner than later.  I happened to be at a
health fair at the time. I found a chiropractor to use his electronic device to
scan my neck.   His simple device showed
an issue at C3/C4. That was enough evidence now for me that surgery was
necessary. 

Meanwhile, I
also found a five-minute Youtube video by on spinal stenosis
with myelopathy.  I was walking with the
wide gait as shown in the video and I also had many of the other symptoms.  

About four
weeks later, I went in for my ACDF surgery. 
While in pre-op, I could not help but think “Why am I here with only
minor or no neck pain.”  The surgery lasted
about three hours. The entire time my esophagus was pushed to one side at a
very high level to get to the spinal cord.  
I came out of surgery with no complications and only minor pain ranging
from 2 to a 4 while on the narcotic drugs.   They gave me some food to eat that tasted
great and with only minor swallowing or soreness issues.  I expected the swallowing problem.  It was at its worst a couple of days after
surgery but I could always eat solid foods as long as I took smaller
bites.  After the first couple of days,
the swallowing slowly got better day by day and was totally gone after three
weeks.  I stayed overnight in the
hospital, as expected, and was only on narcotics for 4 days after I got
home.  Fortunately I was able to do a lot
of walking.  I wore a cervical collar
brace for six weeks.  I was able to start
“walking" physical therapy after only two weeks with the cervical collar
on.  After six weeks and another X-ray
showing good fusion progress I was able to start physical therapy on the neck
as well.

I am using a
device on my neck for 30 minutes daily to stimulate the neck bone growth.   It is a CMF Spinalogic bone stimulator.   This was ordered by the spine doctor and
required since I had fusion at two levels. 
This delivers a magnetic field to help with bone fusion healing.
What is
remarkable is that I woke up from surgery with increased sensitivity in my
right hand and I could also feel increased sensitivity in my feet.  Would think that there would be increased
feet sensitivity connected with helping with balance?  There are many reports on the Internet about
people waking up from ACDF surgery in a "miraculous" new state.   

I did notice
some walking and balance improvements shortly after I got home, and I no longer
had the wide gait.  About three to four
weeks after surgery I was able to give up the cane.  Walking continues to get better day by day,
to the point I can almost forget that I ever had a problem as I write this 16
weeks after surgery.  At 65 years of age,
If I do not get any better than that, I will be very satisfied.  I have not noticed any reduced neck movement
after the surgery.

I only have
some neck stiffness turning to the right or left.  As I review this scary adventure, I can hardly
help but wonder, what would have happened if I had not taken the initiative to
do my own personal research and get other opinions?    I was in decline during the time spent
getting other opinions and getting my research done.   I can only assume that maybe at some point
in time it would have become obvious that I needed this surgery.   I am glad that I did not wait any
longer.  I hate to think what would have
happened if another illness that prevented me from my seeking the help I so
desperately needed.    

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Comments

  • memerainboltmemerainbolt IndianaPosts: 6,473

    hello donipert!
    welcome to spine-health

    like you said, what a scary adventure.it pays off when you take your health into your own hands, being your own advocate.
    it sounds like you have recovered well and still working on it. so hang in there, only time will tell. people our age so heal, only at a slower rate.

    please click on the welcome link below as well as the tutorial to help you with the forum.
    welcome to spine health


    take care and keep us posted. the next time you post though, please do not type in bold letters. some members take that as screaming.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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