Reality CP:

Alan Hess has been the favored author at this site since the first submission. Approximately 25,000 people have read at least one version of his recounting. Here is the latest update. We have not received a single comment to his diary entries. What is there to say except how much we hope that next year this time a treatment will have arrived to provide some relief to this wonderful, direct author.


Pains and treatments, as of Summer 2001.

Condition: C-5 quadriplegia, injured 6/11/81, age 21. Post-SCI pains
began about a month after injury, and continued to increase in
intensity (for the first month, I felt nothing at and below the level
of injury, and that’s what I’d like to feel again.) Doctors said -
“you can’t have pain below your level of injury – it’s all in your
head.” “It will disappear within two years.” Etc. For several years,
my complaints were completely dismissed, and no treatment tried. It’s
now been over 20 years, with all sorts of treatments attempted. No
amount of massage or electrical stimulation or range of motion makes me
feel looser or more comfortable. No medications have had any effect on
the pains, except for 100 mg. Demerol plus 50 mg. Vistaril given IV
following my cervical fusion (C-4 – C-6) 13 weeks post-injury. The
pains were gone, but I was way too high to be medicated permanently at
this level (My hamburger talked to me.)

Pains (it is impossible to describe all these sensations, as just about
every adjective that describes pain applies to some part of my body, so
this is basically a summary of the most intense feelings):

Upper & mid back: Shoulder blades and vertebrae between scapulae feel like
they’re protruding through my skin (left shoulder blade moreso than
right.) Feels like compound fractures of scapulae. Feeling of
tightness, stiffness, burning, pulling, aching, stabbing, scraping, and
wetness across entire area, especially left side. Feels like the whole
area is badly swollen. Also feels like vertebrae are compressed.
Pressure increases intensity. I avoid shirts whenever possible. Any
movement of either arm (especially the left) increases the pain and
pulling sensation over the shoulder blades. Left shoulder blade “pops”
constantly, right one less often. Exercise is impossible due to pain,
pulling, and pops. Pain level 10.

Abdomen: I feel full all the time – no appetite at all. I have to
force myself to eat, so I eat very little most of the time, and don’t
enjoy it. I don’t get hungry (sometimes my blood sugar drops, so I know
I have to eat something due to feeling weak, but no sensation of
hunger. I’m not diabetic.) Entire abdomen burns, tingles, pulls, and
feels tightly cramped. Constant punched-in-stomach feeling.
Stretching doesn’t help. A few small areas of the abdomen are more
intensely pained than the rest of the area. Breathing is painful, as
is any movement, as it stretches the pained areas. Talking is also
painful, for the same reason. Both abdomen and upper back feel like
skin has been scraped off, or like gasoline is burning on my skin, and
something very heavy is sitting on the area. Feels like a gaping hole
in my gut, like a surgical incision which was never closed. Abdominal
spasms make matters worse. I often feel sick to my stomach, especially
when I try to go out. Pain level 10.

There is a feeling of a band across my chest where the normal
sensation ends. Some areas more intense than the rest of the band.
Pain level 3-4, but sometimes higher and throbbing.

Lower back: Tight, sore. In early years post-injury, had no pain in
this area. Pain level 3.

Arms: Backs of arms feel numb. Hands and fingers feel heavy and
tingle. Tingling increases when arm is moved. Fingers burn. Fingers
feel stuck together. Pain level 8 in hands and fingers.

Butt: Tingles. Occasionally, I feel like I need to make a bowel
movement, but there’s actually nothing there. Pain level 2.

Legs: Heavy, tingling. Legs feel stuck together, as do toes. Ankles,
feet, and knees burn, throb, and tingle. Thighs less intense. Pain
level 8 in ankles and feet, 7 in knees. Right side slightly more
intense than left.

Conclusion: Pain definitely worse than paralysis. The back and
abdominal pain ruin any possible enjoyment of life, and they keep
getting worse. The pains keep me awake at night. I am unable to
concentrate on anything for any length of time. I am unable to do most
of the activities of daily living a C-5 quad should be able to do,
which I would like to do. The rare times I force myself to go out, I’m
unable to enjoy myself and have to fake being comfortable, so, for the
past several years, I’ve basically only left the house for doctor’s
appointments. As the upset stomach sensation has become more of a
constant, and pains keep increasing, even these excursions have
decreased to near zero. Anti-nausea meds don’t help. I miss being
able to go out – not being able to do so is depressing.

In the mid-80s, I had a lipoma removed from over my left shoulder
blade. The blade was popping before that, and, as I say often above,
still pops all the time. That shoulder blade is the most painful part
of my back, and the bone that feels like it sticks out the farthest
through my skin. The vertebrae in between the blades stick out
slightly less, and the right scapula sticks out very little.

I also have a scoliosis, which makes me constantly feel crooked and off
balance, so I’m always shifting in my wheelchair trying to get to a
position in which I feel straight. Between the curve and the pain, I
have a lot of trouble sitting up, as well as trouble reaching things
(especially my keyboard.) Even driving my wheelchair is difficult, and
keeps getting more so. Tried all sorts of braces and wheelchair backs
for this with no success. Curve feels like it is getting worse.

What’s been tried for pain (in no particular order): Spinal cord
stimulation, laminectomy of C-5 in 1987 to look for a syrinx (none was
found), TENS, physical therapy, chiropractic, acupuncture, hypnosis,
psychologists, social workers, anti-depressants, muscle relaxers,
anti-seizure meds, Ultram, anti-Parkinson’s meds, Marinol, narcotics,
aspirin, acetaminophen, ibuprofen, IV lidocaine, trigger point
injections, accupressure, herbal remedies, diagnostic nerve block,
intrathecal baclofen test, epidural morphine test (1.5 mg., if I recall
correctly. Made my body above the level of injury itch.)

Highest daily doses of oral narcotics have been 80 mg. Methadone, 180 mg.
MSContin (90 mg. twice a day), and 80 mg. OxyContin (40 mg. twice a
day.) Neither provided the slightest relief at those levels, but did
cause constipation problems (I’m on an every third day bowel program.
I also have to be careful of urinary retention, as my bladder
management consists of my bladder voiding on its own when the urine
amount reaches a certain volume. I don’t catheterize.) Duragesic
patch made me very nauseous and caused bad headaches. Neurontin and
Gabitril caused hallucinations. Topamax caused problems. Diagnostic
tests include MRIs, GIs, myelogram CT, X-rays. More things and meds
I’ve forgotten (all meds tried were stopped either due to intolerable
side effects or lack of efficacy.)

Other than the pain and paralysis, I’m apparently healthy. An MRI was
taken in early August, 2000, and apparently showed no change from the
last one in 1996. Major spinal cord deterioration from C-4 to C-6, no
syrinx, and no tethering reported. After developing a problem with a
numb and heavy feeling in my right arm that spread to my left arm,
another MRI was taken April 18, 2001. This scan also apparently showed
no change from previous scans. Cause of numb feeling still unknown,
but adding a daily dose of vitamin B12 seems to have solved the problem
for the most part, so it may have been a vitamin deficiency.

Following the loss of dysreflexic sensations (sweating, feeling cold)
during my bowel program in fall 2001, another MRI was taken of my
entire spine on November 7, 2001. That scan also was said to show no
change from the earlier scans, and no new syrinx or other anomaly, so
we have no idea what caused the sensation change and change in bladder
voiding pattern (it’s possible that they were caused by medication,
though I wasn’t on anything I hadn’t used before. When I stopped
taking all the meds I was on, as they weren’t helping anything, things
returned to normal. The culprit appeared to be MS-Contin.) We still
have no idea why the pain intensities keep increasing over the life of
the injury, as the MRIs apparently show no change in the injury site
over time (at least that’s the impression I’ve gotten.) The thought is
that the cavity is where the damaged spinal cord tissue liquefied.

Update Fall 2001:

I’m living in pure hell now. For whatever reason, the pain levels have
gone even higher (and my history is that when the pain level increases
for any reason, it never goes back down), and the back pains and curve
are further reducing my ability to type, which is my only means of
contact with people, being that I’m almost totally homebound from the
pains. Much of my body below the level of injury feels like it’s
covered with burning gasoline (people jumped off the World Trade Center
to avoid that sensation – imagine how I feel living with that sensation
every minute of every day), with the previous main areas still the most
intensely pained. My shoulder blade region, which already felt like
the bones were sticking through the skin, has seen an increase in the
intensity of that sensation, and all the skin feels scraped off the
area. It burns fiercely, and pulls more, which is causing much of
the typing problem. I’m having even more trouble driving my electric
wheelchair – the worse my back has gotten over the years, the more
trouble I have doing anything, including chair driving. The scoliosis
continues to bother me. Every painful part feels even tighter than
before. The pain levels in much of my body are 10+. I rarely sleep at
all without a sleeping pill – the pains control all consciousness.
Even with medication, I only sleep 3 to 4 hours if I do sleep. I lay
on my back, and the sensation of laying on that area is almost
unbearable (no other position is any better.) The throbbing legs are
more intense at night, as is every other sensation, as I have nothing
to take my mind even slightly off them. I’m barely eating, as the
intensified burning, full feeling of the abdomen is impossible to
overcome. I dread mealtimes. It feels like my abdomen is a heavy
sheet of red-hot metal pressing on my organs. I’m now in so much
pain, I can’t even leave home to see doctors, let alone to do anything
enjoyable. I’m fed up with the whole situation.

Update Spring 2002

Nothing has really changed since the last update in the fall. The back
and abdominal pains are still fiercely intense (feels like freshly
broken compound fractures from my left scapula to my right), and the
few meds tried since fall were as ineffective or side effect ridden as
all previous meds. Due to discomfort, I did not leave home all winter.
With the improved weather, I’ve tried to get out a couple of times, but
they were only short trips, and weren’t at all enjoyable due to the
pains. My mood remains poor, and it’s a major effort just to get out
of bed every day, as sitting is so uncomfortable due to the pain and
scoliosis, which feels like it keeps worsening. The lopsided feeling
remains extremely annoying. Trying to hold my balance still makes me
constantly fidget in the chair, and that often causes red marks on my
back from rubbing against the chair back. Activities of daily living
such as typing and eating keep getting even more difficult as the pain
and curve increases. My ability to concentrate on things is still
quite limited. I almost never wear a shirt now, as doing so aggravates
the shoulder blade pains. The popping of the shoulder blades when
moving my arms continues, as does the pulling feeling of the skin and
muscles in that area. The lower back pain is worse than it was, about
a 6. I’ve managed to eat enough to maintain myself, but I still have
to force what little I eat, as hunger remains a sensation I never have.
Queasy feeling remains a problem, worse some days than others.
Breathing still feels difficult due to tight feeling abdomen. The
right arm feels number and heavier than the left arm, and there’s minor
pain in the right shoulder.

Update Summer 2002

No improvement from spring. Summer’s almost over, and I still can’t go
out because of the extreme abdominal pain and queasiness. The back
pain doesn’t help matters. Both shoulder blades are “sticking” and
popping constantly. There must be some way to stop the bones back
there from feeling like they’re protruding through my skin (each
shoulder blade feels like a hot softball – big, swollen, very
uncomfortable), and to reduce the pain in the abdomen so I can eat
like a normal person. My food input has dropped to near nothing. I
can’t find a med that relieves the pains at all. I barely talk to
people any more; talking is more aggravating of the abdominal pain than
plain breathing. The crooked feeling due to the scoliosis continues to
aggravate matters – it’s kind of like having vertigo, and never feeling
stable. This is getting to be a broken record to read, I know – just
imagine how it feels to live it 24 hours a day! Depressing, to say the
least. The pains either keep me awake at night, or wake me after only
a few hours of sleep. Still having trouble with the occasional numb
feeling and forearm pain in the right arm, and even the left forearm
now and then. The right side remains the bad side – blurry vision (and
astigmatism) in that eye, the aforementioned numbness in the arm and
shoulder, and stronger pain and tingling in the right leg and foot. In
my opinion, over the years, the pain in my upper back has crept higher
up than it used to be, but I have no early sensation maps to prove
this. The right shoulder blade area has definitely worsened.

On September 17, phenergan controlled the queasiness enough for me to
get out and have another cervical MRI, and an abdominal ultrasound.
The report from the radiologist stated there was no change from the
prior scan (November, 2001), there was no syrinx, and no tethering of
the spinal cord. Thus, there is still no explanation for the pain
increasing and spreading, and sensation change in my right arm. The
ultrasound did not reveal any problems – no gallstones or kidney
stones.

In the early years of the pains, when they were less intense (though
still strong), most days were bad, but a few were worse. On the bad
days, I could go out, or eat. On the worse days, laying down provided
some relief, so I’d lie down to eat on those days. Pressure on the
abdomen and shoulder blade also provided some relief, so I’d wear a
strap around my shoulder blades, and my corset helped the abdomen.
Now, all my days are beyond those worse days, and neither laying down
nor pressure help. It’s been a strange progression. There’s probably
a linear correlation between increased time and pain intensity, and
lower amounts of food consumption, trips away from home, and even
activities like simply cruising around the block, which I used to do
every nice day, and now rarely can because of the shoulder blade pain
and curve.

Winter 2002

No improvement in anything. Pains are even more intense – they feel
worse, but that may be related to my ever growing disgust, as I’m sick
of being homebound and disabled by pain, having to force myself to just
get out of bed, and the long, agonizing nights (and days.) My entire
right side (leg, back, front) is more painful than it was.
Occasionally, I get an increased throbbing in the abdomen, wrists and
hands, and calves and feet, which lasts for a short time. The right
shoulder blade region has gotten more painful, and is about the
intensity and sticking-through-the-skin feeling of the left side. I
definitely didn’t need this. Still have the numb heaviness in the
right arm. Tried trileptal, but never got past 300 mg. twice a day due
to effect on spontaneous bladder voiding, which has stopped completely.
Recently developed a problem with severe edema of the legs, which we’re
trying to address by stopping the trileptal.

Hopefully, kidneys weren’t damaged, and fluid will all be flushed out
once the medication is out of my system. I can’t even get out to
have things checked, because of the pain levels. This stinks.
Edema did turn out to be caused by the trileptal. The legs are back to
their normal size. Still waiting for the voiding to return to normal
pattern – some spontaneous urination is now occurring, but it’s not yet
dependable.

As of 1/1/03, voiding pattern appears seems better. I’m extremely
depressed, because the worsened right shoulder blade pain has led to me
being unable to do even the few activities of daily living I did before
the change. Eating by myself is difficult, so I often need help with
that. Typing is slow, and torturous. Wearing a shirt is twice as
aggravating as it was with one bad shoulder blade. Sleeping was tough
enough before, but now I lay on two burning compound fractures, plus
the protruding-feeling spinous processes between the blades and, less
intensely, down the rest of the spinal column, which combine with the
abdomen and other pains to make for long nights and days. No idea what
caused the change in the right blade area (and the rest of the right
side) after all this time, but I don’t like it and sure didn’t need it.
Still have all the tingling and throbbing sensations, mainly in the
pained areas of the torso (front and back), and the legs. The
worsening scoliosis remains a big problem as well – shifting around to
try to maintain my balance aggravates my shoulder blade area, and
results in red marks and/or sores on my back from rubbing against the
wheelchair back. Poor balance also negatively impacts my ability to do
ADLs, as mentioned above. It feels like my skin is ripping apart
across my upper back when I move either arm, and shoulder blades feel
like they stick. I feel the same ripping in my abdomen when I breathe
(especially deep breaths.) I remain worried about my kidneys and
bladder.

So much repetition in this document.

Whatever, I’ve got to find a way to make all these areas stop feeling
the agonizing way they do (for simplicity’s sake, describe it as a)
most of my body feels like it’s been skinned, and constantly doused
with alcohol, and b) it’s covered with burning jet fuel), so I can get
some sleep, and, more importantly, get away from home and out to see
the various specialists I should be seeing regularly! Socializing,
along with sitting (and laying) comfortably, would be a well deserved
blessing for me, and my mother, too.

Spring 2003

No improvement in pains. Tried ketamine nasal spray, but it didn’t
help. Shoulder blade pains continue to limit arm function, and
abdominal pain still interferes with eating. Still stuck at home. I
feel like I was hit by a truck, and the collision broke both of my
shoulder blades, damaged my lower back, and caused internal abdominal
injuries. My shoulder blade pains are worse than ever, so I’m unable
to spend as much time as I want at the computer.

Summer 2003

The shoulder blades continue to be more intensely painful than ever.
Burning, throbbing, skinned-feeling, tight, like huge growing lumps.
The scoliosis also seems worse, though I haven’t been able to get out
to get an x-ray done to confirm this (and check for any nerve pinching,
and/or osteoporosis. Still haven’t found a med to provide even slight
relief, nor one to counteract the urinary retention side effect of many
meds that have or still could be tried. Abdomen is also sharper – the
first four descriptions of the shoulder blades apply to this area, too.
Overall, the right side of my body is more painful than the left, save
for the left shoulder blade. The right side of the abdomen, right
lower back, and right leg are all more intense than their counterparts.
I’m depressed, naturally. With the cramped, queasy feeling abdomen,
and the constant off-balance, floppy feeling due to the scoliosis, and
the aggravation of the shoulder blade pain when I use my arms, I’m very
uncomfortable sitting, and laying isn’t much better. There’s often
numbness/weak feeling in my arms, especially the right one. I’m having
more trouble reaching things, like the keyboard, so I’m typing even
less than before.
On the plus side, I had a 24 hour creatinine clearance test, and the
result was normal (for a quad) – 64, with 0.6 blood creatinine. At
least my kidneys are still working properly.

As of July 12, the pains are the worst they’ve ever been. Shoulder
blades and spinous processes continue to feel like they’re sticking way
out through my skin, and the shoulder blades stick on something
whenever I use one or both arms. As always, the skin feels as if it is
being pulled apart, even into my upper arms. The abdominal sensations
of huge cramp, gaping hole, and fullness at the same time (central pain
is strange) continue on their merry way. I don’t know what it is that
keeps skinning me, and then throwing on alcohol, but I wish it would
stop. As always, when seated, I’m also fighting to keep my balance,
due to the curve – the corset only keeps me from falling forward – and
that involves hooking my arms around the chair handles and pulling,
which then aggravates the shoulder blades. I’ve not been able to stay
up in my chair as long as I used to, because of all this, and I still
feel every bump the chair goes over in my back and abdomen.

It’s now Labor Day weekend, unofficial end of yet another summer, and
the pains continue to intensify and spread (even into my forearms.)
Breathing is more difficult, due to the abdominal pain. The “lumps” in
the shoulder blade region continue to feel like they’re getting
larger. My hands feel heavier, and cold and burning at the same time.
Legs also are more intense. The right side of my body is still more
painful than the left side, save for the left shoulder blade vs. the
right. The right shoulder blade is catching up, as the spreading of
the pain in that area continues. All the painful areas throb. I feel
like I’m in the hands of a giant, who is trying to bend me in half
vertically (along my spine), and humans don’t bend that way. The pains
in my side aren’t due to kidney troubles – an ultrasound showed all was
well with them.

A spine X-ray taken 10/1/03 showed disk degeneration at
C-3 and C-4, C-6 and C-7 (C-4 through C-6 were fused post-injury), and
T-12 to L-2. This may explain the numbness/weak feeling in my right arm
and leg, as well as the increasing, spreading pain in the right
shoulder blade region, and the pain in my forearms. The whole shoulder
blade area still feels swollen (left hugely so), and extremely tight,
the skin in the area feels like it’s being ripped apart when I move an
arm (it’s like some giant installed a knob in my back and abdomen, and
used them to pull my skin as tight as possible.) Each shoulder blade
still “sticks” when I move the respective arm. Seems like bone rubbing
on bone when the blades move, though I don’t know what shoulder blades
can rub against (ribs, perhaps?) With any movement, all the bones in
the area feel like they stick even farther out through my skin. It
feels like my left shoulder blade is broken into several pieces. Darn
strange, like all the central pain sensations. Same old “someone is
pushing down hard on my shoulders, compressing the vertebrae in my
back” sensation. And, thanks to the scoliosis, I remain very crooked,
despite the corset, with my right side still torqued forward of my left
side, and the constant off-balance feeling from that and other aspects
of the curve. I’m twisted like a corkscrew – I’m told my left shoulder
is lower than my right shoulder, but I always feel like I’m falling to
the right. The continuous fidgeting I do to try to get straight winds
up causing pain in my neck and right shoulder. My entire abdomen still
feels very cramped, with the usual burning and sensation of fullness,
and skin-ripping sensation with every breath (especially deep breaths.)
And, of course, the hands, lower back, and legs still burn, and the
hands and legs feel heavier than ever. I’m spending many sleepless
nights, and spending too much of my days trying to sit still to avoid
aggravating the painful area. As time goes on, it’s harder and harder
to reach my keyboard or plate (especially with two hands at once), and
I have to stop typing every couple of minutes to try and straighten
myself out (doing that aggravates my neck, and the right shoulder I
push with), and, of course, the shoulder blade tightness limits my arm
movement. I’m miserable laying down, and miserable sitting up. This
is no way to live – subjecting a murderer to this torture would be
unconstitutional. And it keeps getting worse. The fantasy I have of
going to sleep one night and not waking up gets more appealing every
day.

11-18-03

If I wanted to, I could note almost daily how things get worse. The
scoliosis increases, the pains intensify, the pained parts of my body
that most impact my life (back and abdomen) reduce my few activities
even further, I remain essentially homebound, etc.

1/4/2004

Same. No improvement. Trying 60 mg. phenobarbital morning, 30 mg.
night, but no results. Still feel like I’ve been hit by a truck, and
dragged along the road – skinned, broken bones, pain from internal
organs, et al.

3/11/2004

No help from the phenobarbital, so it was stopped. Pains still
increasing. I’m depressed, as spring is on the way, and I feel so
lousy. Wearing a shirt remains an ordeal, so I rarely do it. My
balance and posture seem to be further worsening (I’m twisted like an S
curve, right side torqued forward, and the corset doesn’t help keep me
close to straight), which, along with the back pain, hampers my driving
of my wheelchair, as I’ve reported before (I used to go around the
neighborhood every nice day – can’t do it any more.) Still the feeling
of some force pushing down on my shoulders and compressing my spine. I
still can’t adequately describe the sensation of all the bones in my
back (shoulder blades and vertebrae) sticking through skin that’s been
scraped off and resists when I move (I’ve never felt this tight, even
in my days of wrestling practice), nor can I yet fully describe the
abdominal sensations, which also include scraped-off skin, cramped,
burning, and tight, like my back. Breathing is even more difficult,
due to the tight abdomen, and the feeling of extreme pressure on it.
Sleeping is problematic, as I feel like I’m laying on sharp rocks due
to the aforementioned feeling in my back, as well as the bone on bone
rubbing. A real broken back wouldn’t hurt this much – no way. That
same feeling makes tilting back in my wheelchair for pressure relief
uncomfortable. It’s frustrating, and that doesn’t help my mental
status. The fidgeting I do to try to find and hold my balance hurts my
right shoulder, and, between the scoliosis and the upper back pain, my
typing is the most difficult it has yet been, so I’m not able to do it
nearly as much as I’d like. My arms are still more numb at the end of
the day, especially the right arm. My appendages still feel stuck
together, heavy, burning, and tingly. Every area throbs. Lower back
still hurts, as does chest. I don’t even feel like getting out of bed,
as sitting is so uncomfortable (not that laying is much better), but I
do get into the chair every day, though I go to bed early. I can’t
stay up in the chair as long as I used to, and this bugs me. The
off-balance feeling and pain combination are driving me nuts. I can’t
concentrate on anything else for more than a few minutes at a time.
I’ve never felt this bad.

3-27-2004

I wish I had a way to put myself out of my misery (lack of hand
function is so limiting.) Not that I’d necessarily do anything now or
soon – I just think that having the knowledge that I have the power to
end this torture would improve my mental status somewhat. As it is, I
have maybe 40 years of ever worsening pain and scoliosis to look
forward to, plus all the problems of aging, most of those years without
my mother to help handle things (with my inability to concentrate and
do activities of daily living, I can’t see myself handling the care of
a home, bills, etc. Heck, I may not only be homebound by pain but
bedbound as well down the down the road.) And the medical profession
can’t see the urgency of my problem – I feel like all my skin is
scraped off, and the bones in my back are compressed and compound
fractured (short synopsis of my sensations), but doctors can’t see
these injuries on me, just as I can’t. No person without severe
chronic pain can understand what I’m feeling. If I came into a
hospital with actual road rash and compound fractures, there’d be
no doubt of the need for immediate care and pain relief, but these
feelings are all in my brain. No brain equals no pain, as we spinal
cord injured know all too well, being that dysreflexia can result from
pain that the brain doesn’t get to record and have us react to.
Central pain is the exact opposite – the brain gets messages of severe
pain from areas that wouldn’t and shouldn’t be painful without the
central nervous system damage. But our brains can’t be removed, as we
need them, and we can’t clone a replacement without the CP sensations
ingrained, just as we can’t clone a new spinal cord to replace our
damaged one.

6-1-2004

The shoulder blade pains keep getting sharper, and my spine keeps
getting more curved. The bones in my back keep feeling like they’re
sticking out further and are more pinched together, I still feel like
I’ve been skinned (even more so), the burning areas (especially back
and abdomen) keep throbbing, and keeping my balance and reaching things
keeps getting more difficult. All the fidgeting I do to try and keep
my balance as I try to fight the scoliosis, and the feeling of
crookedness it causes, sometimes makes my neck sore on top of
everything else. “Comfortable” is a word that hasn’t been in my
vocabulary for 23 years. Still have the numb feeling in my right arm
(fidgeting aggravates it), and blurry right eye. Tried a couple pain
gels that contained such things as lidocaine, gabapentin,
amitryptilline, ketamine, and more, but they had no effect (just like
Lidoderm patches.) Desiprmanine plus phenobarbital also didn’t help.

6-17-2004

Managed to get out for an MRI and ultrasound 6-14, but it wasn’t easy.
The place is only ten minutes away (close to my limit when I do rarely
manage to get out), and, since I feel every vibration of the van, and
every dip, bump, stop, and start, in my back and gut, the latter of
which sensations nauseate me, I was feeling even lousier when I got
there. The MRI was supposed to be cervical and thoracic (to check the
shoulder blades and the spine between), but they only read an order for
cervical. Scan showed the same thing as all previous ones – my fused
vertebrae, my deteriorating disks, my miscurved neck, and, of course,
the hole in my spinal cord from C-4 to C-6 that resembles a syrinx, but
isn’t one, and hasn’t changed size or anything over the years (so the
continuing intensifying of the pains still isn’t due to any change in
that area.) No spinal cord tethering reported. Disk problems at C-3,
C-4, C-7. Ultrasound was fine – no gallstones, kidney stones, bladder
stones, or anything else (so the sensations in my abdomen that resemble
these conditions remain a manifestation of central pain syndrome, not
the result of actual problems with any organs.)

I’m going to bed earlier and earlier, because I just can’t tolerate
sitting due to the back pain. When I am up, much of that time is spent
with my chair tilted back and me trying to keep my arms still, as
moving them (and fidgeting) further irritates the back. The corset is
still useless, as is the orthopedic back of my wheelchair – neither
hold me straighter, or ease any of the back ache. It’s amazing how
much my back hurts, and how much those bones rub. The skin rips,
just as it does on my abdomen (especially when I try to take deep
breaths.) The ripping, pulling, throbbing, skin crawling sensations
are all over my abdomen, and upper back, from the top down, covering
both shoulder blades and the area in between, and extending downward,
mainly on the right side. Just about every bone in my back feels like
it’s broken and sticking far out through my skin – scapulae, vertebrae,
everything. The right shoulder blade seems to be getting worse at an
accelerated rate. Both blades feel even more “swollen.” The bones
stick and the skin pulls with every move. Shooting pain across
shoulder blades when either arm or shoulder is moved. The cramped
feeling covers my entire abdomen, but is worst in the center and the
areas where my kidneys are. I can barely drive the wheelchair around
the house (driving it any distance outside further upsets my queasy
stomach, like riding the van does – as the pain has increased with
time, my tolerance for movement in wheelchair or van has decreased),
I’m typing very little, and I have major trouble reaching what little
food I eat to feed myself. Most of the day, I do nothing but listen to
the radio, watch TV, or sit in the yard with my Walkman (and fidget
constantly all day to try to counter the curve, of course.) The pains
in the chest, hands, and legs (especially right leg) are also worse.
My right arm continues to feel numb and weak, and there’s burning in my
forearms. I’m going to bed earlier than I ever have, because sitting
is so uncomfortable. I’m sleeping even less, as all these sensations
either keep me from falling asleep, or wake me up after a short period
of sleep. The pains are currently at the highest levels they’ve ever
been (especially right shoulder blade, and right side of abdomen and
lower back), the scoliosis is at its most curved yet, and I know things
will just keep getting worse with time.

Great way to spend another summer, as we hit September. I’m really
sick of this nonsense. I feel worse every day, and I get more
depressed and disgusted as nothing gets done to provide any relief.
I’d like to be able to get out to see various specialists (as well as
get out for fun), but I can’t tolerate the van ride and the wearing of
a shirt. I want to have the hole in my neck drained or collapsed, my
curve straightened, and my urinary system checked. The right shoulder
blade now hurts almost as much as the left, and pops often. Entire
upper back feels more swollen than ever, and pain begins just about at
the top of my back. Like broken bones all across and down my back.
Shooting pain across and down my back when I move, likely related to
the bone on bone rubbing of shoulder blades and vertebrae. Front and
back feel even more like hot metal (and just as stiff.) Like almost my
entire body is being rubbed with sandpaper 24 hours a day. Hands and
legs more intensely pained. Everything is throbbing. Still have the
numb arms (which sometimes tingle and feel weak, with burning
forearms), and some tingling in my face. As has always been the case,
massage and stretching don’t make the back or abdomen feel looser.
Whatever has increased the abdomen pain and spread the pain across and
up my back has also decreased my lung capacity – I used to inhale 1800
to 2000 cc with my breath exerciser, now it’s 1400 to 1600 cc. I can
barely drive my chair now. Got no relief from desipramine, which was
tried – all I got was ice-cold extremities that still burned. Now
trying Cymbalta, but no joy there, either. Had a physical therapist
over to see if I could do any exercising – she saw how uncomfortable I
was just sitting (all the fidgeting and grimaces), how I reacted to
mere passive range of motion (it aggravates the back pain), and how
crookedly I sit, so she’s not sure if I’ll be able to exercise, but
I’ll try.

10/10/04

PT didn’t work out. Upper back pain was further aggravated, and we
couldn’t even find a placement for TENS pads to provide a little relief
back there. Bought a new TENS unit – same results as with the old one,
no relief. Pains keep intensifying – even my chest is often about a 10
now. Abdomen and back continue to burn, throb, and cramp, with bones
in back sticking through my skin. Organs all remain very painful.
Right arm is still weak and numb, and legs and feet still hurt. Entire
right side keeps getting worse, from blurry eye through abdomen and
lower back to foot. Entire upper back feels hugely swollen. The worse
the pain back there gets, the less I’m able to use my arms. The upper
back and abdominal pains are the worst pain I’ve ever felt, even worse
than when I broke my wrist and the orthopedist set it. I could
justifiably scream and cry 24/7, but I’m not a screamer. I want to be
more independent, not less!

11/22/04

Barely sleeping at all, due to the back and abdominal pains. That just
makes everything worse.

12/15/04

I’m getting desperate enough to start talking about having my scoliosis
straightened and my cord untethered, and trying a pain pump test,
though I have no idea how I’d get to doctors to discuss these things.
I’m spending so little time sitting up, due to the continuing increases
in pain and scoliosis. Much of my up time, the chair is tilted back.
It’s more difficult than ever to type, due to the more intense shoulder
blade pains, and the shooting pain across and down the back caused by
movement. The increased curve makes it even harder than before to
reach my keys. Every time I reach forward to type (or eat, or read), I
flop forward and to the side, then have to push myself back
semi-straight, which causes the shoulder blades to stick and pop, and
the skin to rip. This happens over and over, as long as I’m doing an
activity. Everything burns and throbs more, the right arm
numbness/weakness remains a problem, legs feeling heavier (especially
right leg.) I’m sure I’ve lost some sensation in my upper back, chest,
and arms since the early years, but I have no records from back then to
compare. I’m terribly depressed, still not sleeping, and eating very
little (even less than my “normal” amount.)

01/03/05

It’s a new year. Whoopdy doo. I haven’t slept for more than two hours
in a night for over two weeks, and, as said many times previously, most
nights I don’t get to sleep at all. It’s still primarily the back and
abdominal pains that keep me from falling asleep, plus the fact that I
can’t keep my brain from thinking about present and future problems.
The axes remain impaled in each shoulder blade, and in between them.
The skin everywhere continues to feel as if it’s being scraped off and
doused with alcohol 24/7. The skin ripping with every arm movement or
breath remains a constant, as does the raw, inflamed, swollen, wet
sensation in the upper back where the feeling is of broken bones
sticking out. I continue to curve more (osteoporosis?) Same old, same
old. Still looking for medications to provide some relief, and still
not having any luck. I remain miserable. It’s like the movie
“Groundhog Day,” except I feel worse every day.

02/02/05

It IS Groundhog Day. All the pains are still here, still intensifying,
and I remain curved. Having periods of extra queasiness beyond my
“normal.” Sometimes have a mild headache on right side of head. Tough
as hell to just sit up, thanks to the upper back pain and curve. The
worsening of the upper back further reduces my arm function, as does
the weak feeling of my right arm. I can’t lift them as high as I used
to, nor move them around as much. I’m fidgeting even more trying to
get balanced and comfortable, seated as well as laying down. Can
barely drive my chair. Still don’t know why pains keep getting worse,
especially my right side (increased pressure in the C-4 to C-6 “hole”
squashing the right side of the spinal cord, maybe? What else could
affect an entire side of a person’s body, other than a stroke, which I
haven’t had?) Other than my head and neck, my entire body feels stiff
and hard, not soft and supple like it should. It feels like every move
I make is resisted by my muscles and skin. I’m spending more time in
bed, which just adds to my lousy mood, especially since I don’t feel
any better laying down. Between the mood and gut pain, I don’t feel
like talking with people (not that I have many friends to talk with,
anyway, but I do have my mother, my aides, and relatives. I’m snapping
at my poor mother, who certainly doesn’t deserve it.) I’m spending
even less time at the computer – typing just gets more difficult. I’m
getting a seat-back brace to replace my corset, but that’s not supposed
to help with the curve. I wish I could get out to doctors, or just get
checked into the hospital and have everything looked at (neck, back,
plumbing, rest of guts), and try IV pain med while I’m in there. Or
call the paramedics and get taken to the emergency room. To keep from
getting cold and shivering, I’ve been wearing a shirt a few hours a
day, despite how it aggravates my back. Seems the upper back pain has
gotten so severe, the shirt can’t really make it feel much worse.

03/06/04

Same stuff, different day. The pains somehow keep getting more
intense, especially the right side of the abdomen, lower back, and
right shoulder blade. I’m less and less able to use my arms, between
the back pain and the twisted spine that’s got my right side torqued so
far forward. It’s easy to see how curved I am when I sit, and even
easier in bed I’m turned on my side. My chiropractor can see the path
of the vertebrae, including where the spine really juts off to the
right (which happens to be the most painful spot on the spine.) My
aides can also see it. The seat-back brace made no difference. I
tried to make an appointment with an orthopedist, though I didn’t know
if I’d be able to handle the trip to his office (only 10 minutes -
it’s disgusting that I can’t tolerate riding due to the effect of
bumps and stops on the back and gut pain, and the queasiness), but he
turned me down. I guess my quadriplegia scared him off. Don’t know
why – a scoliosis is a scoliosis, and snapping scapulas are snapping
scapulas (which keep getting more painful, so I’m typing even less.)
The closest hospital (five minute ride) doesn’t have a neurosurgical
department yet, and this ortho is the head of their spine center. I
don’t know what to do. The idea of suicide often enters my mind, but
I’m not ready for that step, and I don’t have a clue how I’d do it if I
ever get ready (lack of hand function is a major impediment.) It would
put an end to the pain, paralysis, and scoliosis. It’s a shame that’s
probably my only real option for true relief. Maybe something will
come up to change that.

I’m trying to get a neurosurgeon to see me at my local hospital. It’s
a five minute ride, so I should be able to tolerate it. Maybe he’ll
find something repairable in my neck and back, if he does see me.
Spring is going to come, and I want to be able to go around my block
like I used to. My right side continues to worsen at a faster rate
than the left side, so something must be going on.

05/14/05

Wound up going to see the neurosurgeon in April (he was about 12
minutes away – the Palladone I’m taking along with gabapentin seems to
settle my queasy stomach, so I was able to tolerate the ride. The meds
do nothing for my pains, and 24 mg. of Palladone stops my urine
production, so I’m stuck at 12 mg.) It was a waste – he looked at my
scans, listened to me, and said there was nothing he could do. My
mother can tell me that (and she does.)

Had my annual MRI and abdominal ultrasound May 9. Same old, same old -
the report said the scan was the same as previous scans. So what
explains my numb and weak right arm, and the fact that the pains on my
right side are intensifying faster than those on my left side (my left
shoulder blade is still the worst part of my back.) The ultrasound was
fine, too, for the most part – no stones in any organs, or anything
else problematic noticed in the urinary system, but they do want me to
get a CAT scan of my liver. My doctor says they may suspect a
hemangioma, but he didn’t sound overly concerned. I looked it up on
the web, and read that they are benign, and usually require no
treatment unless they cause symptoms. I haven’t had any problems that
are mentioned in the list, so no rush for the scan. All the visceral
pains remain, but nothing new in the liver area.

A few weeks after the scans, I went to see an orthopedist. It was a 20
minute ride, and I made it without getting nauseous (still felt every
bump, stop, and start in my back and abdomen, so it was a miserable
trip, but the lack of nausea made it possible.) I’ll keep taking that
12 mg. of Palladone – I’ll be able to take more short trips, and even a
few longer ones, than I have in over three years.

Again, I might as well have stayed home. The ortho had my back
x-rayed, as expected. The tech had my aide hold my shoulders up and
even for the x-ray, so I looked much straighter on the picture than I
really am! No x-ray was taken of my normal sitting position, with
the forward torque of my right side, the uneven shoulders, and the
usual bend of my spine. Made no sense to me. He said my scoliosis
wasn’t that bad (under 30 degrees), and didn’t even examine my shoulder
blades (though he did say they can’t be rubbing other bones. Of
course, other people, including doctors, have felt the rubbing and
popping happening – I’m not the one who came up with snapping scapula
syndrome as a possible diagnosis, as I never would have considered the
word “snapping” to describe the popping.) He looked at my MRI, said
there was no syrinx, and just scar tissue between C-4 and C-6. He
didn’t have any ideas to help me pain-wise or posture wise, which was
the reason I tried to hard to get to him. Maybe it’s time to just give
up on SCI-related doctors. If I can get out, I’ll find a urologist to
monitor my plumbing, and see other specialists if the need arises, but
forget about neurosurgeons, orthopedists, and “pain doctors.” I do
wish they could feel what I’m feeling – the broken shoulder blades, the
popping, the burning, the skinned sensation, the cramps, et al – I
think that would make them more understanding.

09/29/05

Another summer gone by, again with nothing done to improve my
situation, so nothing is better. I was again kept homebound by
queasiness and pains (which are still exacerbated by any movement, even
stopping my wheelchair or riding it over sidewalk block separators.) I
feel like my spine is broken in half between my shoulder blades where
the scoliosis really takes off, and that tips me more sideways to the
left. I get an extra shooting pain in that area when I move one or
both arms, even just small movements (on top of the feeling I already
had of the shoulder blade cutting through my skin.) My right shoulder
blade is even worse than when summer began – I didn’t need it to catch
the left in pain intensity, but it’s almost there. Both are popping
constantly, with even a slight move (including typing, so I’m doing
even less of this than in recent months. Somehow, they even rub when
I’m laying in bed.) I’m often eating even less than usual, thanks to
the increased bloated, full feeling and abdominal pains (I’ve never
experienced cancer pains, but, if they’re worse than these central
visceral pains, no wonder pain control is a major issue for cancer
patients), and thus have little energy. Just the thought of food often
makes me feel more queasy. My right side is really bad, from the
shoulder blade down through all the organs (front and back) through my
leg down to my foot. I’m even having trouble drinking. There is
additional pain in my abdomen when I swallow. I’m worried about my
kidneys, as I never was able to get to a urologist. It feels like my
my skin is being scraped off and doused with alcohol 24/7. I remain
miserable and crooked sitting up (and, of course, my shoulders still
catch on the back of my wheelchair.) I feel like my sitting position
worsens every day. Laying down still doesn’t make me feel better, but
I’m spending more and more time in bed because I simply can’t tolerate
sitting up, plus the feeling of tipping I always have when seated. My
right arm still feels weak. I’ve never felt this terrible. I might
have a hemangioma on my liver (suggested after the ultrasound early
this summer), but I was never able to get out for a CT scan to confirm.
Nothing else to say, really, except that I’m sick of this and wish that
it would end.

11/18/05

I finally managed to get that CT scan on 11/3. My abdomen and chest
were scanned, as were both shoulders. I do have a 3.5 centimeter
hemangioma in my liver. I also have calcification in my prostate,
arthritis in my thoracic spine (report didn’t say where), degenerating
disks in my neck and back, and subchondral cysts in both shoulders. My
left scapula is degenerating, right not so bad. Something’s up with
one of my hips, too. All my organs are fine (even the hemangioma
apparently is nothing to worry about.) No stones or anything anywhere.
So, all the sensations of painful organs and fractured scapulas are
still just part of my central pain syndrome, like the bones sticking
through skin feeling, and thus remain untreatable.

12/06/05

I’ve been able to force myself to eat my normal intake, which isn’t
much, most days (as I’ve probably said before, if it wasn’t for Boost
Plus, I’d probably have starved long ago.) Some days, for some unknown
reason, my stomach area hurts even more than usual, and those days I
don’t eat. Don’t sleep, either. The cramped, tight feeling is
terribly intense, and is causing more breathing woes. Despite the fact
that the MRI doesn’t seem to change, I still seem to be losing normal
sensation in my upper back and right forearm. My entire upper back
continues to feel taut and cramped (like my abdomen), with swollen
lumps where bones are. It also gets harder and harder to move my arms,
because all the popping of the shoulder blades every day adds up and
continually makes things worse back there. I can’t lift my arms as far
up as I used to be able to, and even the minor movement required by
typing causes the shoulder blades to rub. The skin feels like it’s
crawling over my scapulas and abdomen. It feels like my skin is
constantly being scraped off my body. My back pain has gotten so bad,
I’m finally able to wear shirts, because they no longer can make the
pain much worse than it is when shirtless (this is good, because, with
heating costs what they are, we can’t keep the house at 80 degrees like
we used to. We’re keeping it at 77, and, even with a shirt, I spend a
lot of time shivering thanks to SCI’s effect on my thermoregulatory
system.) If it wasn’t for the fact that laying down doesn’t provide
any relief, I’d just say the hell with sitting up until something is
done to fix my gut, shoulder blades and spine. I wish there was an
exercise that would lead to an end to the popping, whether the popping
results from bones, tendons, or both – as painful as it would be, I’d
do it. A massage therapist has come a few times, and she feels my
muscles loosen during treatment, but that message doesn’t get past the
damaged area of my cord to my brain, so I don’t feel any relief.
Between the pains, and winter cold that keeps me from even getting
outside, I’m depressed and disgusted. My right side continues to
deteriorate, from my eye down through my shoulder, abdomen, and back,
all the way to my foot. I tried Lyrica, the successor to Neurontin,
but it was no help with the pains.

01/09/06

Pain levels remain extra high, as does stomach queasiness. Bad posture
still seems to be contributing to the popping shoulder blades, which
stick with even the slightest movement of an arm. The blades and
vertebrae still feel like they’re sticking far through the skin, and
the constant feeling of all my skin being scraped off is driving me
nuts. Sleep remains elusive. I don’t know what to do.

03/27/06

Nothing good to report. Massage therapist coming every two weeks, and
she still says my muscles are loose when she’s done, but I still feel
the same tightness and pains. I still feel bones sticking out all the
way across and down my back. Can’t even tilt my chair back without
bones rubbing. Both shoulder blades are catching, making any use of my
arms extremely painful. Left scapula, right scapula – I’d like them
both removed (actually, surgical treatment for snapping scapula
syndrome involves shaving down the scapula so it doesn’t catch on the
rib. For all I know, reducing my scoliois via Harrington rods might
solve the scapula problems.) Skin in upper back still feels taut and
pulls, of course. Same with abdomen. Pains keep feeling sharper;
throbbing, scraping, burning, cramping, et al, continue all over.
Right side still continues to worsen. Muscles and skin below level of
injury still feel as hard as concrete. Spring weather is coming – I’d
like to feel better so I can at least get around the neigborhood.

Went to see yet another pain doctor at the local hospital the other day
(five minutes away – even that ride was troublesome.) He was very
nice, but of no help. He said I’d tried everything he knows about,
save for a morphine pump, and he doesn’t know if they work on central
pain (and they have a lot of side effects and potential problems. My
spine may also be too crooked to thread the catheter up to my neck,
where it would have to be placed.) He also didn’t know what to do
about my shoulder blades.

05/10/06

Still nothing good to report. Feel like crap. I have a sore
underneath my right shoulder blade – don’t know what caused it. The
shoulder blades continue to feel like they stick way out of my back, as
do my vertebrae, and the popping doesn’t stop. Every move aggravates
the pains back there (skin and muscles pull and rip), and every little
bump the chair goes over does, also. My seating balance still stinks,
so the constant fidgeting continues – I’m sure that won’t help the sore
heal. My entire right side continues to worsen. My right leg is
throbbing and feels weaker than the left leg, as is the right side of
my abdomen, and both shoulder blades. The extreme
tightness/ripping/burning has spread all the way across my upper back,
making it extremely difficult to move my arms even a little bit (but I
still do use them.) Between that and the poor seating position (I’m
bent like a question mark), I can barely drive the chair, let alone
type or eat. Things seem to have worsened the last couple of weeks.
Still have the slight, barely noticeable, headache on right side.

05/26/06

Went to see an orthopedist. Nice guy, but no help. He said, yes, my
spine is twisted, but not badly enough for the major surgery and six
month recovery and cast that would be required to reduce the curve.
So, I’m still sitting lopsided, with lousy balance. He referred me to
a shoulder specialist to check on my popping shoulder blades – maybe at
least something could be done to improve that problem.

06/05/06

Went to see the shoulder specialist. He said my scapulas do pop, and
the problem is likely related to both paralysis and posture, but he
didn’t recommend surgery. So, he passed me on to a physiatrist who I
saw two days later (all three of these doctors are in the same office
suite, about 10 minutes from my home.) She didn’t really know what to
do with me, either, but she did concur that the shoulder blade problem
was due to scoliosis and the scapular winging caused by the paralysis.
She injected cortisone under both scapulas to try to reduce the
swelling of the bursas, in the hope that cuts down on the popping. If
the shots help, I’ll know a week or so after. She doesn’t know what to
do for the general pain problem. A different pain doctor from an
unrelated office is looking into pain pumps and central pain.

One week later – No luck with the cortisone. I just keep feeling
worse. Been a lousy week – pains even sharper, throbbing and
skin-being scraped feeling more intense, lousy mood, no desire to eat
due to extra pain and queasiness. Right side deterioration continues.

07/14/06

Haven’t slept for five nights – the increased pains (especially the
scraping, throbbing, and tightly cramped feelings) keep me from falling
asleep, even when I try sleeping pills. Along with every other
sensation, the shoulder blades and vertebrae sticking through my skin
sensation keeps getting more intense – the pain of the right shoulder
blade has pretty much caught with the left one, especially when I’m
sitting up. Breathing is tougher than ever, as is sitting up, and
using my arms. Posture remains poor. Still barely eating, and
drinking less (swallowing aggravates my abdominal pain, as does
breathing and talking, which I’m also doing less of, and what talking I
do is in a low voice.) Still have the very mild headache on the right
side of my head. Even simply riding my wheelchair on the sidewalk
aggravates the pains of the back and abdomen. Impossible to
concentrate on anything besides pains, which really sucks. Forget
going around the block, or even just up the street. Haven’t been out
since those useless doctor visits – tried once, and had to turn back.
Obviously, still no medication found to provide any relief, and of
course nobody knows why the pains always increase. I’m very depressed,
and beyond fed up with this torture. What use is living like this?