The first time I KNEW of a serious problem with my back was in 1990. I was living in
Alaska and was diagnosed with my first ruptured disk. The doctors in the small town I
lived in were unable to do anything about it, other than to shake their heads and tell me
that I had the back of an 80-year-old (at the time I was 32).
I was transfered to a hospital in Anchorage, where I was placed under the care of an
Orthopedic Surgeon, who told me that my best option was a treatment called chymopapain,
where he would inject papaya extract into my spine and it would "eat up" all of
those pesky little disk fragments and make me all better! I asked for more information on
the proceedure, because it sounded kind of "out there" to me (what was to keep
this substance from eating up good bone as well?) and my doctor promised to have his
office send over printed info.
This was on Wednesday and he wanted to do the proceedure on the following Monday (he had
to take the rest of the week off because it was July 4th weekend). I never got any
additional info...I didn't hear anything more until someone came to wheel me down for the
proceedure. My doctor had put me on a Morphine I.V. pump so I wouldn't bother anyone while
he went on vacation and by the time Monday rolled around, I was in no condition to carry
on any kind of a conversation, I was so drugged. I didn't find out untill months later, as
my condition kept getting worse & worse, that the chymopapain proceedure I'd had was
strictly taboo in most medical circles due to the neurological problems it created.
As I lay in Recovery after this proceedure, I KNEW that SOMETHING WAS TERRIBLY WRONG. My
pain was increased a hundred fold & I was delirious from the intensity of it and the
horrible spasms I was having. I was TERRIFIED and thought that my spine had been ruined,
but, when my doctor stopped by Recovery, he just LAUGHED at my screams of agony & when
I asked him WHAT he had done to me, he wanted to know if that was any way to thank the man
who'd just "fixed" me.
Over the next few months I kept getting worse & worse and I tried to get my doctor to
help me, but he said that I was crazy and needed to see a psychiatrist because the
chymopapain had worked perferctly and my problem was in my head and not my back! I became
suicidal from the depression that ensued. My (now ex-) husband believed my doctor, so I
had no support at home and was expected to care for the him, the house, a 10-year-old and
a baby just like always. It was a very dark period in my life & I feel fortunate to
have survived. I eventually left Alaska and went home to Mississippi to see a wonderful
neurosurgeon who not only believed me, but was very supportive and peformed a right
hemi-laminectomy: taking out all the disk fragments that were digging into my sciatic
nerve. I credit this man with saving my life!
Over the next seven years, I continued to suffer from chronic back pain, but it wasn't to
a point where I couldn't cope with it until August of 1998. I had moved to Oregon with my
new husband, Donald, who is WONDERFUL (and supportive) and on August 12, I had had to have
a radical hysterectomy. This was done the old-fashioned way, with a long vertical
abdominal incision (they had to do it this way to remove old scar tissue from my two
C-sections). Obviously I had been dependant on my abs to keep the back in check, because
the intensity of pain in my back was unbelieveable after the hysterectomy.
In October, 1998, I had an MRI and was refered to a local sphine and pain clinic for
treatment. On my first office visit, I was told that my only option for relief was to have
fusion surgery. My two lowest lumbar disks were pretty much obliterated by Degenerative
Disk Disease, resulting in spinal stenosis and spondylolisthesis, which means that there's
nothing holding my vertabra together in alignment in one spot and that vertebra just sort
of slips around all the time. The disks just above and below this are are also pretty
badly degenerated, but not as badly.
I spent the first six months of treatment going to Physical Therapy and waiting for a
surgery date. I was also told to lose some weight during this time. They just kind of kept
me hanging on, waiting for them to set a date, from October until June, when a new doctor
was added to the staff and took over my treatment. They seemed to have really good excuses
for not setting a surgery date (these things just take time, etc.) but I now believe that
they just wanted to bill out as much physical therapy as possible. I've even seen
insurance billings for dates when I didn't even GO to the clinic! I know that sounds
really cynical, but much more has happened than I have space to relate here and there have
been a couple of really bad mistakes made along the way...like having someone who was NOT
a therapist put me in traction, resulting in exascerbating an already painful condition.
The new doctor says NOW that I never even needed fusion because my condition is too bad.
He says that if they fuse only the two worst disks, it will blow the ones above and below.
That's all well and good...but SOMEONE needs to do SOMETHING, I think! This guy also told
me that I was the one who had been "pushing" surgery because I (typical of pain
patients) just wanted someone to magically take my pain away and make it all better! (Like
I thought surgery was going to be great fun....PLEASE!) I had simply resigned myself to
the idea of surgery because they told me that it was the only option open to me.
This guy also insists that I need to have my diskogram redone by a buddy of his because he
doesn't like the "technique" used by the guy that did mine. I don't think so! My
diskogram took 1 1/2 excruciating hours and was done with no sedation or pain meds either
before, during or after. This is not something I want to repeat, so I insisted that they
make damn sure that the films were totally unreadable before I would consider it. My
diskogram was done on December 7, 1998 and it was October 12, 1999 before any of my
doctors actually LOOKED at my films, and then it was only at my insistance that they do
so! (They decided that, if I was going to be such a baby about it, they could probably
make do with the ones they had, after all).
So...here I sit. I'm in constant, excruciating pain with no real medical support.
Fortunately for me, my doctors ARE good about pain meds (I take Oxycontin 40mg twice a
day). I still don't know what can be done about my condition. My doctors continue
vascilating back and forth, without making a decision about anything, saying that my case
has them "stumped". I have tried, and continue to do so, to get new doctors or a
second opinion, but my current doctors are trying to keep me from doing so. One of them
actually called my primary care provider and demanded that she refuse to give me a
referral to someone else, so she refuses to do so. I'm so frustrated with all of this that
I feel like I'm going nuts sometimes. This web site and the chat room really help me.
I only rented this computer for a while, so that I could write some letters, (I lodged a
formal complaint against my doctors this week) but I never expected to find the support
that I have found on-line...IT'S AMAZING!! I was fired from my job back in October, due to
my surgical diagnosis and the financial problems right now are almost insurmountable, but
I want to try every way I can to keep the computer just for the support I've discovered
with all of you.
It helps so much to have others to relate to that know what it's like to really HURT.
Also, I don't get out very much due to pain (I have fibromyalgia & myofascial pain
syndrome too) and physical limitations, so it's amazing to have a support community
accessable to me without having to leave the house.
I guess the moral of my story and the thing I want all you to remember, is that we can not
blindly trust just anyone with our health and our lives, simply because they have a bunch
of initials after their name! There is a HUGE difference between a doctor and a "True
Physician" and I believe that it's up to them to earn our trust. In what other
profession are you expected to pay (up front) for a service and then continue paying (with
total, blind trust) while the person you've hired refuses to do the job he's been hired to
do and is verbally and physically abusive to you in the process!
In America, we are encouraged to be completely independant and self confident in most
every other area of our lives, but, when it comes to the field of medicine, we are
expected to trust these "strangers" with our most precious possession-our lives-
without ever questioning or demanding that they be accountable for their actions!
If you look at things from this point of view, it seems ludicrous, doesn't it?
I would like to close by saying THANK YOU,THANK YOU,THANK YOU to Leslie for maintaining
this site and that I hope that we can all continue to be supportive of each other and
sharing and GETTING BETTER!!
Katie has been kind enough to offer anyone interested to e-mail her..
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