This is the beginning of my story in dealing with chronic
pain; the physical side of things, I will share the spiritual side in another post. At the age of 36 I had my first
surgery, I had researched the surgeon I was seeing and felt I understood the
options to my problem. Even with my
diligence at the beginning of the process, surgery is always a gamble because
surgeons do not fully understand the central nervous system. It is complex and unpredictable at
times.
A surgeon performing a surgery
cannot tell you with certainty that there will not be chronic pain after a
surgery. I have had nine surgeries in
the past three years, eight of them to correct the problem created by the first
surgery. Of those surgeries there was
the original one which was a “simple” day surgery which changed my life forever;
leaving me with acute chronic pain in my right lower abdomen. This pain has since spread in the past three
years down my right leg, around my back and up passed my ribs. It is interesting to note that the area of
acute pain and the central nerve for that area was not the location of the surgery;
it was at least 4-5 cm away. The surgeon
went back in within the month to explore the area to see if he could determine
what was causing the pain (I was convinced he left a sponge or the end of a
scalpel). He came back and said he
remove scar tissue and looked around but there was nothing to see and the pain
persisted. Of course each surgery
exacerbates the pain but I was always willing to gamble because the pain was so
acute. The peripheral nerves have been
damaged along with the main nerve but there is no explanation to how this
happened.
I left that surgeon because he took no responsibility; he
wouldn’t see me or take my calls but I caught up with him in the hospital and
after reminding him who I was and the case he said “sounds like nerve
damage.” My next surgeries were a
hysterectomy, removal of right ovary, trial for neuro-stimulator, implant of
neuro-stimulator, and finally a redo of the implant of the neuro-stimulator
because one of the wires moved.
Hopefully I am done with the surgeries, nine is a lot but I know there
will be more. They will need to replace
my battery pack or fix wires again at some point. It is interesting to note that I also have
nerve damage resulting from the neuro-stimulator.
During these three years I have been open to trying just
about anything the doctors suggest. I
started receiving injections, also called infusions, of some concoction of
cortisone and some other drugs. They
were injected directly into the damaged nerve and it took a good four days
before I was up and around. At first
these injections lasted over four weeks and then less and less as time went on. They would give me about 50% pain
relief. I had one a few weeks back and
it lasted only two weeks with about a 35% relief of pain. I have done a trial for a ketamine cream, it
helped somewhat but there was a snag.
They did blood tests during this trial to ensure the levels of ketamine
were not elevated in my blood stream. Of
course, I ended up being the only one with significantly high levels in my
blood; of course this would happen to me.
The doc asked me if I had eaten it or taken ketamine pills, tongue in
cheek I say: of course this happens to the recovering addict. Even the neuro-stimulator was experimental. It is usually connected near the spinal cord
and will disrupt certain nerves. Because
I have peripheral nerve damage which is wide spread they decided to try putting
a wire across the top and bottom of the acute pain area. I will post a more extensive article on that
patient experience with neuro-stimulation at another time.
So I’ve been the guinea pig, the very “patient” patient, and
now I am my own advocate. I have to be
my own advocate because no one else knows what is going on in my body. It is my duty to educate myself on my
specific ideas, schools of thought, new research, and then pass on the
information to anyone who treats me. I
cannot look back with regrets and resentment, I can only look to the future
with optimism and live in the moment with an attitude of gratitude. Bonnie J
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