At almost 4 years in recovery, 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. Throughout the next year there were a lot of different specialists and appointments; each time I brought someone in recovery with me to help with decisions about treatments and medications. Having a sponsor was invaluable; she listened to my feelings and helped me to process a lot of negativity. At her request. I contacted a doctor who specializes in addiction and he began to see me again every 3 months; I needed to ensure accountability with my sponsor and a medical professional who understands addiction because I knew pain or medications or both can easily lead to relapse.
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 have taken medications for the pain because there is no life without the meds. As I said above, I saw an addiction specialist and he made an interesting point: If I allow myself to be in acute pain for an extended period of time...indefinitely in my case, then that puts me at great risk for relapse. That gave me clarity: I needed to have comfort to some degree using meds, I needed to keep recovery number one, I needed to stay accountable, and I needed to start enjoying my life again. 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. It is also my goal to just keep going in the direction of non-addictive alternatives and to stay accountable in order to stay safe. 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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Thank you for your comments. I welcome comments as it is a way for me to learn and grow. Thanks for keeping the comments 'PG' as this is a public site. Blessings and Love <3 Bonnie