Monday, April 19, 2010

So What Happened To Me? Part 3

I am continuing my online journal of my nerve damage journey.  Still can't believe it is taking me a month in between entries, but it is THAT hard to dwell on.  I keep my mind so much in the future, not the past.  But I will be relieved when this is finished and realize it can help so many others.  If this is the first post you have seen, you might want to start at the beginning.

Part 2

Well, here I was a big physical mess and scared.  Scared to live like this, but scared to seek more help.  2 surgeons had not helped me in 3 months, and 2 surgeries and should I trust anyone else?  I wasn't a big fan of doctors at this point.  But then I had this tremendous guilt - I was unable to be any kind of mother let alone any type of wife.  As I pondered this, fully reclined 24/7 in my chair, only getting up to use the bathroom, I slowly fell into a deep depression.  Unrelenting pain can keep you from being able to mentally function at all.

One day, my phone rang and a former Sunday school teacher from 10 years ago gave me a "Come to Jesus" chew out.  lol  She was abrupt and bossy, which was what I needed.  She ordered me to demand more of myself, to believe in God for relief, to have the courage to seek another medical opinion and just to trust that something else could be done.  I chose to follow her advice, much to the relief of my husband.

This time, we chose to see a Neurosurgeon, as the previous 2 Orthopedic surgeons had not helped my nerve situation.  The first visit with this new surgeon was very telling.  He could tell from the simple X-rays I brought that something was very wrong.  He was going to order his own testing, MRI's, CT Scans with and without contrast, but just from the X-ray he could see I was missing a key part of my spine.  Because of this, my spine was over-rotating and shearing as I walked.  This was very dangerous.

If you imagine a vertebra in your back, there are spiny processes that protrude out, and if you turn to the right, the spiny process will keep you from turning and turning and turning.  Make sense?  

Well, mine was missing.  MISSING?  How??  The only possible answer was that it accidentally broke off during the 2nd surgery, yet was not mentioned in surgery notes.  When that happened, a competent surgeon would have changed course and put in hardware for my fusion, not just a non-hardware fusion as that 2nd surgeon had done.  NOTHING was there to help my back stay in place and heal.  

So while the over-rotating was bad news, the shearing was the worst part.  Here is a picture that illustrates what was happening.

As my discs sheared, my nerves were compressed dangerously.   This explains why being fully reclined 24/7 brought me the only relief I could find.  

Medical opinion was that a 360 degree Posterior Lumbar Interbody Fusion (PLIF) was mandatory, this time with full hardware - screws, cages, rods.  The works.  We HAD to stabilize my back before I ended up in a wheelchair.  Nerve damage was secondary at this point, but it was hoped that the nerve pain would be lessened with the back stable.  

We had gone to the surgeon on our way our of state for Thanksgiving and I had 2 weeks to decide what to do.  I reclined numbly in the vehicle, in shock at what I learned.  Yes, I had gotten the answer BUT I went into a state of denial.  I suppose that is common.  Could I handle a 3rd surgery in 12 months?

We opted to go forward, having it done during hubby's Christmas shutdown so he could be home for 2 weeks to help me.   This surgeon was 2 hours away, so we had a 4 hour round trip to worry about.  (We lived in a very rural area and this was the closest civilization). 

Most surgeons who do the 360 degree fusions enter through BOTH the stomach and the back - can you imagine?  Sometimes they do it all in one day and other times they do one side, wait a few days, then go back in for the other side.  I was so lucky my surgeon knew had to do this going through the back only!  The hospital stay after surgery would be at least 2 days, but Little Miss Overachieving Cheri got booted out after less than one day, for her exemplary recovery.  Ugh.  I freaked out and started crying hysterically!!!  I had a 4-hour drive home on curvy, rural roads less than 24 hours after massive back surgery?  

Fortunately, the hospital had a few "hotel type rooms" next door that we were able to rent for another night, to give me a little more time to recover.  The boys were with a relative 4 hours away further North, and hadn't planned on coming back so soon.  The extra night gave the relative time to get them back down to us, for our trip home. 

It takes months to recover from these major surgeries and walking a huge key to success.  Not only did my husband take me walking at nights and weekends, but other friends would pick me up during the day, take me to an indoor mall and walk with me.  I needed to be on a flat surface and walking outside on the pavement or uneven ground was very dangerous. I also could not use a treadmill for risk of falling.

After the recovery and surgical pain meds removed, that nerve burning was still present.  I was so discouraged.  It took me over a year to convince the surgeon to test my nerves, as he told me that it takes nerves a long time to heal and we wanted me to give them a chance.  He ordered an EMG  to test the electrical activity of the muscles and Nerve Conduction Studies to test the function and ability of electrical conduction of the motor and sensory nerves in the body.  My results were not good - I have acute and chronic S1 nerve damage. 

This made sense, because I had noticed I was almost entirely numb laterally from my hips to my toes.  Every time I would shave my legs, I could not feel the razor over those areas and it was scary.  I had to really be careful because several times, I nicked myself or one time even took a chunk out of my foot and did not feel it.  A trail of blood alerted me to the injury.  That is scary!   To this day, I feel very little.  My feet actually feel like marshmallows when I walk - and that is not fun.  Imagine wrapping your feet in a foot of toilet paper and walking, trying to balance yourself.  My feet do not report to my brain where they are with any accuracy and this causes my balance to be very dangerous.  (This is called Proprioception.)

I feel only the insides of my feet - the ball of my foot and 2-3 toes, depending on the day.  I wear "safe" shoes (Dansko brand)  and walk carefully, using a cane in crowds and my walker on bad days.

Anyway, as the surgeon told me these disastrous nerve results, his demeanor entirely changed.  He went from "you'll be fine, give it time" to "Holy cow, I'm so sorry, this is so terrible......".  I finally got my answer and I wasn't crazy BUT it was terrible.  No cure.  Only option was now a Spinal Cord Stimulator first and if that didn't work, an implanted pain pump.  Yikes.

I again went numb and in denial..  Before I faced reality, my husband took a promotion to a larger city and little did we know that taking a referral for a neurosurgeon would NOT work out as we hoped.   Instead of continuing on with my treatment, the new world-renowned neurosurgeon required things be done HIS way.  He utterly ignored my referral or any of  my other medical records on what I had tried or not tried and required me to start all over.  Suddenly the decision to move to an area with extensive medical options didn't seem so great after all.   I would NOT be getting my SCS any time soon, and I was sadly referred back to a pain management clinic. 

I was devastated.  

To be continued......... 


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