Happiness and Anger

So, life has been quite an adventure since we moved to Selah back in June. A year ago, I would have never guessed the direction of my life.  I will not lie, it's been rough.  The back pain has been excruciating at times and the poor medical care has taken me on a journey of anger, frustration, self doubt, and growth.  I sit here now feeling both anger, and joy.  Yesterday was my long awaited neurosurgery consult.  In the past two weeks, I wondered if I would ever get my life back; a job, horseback riding, and little things like walking for more than 20 minutes, driving, going out, and being able to put my socks and pants on unassisted.

I have complained a lot, but have tried to stay positive. Only my husband knows just how bad it has been the last 2 months.  As I awaited this appointment and mulled over all the different issues that my doctor said needed to be addressed, including a benign spinal tumor, radiation, stenosis, inflammation and disk degeneration in my upper spine, I prepared for the worst, as my Dr. inferred several major surgeries that would need to be done at UW and neurosurgeons met to discuss my case.  

Yesterday was a bad pain day, and by the time I met with the surgeon, I was soaked in sweat because I couldn't stand or sit for longer than a minute.  I felt anxious and braced myself for the news.  And....well it appears that my upper Thoracic spine issues are not the problem?  W,hat?  In fact, he found that I have 2 separate very rare defects in my spine.  Intrigued, I sat down.  The first defect essentially caused 2 of my lower lumbar vertebra to fuse with the sacrum and ilium on one side.  I was born this way didn't I know? As, I shook my head, he went on to explain that I had another very rare defect in my spine in which I have short chubby disks.  Seriously, I am in my 40s, I've gained 25 lbs since this started and now I have chubby disks, lol.  Apparently, these fat disks are very 

troublesome and prone to problems.  Great, I thought.  

So, then he tells me that likely due to this fusion, this has created stress on my SI joint and I have severe sacroiliitis, which has now caused inflammation in my spine and damage to L4,L5 and this was not seen due to my chubby disks.  How do you not just laugh. So apparently, all the physical therapy and exercise has caused some permanent damage and the increasingly inflamed SI joint.  So...what now?

Well, while the damage cannot be undone, a series of injections to my SI joint, L5,l4, S1 could turn this all around in a matter of days...yes days...  There is a chance it won't work and it's likely that this is a temporary fix for weeks to years and I will most likely need a complete fusion and repair to the defects at some point. It turns out that this neurosurgeon specializes in SI joints and is the go to person in Washington and also studies rare genetic disorders.  I will need another MRI and CT to see if he needs to bore out my lower spine (as he says) to give my nerves more room, but in the meantime he thinks that I have an excellent chance at relief of pain, and regaining my motor abilities just with the injections.  

So next Tuesday, I will have my first injection.  Unfortunately, I am told it is going to cause severe pain, but that it's necessary to confirm the diagnosis.  Apparently, they will introduce a needle and inject a substance to piss off the nerve and if I scream and have pain, he knows this is going to work.  After that he will inject steroids and after 24 hours of pain, I should feel better.  So, I'm feeling very apprehensive...gah. 

So while I am thrilled that my pain and ability to walk will be restored and hopefully soon after injections and PT, I am furious that again the 2 Dr's here refused to let me have an MRI after I wasn't better in a month.  I am furious that they encouraged me to push through the pain of PT, which I sensed was bad and that they misdiagnosed me three times and all 3 treatments have now caused permanent damage.  I understand that this is a tough diagnosis, but the MRI clearly showed the anomalies and they were not noticed until now.  Wow, the incompetence, lack of concern, and dismissing me as a drug seeker, even though I refused narcotics leaves me feeling just very angry.  As I try to let this go and move on, it us a good reminder as a health care provider to not dismiss patients with pain.  It's hard not to, as it seems most are drug seeking, sadly.  Anyway, there it all is.

I am hopeful that the injections work and pray that I don't require decompression surgery due to the damage. I'm ready to do this, defective chubby disks and all. I feel bloated. ....squirrel