Friday, August 10, 2012

Questioning medical decisions

The other day, a campus employee stopped through on his daily route in a great mood.  He's been having a rough time lately, the details of which I didn't know...until he came in with a "life is good" expression on his face.  My supervisor asked him what was going on, and he jovially replied that he was going to have lumbar spinal fusion surgery on Monday.  The state employee health insurance finally approved it (after at least one appeal).

He went on to say that he had chronic back pain for years, but more recently had referred pain down one of his legs.  His doctor told him that this was now an urgent matter and he needed to have his lumbar spine fused.
Diagram of the brain & spinal cord with corresponding body parts of impairment
Spinal nerves & connecting tissues

His comment about the referred pain being an emergency situation put a certain anxiety in my mind.  I've had this broken spine mess diagnosed in 2008.  At first, aside from moderate pain, I didn't have too much trouble.  I was still belly dancing with a troupe, dancing 10-15 hours a week plus other exercise.  When I failed out of conservative treatment options (physical therapy, epidural injections), my orthopedic doc told me that my options were either pain management (medications) or spinal fusion.  He proceeded to tell me that spinal fusion has a low success rate, and even when it does provide relief, it tends to make the neighboring spinal joints unstable making further fusion surgeries necessary.  I was advised to not do the surgery until I started having nerve problems.

Fast forward a couple of years.  Eventually, I quit dancing as I figured out that the spinal movement required in belly dance aggravated the messed up joint (with an L5 vertebra that wouldn't heal, partially because it wasn't immediately diagnosed).   I kept up with other types of exercise from mixed martial arts (non-contact) to CrossFit, until I started having nerve damage issues related to an unstable joint (that lead to a degenerating disc).

With nerve damage symptoms cropping up, I decided to have a frank discussion with my nurse practitioner about spinal fusion surgery.  I was afraid of the risks of the surgery.  The success rate for folks with normal physiology isn't very stellar, and after some spelunking on PubMed, I found that there were no studies about spinal fusion in folks with my birth defect.  Since my birth defect impacts healing (everything from muscles to ligaments to nerves) and bone reformation, spinal fusion seemed like a really poor idea for me.  My risk of the fusion failing because of my body's inability to heal properly is pretty darn high.  This combined with my pain management nurse practitioner telling me to wait until the nerve damage is severe enough to where I'm having bowel or bladder problems has lead me to say no to the surgery, at least for now.

I still can't help but second-guess my decision to say no to the surgery.  Some days I have trouble feeling my feet.  I usually have to look down at my feet to ascend stairs to make sure that they're going where my brain tells them to go.  I've almost closed my foot in a car door thinking it was in the vehicle.  These are just some of the non-pain issues.  I wonder if I could be the statistical outlier that would be helped and not hurt by the surgery.  I wonder if I doubt my decision just because I'm still uncomfortable with using a wheelchair on the bad days.  I wonder if I'm making my already precariously aging body worse off.

I'm trying to decide about getting a second opinion on my spine, this time with a neurologist.  With my crummy insurance though, I'm afraid that my insurance will decide to not cover the costs of any diagnostics.  MRI scans are expensive, and the last time my orthopedic clinic took an X-Ray, my insurance refused to pay for it, sending me a letter saying that they needed a report on my "new injury."  I'm also afraid that the neurologist won't be any more knowledgeable about my birth defect than my orthopod is, and that I'll be stuck between being a case study (doing the surgery) or refusing (and being an irresponsible patient).

Maybe my background in disability studies is what is keeping me from seeing the nerve damage signals as an urgent matter.  When walking isn't the pinnacle of human locomotion, it's not prioritized in quite the same way (at least for me).  Even though I intellectually know that wheelchair use is not giving up, I'm still acutely aware that a wheelchair is seen as "bad" and cane is "better," even when I've come to see my wheelchair as "fast" or "strong" and my cane as "stubborn" or "self-conscious."

There's still a lot more for me to unpack about my current surgery much more.


  1. I think you are right to put off spinal fusion for now. I think what you have to ask yourself if the possible negative outcomes are better than what you are facing now? Yes, you have lost some sensation and have trouble walking, but if something happens in surgery and you LOSE function instead of REGAINING function, is that going to make your life easier or harder? Painful or less painful?

    1. I'm honestly more afraid of the pain than loss of sensation, but I suppose that's really more from knowing a lot of folks that live with paralysis, spina bifida, MS, and other things that impact nerves. If I could be guaranteed (or mostly guaranteed) a drastic decrease in pain, I would probably risk it honestly. The only other person I've ever met with pituitary dwarfism along with having spinal fusion regrets it and lives with more pain than she started with....and that scares me. It's easier to make sarcastic comments about my cat laying on the part of my leg that I can't feel than to try to mentally slog through pain.

      We'll see what happens!