The Diagnosis

27 Aug

For those of you who have known me over the past 4 years, you probably remember me teaching with two wrist braces, no weights and going through the motions.  It wasn’t until July of this year that I learned that I have spent years of one misdiagnosis after another, tracing all the way back to 2000. 

After spending 9 months with nagging shoulder pain and after seeing an SF Orthopedic doctor as well as a physical therapist, I decided to see my husband’s doctor at Tam Orthopedics.  Within 5 minutes, he ordered two MRIs – a new one for my nagging left shoulder and the other of my cervical spine.  He also referred me to the cervical spine specialist in their practice.  I already knew that the doctor won’t go into a diagnosis or treatment without a new MRI, so I didn’t question the spine MRI or the referral, but I walked out thinking to myself, “I don’t have any pain in my neck, all of my pain is in my shoulder and forearm.”  Three days later I had the two MRIs and 5 days later, on July 3rd, I went back to see both doctors to get the results of my MRIs.  I saw the spine doctor first (I now realize that this was likely intentional…hit me with the bad news first and save the good news to soften the blow).

The diagnosis ~ severe spinal cord damage and degeneration.  This was causing the pain running down my arm; causing numbness is my hands and feet.  Holy cow, I don’t have Raynaud’s (misdiagnosis #1 back in 2000), this is all stemming from spinal cord damage.  The knot I kept getting under my scapula and pain in my traps…all my cervical spine.  As I am sitting in the doctor’s office feeling shell-shocked, I am wondering why no other doctor I have seen over the years has caught this until now. 

How did this happen?  Based on the damage, it looks like I took a major blow/hit to the head/neck.   We trace it back to when I was hit by a car back in 1996.  The ER doctors took a lot of x-rays and I eventually had to have knee surgery on both knees based on the impact and how I hit the pavement, but my cervical spine was missed.

Recommended treatment?  Surgery, 3 level anterior fusion with bone grafts from the donor bank.  Listening to the doctor describe the surgery, it sounded scary and intense.  The alternative?  Modifications of everything: no amusement park rides, no outdoor cycling, no driving without a neck brace on, no lifting anything heavier than 25 lbs and no lifting overhead at all.  The risk? If I take a fall, I have an 80-90% chance of permanent paralysis.  If I have the surgery, the recovery is about 3 months and then I can start working out again modified and by 6 months, I should be fully recovered provided the surgery goes well. 

Now for the good news!  Should MRI shows prior slap tear and dislocations, but the rotator cuff is completely intact.  All that is needed is 3 months of shoulder PT, but not until after the cervical spine surgery….should I chose to have the surgery.

My case went before a panel of surgeons, neurologists and physical therapists and the consensus was clear: 3 level fusion was the best course of treatment.  I spoke to another doctor and two prior patients and within a few days I decided that the surgery was what I wanted to do.  I am going to be on this planet too many more years to try and be that careful for the rest of my life.  I want to be able to do what I love, pick up my kids, take them to Disneyland, Legoland and Waterworld.  I want to be in Tahoe with them for ski week next year.  I want to work on my overhead squat again.  I want to be able to do simple tasks like putting dishes away without asking for help.

There is a downside: the damage that has already been done is pretty much irreversible.  I have lost fine motor skills such as being able to open jars, door knobs and button small buttons.  The upside: once the surgery is over, the damage will not get any worse.  If I elect not to do the surgery, the next thing to go would be loss of balance and then loss of control over bowel function.  Within 5 years, I would display the same symptoms as someone with MS.  With all this in mind, I would be completely nuts not to do the surgery.  I know myself too well to know that I would rather do the surgery and shift my focus to the recovery.


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