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Thursday, April 30, 2015

Almost Lost My Legs

This happened 14 years ago. We were all living in Cambridge, near Kendall Square—this was a good five years before the area exploded with big Bio Tech spondulucks. Mostly the neighborhood was home to MIT, a huge Portuguese immigrant population, a lot of townies living in dilapidated duplexes and triple deckers and the infamous Mayflower Poultry sign. (they sell T shirts! I think I need one.)

Jen and I were both working for a Back Bay printing shop at the time and walked to work most days. Yeah, it was close to a three mile hike each way BUT walking along the Charles was beautiful and this was our daily exercise.

I was the training director for the company and Jen was a general manager (responsible for production and retail departments). As I was putting away books and class materials one day, I got a huge sudden stab of pain in my back and was unable to stand upright. I just figured all the walking without stretching before or after had maybe done a number on me.

I stayed home for a couple of days doing nothing beyond watching TV while glued to a heating pad. My back felt better but my right leg was now weak with a side of numbness. The Amazing Bob made an appointment for me with my Primary Care Doc. At the time I had Harvard Community Health Plan. With referrals I could see my pit crew, my neurological specialists at Mass General.

The HCHP medic’s pronouncement about my weak leg and that sudden episode of back pain was that I had sciatica. She said I should rest it—feeling and strength would return in a month or so.

This surely would’ve been a fair guess IF she didn’t already know that I had/have Neurofibromatosis type 2.

A month later and the weakness was getting more pronounced. In fact, I was beginning to drag my right leg. I returned and the doc insisted on the accuracy of her prior diagnosis, telling me to give healing another month.  Another four weeks without restorative joy passed. I was more than a little worried and pissed. On my next visit to this pathetic shit stain doc, I told her that the weakness was most likely related to the NF2, I needed an MRI AND I had to see my docs at MGH. She continued to insist that it was sciatica and would improve—I shouldn’t be so impatient. While she DID finally give me a referral (I was immovable on this), I had to first see a neurologist that was part of the HCHP family. OOF!

Hoop jumping? Yeah, I was giving the poor lions of Ringling’s serious competition.

Eventually I got that MGH MRI and neuro appointment. When Doc Parker got the results he immediately, do NOT pass Go, sent me to meet with a surgeon. Apparently I had a tumor the size of the Nimitz wrapped around my spinal cord.

The awesome surgeon, Fred Barker, told me I needed to be in the OR pronto as in the next day. He also mentioned that I had a 50% chance of losing all feeling from the tits down. I replied “Dude, that sucks! What happens if we just leave that bad boy in there?” Well then, I would DEFINITELY lose all feeling because I’d be all dead and shit.


Fast forward to just after the ten hour surgery—Jen and TAB were allowed in the recovery area to see me as I swam up out of the anesthesia. Not only did I still have sensation below the boob line, my right leg felt GREAT. I was all set to Jitterbug and Lindy Hop my way home.
My awesome, fully functioning gams!

Apparently I attempted to do just that. As the wonderful nurses chilled down my still doped up, post event euphoria (lay down and don’t move your legs so much—just for a little bit. OK?), I asked Jen Did you remember to set the VCR to record Buffy?


Why does this all come up now? My health insurance just switched. While I can def see my MGH crew, I need to get a new Primary Care Doc and it needs to be someone who understand Nf2 and won’t make me jump though a zillion rings to see my guys. Yeah, I’m wickedly stressed BUT, later this morning the awesome, angelic Ken Moore at Manet Community Health Center will be helping me out.

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