April 11, 2018 - Though written 2 years ago, I am trying to maintain the chronological order of events surrounding my Parkinson's, with the hope of making my story easier to follow.
I am cautiously optimistic that spring is finally here. I can’t say with 100% certainty, though, as this is Ohio, and it was snowing just 3 days ago. But today as I walked my dog, Tucker, I felt like Dorothy in The Wizard of Oz. Yesterday was shades of black, white, and grey. Today, I woke up to birds chirping and sunshine. Everyone’s lawns are starting to turn green again, and the tree buds are clearly visible against the backdrop of a beautiful blue sky. My daffodils and hyacinths are standing tall, displaying themselves, as if to show Mother Nature they will not be defeated by the periodic snows they have endured for the last 6 weeks. Yes, there are signs of new life outside, but inside my house as well.
This past winter felt longer than most. Let me backtrack a bit. Life had been cruising along just fine until both of my feet started going numb last November. This was especially bothersome because just 9 months prior, I had undergone a lower back fusion surgery to correct this exact problem. I know the scenario all too well. I see my doctor who takes one look at my back and tells me to call my neurosurgeon. I see the neurosurgeon who orders x-rays. Then her nurse calls to tell me they need a CT scan of my back. All of this in the span of 8 days, at which point I found myself sitting across from my neurosurgeon, stupefied as she told me I would need to have another back surgery.
The first surgery was probably the most difficult experience I have ever had. Years of debilitating dyskinesias (excessive involuntary muscle movements) in my torso and neck from my progressing Parkinson’s Disease had left me with an unstable spine. As a result, I had agreed to a lumbar back fusion (lower back surgery) that was performed 14 months ago in February. At the time, I was told that there was a chance the joints in my back above and below the surgical fusion would one day also need to be fused. I thought such a need would be years down the road, though, not months. But it turns out that the first fusion was never going to work for me, because I have unusually soft bones. My endocrinologist calls it Funky Bone Disease (though I have never found this term in a medical textbook). The neurosurgeons had placed titanium pins in my vertebrae to fuse two joints into one. My body was supposed to help out by forming a bridge of bone across the two joints and making the fusion more stable. What underachievers my bones are - they achieved practically no bony fusion at all. The ongoing instability led to a broken a vertebra directly below the fusion site along with the migration of a metal spacer. In general, 12 mm is not a big distance, but a piece of metal wiggling it’s way out 12 mm to take up residence adjacent to the spinal cord is, apparently, a big problem. My back brace went back on immediately, and over the span of the next month, I had pre-op testing done, stopped taking blood-thinning medications, and waited to be put on the surgery schedule.
I was at the hospital bright and early December 20 for a Merry Christmas Back Fusion Surgery, Take 2. It was just my husband and me. I was uneasy about this surgery. Another major anesthesia. Another major surgery. How on earth was I going to have the strength and intestinal fortitude to go through it all again? The plan was to redo fusion #1, and then fuse one joint above and one joint below, making 3 fused joints in a row.
I woke up from surgery to two mildly frustrated neurosurgeons and only two joints fused. It turns out everything but my bones heal quite well. The metal spacer was so nicely scarred in place that the surgeons spent an hour trying to get the darn thing out. In the process, the lining of my spinal cord was torn, which led to a spinal fluid leak, a fun event that makes for a crippling headache, if not lying flat on one’s back. I was told I would be in such a state for at least 3 days.
Let me just say, there is definitely a learning curve to drinking from a straw while lying flat so as to not spray water all over oneself. I hope it’s a life skill I will never need again. My family visited every day, and the hospital staff caring for me was phenomenal. Three days passed and the neurosurgeon recommended I spend one more day flat, as I was still leaking quite a bit of spinal fluid. Bummer.
Soon it was Christmas Eve and the doctors began inching my bed up 10ᵒ per hour. And just like that, I was sitting straight up with no headache at all. Success! I was finally permitted to get up and walk to the shower. Everyone around me appreciated this achievement, I’m sure.
I woke up early Christmas morning with a crystal clear realization that my family needed me home. I was overwhelmed by a desire to be home amidst the chaos. I got the drain pulled from my back and was soon collecting my belongings to head home. I missed all of them tremendously.
My daughters had waited to open Christmas presents, which was really touching. Somehow I had managed to get all the Christmas shopping done and presents wrapped before I left for the hospital, so it was nice to see everyone open them. I was of no help cooking Christmas dinner, so all the girls pitched in to each cook a dish. Dinner was fantastic, and I think everyone had a good time.
Four days later, the twins were turning 18. We had a family party at home, again with little cooking contribution on my part. We managed to get my sister and her four kids on a plane back to Florida the next day. Later that same day, my family of 7 had tickets to see Trans-Siberian Orchestra. Our seats were in a great location and the show was wonderful. We ate out for dinner, and then I went home to crash. I’m not sure what my neurosurgeon would have thought about my being out so soon after surgery, but, it was a good show, good dinner, and I have no regrets. I was so very thankful to spend some quality time with my family.
Before I knew it, everyone was starting back to school with the older two traveling back to their respective colleges. A friend from church had again organized meals for our family 3days a week for 3 weeks. She is so very thoughtful, and the meals were a tremendous blessing.
It was just me and the dog at home during January. I spent my afternoons sitting in a kitchen chair doing the newspaper’s two crosswords puzzles. I’m hooked on the challenge of trying to guess the words when the clues are often misleading and obscure. After realizing I couldn’t get on the floor and play with him, Tucker lied at my feet while I was engrossed in the puzzles.
February eventually rolled around, and I was doing a bit better. I had my 6-week post-op appointment, and the x-rays looked good.
For this second surgery, the surgeons had used a bone-stimulating gel (BMP) on the right side of the fusion, and a glorious arch of bone had already formed. It was a thing of beauty on the x-ray! I was also allowed to start physical therapy in a pool. Having done aquatic therapy after my first surgery, I already knew the drill. I started leaving the house, exercising in a pool, and soon took the brace off that I had been wearing for 3 months. That’s progress!
A few weeks later, I went to see the neurosurgeon for a 2-month post-op appointment. She felt everything was going well and sent me on my way with a firm handshake that said, “Our time together is over.” What a relief! The surgeon has a fabulous nurse, Mary Lou, whom I will miss, but how happy I was to let the living of life recommence!
Mary Lou provided me with information on a program, called Delay the Disease, of exercises designed specifically for people with Parkinson’s. I’ve started working with Melissa, who has her own gym and runs an exercise program for people with Parkinson’s called, pDNextSteps. I work with Melissa 2 days per week and really like her program. Exercise really does help my Parkinson’s and Melissa is so passionate about her job, she makes exercising fun. Bonus!
So here I am on the other side of my second back surgery and another winter. My family has seen me through yet another rough patch, and I am grateful. Spring is a time of fresh beginnings. Not just for the plants and animals, but for me as well.
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