Sorry for the lack of blog posts but I've been recovering from surgery and haven't exactly bounced back the way a younger person might. This is my second surgery since starting this blog and I don't think I've ever been explicit about my condition. If you already know the story, feel free to skip past this post.
Ten years ago (May 2002), I was the passenger in a three-car collision on the freeway in Arkansas. I broke my left wrist and it wasn't healing very straight. After two out of three doctors in the orthopedic office recommended I have surgery, my radius was repaired with a metal plate. While still in a cast, I moved back to Southern California for the summer. Once I was out of the cast, my wrist, hand and fingers weren't working right, so I was sent to physical therapy. I didn't get a chance to make much progress because I needed to head to Oakland to start graduate school. Once in Oakland, I started a long saga of trying to regain movement in my wrist and hand, which involved another surgery to remove the plate and a number of outpatient procedures. Not to mention, countless hours of physical therapy with therapists ranging from darling women I didn't mind spending time with to raging bitches that brought me to tears and inspired me to write strongly-worded letters.
As an added miserable bonus, I was diagnosed with a unusual condition that mainly affects the sympathetic nervous system and was causing me a lot of pain. I met Tom while I was thick in the rehab process and trying to find relief from pain. I was also persueing a master's degree in writing, which posed it own set of challenges. Fast forward almost three years. I had regained a lot of the movement in my wrist and hand. (To this day, my hand/wrist doesn't have full range of motion but I've completely adapted to it and it doesn't interfere with my day-to-day life.) But the pain was debilitation and the medication I was taking was causing me to be foggy and fatigued, not to mention they were too toxic to use during pregnancy. A solution was suggested by my pain doctor but I was skeptical. He wanted to implant a spinal cord stimulator into my body that would essentially have wires going into my spine (the epidural space, specifically) that would send a message to my brain to feel vibration in my arm instead of pain. After a second opinion confirming this could be a very good solution to my problem, I decide to go ahead with a trial. The wires would be inserted into my spine but the rest of the hardware would be external. I needed to see if I responded well to the simulation since some people find it annoying and would rather feel pain than an unusual vibration in an extremity. About a week after my wedding in October of 2005, I went in for the trial and I was happy with the stimulator. In fact, I had to wait until Thanksgiving week to get the permeant implant and it seemed like too long to wait. In addition to the wires in my spine, I had the battery pack inserted in my abdomen. The wires from the battery pack wrapped around my rib cage and went high on my cervical spine (just below the base of my neck). I had three incisions to get fully implanted. I also had an awesome "fun fact" about myself. Jokes about "Frankenbride", "Bionic Woman" and "Cyborgs" were flying around me like crazy, but I was happy because the implant was providing pain relief. A large part of that relief had to do with the exact wire placement and the programing of the vibration feeling. A month after surgery, we were off to Hawaii on our honeymoon. I biked, hiked, snorkeled and surfed.
Here I am at the end of a hike on Kauai in the most unflattering pants ever made. It looks like they were probably very practical. I'm happy to say, I don't think I still own those pants. But I was proud of myself for doing the hike, because it wasn't an easy one.
A year after the surgery, I was weaning off the medication. It was a slow, difficult process but I had the best reason in the world to do it. I wanted to get pregnant and I wanted to be drug-free to do it. I had to rely only on the implant, tyelnol and a heating pad to get me through the pain and through the pregnancy. About a month before my due date, I was lying in bed while Leo flipped like a fish in my uterus. The stimulator's vibrations suddenly felt different but I figured it was because I was laying down. After recharging the battery and adjusting the program, I realized the vibration was in the wrong spot all together. I visited the pain doctor who said that the wires in my spine could have slipped out of place but there was no way to know without an x-ray and no x-ray until after I delivered.
I'll never forget going for x-rays with tiny little Leo. An old lady in the waiting room told me "that baby is cold!" I'm pretty sure he wasn't. The x-ray showed the wires had slipped down and needed to be surgically put back in place. So when Leo was just six weeks old (another Thanksgiving week), I went in for
surgery. It was Tom's birthday, in fact. My mom accompanied me to the surgery with the giant hospital rental breast pump in a suitcase. I don't honestly remember what the recovery was like, but I must have done okay. Unfortunately, the second round of incisions in the same spots (they had to full replace the whole stimulator), left me with some unattractive scars.
During that revision surgery, I explicitly told the doctor I planned to have another baby and I didn't want the same problem happening again. He patted me on the arm and assured me there was plenty of slack in the wires to accommodate my belly stretching out again. Well, he was a lying liar lying-pants because almost three months before my due date with Serafina, the wires pulled again and the vibration moved to my chest. I was understandably upset, but I knew there was nothing to do. The upside was my condition was improving and I wasn't experiencing the same level of pain I had been in the years before. In fact, it took me over two years to even seek out my options for pain relief and possible stimulator repair. Needless to say, I didn't go back to my original pain doctor and instead visited Stanford Pain Clinic. The doctors there told me I really had only two options, take the whole thing out since I had improved so much or have a different kind of "non-slip" stimulator implanted that required cutting my spinal cord and a very long recovery time. I told them I'd think about it. On the drive home, I said to myself "what the hell is there to think about?" as I had visions of a circular saw opening up my spine. I wanted to wait until after I was completely done breastfeeding before going into surgery for the removal so I could take some real drugs. Gotta say, I'm very happy I did since it feels like they removed the battery pack from my belly with an ice cream scoop. The surgeons also said they improved the belly scar so hopefully it will be smaller (I haven't seen it yet). It would be great if it just looks like I had some random and needless organ removed. Though the stimulator always made for interesting conversation, I'm glad to be done with this chapter of my life. I'm not completely pain free, but I'm am leaps and bounds from where I once was.
I'll go tomorrow to have them check the incisions and remove a few stitches. I'm bringing both kids, which will allow me to use the carpool lane during the morning commute, but I'm not sure if there are enough snacks in the world to keep those kids happy during this appointment. We'll see.
A lot of factors had to occur to get rid of the stimulator; my pain condition improving was a huge one, which doesn't occur for all patients but I'm a lucky one. I needed to be done breastfeeding and have some time in my schedule when my preschool commitments weren't too heavy. But the biggest thing that made this surgery possible was having my mom in town. She stayed with the kids all day Wednesday while Tom took me to the hospital and then she kept them out of my hair for the rest of the week. She loves her grandkids, but they are the biggest suckers of energy on the planet. Look it up on Google. I swear it's true.
Did you make it through all of that? Wow. Here's your reward: the pure joy of Leo flying a kite with his Nana on a windy afternoon (while I laid in bed dazed on pain killers).
