My goal for this blog is to share my journey of seeking spinal surgery to correct two scoliosis curves that have been on a progressive path to where my spine is now collapsing (I've literally lost 3 inches in height over the past year). I hope to educate, inspire and at times, entertain.
What's up with the name, Bionica? My daughter, 11 year old Lizzie, started calling me Bionica in July 2011 when I learned how my spine has worsened in recent years and the need for spinal surgery. I already have 16 titanium screws in my face as a result of reconstructive jaw surgery years ago; phase I: The Making of a Metal Momma started with this surgery in 1995. Have I set off metal detectors? Yes, while visiting the FBI building in Washington DC where they have super sensitive detectors. Phase II: Bionica will hopefully take place during 2011 where two titanium rods will be implanted along my spine along with supporting screws.
As a pre-teen, I was diagnosed with scoliosis and the doctor said, "... it's not that bad, don't worry about it." Well, I didn't worry about. After my son was born in 1987, I noticed frequent back pain but chose to ignore it. After my daughter was born in 2000, the back pain increased so I went to a doctor who said, "... you are too old for a back brace, just sit up straight." Gee, that helped a lot - NOT! A few years went by and in 2006 I went to a chiropractor for pain relief. My x-rays showed two curves at about 40 degrees each. Severe scoliosis is typically defined as curve(s) beyond 70 degrees. I was shocked and terrified looking at the snake of a spine that appeared on my x-rays. The chiro care was short lived because the treatments eventually aggravated my pain so I stopped going.
Fast forward to January 2011, my back pain significantly increased (constant burning pain in lumbar area) but I'm still try to grin-and-bear-it. I continue with my weight training as it has always provided pain relief in the past. After returning from a vacation in June 2011, I develop a stabbing pain in my lower right ribs which prompted me to call me new doctor. Weight training aggravates my back at this point and I stop training. My doctor just looked at me, not x-rays, and said it is obvious I have scoliosis and surgery will be needed, but he wants me to explore all options before considering spinal surgery. The stabbing pain I mentioned at the bottom of my right ribs is a result of my insides being compressed by the spinal curves and my ribs are pressing into my lungs and pelvis.
I met with an non-surgical orthopedic doctor who prescribes a few weeks of physical therapy and advises that she can do various injections in my spine to help with pain. What I've learned recently is that injections are really hit or miss; they work for some people while they can sometimes make the pain worse for others. My decision was to do what was necessary to stop the curve progression and alleviate some of the pain.
How do you stop an aggressive scoliosis curve(s)? Surgery. Physical therapy does nothing to slow down progression, it is merely for pain management. I'm not one to jump into surgery lightly, but I've had it in the back of my mind that surgery will be necessary at some point in time. That time is now because the quality of my life has greatly diminished over the past year. I'm tired of saying I'm unable to do things because of my back pain. The older a patient is, the more difficult the recovery from such a major surgery so I'd rather take care of it now than later.
During July 2011, I consulted with an Atlanta surgeon who had a lot of scoliosis surgery experience. Jeremy (hubby) and I felt comfortable with her, had heard great things from prior patients, and liked her credentials (fellowship at UCSF with primary focus on scoliosis). During my appointment with the surgeon I had three BIG surprises. Surprise #1: The surgeon recommended two surgeries - posterior (incision down back) and anterior (incision into abdomen). A full fusion was recommended from T6 - S1 (from top of thoracic to top of sacrum). I didn't know spinal surgery could be done from the front of a person, who knew? Surprise #2: My height was measured at 5'7" Wait a minute! "Are you sure?" I asked the nurse. She confirmed her measurement and yup, I'm no longer 5'10". Surprise #3: The surgeon said my thoracic (middle of spine) curve measured 72 degrees and my lumbar (lower spine) curve measured at 59 degrees. Are you kidding me?!
I went ahead and scheduled an August 30 surgery date for the posterior procedure, the anterior surgery would have come 3 months later. Do you notice the past tense in that statement? I immediately went into planning mode for the big day, making arrangements for Jeremy and Lizzie the week of the surgery, coordinating someone to take care of our pets, getting all the necessary medical tests done, etc.
On August 8, 2011 I had the carpet pulled out from underneath me with a single phone call and my world seemed to have crashed. The surgeon called to say there was a problem with my bone density test results, my bones were too soft, and that she would not do the surgeries. *sigh* My greatest fear had become reality, now what? The surgeon referred me to an endocrinologist who will prescribe meds to beef up my bones. How long will that take because my pain and curves are getting worse? My appointment with the endo is Aug 24 and I'm praying that God place the right medication in my path and that my body positively responds to it.
So is that it, did I just settle for this outcome? Absolutely not! Jeremy and I decided to seek a second opinion from one of America's top scoliosis surgeons, Dr. Lawrence Lenke in St. Louis. I've been able to connect with many of his patients through the National Scoliosis Foundation. Quite a few of his patients have said that it took over one year to get an initial appointment with him.
I called his office recently and was prepared to hear that the first opening would be in 2012. The nurse explained that Dr. Lenke only sees the "most severe of the severe... you qualify." I didn't quite know how to absorb that comment because if you were to look at me, you'd probably think I look "normal." I decided not to dwell on that too much and thanked God for putting me in a position to "qualify." The nurse asked, "Can you be here September 21?" I was speechless and shocked (still am a bit shocked) and asked if she was talking about next month? Would I actually meet Dr. Lenke himself? Are you joking? The nurse chuckled and confirmed that she was not joking. Yes, I'll be there! God is good.
So here I am today, cautiously optimistic about my Aug 24 appointment with the endo and my Sep 21 appointment with Dr. Lenke.