Today was hard, physically. I pulled my back out yesterday doing the dishes and just couldn't do my exercises today. Very disappointing. I have been very aggressive with my pilates, strength training, and physical therapy. I want to be RIPPED before this surgery. I have lost 3 pounds in the last couple weeks, unintentionally, and gained a lot of strength and muscle mass. Throughout my childhood I was always very athletic and involved in lots of extra-curriculars that kept me in fantastic shape. Dance, gymnastics, acrobatics, long distance running, cheerleading, marching band (much more physical than people think, some parades are FIVE MILES LONG and carrying a flute AND a piccolo isn't as easy as it looks in Florida!), dancing foolishly as young girls do, man hunt every weekend with the neighborhood kids, knee boarding, tubing, etc.The doctors say if not for this I may have had a much more severe curvature than I do. Thanks Mom and Dad for always keeping me over booked and over achieving!
As an adult with a salaried job that requires irregular hours with many unexpected changes and emergencies, a full time boyfriend, an eight year old boy, seven animals, and a household to maintain it makes setting time aside for myself very difficult. These last few weeks since I met with my AMAZING and GENIUS surgeon, Dr. Anthony Moreno, I have become very diligent with my physical and mental exercises. This is not something I can go into lightly.
For those of you unaware of what a spinal reconstruction consists of I'll sum it up. I have degenerative scoliosis. I was diagnosed at 14, too late for bracing correction. I went to Shriner's Hospital in Tampa and they found I have what is called a double major curve. The top curve (thoracic spine) was around 45 degrees, and my bottom curve (in the lumbar spine) was around 35 degrees. They said they wanted me to have a spinal fusion. A full spinal fusion, from my T-1 (thoracic 1, the first vertebra in the uppermost area of my spine) to my T-12 (lowest of upper spine) and from my L-1 (lumbar top vertebra) to my L-5. So they were going to cut me from neck bone to bottom bone, rip apart all my muscles, take bone marrow out of my thigh (which they say is as if not more painful than the back surgery), break every bone in my spine, put it in a straighter position, then fill it with the harvested bone marrow, and piece it all together with about 1 1/2 pounds of rods, pins, and plates. At the time it was a twelve hour surgery and I was to be in the hospital two weeks to a month, return to school after three to six months. The scar was repulsive, and they said I would lose about 25% of my mobility and range of motion. There is a 1 in 1000 risk of neurological damage, paralysis, losing control of my bladder and/or bowels, the list went on. NO WAY! I was fourteen. My father said that it was my decision because it was going to effect me for the rest of my life. I wasn't ready and refused surgery. At the time I had minor discomfort, obvious minor physical deformity, but that wasn't worth the risks to me. We decided on the monitor progression of curvature route and consider surgery at a later date.
It turns out I was darn lucky to make that decision, because the metal they were using at that time has had a high failure rate and many people's body's have been rejecting the metal and they have had to completely have it removed and redone. The issue with this is sometimes they can not go back in through the original scar, they go through your stomach, under your breast, through your armpit or neck. So after five adjustments, you have scars on every area of your body. No thank you.
In the last twelve years (am I really that old lol?!?) they have made leaps and bounds in regards to the entire procedure, techniques, the recovery process, the way they harvest the bone marrow, so waiting was the best decision. Around 20 I started having some significant discomfort and pain. I have seen multiple orthopedic and spinal surgeons all the way from Tampa to Nashville. I had a great Spinal Surgeon in Nashville. They always want to give me pain meds, but I refuse. This is not a solution, it is a mask, and a dangerous one at that. At the time I was probably 21 and he said I could closely monitor it's progression over the next five to ten years and when the curvature and/or pain became too severe to cope with, that we would do the surgery.
This is when I met Amanda Andrews, Orthopedic Physical Therapist and co-owner of Results Physiotherapy in Hendersonville, TN. She changed my life. She introduced me to pilates, core strengthening exercises, band exercises, exercise and medicine ball workouts, the list goes on and on. If not for her, my curvatures would have progressed more rapidly and I would've either been disabled, or had this surgery a few years ago. She worked with me for about two years and taught me how to strengthen my core to carry the weight of my spine to take the extra stress off it, therefor helping my pain and discomfort.
Fast forward to 2009. My pain is debilitating, some days when my hip/pelvis/lower lumbar spine "pops out of place" as I call it I am literally paralyzed. My entire body contorts into the position the curvatures are trying to deform me into, and nothing helps. Initially, it would only last 30 minutes to an hour or two. Then a couple months later, my left hip begins popping as I walk, workout, basically whenever it feels like it. I can not stand or sit longer than 30 minutes at a time. I have a tens unit, ice packs, heating pads, and lived on ibuprofen and celebrex. I had some MRI's done November of 2009 and they said despite the advanced curvatures and my joints all being out of place, that "remarkably" there was not serious degeneration, bulging, herniation, etc. So I said okay, let's watch and wait a little longer.
By the summer of 2010, the pain and discomfort was so intense I would cry from frustration. I would take literally an eighth of a pain pill because they make me sick and I can't drive, work, or function normally, and it would do nothing. December 16, 2010, I fainted in my home twice after having felt very weak and tired for a few weeks and Kevin took me to the ER. Good thing, because I had been walking around with a bleeding ulcer for weeks without knowing. The doctor said you normally need between 13-16 units of blood in your body to live. I had less than seven. He said if I had gone to sleep, I would have had a heart attack and died within 6 hours! All from the ibuprofen, it ate a whole in my upper stomach and the bleed was so slow I didn't notice.
So here we are, November 2011. My boss got me great health insurance, and I found my savior (let's hope) Dr. Moreno. I had three MRI's a couple weeks ago and the situation has changed drastically in the last two years. Every single disc in my spine is bulging, even my S-1 (top of my spinal cord), there is disc desiccation (beginnings of degeneration), and none of my joints or nerves are where they should be. I also have a massive amount of fluid filling a cul-de-sac in my pelvis that I have to go have an ultrasound on next week. So, the surgery is a must.
The doctor said my lumbar spine is beginning to turn inwards, and that within five to ten years my heart and/or lungs are going to be compromised by the position my ribs have been pulled into, or out of I guess. He said he could do the top half, but only correct it 50%, and then do the lower half later, again only 50% correction. But that's two surgeries, two recoveries, and only half the success. If he does the entire spine at once he can correct it to less than 20 degrees!!! That's practically no scoliosis. He said my shoulders will be level, my rib, back, hip, thigh, and all the other associated pains should be alleviated at least 80%! So it's a go.
I'm freaking out, it's an eight hour surgery. I'll be in the hospital 5-10 days. He said I'm in such great shape hopefully only 5 days. No work, car rides, twisting, turning, bending, lifting, for 3-6 weeks. It will take a year for the fusion to take hold. He is going to take the marrow out of my spine rather than my hip, and the other half from a cadaver (ugh!). He said I won't be able to ever lay my palms flat on the ground again, but that I'm so flexible now I should be able to touch my fingers to the floor once I'm fully healed (after a year). My curves have progressed to 54 and 45, and there is no reason to keep waiting. Not to mention, I'm 26 years old and my boyfriend and I want to have children. Getting this over, done, and out of the way now is the best decision. I just have to keep telling myself this.
I have an appointment with a counselor tomorrow to continue the mental preparation, and I am trying to not look at any photos or literature regarding the surgery that scares me away again. I have an amazing support system. The most wonderful and loving boyfriend a woman could ever ask for, my brother is a paramedic, my father is a nurse, my mother is a teacher and very caring, my bestest best friend who said she'll come over after work the first few weeks/months, the list goes on and on. I'm sure Dominic will be very helpful as well. He was great with Kevin. Getting ice and drinks and bringing him food and propping up pillows for him. He helped connect and disconnect his different physical therapy machines, he was amazing.
I can't believe it's happening in 49 days! That seems so close. Oh my, I am going to continue to blog and keep this online journal (much easier than the old spiral notebooks I've been using since I was four) throughout the entire process. My doctor got me in contact with a wonderful Scoliosis support group, so I think I have all my ducks in a row. And soon, my spine will be too!!!! Goodbye neck, back, rib, hip, shoulder and thigh pain! Hello new improved Amanda! Despite the fact I'll be like the terminator and set off every metal detector I ever walk through. They said I get a card lol, signed by a dr or the AMA showing I have this metal in my back. Cool lol!
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