Julie, Ellen and Jen discuss living with scoliosis spinal fusions, becoming yoga teachers, and how our bodies have evolved through the years.
I'm Patty, originally from the Rocky Mountains of Montana, now living in the Seattle area. When I was 11, my mother asked me why I had a book under my sweater. She reached out to touch my back, and her face drained of all color when she realized it was my shoulder blade sticking out.
After a few months of exercises and rounds of doctor appointments, Mom and I left my sister, three brothers and my dad in Butte, and boarded a train to Spokane. I was put in traction where they teased me saying they were going to hang a Montana horse thief! I got along well with this doc. I loved that he could break through my fears with jokes. After I was stretched out, they put me in my first body cast, just to get me used to it before surgery. I wore it for a month. When I stepped off the train back in Butte, my dad burst into tears because I was 3 inches taller!
On July 15,1964, I had a bone on bone fusion (no rods) in Spokane. I wore another body cast for 4 1/2 months. It came up behind my head, under my chin, and down to my hips. Somehow my parents, my siblings and my friends made sure I was included in everything. The nuns in my 7th grade class rigged up a desk for me because I couldn't look down. My engineer dad made me a desk for home with a drafting table top that I could lift up. I even learned to chuck small rocks with my feet! Won a few bets along the way. I got a new cast in November, and it had no head piece. It felt so good to really wash my hair. In April of '65 I had the cast removed. My friends threw me a surprise 13th birthday party. Before I got each cast removed, my brothers and sister would draw all over it, and write jokes and notes to the doctor. I think that year was the most fun of my childhood. Mother and I would dress up to ride the train. We stayed in a hotel in Spokane, and she taught me how to handle myself in a "big" city. I actually felt sorry for my Cinderella sister who stayed home with all the guys.
I'm not even sure which vertabrae were fused. There were 9 in all, some T, some L. After all, it was 52 years ago, and I never paid much attention. My mom always knew, but she's been gone 30 years.
The State of Montana paid for my college tuition because of my back. I have a degree in writing and was a newspaper columnist for many years. I've been married 40 years, but never gave birth to a child. We do, however, have two sons we adopted as newborns. First grandchild is due in May! My husband and I are both cancer survivors. I have often wondered how much my infertility and colon cancer might have been exacerbated by being blasted with X-rays at puberty...to say nothing of being raised in a toxic super-fund mining town!
I've had some big challenges with pain over the years. Although my posture is still good, I think my fusion is slipping a bit because I've lost a few inches of height and more recent x-rays show more curvature. The most important thing for me is keeping my weight down, and staying flexible where I can flex. Recently I started Yoga instructed by a close friend who is also an R.N. She's making it her mission to find out what will work for me. I'm going to teach her some cooking tricks in return, except that cooking is the thing that is the most painful at this time.
Finding clothes to fit is always a challenge, but I've learned that layering works. I had a dress made for me for my son's wedding, and I felt beautiful.
Walking long distances is really difficult. I can do about one quarter of a suburban shopping center in one trip. My doctor signed off on a Disabled Parking Permit that I only use when I need it.
I often use my feet to pick up things from the floor, and I can still fling a rock about 40 feet. I have a husband who understands me and my limitations, and tells me I amaze him even when I doubt that it's true. Life is good. Painful, but good.
Your twisted sister,
My story is crazy in I that I was told at 16 I had scoliosis and I would have trouble later in life.
Fast forward to 2 years ago (age 52) and had the shock of my life. I have led a very busy life ... two awesome children, hiked all over the US ,ran a half marathon at 50 and even pole danced for 3 years(lol wasn't great at it & we just had a moment of silence because we just sold it),and I've been a flight attendant for over 10 years. No one ever said you should get that spine checked out! I grew up with the pain so I just attributed bad days to over doing it. I'm very outgoing, lots of energy and tend to plan and do too much in a day.
Two years ago I saw an ortho doc thinking I had pulled a muscle at work. He walked in after seeing the X-rays and asked me what I did again and how did I exercise? I think I threw him off and once I saw the X-rays I knew why. I told him he had the wrong X-rays and that wasn't me.
So began my journey of looking for a surgeon. I was very fortunate in that I could fly around the country. Everyone I did see told me not to have the surgery until the pain became too much. After seeing a few doctors, we decided on an incredible ortho/neuro surgeon that only does scoliosis surgeries close to home. I will tell you each doctor told me I would have to have surgery or the way it was progressing I would have been in a wheel chair within 10 years.
So March 31, 2015 was a 5 hour surgery and April 2 was my 11 1/2 hour surgery. I had complications from the hospital care and ended up staying in the hospital for over 2 weeks and don't remember much of the first 3 months due to the recovery:)
I am beyond excited after 10 months of being off work to start work again as a flight attendant. The dogs & I walk at least 3 miles a day and I am up to a mile at a slow run. I just met with a yoga instructor and also planning on taking paddle board lessons soon. Thank you for letting me share my story!!
They Say We are Made of Steel
My name is Amanda, this is but a small view into my life and what it’s like living with Scoliosis. This autobiography will take you through some of the struggles, fears, tears and life lessons that I’ve learned along this journey. My hopes for sharing my story, is to inspire others to stay the course and face their fears head on. The joke is once our spines are fused, we are now made of steel? I often wonder how much of that is true.
Growing up in North East Louisiana, my childhood was as normal as any other kid’s. I was very athletic, played softball, did gymnastics, took baton lessons and maybe even a dance class or two. Scoliosis wasn’t a word I was very familiar with, let alone spell it. But the summer before my 5th grade year (I was 12 at the time), my cousins and I were jumping on their trampoline. Somehow I landed on my right side and pulled a muscle in my neck. The pain caused by the sprain in my neck went from bad to worse. I remember staying home from school the following Monday and my mom taking me to see my pediatrician.
That fateful Monday, was the day I heard the word Scoliosis for the first time. My pediatrician’s daughter had just been diagnosed with Scoliosis and thankfully he thought to examine my entire spine and not just my neck. This is when he noticed a slight “S” shape in my spine. Being from Louisiana, some of the top doctors could be found at the Shriners Hospital for Crippled and Burned Children. So we made an appointment, and my mom, and I set out to the nearest hospital in Shreveport, LA. It was then, I learned my curves were 22 and 17 degrees at the time. What a difference a few weeks can make. Going from a nonstop 5th grader to hospital for CRIPPLED CHILDREN. What an awakening! I believe it was at that appointment, that I learned humility. There I was sitting amongst children in wheelchairs, some born with birth defects in their limbs and ME. How did I get there? Was I born with Scoliosis? Would it progress as I aged? Would my mom be a grandmother one day? All of these questions were running through my head. But at the same time, I realized just how much every child in that room had in common. Maybe my first visit was at an older age than some, my back brace wasn’t as noticeable as some of the other children’s prosthetics, but none of us knew the answer to “why me”? The selected few given a gift to either weaken up or make us stronger. At the Shriner’s hospital I was fitted for a brace. I remember wearing it to school 23 hrs a day! It wasn’t fun to be the one everyone looked at, so instead, I would talk, I would tell them what was going on. I wanted them to know that I and any other child with a deformity was NO different than they were.
Years went by and I continued to wear my brace. And to no avail, it did not correct my spine, and did not keep the curves from progressing. In the summer of ’94 my family moved to Jackson, MS. This is where I was fortunate enough to meet Dr. Pat Barrett. He was the top pediatric scoliosis physician in the state. He was such a kind physician who spend a lot of time reassuring me and my family that there was nothing that could be done other than to wear my brace and to “wait and watch”, meaning, wait and watch to see if the curves progress enough to warrant surgery. (A 30 to 35 degree curve was the magic number back then). So we waited, but not for very long. By the spring of my sophomore year, my curves had progressed to 35 degrees on the top and 32 degrees on the bottom. So what did that mean? Time to sign up for surgery!
I’ll never forget sitting in that room, and deciding a date for my surgery. With an 8-12 week recovery period, I wanted it done ASAP. I picked the very first opening, the Tuesday after Memorial Day. The plans were for Dr. Barrett to fuse me from T2-L3 or L4. To my doctor’s surprise, when he opened up my back and pulled the muscles free from my spine, my curves actually corrected themselves. I was almost CURVE FREE once it was all fused and 2-1/2” taller! What a feeling to lay down one day and stand up 2 days later taller than your mom. He used the clips and rods that everyone in the 90’s seemed to use, but there was one minor flaw in my surgery. My lower curve extended into my hips. Thus my hips would always be uneven and I would eventually need revision surgery to correct the last two vertebra that weren’t fused. I went back to see Dr. Barrett every few years and everything seemed to be holding up just fine. Other than a few aches and pains during college, I never had any trouble with my spine. Until one day, while working in the yard I heard a pop, I fell to my knees and knew something was wrong. Turned out I had developed a stress fracture (spondylolisthesis) due to the unnatural mechanics my vertebrae were forced to endure. So I returned to Dr. Barrett, and he told me to do EVERYTHING possible to keep from having surgery, for as long as I could. Well, after steroid injections, facet injections, Nerve Ablations, etc I was able to make it 8 years, which also included having a child. (I was put under general anesthesia during delivery for safety purposes). I knew revision surgery was lurking around the corner.
Finally in May of 2012 my fractured L5 vertebra had become so unstable that NOTHING would help. So in the same conference room where I sat almost 20 years prior, I scheduled my revision surgery. Dr. Barrett had retired by this time but his partner agreed to take on my case. July of 2012, I had my 6 hour revision surgery which included an ALIF (Anterior Lumbar Intrabody Fusion) with posterior hardware. In layman’s terms I was cut from the front, my L5-S1 disc was removed and replaced with cadaver bone. I was turned over, and they used pedicle screws and rods to fuse my last two vertebrae together. A few months post op, I began to feel a popping in my lower spine. About 8 months in I was back to taking pain meds, and trying everything to control my level of pain.
This is where my story takes a strange twist. At the time I was a pharmaceutical sales rep and was always on the go. I LOVED my job, but my body began to tell me to slow down. I didn’t listen and my body’s response was to begin running fever? It took me a while figure out that my system was suffering from adrenal fatigue, and my body couldn’t keep up with the demands the pain was putting on my adrenal system. My pain management doctors told me there was nothing left except for an additional surgery because now my OLD hardware was coming loose? Yep, another revision surgery. Seriously, I wasn’t even 1 year post op, when I found out. I tried my best to make it through the day, but my body fought back. It was such a horrible feeling to have the desire and drive to GO and DO, but my body just wouldn’t let me. This made of steel back was failing me yet again and depression and anxiety set in. I spent many days home sick in the bed, my world was revolving but I was stuck in bed! If you have ever seen the joke played on someone where they are duct taped to a wall, that’s how I felt. I was a 35 years old with a 7 year old daughter and couldn’t participate in her life and I had had enough.
So my search began for the best. I started local in MS, but none of the doctors seemed to be a good fit for me. If I were going to go through this surgery AGAIN, I wanted it done by a physician that ONLY did scoliosis and revisions surgeries. After a lot of research I found Dr. Michael O’Brien at Baylor in Plano, TX. Not only was he able to go in and remove some of the old hardware that was causing restrictions at the top of my spine, he also was able to give me a pretty significate lordotic curve. Which means no more flat back, I have a butt now!!! He also planned to correct my uneven leg lengths. All in all, he performed 41 separate surgeries within a 12 hour span, once again cutting me from the bottom of my breast bone to above my pubic bone. And on my back my incision is from the top of my shoulders to my tailbone.
So here I am, almost 4 weeks post op, trying to get used to my new center of gravity, my new more natural sway in my lower back and new range of motion in my neck. It’s amazing how advanced they have come in spine surgery. Now with even more STEEL in me, I feel freer than I did years ago.
Not all stories have a happy ending. It took me trying different types of medicine, dry needling, trigger point injections, multiple pain doctors, interviewing 5 different orthopedic surgeons (3 of which operated on me) to get to where I am today. No, I’m not pain free yet, but I feel a lot better and more stable than I have in a long time.
I’ve learned so many lessons about life throughout my journey. The empathy and compassion I still hold for those children that I met many years ago at the Shriners Hospital, I wouldn’t have that connection, had I not gone on this journey. Others who suffer with chronic pain, every day is a struggle and unless you have lived it, you will never understand it, so be supportive. Not every person that takes pain meds are taking them because they want to. Some need them to survive, so try not judge. My favorite “You don’t look like you hurt”? Can someone please tell me what hurt looks like? Yes, usually the smile on our faces are fake, we smile through the pain. But when you have no other option, what else can you do? You can either define your limitations, or let them define you.
My children are now 39 and 34, in the middle of their productive, busy adult lives. They are also functioning with fused spines and rods in their backs. Each had spinal fusion surgery to correct and prevent worsening of their curves. These surgeries were performed when each was a fairly young teenager. Our son was 15 and our daughter was 12.
One of the hardest things I remember about this time was being strong enough not to take the easy road and do nothing.
Why would anyone be tempted to do nothing? Because these were considered elective surgeries…our children were functioning fine, and the curves were pretty well disguised in clothing. But to project down the road, a worsening of curves to the degree that heart and lung functioning might be compromised as well as disfigurement, was not something I wanted them to have to deal with. But these are very big surgeries. Young people, who are in good health, do recover relatively quickly and move on with their lives. I know this was the right decision for them, but I also know that it is not an easy decision for any parent to make.
When I was 11 I found out I had S-formed scoliosis, which at that time wasn't at more than 20 degrees, but with time it got worse, I wore a boston corset at 13 but it didn't help at all, I still progressed and October 2013 I finally went through spinal fusion in hope for a better life, with less pain. At that time my two curves were both about 55 degrees.
The surgery was more than successful and they fused T4-L2.
Before my surgery I was already a fitness freak, I did pilates, weights, went running...but it wasn't until about 5 months post op that I slowly (since I was still healing) started with yoga and I have to say, it changed my life forever.
There is a lot of accepting yourself in yoga and listen to your body, but also it helps so much to gain flexibility and strength in parts of your body that are not fused so with time you learn to move just as smooth as before, if not smoother. I am now 25, it's been less than two years since my surgery and I've never felt better.
I am hoping to start a blog about my journey one day, until then you can find me as @aly_yoga on instagram where you are more than welcome to contact me.
Lots of hugs to our titanium-community :)
"My first hand account of the journey that I have endured with my scoliatic spine since I was 12 years old. This is an adventure that I've only recently begun to acknowledge that I will be traveling until the day I die."
Valerie had a 3-stage revision in 2010 with most of old Harrington Rod hardware replaced with titanium followed by multiple surgeries after. She has been through an incredibly trying journey since her early spinal fusion for scoliosis, but is excited to connect with other scolis post fusion. Read more at her personal blog HERE.
Holly underwent a spine fusion surgery for scoliosis at the age of 39, as a wife and mother of two young children. She is returning to surgery June 2015 for a repair to her lower rod that came "unscrewed." Hopes are high that the fusion is well formed and the rod can just be removed instead of re-fused. Holly's Journey can be viewed on her Facebook page HERE.
In 2009, at the age of 12, I was diagnosed with severe scoliosis. After consulting with several doctors, it was decided the only effective course of treatment would be surgery. So, in December of that year, I underwent a 10 ½ hour surgery to remove a rib, fuse my spinal discs from T-3 to L-4, and have two titanium rods and 28 screws inserted into my spine. It was a frightening experience, and I was unsure of what kind of life I would have after surgery.
Would I be normal, and most importantly, would I be able to dance again?
I had been a dancer my whole life, with dreams of someday representing my school on the varsity dance team. I was determined not to let my limitation stop me, and after a lot of hard work, I returned to dance only 3 months after surgery. I recently completed my senior year on varsity, and over the past three years, I have contributed to two State championships, two Regional grand championships, and I was named to the Oklahoma State Dance Team Directors’ Association Eastern Regional Team. I was also named Senior of the Year by my teammates. It wasn’t always easy. Imagine trying to dance with two rods and 28 screws in your spine! I had to work a lot harder than my teammates to achieve the same level of ability, and there have been plenty of frustrations and disappointments along the way.
But, I’ve been determined to never give up, and to be an example to others that limitations don’t have to get in the way of your dreams.
Ashlyn's surgery was performed by Dr. Richard Hostin at Baylor Southwest Scoliosis Institute Plano, Texas