The bent truth about scoliosis - not my typical post
This post is going to be a bit different than my others for better or worse, but it's something that I feel should be shared. It's a dive into my health, my thoughts about scoliosis surgery (also known as spinal fusion surgery), and some facts I think should be reviewed by anyone faced with this surgery. Let me be clear to anyone reading this-these are solely my opinions based on my experience and not all experiences obviously will not be similar. However, I also want to be clear that I am writing this because I believe every single person has a right to know what can be a potential outcome to making such a big decision over your health. There are positive outcomes, but there are negative outcomes to any situation and sometimes the negatives are overlooked because of the price tag involved. If you live in the United States, I'm sure you know all too well that our healthcare is expensive beyond belief whether it's medication or surgery. So in my opinion, I feel if doctors have the right to charge the amount of money they do on these things that will put you into debt than you have the right to question what you are paying for. You have the right to question what you are told and you have the right to know to the best of their knowledge what can occur in the future. If they have the luxury of insuring their mistakes, shouldn't you have the most information you can? Know something isn't being pushed on you and to feel comfortable in your decision instead of scared? I think so. Lets begin shall we?
Scoliosis-My story
I wrote a post a while back about my scoliosis journey talking about how I was diagnosed, what procedure was done, and how I was afterwards. I also talked about facing it with a sense of enlightenment, but today I'm going to explain it a bit differently so you can see the truth about my day to day challenges. Here's a summary of that :
- I was diagnosed at age 12 with idiopathic scoliosis-I had zero idea what it was nor did I know how much more it would become apart of my life.
- I didn't even know I had it-this was not a noticeable disease and never caused me any pain.
- I had no clue this would involve surgery-when diagnosed I thought this may involve therapy, not surgery.
- Without knowing much about it, we were reassured surgery was right for me-With a curve of 51 degrees, I was told the curve in my spine would become life threatening without surgical intervention.
- My family and I were only told about immediate risks-this included paralysis, infection, and a slim to none chance of death only immediately following surgery. I was never warned of long term complications.
- Surgery was long and painful- Only a few months after being diagnosed, I was put under the knife for thirteen hours. It was scary, but I was told my spine was "better".
- Not only did the surgery cause severe mental and physical damage immediately following the surgery, it has given me a lifelong list of new conditions that will require more life threatening surgeries-because my spine was fused in the mid thoracic area with two Harrington rods, screws, hooks, and wires, the rest of my spine had to take the everyday wear and tear. This eventually after a few years led to a list of new conditions.
- Some of those conditions include, but are not limited to-bulging discs, herniations, spinal stenosis, spondylitis, spondylisthesis, straightening of cervical lordosis, and redevelopment of scoliosis where I am unfused. Ironic.
Potential outcomes of scoliosis fusion surgery/Statistics
- 2-3 percent of the U.S. population (7 million people) have scoliosis and usually occurs more in girls age 10-15 years old
- At 25-40 degrees bracing is recommended while at 50 + degrees surgical intervention is recommended though not life threatening
- 38,000+ patients undergo spinal fusion surgery every year at an average of $150,000-225,000 per surgery
- 3 inch screws and hooks are inserted at every level of the spine. Solid metal rods then go through these hooks into the spine for the length of the curve.
- 40% of patients were defined as severely disabled less than twenty years after scoliosis fusion surgery. More than 50% will experience long term complications from the surgery.
- Risks include paraplegia, quadriplegia, and peripheral nerve deficit
- Implant failure is sometimes seen. Spinal fusion implants can break, pierce the spinal canal, and cause compressed nerve roots. 21% require implant removal and more than 50% will have implant failure.
- 20-60% will have loss of motion and 5-10% will develop a deep infection up to 8 years later
- 26% were unhappy with the outcome. 41% felt no reduction in their pain level. 33% lost all correction from surgery within 1-10 years. 19% will require a brand new surgery.
- Other complications include- blindness, gastrointestinal bleeding, kidney failure, recurring meningitis, chronic intermittent vomiting (which I suffer from), emotional breakdown, severe blood loss, pancreatitis, and obstructive bowel dysfunction.
This is where my brutal honesty comes in
Do I think this surgery was worth living on pain killers for over ten years? No. Has my life changed for the better from this surgery? No. Do I think I was told every option available to me before being put under the knife? No. Has this surgery taken care of pain and issues that may lead to paralysis one day? No. Is it fun to be severely sick due to complications from this surgery? No. Was my best interest put ahead of a $225,000 surgery? No. Do I wish I could know what I do now about the disease and other treatments? Yes and I guess that's why I am posting this. I can't change the pain I feel everyday, I can't change my past, and I sure as hell can't redo my surgery, but if I can make someone research and ask questions before making an informed decision then damn right I'll try.
I'm not a doctor nor do I claim to be. I am merely a human being who on a daily basis is in severe pain and one day may be unable to walk. I am a living, breathing example of what happens when you put too much trust into someone's hands that calls themself an expert instead of trusting your gut. Am I saying this will happen to everyone who has scoliosis fusion surgery? Absolutely not. However I don't pretend it can't happen because well here I am waiting to have more surgery, but luckily off of pain medicine now. This isn't meant to scare you, but you open your eyes and inform you. So please, take this as my way of telling you to educate yourselves about whatever procedures you choose to put your body through. Don't be lazy. Do your homework. One decision can change the rest of your life.
(Yes I am a bionic woman)
