SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!
Posted in: Scoliosis, and Surgery.

Scoliosis spinal fusion instrumentation surgery

Started by zemindar on 01/03/2013 1:52am

I feel this surgery should only be considered as a last resort; i.e., if you are truly hunched over and disabled from Scoliosis. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications while in hospital. If you have good pain management, you will be OK during your hospital stay.

I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way - those that hang in the balance, so to speak.

Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it has been like for me (and also for others I know) to age with scoliosis spinal fusion surgery, please stop reading.

After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.

I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year. Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me. And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days pain medications are better, so now this doesn't have to be a problem.

But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

I am the voice of some scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.

Best Responses
There are no responses to this discussion.
Do you find this discussion helpful?