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Scoliosis Pain Symptoms

Written by 

Scoliosis Patients Perspective and Experience

By Maggie Victoria

I am not a doctor, I am a scoliosis surgery victim, and I want to share and support you if you are in the same place as I once was. I have read many on-line articles that generally imply that we, scoliosis surgery patients, after about 20 years, begin to experience minor and insignificant mild back problems; oh, really, I beg to differ and the following is my perspective and experience and the journey of so many others who have no voice, who have no power and who have been silenced and gently swept under the rug.

This experience of course is in contrast to those people who have not been surgically altered, diagnosed in their youth, and they seem to be living a quality of life pretty close to those who do not have scoliosis. Just know, that you are not alone in your pain, that there are so many others out there that are just like you. Understand that we as a community of post scoliosis surgery complication patients feel as you do and you are doing the right thing by reaching out because we have all been there, right where you are currently.

The most difficult part of this journey, through scoliosis pain syndrome post-op is an emotional battle of the spirit vs. the body that is failing us, in the very lonely world of post scoliosis surgical failure. The loss of control, we feel, the loss of our quality of life and the general betrayal of the scoliosis community in not allowing our voices to be heard, and the constant criticism we are subjected to, with unfounded suspicion and hostility. As you journey through your surgical pain symptoms post-op note that you are facing an uphill battle, you will fight and learn to become your own best advocate, you will know more about scoliosis and the dangers of scoliosis surgery and the scoliosis pain syndrome than you ever wanted to know. It will be a test of the human spirit but know this, we are coming together as a community of scoliosis pain syndrome survivors, and we are supportive understanding and caring. We will be heard, we will have accountability and we will survive. We will advocate that the wrongs of the past will not repeat themselves, and we will seek a better way for this new generation of scoliosis children; for the GOOD of all. Please reach out to us, on facebook, (Scoliosis – The Untold Truth) through this forum and you will be pleasantly surprised, that you are not alone, that your journey can be supported, by our community, and you will find peace in that.

The following are conditions, and details that I hope you will find helpful, to find the support you so desperately need. My motivation for this post, is simple, that no one will ever suffer, seeking the truth, being ignored by the medical community, feeling depressed, and alone. I have been there, and I will not allow our community of scoliosis surgical patients with these complications to go largely ignored and unsupported. You deserve better than that, we all deserve better than that.

Before Scoliosis Surgery

Before my scoliosis surgery, although a long time ago, I don’t recall having any pain what so ever.

I found this to be rather puzzling, so I asked my daughter about her current scoliosis, and her pain levels, surprisingly, her response to me, was that she was actually not having any pain, and rarely had pain. I pressed her several times, and she got a little irritated because she felt I was doubting her; go figure, So, as far as pain goes prior to surgery, very little to none. She has also indicated her strong desire to be treated at CLEAR scoliosis treatment and would prefer to go through life twisted than undergo even these “more refined, uncomplicated scoliosis surgeries”

Post Scoliosis Surgery

These are my experiences, for your own complications please DEMAND diagnostics and DEMAND whatever you need to get answers. Understand, they will try to pacify you, have courage, have strength, as this is your precious life and your precious health and you must be a guardian and warrior to protect it. When my complications set it in was prescribed NSAIDs and then sent home. I failed to thrive and was told “you only have a little bit of arthritis”. Be prepared, but never allow yourself to succumb to this sort of attitude and question your very sanity! Many patients do, and they become afraid, and drift off to their worlds with no place to turn to for support, getting worse, emotionally and degenerating even further.

I support hundreds of women daily with complications post scoliosis surgery that range from months within the initial surgeries to even 20 plus years. We have come to terms our condition and we call it scoliosis surgery failure, or Scoliosis Pain Syndrome. The surgical methods range from Harrington rod placements, C&D instrumentation, Pedicle Screw instrumentation, and the newest latest and greatest surgical instrumentation methods.

The following are some of the Long Term Issues that are Possible that we define as scoliosis pain syndrome or scoliosis surgery failure and complications:

Sometime after scoliosis surgery you might notice that your shoulders and your hips become even more uneven or clothing may not fit the way it once did. The pain this causes as the rotation advances is absolutely incredible. My physiotherapist does his best to treat this and keep me comfortable but there is little else he can do.

Disk degeneration – This is another very painful issue that can cause severe back pain.in your lower back. As the degeneration continues, it can cause the disks between these vertebrae to rupture, because they become so weak. . I have read so much online that says that disk degeneration does not cause severe pain in the scoliosis surgical patient. How do they know that? Did they ask us? I beg to differ! It is absolutely debilitating.

Those who were fitted with Harrington rods face even more severe degeneration because of the sheer weight of the rods, and salvage surgery is almost inevitable for these patients. These folks are aged well into the 50s and 60s by the time salvage surgery is required and recovery is nothing short of hell with these aged bodies lumbar flatback (some General MDs are not even aware of it) and by the time the patient is diagnosed with it they are often severely deformed and surgery to fix it is even more complex and the patient has suffered emotional trauma from the many years that have elapsed to even get a diagnosis. Most often, but certainly not always, flatback is caused by eliminating the lumbar lordosis (that is where your spine curves inward and is natural). It is claimed in general that it is caused from the Harrington instrumentation methods however it is still happening in other surgical approaches. Severe, neck, and back pain will result and eventually the person has such a severe forward bend that they can only look to the ground.

Post Scoliosis surgical scoliosis pain syndrome can also cause spondylosis, This is an arthritis in the spine that can develop. The joints can become inflamed, and the cartilage that cushions the disks thin and then bone spurs or (osteophytes) develop. This condition can lead to more surgery when the disk degenerates or the curve begins to progress and this does result in the vertebrae pressing on the nerves. Let me tell you, from first-hand experience, the pain is very severe and the only way to address this is yet more surgery.

My entire cervical spine and lumbar spine has now developed osteophytes. Scoliosis surgery can put you at greater risk for spondylosiss because inflammation will likely occur in the vertebrae above and below the fusions sites because the extra load those vertebrae must carry.

Your Rods can become loose and good luck getting that diagnosed. I had a blood pool study that confirmed it, and that diagnosis is still being denied. The rods can corrode, and the metal can “leach” into the blood stream, causing all sorts of issues, including, fatigue and autoimmune responses. I battle constant fatigue and exhaustion daily.

You can also have fusion failure where the bone fails to graft together. This can compromise the instrumentation and cause huge amounts of pain and again can only be addressed through more surgery.

You can also have spinal stenosis, facet joint arthropathy, fusion degeneration, kyphosis begins to set in. All of these conditions, from scoliosis pain syndrome are nothing short of life altering. I have all of these. While my spine remains stable at 30 degree thoracic and 30 degree lumbar, I am shifting rotationally which is causing me to have kyphosis, and the rib hump continues to get worse. I am concerned that my right shoulder will become displaced and dislocated. The pain is incredible.

Currently, 19 years post my last surgery, (note I am a health 105 pounds and was once a fitness buff. I stand about 5 feet 6 inches tall and am not over weight)

Post 3 surgeries, a dextroconvex scoliosis 30 degrees centered at T8, pedicle hooks at T4, A left fixation device T2 To L1, a fixation rod on the right T6 to T9, Clercage wire between the two rods at T8, 30 degree curve in the L-spine.

My surgical Pain Sydrome Implications:

L5-S1 spondylolisthesis secondary to bilateral L5 spondylolysis

Blood pool study – loosening of the metal rods and less likely arthritis

Lumbar Spine -Facet joint arthropathy lumbar spine, stenosis, and osteophyte formation at all levels.flattening of the of lumbar lordosis, DDD

C-spine -multilevel disc space narrowing degenerative osteophyes. Facet arthropathy

Thoracic spine – currently showing degeneration, DDD

Kyhposis is now present, rotation of the ribs in progress, and the rib hump progressing, shoulder and scapula beginning to displace, forward in my sagittal positioning. Currently, I have absolutely no stability.

Final Words

What Scoliosis surgery does, is trade a deformity for dysfunction for a life time of chronic pain. If you are reading this article and are without pain, and had scoliosis surgery, count your blessings, and know that at some point in your life, it will be your reality. We need a better way. We need the scoliosis community, to open their minds, stop the censorship, allow us to have a voice, and make non-surgical scoliosis treatment specialists, who treat without surgery, become the mainstream for treatment of this condition! CLEAR scoliosis treatment is definitely, on to something and in order to refine treatment, to improve treatment, we must, in the least make people aware that it is even available as a treatment option!

I WILL NOT ALLOW THIS EXPERIENCE TO DESTROY ME, BUT I WILL BE HEARD, AND I WILL ADVOCATE FOR THE NON SURGICAL TREATMENT OF THIS DISEASE WITH PASSION, TRUTH AND DEDICATION! NO ONE SHOULD EVER HAVE TO SUFFER FROM SCOLIOSIS PAIN SYDROME BECAUSE THERE ARE NO MORE EXCUSES! WE KNOW AND ARE VERY AWARE OF THE LONG TERM IMPLICATIONS OF THESE SURGERIES ARE! NO MORE EXCUSES!

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