Sunday, June 10, 2012

Understanding Scoliosis

*as posted to another blog Sunday, March 25, 2012.



When I was 12 years old I had a physical to go to summer camp, and it was discovered that I have scoliosis. Scoliosis is a curvature of the spine, and my type is called Idiopathic, meaning it onset during puberty. There is still very little conclusive evidence regarding the causes of scoliosis but some medical communities believe that it is a hormonal mis-communication to the brain during puberty which causes the spine to go off in it's own direction.

The next four years of my life were spent waiting for me to stop growing, so I could then undergo an 8 hour long surgical procedure which involved straightening my spine vertebra by vertebrae, and attaching two metal rods to keep the spine straight and in place. Bone chip was taken from my hip to fuse the rods into place, and the following 9 month period was spent recovering: all I could do was sit, stand, walk, and lay down.

Afterwards I had a really good 12 years! I had every day aches and pains but I was used to it, as I had been in pain since about the age of 11. Before I was diagnosed, my back would ache, and my shoulder would burn. Sitting in the car for more than 20 minutes would cause sharp needles of hot pain in my shoulder blade, and some of my household chores like vacuuming and ironing caused me pain. But my mother figured I was just whining to get out of housework, and I would usually be told to stop whining. When I was diagnosed she cried for days, I remember the guilt she felt, and how badly I felt for her. It wasn't her fault, she had no way to  know.

In 1999 I became pregnant with my beautiful daughter Renée, and during my pregnancy I put on a staggering 80 pounds. I have never been able to take that weight off, and when I began to experience intense lower back pain in my last trimester of pregnancy I naturally assumed it was due to the excess weight. So I bore it as best I could, and tried to make the best of things. As the years progressed my lower back pain intensified, but I didn't talk about it much as I was sure it was weight related, and it was very embarrassing for me. To this day I am ashamed of my weight, and tend to think the world judges me harshly for it.

Three and a half years ago I took a job with the March of Dimes, as a Personal Support Worker Assistant. My first day of training I had to help an elderly man to stand up from his chair, and as I held him by his arms and he bore his weight down on me, I felt something twinge within my back. As the day progressed it ached more and more. The next day I could barely move, and had to end up leaving work mid morning due to extreme pain.

My doctor ordered a battery of tests and x-rays, and told me she was going to get me into see the top surgeon in Ontario regarding Scoliosis revision surgeries. The wait time to get into see him was upwards of a year, so in the meantime I began to take pain killers to cope with the pain.

The one year wait time came and went, and I still had no firm appointment. And finally, three years almost to the day of my injury at the March of Dimes, I was given an appointment; I saw Dr. Lewis at Toronto General Hospital last October, 2011. Since that appointment I have had more MRI's, X-rays, and am currently awaiting a CT Scan. I have learned a lot about my spinal condition, and to be perfectly honest I never imagined just how vast my problems were.

Not only do I have the original Scoliosis, which as a teenager was a traditional "S" curve, with a 56 degree curve at the top, and now is a 16 degree curve after my initial fusion, but I also have Spinal Stenosis, which apparently is quite usual for women with Scoliosis. Stenosis is a narrowing of the Spinal Canal. This can cause degradation of the spine in a myriad of ways. Add that to Degenerative Disc Disease in all of my discs, as well as OsteoarthritisOsteoporosis (yes, I have Osteoporosis at age 40) and Facet Joint Disease in my lower 4 vertebrae in my Lumbar (lower back).

So basically, my back is @#!%&*!

There is so little information out there for people who aren't familiar with these conditions, and I want to help dispel some of the myths, and bring these diseases into the light, because quite frankly it can be very alienating to have these conditions - people simply don't understand. I am in some lovely support groups online, and the other women I know who are going through similar issues as me are just wonderful and loving and bring so much sunshine into my life. And yet they all too well understand the feeling of isolation I face - they face it too.

Okay so to begin, let me just say that Scoliosis has nothing to do with the liver. Oh I'm telling you... it has happened a few times believe it or not, where some ignoramus has actually said "oh you have scoliosis?You should quit drinking!" Scoliosis is NOT Cirrhosis - that is a completely unrelated liver condition.

Scoliosis is not caused by wearing a heavy backpack, or by poor posture. There is nothing our mothers could have done to prevent our Scoliosis, and to be honest anyone with Scoliosis will attest to having to use poor posture just to be comfortable.

You try sitting up straight when your spine looks like this:



Yes, the Hunchback of Notre Dame had Scoliosis. And no, it isn't something we find amusing... so the next time you meet someone with Scoliosis please have a heart, and keep your Bell Tower jokes to yourself.

The average lifespan of someone with a curvature greater than 40 degrees is shortened by approximately 14 years. This is because the spine pushes every vital organ out of it's natural space in the body, and the undue pressure on lungs, kidneys, glands and other soft tissue is just too much. Even when the spine is re-aligned and fused, it can never be straightened completely. 

People with Scoliosis live with chronic pain - every day. Imagine having your spine curved, putting your hips out of alignment, jutting a shoulder blade out further than the other, putting pressure on  your neck, pelvis, and everything in between. Even our knees and ankles suffer, as we tend to stand aslant, with one hip higher than the other. Most of the people I've met who have Scoliosis are tough as nails, survivors. No one who doesn't live with this type of chronic pain can truly understand, so please for the love of God - be compassionate. Most of us keep it to ourselves, unless we're having an exceptionally bad day. And the bad days can be brutal. I wouldn't wish it on my worst enemy to be honest. 

Scoliosis is believed to be predominant in women, however I have met plenty of men with curved spines. And it is also believed to skip a generation, however there is nothing solid to prove this. My own birth mother was diagnosed a few years after my original fusion surgery, though her spine is not as curved as mine - she lives with the same chronic pain.

Scoliosis can and does cause related spinal illness and disease. I talked about my Spinal Stenosis early into this post, and the fact that many Scoliosis patients also have Stenosis. A narrowing of the Spinal Column itself causes numbness due to nerve damage, aches, pain and can also cause weakness in the arms and legs. The Spinal Column is the Universal Joint that holds your whole body together - imagine it was compromised and weakened... it doesn't feel great!

Many people who had Harrington Rods (first and second generation) implanted before the mid to late 1980's have developed a condition known as Flatback Syndrome. Flatback is a crippling disease, and it is caused by the original rod fusion created by Dr. Harrington decades ago. The original rods did not take the natural sway of the lower back into account, and caused a tremendous strain on the lumbar; people with Flatback Syndrome end up falling prey to gravity over the years, eventually being completely incapable of standing up straight. When you see someone walking with a cane or walker, and they are at a 30 or 40 degree angle, bent from the hips, heads being pulled to the ground, they may likely have Flatback Syndrome. There are revision surgeries to help correct this issue, however there is so much deterioration caused by Flatback, that even revision surgeries may need to be done multiple times to lessen pain and degradation. My heart goes out to everyone I know with Flatback Syndrome, it is such a painful and crippling offshoot of Scoliosis. Some of the toughest people I know have Flatback, and they are a daily testament to the human spirit and power of the will. My blessings always go out to anyone dealing with Flatback! The photo below is of a woman named Jessica, the first picture shows her Flatback posture - the second is a photo of her after Revision surgery.




Facets Joint Disease is another bi-product of Scoliosis fusions. Here is a picture of a spine and a vertebrae - you can see the Facet Joints clearly marked:




What happens is the rods that fuse the spine in place leave the portions of the spine which isn't fused susceptible to rubbing against each other. With Flatback Syndrome the lower sway is reduced by the rod fusion and the patient becomes stooped or "pitched" forwards because they no longer have an arch in their lumbar. With Facets Disease the Facet joint which is on either side of each vertebrae can begin to wear against the facets above and below it, until they are literally grinding bone against bone. I know a lady who has Facets disease in her neck, I personally have it in my lumbar - the four lowest vertebrae on my spine. I have worn enough bone away that there is not much there but dust now, and each step I take is agonizing as the bone continues to rub against bone. I am supposed to walk with a walker, but I tend to avoid this and use my cane on extremely bad days.

If you see me walking upright, chances are I'm having a good day, or I've just taken my pain medication. The most comfort I can derive is by walking stooped forwards somewhat, to allow my facet joints the freedom of rubbing against each other.

The myriad other issues that can crop up from Scoliosis, like degenerative discs, and Osteoporosis, and arthritis, and the nerve damage incurred from having our backs cut open from our neck to our bottom... it all causes a great deal of chronic pain. Add that to the cosmetic embarrassment many of us can feel at simply standing, walking, and looking different, and maybe you can understand why I personally want to help educate people about Scoliosis.

Too many young people are being diagnosed with Scoliosis and no one is really talking about it. It isn't something to sweep under the carpet though, and really people need to be informed. Between 2-3% of the North American population has Scoliosis. You may know someone who has it. You may know someone who had surgery in the 60's or 70's, who had to live in a body cast for a year, and lay on a Stryker table, being flipped upside down and right side up every few hours. Perhaps you know someone who had to wear a back brace or neck brace during puberty.

My point is simply this: Knowledge is power. And Scoliosis isn't a deformity - it is a disease.

As I mentioned earlier, I'm currently waiting for a CT Scan to be scheduled, as I have pinched a nerve in my neck due to what my surgeon believes is a slipped or herniated disc. Once he has clearer imaging on my neck he is going to schedule my first (and hopefully only!) Revision surgery. Revision surgery is a fancy way to say "Fix the mistakes from the first surgery".

He will be removing some if not all of the titanium rods and clamps, and then fusing me from my neck down to my lowest Lumbar joint. This will help to hopefully resolve the Osteoporosis, and the Facets disease wear and tear. It will also reduce my flexibility to 0% - I will have virtually no range of motion other than sitting, standing, and bending at the waist.

It is a frightening and uncertain future to look to, and I guarantee you that anyone who had Scoliosis corrective surgery before 1990 will likely have to face Revision surgery if they haven't already.

So please be informed, and talk to your family. Have your children screened please - early detection can help reduce the need for surgery, as they have made amazing advancements in bracing, and physio-therapy! The simplest way to check for Scoliosis is to have your child stand straight, and then bend from the waist to touch their toes. As they stand in this posture, simply run your fingers down their spine. No spine is perfectly straight, but you'll know if it is curved beyond the norm - and if it is, calmly make an appointment with your family doctor for a proper examination.

Your spine is the thing which holds you all together, and it is vital and should be treated with respect and love. Spinal health is so important, and to anyone suffering any type of spinal disease, be it Scoliosis related or not, I wish you the utmost love and support. Be proactive, seek medical opinions, get tested, and be gentle with yourself. I used to try to do too much, and end up in pain for days afterwards. But I have come to accept in the past few months that over-doing anything will only hurt me in the long run. So I am slowly beginning to let go, and not stress so much over housework, chores, and my weight.

I hope this blog entry helps at least one person better understand Scoliosis, the related issues surrounding it, and the myths which cause so many of us to feel ashamed, when really we should not at all.

If you're a woman with scoliosis, or with a loved one with the disease, please feel welcome to join the Facebook Support group I host called Twisted Sisters

Thank you ~ Be Blessed.

2 comments :

  1. Depending on the severity of the condition, there are a few treatment options to choose from. As long as it is detected early enough, scoliosis exercise can help improve the condition of the spine and alleviate pain.

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  2. A physical defect in the spine of an individual is known as scoliosis. It stinks. I have had it since i have was about ten years old. Anyway, the defect leads to a person's spine to curve laterally. Therefore, the spine feels like it types a C or S-shape instead of a straight line, particularly when a person is examined from behind. can inversion table help scoliosis

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