This is a discussion of congenital scoliosis, NOT idiopathic scoliosis. I was born with hemi-vertebra and vertebra which failed to segment on one side. This problem occurred in the developing fetus. That's what congenital scoliosis is. It was nothing my mother did to cause it. It was nothing I did to cause it. It just happened.
The picture below is of two t-spine x-rays taken three years apart. I held the x-rays up to a window and then snapped a picture.
On the left is an x-ray of 1997 when I was age 51. On the right is an x-ray of 1994 when I was age 48. The major curve is about 65-degrees in 1994 and about 85-degrees in 1997. The other compensating curves are not pictured.
This is the way I have appeared for my entire life. There were no treatments for congenital scoliosis when I was a child. My scoliosis was first detected by a casual observer when I was 5 years old. It was already as bad as it appears in these x-rays.
The congenital malformations are most obvious at the T4-T8 levels. The vertebra in this area are not distinctly visible on the x-ray. Notice the ribs just to the right of the spine. It appears as if these were joined as one rib which eventually split into individual ribs further out from the right side of the spine. Without these abnormalities, there is no scoliosis at all.
Congenital scoliosis is about five percent of all scoliosis cases. Congenital scoliosis is really bad developmental luck. No one is to blame. I can't stress this enough. I have read e-mail from parents who thought they were to blame for their child's scoliosis. No one is to blame for this bad developmental luck. Could have been much worse luck with more to overcome. Could have been blind, could have been deaf, could have been any number of worse things in addition to scoliosis.
My only birth defect was the scoliosis. I grew up, graduated from college, got married, have three children, have an excellent career in the computer industry ... and ... I've achieved what I've wanted to achieve in life with or without the scoliosis. The scoliosis hasn't defined me. I wouldn't have lead my life any differently without the scoliosis. I don't do anything special or different because of the scoliosis with one exception. I can't run or do stair steppers because of reduced lung function due both to scoliosis and to asthma. But, I swim laps which is an excellent exercise. I'm able to move my arms and legs in ways that one just cannot do on dry land. I swim a minimum of 30 minutes each day at the local YMCA. Since the surgery, I have had to do almost all backstroke in order to get an uninterrupted 30 minutes. For some reason, I just can't breathe right in freestyle and breaststroke is very, very fatiguing. I believe that this is due to the rigid spine in place the flexible spine. Hey, all backstroke isn't that bad. Swimming is the only exercise where you do it lying down, and the water is there to keep the body cool when you start to sweat. I don't feel like playing volleyball or doing tumbling since the surgery. Maybe next summer (ha-ha). I'd rather be swimming anyway.
Between 1994 and 1997, as illustrated in these x-rays, the curvature of the vertebra around the rigid congenital malformations began to progress rapidly. I believe that the progression actually began slowly around 1989-91 in my early 40's. In peri-menopause, I believe that the ligaments relax and become more elastic just as the ligaments do at the end of gestation right before delivery. In peri-menopause I have felt symptoms like I would associate with a pregnancy, only this is like a pregnancy of indefinite gestation without a fetus. With relaxed ligaments, there is more opportunity for the curvature to progress on the already curved spine.
I sought treatment for the progressing scoliosis in 1993. Pain, feelings of pins and needles and numbness was so great by that time that I had to get pain management treatment. I had never sought treatment for pain although it has been chronic since my teenage years. I was always told just to live with the pain and that everybody had a few aches and pains. It took courage to seek treatment for the progressing scoliosis because I knew from the past that my case was hopeless. Much to my horror, the primary care physician knew nothing about scoliosis. He wouldn't even give me a referral to an orthopedic. I was astounded at the total lack of knowledge by a primary care physician. He referred me to a neurologist who diagnosed my situation as fibromyalgia and the neurologist said that there was no reason for me to consult an orthopedic. I still to this day cannot believe that I was denied a referral to an orthopedic with a spine that looked line mine.
Watch out for yourself and be your own advocate and be aware that some of these doctors are real idiots. Watch out particularly for the fibromyalgia diagnosis, especially when you know that your scoliosis is progressing and you are losing height. I no longer use that particular primary care physician I saw in 1993, nor do I see that neurologist. They are real quacks. Although I was not able to get a referral to the orthopedic, at least the idiot PCP did take that one single x-ray of the thoracic spine in 1994. (The x-ray on the right side above.) That x-ray became the basis for measuring my scoliosis because all the x-rays which had been taken earlier in my life had been destroyed over time. (Moral to this story is that you must personally save your own x-rays to make sure you have your history. X-rays get destroyed by clinics after some short period of time.)
I connected with an excellent spine reconstruction specialist in 1994. Took my x-ray to him, without a PCP referral, using the out-of-network benefits from my insurance. (Moral to this story is that you must make sure you aren't in an HMO if you have a serious problem like scoliosis. You will need to be able to find the best and most experienced specialist for treating your scoliosis. If you have an HMO, you are stuck with whatever doc the HMO has. I went out-of-network to a different city for my surgery.)
In 1996, I found a different primary care physician. He recognized that he didn't have background in scoliosis. I'm thankful to have found him also. He ordered the regular scoli x-rays I asked for. I took all x-rays again to the wonderful spine reconstruction specialist, this time on a referral from my new primary care physician rather than out-of-network with the insurance. With the last x-rays in 1997, the progression had become rapid and significant and well documented. Surgery was recommended. I was glad because I felt the progression in many ways.
The x-ray below on the left is from 1997, three months before surgery. It was flipped to a front view when I photographed it. It shows a 55 degree curve in the upper thoracic, an 85 degree curve in the mid-thoracic around the congenital deformity, and a 40 degree curve at the low thoracic area. Very lightly you can see the marks drawn by the orthopedic as he planned the instrumentation.
The x-ray below on the right is at 3 months following the surgery for spinal fusion. The surgery was A/P fusion of C6-L2.
It looks like the correction was tremendous, and it was. But, the position of the rods is not the exact position of the spine. The curves do swing way left and right of the instrumentation, just like before, but the curves are improved to a great degree. I had lost one inch in height from 1996 to 1997 and the surgery gave me back two inches in height. My rib cage and shoulders were leveled so that I no longer have the impingement of the rib on the hip. Nothing changed in the position of the hips. One side is still higher than the other and the pelvic bone is slightly rotated. Without the surgery, I'm sure I would be either dead, dying or have severe spinal cord damage by now, given the rapidly progressing curve.
The surgery was a big, big deal, that's for sure ... but I'm so thankful to have had the surgery. I'm so thankful that when my scoliosis began to progress during peri-menopause, there were surgical solutions for me that had not existed in the past. I'm very grateful to the surgeon. And to all in my family who have helped me so much in this last year. I am very thankful that I was NOT in an HMO with limited options. It has been a long year.
None of my three children have this specific deformity. We did recently learn that one of the children does have a single kidney rather than two, and the kidney is located in the pelvis where there should have been other organs which are absent. The syndrome describing the problem is Mayer-Rokitansky-Kuster-Hauser syndrome. It is another birth defect problem which occurred in the developing fetus. Again, no one is to blame. No explanation for why it occurred. MRKH is not life-threatening, but it is one of life's developmental tragedies.
Feel free to e-mail me with questions at jseidler2@wi.rr.com. There is no link to this page from my home page, so add this page to your bookmarks if you want to come back here again.
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