How Scoliosis Changed My Life

As a person with untreated idiopathic scoliosis, for years I had chronic severe pain in my lower back. The scoliosis, a lateral spinal curvature, had caused me to have a poor body image ever since I first noticed it as a teenager. I wore loose clothing and avoided putting on a bathing suit. A shoulder blade stuck out, my ribcage was a "hump" on one side. I felt deformed.

I knew my back was "ugly" but was uneducated about scoliosis and did not know the reason. We did not have regular visits to the doctor at the age when my curve was developing and nobody noticed it. I did not know who to tell and I never talked about it, even with my friends. I didn't go to my parents for fear of criticism of my posture. I can remember a fellow employee at my first office job when I was nineteen putting her hand on one side of my back, where the muscles were overdeveloped, actually grimacing and saying, "ew!"

These days, scoliosis is widely recognized in the United States as a debilitating and disabling condition if left untreated, and school screenings for it are commonly done between the ages of ten and twelve. My own son's scoliosis was caught this way before even I had noticed it. When physical therapy failed to be enough, my son was referred for surgery at the age of eighteen. There are many other treatments for scoliosis including bracing, casting, chiropractic or physical therapy; so surgery is normally a "last resort."

Many youngsters with scoliosis begin having back pain at an early age. I was lucky in that sense as I did not suffer any actual pain until I reached my late thirties toward the end of the eighties. It hit me out of the blue one day when I was taking a short day hike while on vacation. All of a sudden there was a crunching pain in my lower back and the muscles began spasming. It was excruciating. After I returned home from that trip, I made an appointment and went to my doctor, who had x-rays and an MRI done, prescribed some high dosage ibuprofen and sent me to an orthopedic specialist.

The specialist looked at my x-rays and MRI report. He explained the scoliosis and that I had developed degenerative disc disease and overdeveloped musculature as a result of the curve. He prescribed muscle relaxants and exercises. So began my journey down the long road of pain, pills, physical therapy and trial and error as an adult with untreated scoliosis.

My own odyssey through untreated scoliosis was entirely frustrating. Year after year I would end up in the exam rooms of different doctors, desperate for some real answer. Surgeons told me I had none. I tried a wedge in one shoe to even out the muscle distribution. That resulted in spasms so extreme I ended up in bed for a week with hot and cold packs and my muscle relaxants. At that time no one wanted to prescribe any effective pain killers and I was in constant debilitating pain. I went to physical therapy, but after a certain number of visits my insurance quit covering it. I continued to go to work but there were days when I could not cope.

At first it was all right because I had office jobs which were mainly sedentary; however I worked for the government and we really did not have good chairs. I experimented with a lot of "wedges" for my chair but nothing was supportive enough at the time. I was stuck in an awful cycle of pain. I was also avoiding social situations as my pain was isolating. You feel that people who are not in pain will not want to hear your complaints and it becomes increasingly hard to "grin and bear it."

I left my job with the government for various reasons and began work at a health insurance company call center. I loved this job at first mainly because I was just so grateful to have a good chair! It was fully adjustable with great spine support and an adjustable lumbar area. I was in heaven! If I could, I may have continued to work there forever if only I could have that miraculous chair!

About a year and a half into my new job with the fabulous chair, I started suddenly having bladder problems so severe I could not take my calls. I was constantly having the urge to urinate. I went to my general practitioner who tested me for cystitis. I felt that surely would be the problem, because I had bladder infections in the past; however I wasn't having the associated pain. After the culture came back negative, I was referred for a sonogram and took the results to a urologist. The urologist could find nothing. He gave me some medication for possible overactive bladder. He changed the prescription twice but nothing worked.

I went to my gynecologist (after a long wait) because my sonogram had showed a couple of fibroids which may or may not have caused enough pressure on my bladder. My gynecologist told me the fibroids could not be causing this, they were too small. By this time all I felt capable of doing was crying. Although my supervisor at work was understanding, I was totally dysfunctional. Not only was my back pain increasing but I couldn't do my job well, something which I had always taken pride in. I went on temporary state disability so I could get my problem addressed and try to come back "whole". A friend recommended I start over with a different doctor.

My new general practitioner was a godsend. He listened to me, looked at all of my test results and sent me out of the area to professionals in Sacramento who had perhaps seen more than the physicians in my local area. I still did not receive a concrete answer, but a neurologist informed me from a new MRI report that chances were good that my scoliosis had begun to affect my organic function. My largest curve had reached 75% and this was severe. I visited an orthopedic surgeon in Sacramento to discuss options.

My new orthopedic surgeon informed me of the high risk involved in adult scoliosis surgery. I had already done a lot of research on the Internet. I made the difficult decision to go ahead and have this done. My life, I felt, was not going to get worse and it was worth the risk. My parents had a neighbor with untreated scoliosis who was suffering miserably with organ dysfunction -- congestive heart failure, lung problems, loss of bladder control. I saw this and I felt I couldn't live like I had been any longer and did not want to become like my parents' neighbor.

I understood going in that my surgery may not clear up the problem I was having with my bladder. I did not have a definitive diagnosis on it. I took the chance regardless.

I underwent surgery in the late summer of 2004. It required almost fourteen hours of surgery on the first day. Two days later I had five more hours of surgery. I had two rods placed, fusion from the thoracic (chest) area down and a lumbar kyphotic curve also had to be worked on as it needed to be able to support all the hardware that was put in.

Of course a stay in a hospital is miserable. They don't leave you alone! I was there for eight days. I did have to have two transfusions, not surprising since I had so many hours of surgery. I had to be drained of bloody red cells, I was totally bloated from the fluid retention. Apparently my breathing was shallow. I didn't know it, I was on morphine which of course does not help the breathing any, although I did get respiratory therapy. It seemed like I was being x-rayed in uncomfortable positions at least four times every day I was there. I'm sure I wasn't, but when you're hurting whenever someone touches you, that's the way it seems!

My surgeon showed me the x-ray of my spine following surgery. It was like day and night! The curve was at 22%. I was not going to get any worse. The picture of my spine was so straight, I almost cried at the thought that if only this problem had been caught early on, maybe I would never have had to go through all this.

When I first came home from the hospital, my bladder was still irritated from the catheter so I was "going" more than ever. However, after a few days I noticed the problem was gone. I still will never know if the surgery "cured" my bladder urges. I only know the situation was righted in some way. And I know now I will not lose the organ function that my parents' neighbor lost. Not due to scoliosis, anyway.

I do my daily exercise to strength the cartilage and muscles in my back. I am still in severe pain. The pain from my bad lumber discs is gone, as the pressure was lifted up from them. However I have a lot of pain simply from having all the ligaments and muscles pulled around. I hope that someday when the cartilage and muscle is built up the situation will get better. I trade off pain medications and sometimes go off them entirely. Over the counter pain medications don't seem to work.

Of course I have very little flexibility due to the spinal fusion from the thoracic area down. I have learned not to bend and my thigh muscles are getting stronger so I can squat. I used to have to throw myself to my knees to pick up something from the floor. It's amazing how clumsy you are and how you drop everything in sight when you are unable to just bend over and pick it up! I have come a long way since the surgery, so no matter how frustrating things get, I try to remember that. When I first came home from the hospital, I was unable to even sit upright for more than a few minutes due to the work in my lumbar spine.

I am still not active socially. I have been unable to return to work. When I get an invitation, I am always worrying about how long I will be there, will there be a chair I can sit in, will I have to stand in a line? There is still the isolation of pain. I have joined some discussion and support groups on the Internet and am always open to feedback from those of you out there who are suffering similar problems.

My life, I feel, is much different than it would have been without this creature called scoliosis. If you are interested and would like to read more about this debilitating condition, there are some excellent sites I would like to refer you to:

http://www.nlm.nih.gov/medlineplus/ency/article/001241.htm

http://www.scoliosislife.net

/http://www.scoliosis.org/