Scoliosis History with X-rays

     My Scoliosis was discovered at the age of sixteen as a secondary finding on a x-ray I had for another problem. Not knowing what scoliosis was all about we just forgot about it, even though the doctor thought we should see and orthopedic specialist. Several months later my Mother read an article in Readers Digest titled "Scoliosis the Silent Crippler." She became upset and decided to take me to an orthodpedic surgeon. My x-rays showed I had very small curves. It was decided nothing needed to be done but I would be watched till I was done growing. I was observed with periodic x-rays from the age of 16-18. At eighteen I was released from care with curves of 19 and 21 degrees.
     At the age of twenty-one I graduated nursing school and took a job as the charge nurse in an ICU unit. Within six months I was experiencing constant chest pain. I asked one of the doctors I was friends with to look at me. He decided the most likely cause for my pain was costochondritis (an inflamation of the cartilage that connects the ribs to the breast bone) from all the heavy lifting I was doing. It made sense since I was rolling and moving many heavy people every night and I only weighed 92 lb. The chest pain continued and was unrelieved by moderate pain medications or anti-inflammatories. He finally ordered a chest x-ray and it showed that my ribs had separated off my sternum (breast- bone). The doctor had no idea how this could have happened and was at a loss. When I told him I had a history of scoliosis he said it would be a good idea I have it checked.
      I made an appointment with a new a Scoliosis surgeon on staff as soon as possible. At my first visit he took films and told me I had a 42 and a 44 degree curve, borderline for surgery. Since I was too old to be braced, he would watch me for a year to see what happened. I immediately burst into tears. I told him what my curves had been at eighteen. He said I had to be wrong, I didn't know what I was talking about, or that the other doctor following me hadn't measured my curves correctly. I obtained my old films. He was shocked that someone skeletally mature could have changed so much in such a short period of time. On closer exam he found a significant amount of anterior rotation in my spine and he became greatly concerned. I was sent for pulmonary function tests to evaluate my lungs. The tests showed that my lung capacity was decreased by 35%. Since my thoracic curve was towards the left and very unusual I was also sent for a complete cardiac work up to see if there were any problems with my heart. Here they found the changes in the shape of my chest cavity was causing some minor compression of my aorta (the main artery that supplies blood to the body). My doctor told me at that time if I continued to progress at the rate I was I would be dead by my mid-thirties. Surgery was scheduled for May 1978.
      Unfortunately before the surgery I had a major car accident. I lost the kneecap on my right leg, had multiple rib fractures, a pneumothorax (collapsed lung), multiple skull fractures, and bleeding in my brain. My jaw was free floating and broken in 4 places. Both my cheekbones were broken. I had totally smashed my nose and several teeth missing. It took 147 stitches to fix all the cuts in my face and mouth. At the time they were very concerned about any pelvic fractures. If any were present they felt I would need to have the Harrington rod surgery immediately to ward off problems in the future and misalignment of my body. They didn't want my pelvis to heal in an abnormal position because of my twisted spine. No pelvic fractures were found and after 10 days in the hospital I demanded to be released because no one was doing a thing for me. I went back to work with my leg in a cast and my jaw wired a week later. Silly me I was a mess. I looked like I had been beaten with a baseball bat. My face was misshapen and I had black eyes. My patients thank goodness didn't notice that much since most were on respirators or too ill to care. It was hell but I couldn't take the time off and still have my surgery without losing my job. I had extensive work done on my face and mouth so things would be stable for me to have the spinal surgery. My doctor did warm me that this all would make things so much more complicated surgically and we would have to wait six months to fix my spine. As the weeks went by my curves were moving at an alarming rate, now 54 and 56 degrees, from all the spinal muscles being torn in the MVA. I got to the point where nerve damage started and he again looked at my pelvis. There was now evidence of healing fractures and we were in big trouble. I lost partial bowel and bladder control and surgery was scheduled long before he really wanted to do it.
      On June 15, 1978 I had my Harrington rod and a smaller retention rod inserted. My surgery lasted 6 hours and was from the back only. There were no complications and I was corrected to 20 and 22 degrees. The curves did settle over the years to around 25 degrees each. (The x-ray at right shows my curves a few years after the surgery.) I spent the first night in ICU and was transferred to a regular floor the next day. Three days post-op while using my blow bottles I opened the hole in my lung where it had been injured from the MVA and my lung collapsed. I was transferred back to ICU. I refused chest tubes to reinflate my lung but consented to 4 units of blood to increase my oxygen level. My hemoglobin was 7 (normal is 14) and my circulating oxygen level was in the 60's(normal is 97-100%). My doctor stayed with me the entire night, chest tubes in hand just in case. I did fine after that. I spent 15 days on a Stryker frame (an old style cot like bed that they sandwiched you into to flip you over so you never had to be rolled or turned) and then was placed in a full body cast. I was very lucky I did not have a plaster body cast as most did back then. I had what is known now as a TLSO brace. It was a full plastic jacket that went from just below my chin to the bottom of my hips. It was removable but I was not allowed to remove it for 6 months under any circumstances. At my three-month post-op visit my doctor was very upset when he found that the lower hook on my rod had dislodged from the fusion. Also my healing was not going according to schedule but with all the fractures I had had recently he was not too surprised. I now know that the hook breaking off the lower portion of my fusion meant that my fusion was broken, but I had no idea what that meant at the time. Because of my slow healing I spent an entire year in the brace. The last 3 months I was able to take it off to shower and sleep but that was all. I went back to work in ICU as a staff nurse six months post-op brace and all.
     At my six-month check-up my surgeon made me a deal. If I worked with his patients I would not have to pay his bill. So for the next 2 years I worked with all the scoli kids. I would see them in clinic, visited them pre-op and everyday post-op. I explained about the brace and the Stryker frame. Some days I would just sit with them so they weren't alone. I told them about the pain and how it was different to move. I explained to them they needed to be careful once they were out of their braces and how to protect their bodies. Back then we all were told once you had the surgery you were cured and other than sky diving and jumping there were no restrictions. The major thought at the time was you are fixed, go lead a normal life. I was able to be in the operating room on a number of occasions and viewed over 20 Harrington rod surgeries both from the front and back and from the back alone like mine. I was instrumental in setting up school screening programs all over my state and training school nurses to recognize scoliosis in kids as well as what to tell their families when it was found.
      The kids were wonderful and healed so much quicker than I did. I have to admit I was a bit jealous. At their six-month visits you could barely tell they had had anything done. I on the other hand was still in pain. My doctor would give me Valium to relieve the muscle spasms and send me on my way. My real pain started 18 months post-op, my whole life started to go down hill. My pain got worse and worse, my marriage broke up and I left the job and the doctor and all his patients. He had gotten to where he didn't believe me that I had pain. He told me if I did it was because of my MVA not my surgery. Yet he never told me my fusion was fractured when he knew it was. The pain increased slowly over the years. Five years post-op I was already dislocating my SI joints (the joints were your spine and pelvis join each other in the cheeks of your buttock.) Eight years post-op I had pain almost every day. Then I had my son and the pain stopped for awhile. I had no back pain during my pregnancy and was thrilled. By the time I had my daughter, 3 years later, things were sliding further down. I had constant back pain with her and terrible foot pain. I was told with my body not being able to move backward because of the fusion it put much greater strain on my feet. I had plantar fascitis, an inflammation of the connective tissues in my feet. Pretty tough for someone standing all day working in a busy Emergency Room.
      I suffered for years. I had chronic sciatica, numbness in my legs, lower back pain, right shoulder pain, buttock, and hip pain. Five years ago I noticed I could not stand erect. I was always leaning forward. I tried my best to hide it and did exercises to force my spine into it's normal upright position but it just got worse and worse. The further forward I leaned the more pain I had, the more pain I had, the more I leaned forward. Plus my SI joints now were out of place more often than they were in place. No one would believe me they were dislocating. Finally a good friend of mine who is an orthopod got sick of my questions and complaints and ordered a x-ray. He was shocked and wondered how I was able to walk let alone function running a busy Emergency Room. We started steroid injection into my SI joints and they helped a good deal for six months. I had less pain then I could ever remember. It was wonderful but short-lived. After the first six months I needed injections every 3-4 months for a year and then every 7-9 weeks just so I could walk at all. He finally told me I could not go on this way. I needed to see a specialist in revision surgery and have this taken care of before I was crippled and was no way to recover the losses. He thought there was one fracture in my old fusion where the hook was lose, and possibly another, my SI joints were beyond repair and I had what he believed was flatback syndrome. I had never heard of this but he said it was hitting the ortho literature big time.
      So began my quest to find a big time specialist. While waiting I hit the web and found other people in similar situations and started educating myself about the new treatments available for scoliosis and flatback. I did a good deal of research and through other doctor friends found out as much as possible. I had several opinions on what needed to be done and by whom. I discovered that Dr. John Kostuik at Johns Hopkins in Baltimore Maryland was one of the worlds leading authorities on scoliosis and revision surgeries. I made an appointment in Oct. 1997 but he was booked till Feb. 1998. I also found there were only three other BIGGIES in the field but many young doctors doing revision surgeries. I saw a doctor in NYC at the Hospital for Special Surgeries who told me there was nothing wrong with me. This man clearly knew nothing about adult scoliosis or flatback syndrome. He said all I needed was a pain management doctor. I was devastated by this but, had hopes when I saw Dr. Kostuik he and his staff would understand. In early February I saw Dr. K. and one of his fellows. While I was being interviewed by his fellow Dr. K. himself stuck his head in the door and asked if my exam was almost done and if I was the person who's x-rays where hanging up on the view box. The fellow said yes and Dr. K. asked him to hurry and finish because HE wanted to see me as soon as possible. They talked outside the room for a few minutes where my husband and I could hear the conversation. Dr. K. wanted to know how the exam was going and then said something about the fact that he didn't see too many people this bad. The fellow told him I was much better than my x-rays showed but, I kept apologizing for not being in much pain because of the steroid injections. The fellow told Dr. K. I was afraid no one would believe just how bad I was. Dr. K. said THESE x-rays speak for themselves, tell her to calm down, WE can help her and we DO believe her. When he came in he was smiling. It was like woo hoo lookie what I am going to get to fix. He repeated part of the exam and seemed pleased. He asked me some questions like what impact this all had on my life. This was a whole new approach. I told him I could no longer keep my house; vacuuming, bending to dust, mopping my floors, playing with my kids and having sex with my husband were things of the past. He thought about all of that for a moment, sadly shook his head and said get dressed and we will talk.
      Talk he did. He explained that there were two fractures of my old fusion, one at the level of the hook and one high in the thoracic spine. He said there was another place of poor healing where there was a big gap in the bone but it had not fractured yet. He remarked that there was significant arthritis below my fusion with the collapse of my disc spaces at L4-L5 and L5-S1 trapping nerves and causing the numbness in my legs. I had decreased sensation on the outside of my left leg from the knee down under my heel and back up the inside to the top of my ankle. I also had numbness in my right shin. On rectal exam I had no feeling in the rectal sphincter. Dr. Kostuik also observed I had very advanced flatback syndrome and explained what it was and why I had it. Flatback syndrome is a condition that is caused directly by long spinal fusions, especially those where Harrington rods were used. With the techniques used in the 60's to early 80's only the side to side curves were addressed. No one realized that while they were straightening out our abnormal curves they were also straightening out the normal curves of the spine at the shoulders and waist. This loss of the natural shape of the spine was found to create an environment that resulted in severe degeneration of the spine both above and below the fusion. Thus causing the flatback syndrome and all the pain I was having.
      He wanted a CT myelogram of my spine and an EMG to evaluate the nerve damage. He also requested an exploration of my SI joints under fluoroscopy to see just how much damage was there. After all the tests were reviewed he would decide exactly what I needed to have done. He did explained that he felt I needed anterior/posterior spinal surgery with repair of the fractures, chest tubes, an extension of my fusion to the sacrum, correction of my flatback and fusion of my SI joints. He said this would require a year to a year and a half recovery time including three months complete bed rest post-op. He said he would call me after the tests and give me more information. I asked about working post-op and he asked what I did for a living. I told him I was an ER nurse and didn't want to lose my profession. I loved what I did for a living and that it was my heart and soul. He said "We will see I am sure it has been some time since you were able to do that kind of work so who knows." I broke down into tears at that point and told him I was still working and had no intention of stopping till the day of surgery. He was stunned. He said "Little lady many people who come here to see me to fix their spines haven't worked in years and few of them have anywhere near the level of degeneration that you do." He then turned to my husband and said "She either has to be totally crazy or a very stupid woman." My husband laughed and said " Both."
      Home we went to think this all over. In March I went back for the tests and Dr. K. called me a few weeks later. We discussed my options and planned the surgery I needed. I decided to wait till the end of the summer to have the surgery because I didn't want to be laid up in bed with the kids home from school the whole time. We arranged for a live-in housekeeper, to care for me and everyone else while I was in bed. Dr. K.'s staff wanted me to go to a nursing home for the first three months after the surgery while I was to be confined in bed but after talking to several I decided I could manage better at home with help and put less stress on my family. I did have to quit working the pain and the drugs over took my life and I was afraid it might jeopardize my patients. My last day as an ER nurse was April 30, 1998.
      Aug. 25, 1998 I had my surgery. It was to be aprroximately 10 hour long and a front and back procedure with chest tubes with two ribs being removed for fusion material and several drains. Five hours into the procedure I started to bleed very badly. After 15 units of blood, and many liters of saline they terminated the procedure and crossed their fingers. My doctors were not sure if I was going to survive. I did wake up the night of surgery to everyone's surprise only to hear a recounting of my surgery and all of its complications. Needless to say I was a tad bit distressed but too drugged to care. I went back to sleep.
      What I believe was the next morning I had a visitor, not the usual kind but a very special one. I was just lying in bed with my eyes closed but awake. Slowly a very strange feeling over came my whole body. At first I felt a coldness start in my feet and travel upward. Death, I thought but instead of being frightened I was rather relaxed and at peace. Suddenly, I had no pain at all. All the machines and tubes seemed to disappear. I was enveloped in the most peaceful, utopic sensation I had ever experienced. God started talking to me. He gave me some information about what had happened and then explained I had a choice to make. He told me I could go with him now and be relieved of all this pain or I could fight to recover and he would stand by me. He said he came to me to show me the peace, contentment, and love that only he could provide so I wouldn't be afraid. I was more than willing to go with him. I had had enough. It is funny even though my eyes were closed he told me if I wanted to follow him to just close my eyes and he would lead the way. It was so wonderful, there was no way I wasn't going to go with him. As I was closing my eyes in my mind my daughter's face flashed before them. I started to scream "NO! NO! NO! I can not leave my children alone." God smiled at me. I can't say I saw a face but I could feel the smile. I didn't really see anything it was all a feeling. He left me then. With a jolt I returned to the real world and all of the tubes, machines, and pain. I spent 4 days in ICU on a respirator while my body regained it's strength.
      A week later I had the anterior portion of my surgery done. I was not frightened at all. I knew God was with me and would protect me. My decision had been made to fight my way through this recovery and HE would be with me all the way. My poor husband was a wreck through, I had not told him about my visitor. The second surgery went well and they finished what they needed to do. I did bleed a good deal, 6 more units of blood but everything else went well. I went home four days post-op by ambulance in time for my daughter's 9th birthday. I had five incisions; one covered the entire front of my body, from pubic hair to under my left breast, another on the front my left hip, and three drain holes. My back was cut from top to bottom with four more drain holes and two incisions across the cheeks of my buttock. I had hundreds of staples holding me together and tons of tape. I had very little post-op pain once home and took few medications. Three weeks post-op while rolling over in bed and using my neck to push me over, I dislocated two discs in my neck. The new position of my spine was putting a great deal of stress on my neck, which had been compensating for my flatback for many years. I spent 10 days in my local hospital on morphine in terrible pain. They tried two sets of steroid injections with over 40 shots each time to shrink the discs and kill the pain in all the trigger points I had developed. Nothing worked. I went home in as much pain as I'd come. A fusion of my neck was discussed but I had refused that option completely. The following night at home typing away on my laptop I yawned and everything went back into place. After 3 days the pain was gone and I learned to be very protective of my neck.
      The only pain I had while in bed was leg pain from lack of movement. My spine did not hurt at all. My legs felt like they were in a vise 24 hours a day and caused me many a sleepless night. At 11 weeks post-op my husband carried me to the car and I had x-rays. I mailed them to my doctor to see if things were healed enough for me to stand. At 11 weeks three days I took my first steps. My legs hurt like hell but my spine felt good. That was on a Monday. I was told not to do anything till Physical Therapy saw me on Friday. Yea right!!! Wednesday I went out to lunch with a friend, very slowly and very carefully and with lots of help. But I hadn't sat down since I had been told I could walk. I spent those first two days pacing all over my house and sleeping when I got tired or sore.
      The next 7 months my life were a roller coaster. Up one day, down the next. My days were full of pain, frustration, and grieving over the loss of my job. My doctor did decide that after all I had been through there was no way I would ever be strong enough to do any kind of nursing again. My surgery was just too extensive and my healing too slow. But at thirteen months post-op I was 100% fused and doing better than expected. I still had some pain, good days and bad but he had told me I would NEVER be pain free. I started working again around fourteen months post-op doing clinical research. It was my first step back into the working world. I was able to do a good deal of this work from home, resting when I had to. I was very excited and very happy for the first time in a very long time. My recovery had been a very long, painful, and emotional process but I was glad the worst was over. I have told many contemplating similar surgeries the body heals much faster than the mind does. Even though I have had some post-op problems I am still very happy with the results. One more surgery to remove the plates in my pelvis and all should be fine. Why you may ask? Dr. Kostuik had warned be right form the beginning that I was too thin and too active so it was unlikely my body would be able to tolerate the plates holding together my SI joints. Of course I prayed he would be wrong and my body would indeed adjust to them. It was not to be so. One plate started to dislodge at 10 months post-op while I was doing extensive PT. The corner of the plate and one screw lifted up and protruded an inch outward. This caused a great deal of pain and nerve irritation so the hardware removal would be necessary.

The Saga Continues

At 22 months post-op I again found myself heading to the OR. The plates and screws holding together my SI joints were coming out. At the last minute Dr. K. sat and had a long talk with me. The old hook at the top of where my Harrington rod had been was also causing me a great deal of pain. I insisted it be removed. He was not very happy about opening the top and the bottom of my spine but I told him if he wouldn't remove the old hook then there was no way I was going to have the surgery at all. Ok, he finally agreed but decided if he was going to have to open up so much of my spine why not remove all of the posterior hardware. Oh, no!!! The idea scared almost scared me to death. Rods had been holding my spine up for almost 22 years and I was terrified I would end up like a jelly fish. I knew very well I had bones in there too but fear doesn't have to be rational. My surgery went smoothly and I was discharged the next day. For the fisrt time as an adult my own spine had to support my body there were no more rods holding me up. I felt great for the first week and then things started to go sour. I developed severe pelvic and bilateral leg pain. Life got very hard again and no one could find what was causing this new pain. I had tons of x-rays, tomograms and an MRI. Everything seemed fine but I was back in a living hell. Finally I decided to look into pain management. Few people have as extensive surgery as I had and the pain management people had never seen anything like it. They wanted to know how I could function at all. Test upon test was done and it was found that when the plates had been removed from my pelvis both my sciatic and pudendal nerves had been damaged. Different medications were tried to control the nerve pain and physical therapy was started. After months of struggling things started to imporve again.

I am now three and a half years post op and still recovering. My life is more normal now than it has been in a very long time but, it will never really be normal again. I still have pain and I still need narcotics some days. I can not do many things I used to do or I have had to learn new ways to do them. I do work full time but have a job that allows me to set my own pace. Getting in and out of a car is a challenge. Putting on socks or a pair of pants is difficult. Stockings have become my enemy. I have learned new ways to do my housework but still receive a great deal of help from my family. I have learned new ways to pick up things I drop on the floor. I am not allowed to lift anything heavier than 15 lbs. You can't beleive how hard this is. My chest freezer has become a wasteland on the bottom because I can not reach into it to get things out. My husband does the laundry because I can not reach into the washer to get out those items stuck on the bottom. I take a pillow with me all of the time because my reshaped body does not fit well in most chairs, car seats, or the hateful airplane seat. My legs remain very weak and I find it hard to exercise them. I still have contractures of my legs and can not straighten out my knees flat. These are the areas I am presently working on improving. I can look back at six month intervals and see improvements even at this stage of my recovery. It has only been during the last six months that I have realized that my recovery will last years if not the rest of my life. Still I am very, very glad I had my revision surgery. I am so much better off now than I was before it. I do have a life again. I can go out with freinds. I can do things with my children. I do have times when I am pain free. My evenings are the worst but if I rest when I get home and don't do too much I awake pain free the next day for a few hours. My pain levels have dropped to an average of a 2-3 most days with a few at 5-6 compared to my pre-op levels of 8-9 twenty-four hours a day everyday. I sleep well most nights and though at times I worry about how I will feel as I age I remain greatful for whatever controlled pain years I have ahead of me. These surgeries are very hard on you physically and mentally. The physical improves maybe at a slower pace than one would wish but it does improve. The mental hardship and adjustments are much more difficult to overcome. It takes a great deal of work, hard work, to recover and regain a life. It is so very easy to roll over and play dead and let this disease rule your life. Only you can fight your way back to "normal". Only you can make the hard choices to survive!







last updated: 1/23/02