Mary F .
MY MIRACLE
The first time that I was aware that I had scoliosis was when I was 13 years old. My mother discovered it and took me to our family doctor, who then sent me to a specialist. I can remember him saying “and she’s only thirteen”. I don’t really think my scoliosis was that bad at first so to the best of my knowledge we did nothing. We probably decided to just keep an eye on it.
Through the years it continued to get a little worse and occasionally I would go to a doctor to see if he could help me. I even tried a chiropractor who thought he might help me somewhat. Around 2000 my back had gotten significantly worse, so I called a medical facility in our area and told them I wanted to make an appointment with their doctor who specialized in scoliosis. They gave me the name of a doctor who was at a different hospital that was not associated with the medical facility. At the time my spine was about 70 degrees off center. The doctor said that I was lucky that I could walk as well as I could and hold and job and that since I had no pain he would do nothing but watch it yearly. He said you could hardly notice it unless I was turned to my right side. Each year the degrees would change a little and I think when I saw him last my spine was off approximately 80 degrees. He told me if he ever did surgery he could only correct it 10%. I think he did more children’s scoliosis treatment than adults.
I knew my scoliosis had gotten a lot worse by the way my clothes fit and I tried everything to disguise it wearing large scarves, big sweaters, button down sweaters across my shoulders in the summer time and I even pinned some padding to the back of my bra on the good side to try and even my back out. I was so ashamed of the way I looked and by that time I was 4’11 ½” tall.
About that time a person who I worked with, had a granddaughter that was 14 years old with scoliosis and had doctored for years with different doctors and even wore a body brace for six months while her scoliosis continued to get worse. So her mother got on the Internet and looked up doctors that specialized in scoliosis and came up with the name of Dr. Lawrence Lenke of Washington University, St. Louis who works out of Barnes-Jewish Hospital in St. Louis. They made an appointment with him and they were very impressed and scheduled surgery for her with Dr. Lenke and everything went great. When the surgery was over and she was home for about a week she was in some pain and her mother and she wondered if they had done the right thing. I asked grandpa if he would like me to talk to her. I went over to her house, unbuttoned my blouse and showed her what she would have eventually looked like it she hadn’t had the surgery. Anyway it did some good because her grandpa said from that day on she and her mother knew she had made the right decision and she didn’t complain any longer.
I asked them if Dr. Lenke did surgery on adults and they thought he probably did, so I got his telephone number, talked to his nurse and she told me to send my latest x-rays to them and then they would decide if they could help me. After waiting a short while I got a call saying Dr. Lenke wanted to see me, so sometime in October 2005 (I think) we made the trip to St. Louis. They did a new set of x-rays and my scoliosis curve was now approximately 100 degrees and my kyphosis (forward bend) was just as severe about 100 degrees. My lung function was only 60% of normal due to the curvature inhibiting my lungs. I told him I was ashamed of how I looked and he indicated it would probably get worse. So he agreed to do the surgery. I asked him what the risks were and he said 50% everything would go fine, 40% you might get an infection or something, and 10% of stroke, heart attack, embolism, paralysis or death. He also said that he could probably correct my back 50%.
I told our son, who is a general surgeon, those stats and he said the 10% risk was much too high, so I talked to the nurse about it and she said that the paralysis and death were like about ½%. I got the feeling that he has never had anything happen like that just the way she talked. I found out from her that he is the best in the country if not the world in what he does.
So we had to sign some papers and I thought I would have surgery in a month or so but he was booked up until March 3, 2006, which was around 5 months from my original appointment. I had to go back to the hospital once or twice for some testing and also had testing done in a local hospital closer to home, that they sent to Dr. Lenke. In February they wanted me to give 4-6 units of blood. My husband was not compatible with my blood type so I gave two units, my boss gave one and a friend gave one at a local blood bank. They sent it to Barnes Hospital to be used for my operation. Unfortunately during the operation I needed 5 units of blood so we were one short, which had to come from the blood bank.
Dr. Lenke told me to ride my exercise bike 3 or 4 days a week but I rode it 7 days a week to prepare for my upcoming surgery.
On March 2, 2006 I went over to the hospital and had some more testing done. On March 3, 2006 I was admitted to Barnes Jewish Hospital and taken to surgery to have a halo put on. I had two screws in my forehead, one behind each ear, and two at the bottom of my hairline in back. This halo traction was to try and stretch out my spine pre-op loosening things up to give me better correction with the surgery. Each day they added 5 lbs. to the traction until it was up to 25 lbs. I wore it all the time – walked with it, sat with it and slept with it. (Actually they took it back to 10 lbs. when I slept ). (My husband said at the end of the week he could actually notice a slight difference in my back). I really didn’t mind having it on because I knew that it was just going to help more when I had my surgery.
On March 10, 2006 was my big day for surgery and I can honestly say the night before I was not very nervous. I had so many people praying for me on the prayer lines that I just put it in the Lord’s hands. I also think the Lord guides Dr. Lenke’s hands and I had great confidence in him.
They told my husband that the surgery would take approximately 12 hours and they would keep him updated on how things were going.
At home before surgery they had me practicing to move my feet on command and some other exercises which they would ask me to do during the surgery which I did but don’t remember doing.
The surgery involved a posterior (from the back) spinal fusion. I also had osteotomies in my mid-back cutting out the back pieces of several vertebrae (spine bones) to help correct the kyphosis). I had the 10th thoracic vertebra completely removed to aid in the correction of my spinal deformity. I have metal rods (two) the length of my back and screws (28) and a cage holding my spine in the correct position while the bone is fusing. I had a combination of my own bone, genetically engineered bone protein (BMP) and bank (cadaver) bones used for the fusion. The fusion usually becomes solid or healed by about 1 year post-op.
For several months before surgery, every night when my husband and I would go to bed we would say our prayers and include that Dr. Lenke be able to correct my spine 70%, even though he said he could only correct it 50%.
The surgery lasted 10 hours and when Dr. Lenke came out to see my husband he was one happy surgeon. He said everything went well. He corrected it at least 75% (my husband thinks closer to 80%) and that I would be 4-5 inches taller. I went from 4’11 ½” to 5’3 ¼” tall.
I spent two days in Intensive Care after the surgery. I guess I was in a lot of pain and was on pain medication. On Tuesday morning March 14th I told Dr. Lenke I was hungry and so he decided to take away the strong pain medication. Surprisingly, I required little pain medication after that.
The next week I spent at the hospital was devoted to rehab learning to walk with a walker, learning to go up steps again and just making sure everything was all right. I was dismissed on March 19th and we stayed at a hotel in St. Louis right across the street from the hospital just to make sure we could handle this on our own and then the next day we started home. In order for me to get in and out of the SUV my husband had bought a stepping stool for me to stand on to get in so I didn’t stretch wrong and injure my back.
When we finally got home we had a bed in the living room so that I didn’t have to use the steps right away. I recuperated for about three or four weeks and then went back to work half-days. (I worked on a computer and answered the phone).
Fortunately after my surgery I had no serious complications. I did have some pain for a while after I got home, which was mostly in my hip and I did take some pain medication for that.
I cannot say enough about Dr. Lenke and his skills. I really consider what happened that day in surgery a miracle. Also, he has a very capable staff. If anyone has a back problem and they mention it to me I always tell them Dr. Lenke is the best. I truly believe that he is the best surgeon in the world for scoliosis.
