A sideward curvature of the spine in any portion except the neck is termed scoliosis.
Hi my name is Sue, and I'm the mother of two teenage girls, Patti 16 years, and Tracy 14 years old. We live in Illinois, and are a close family. I am writing about how scoliosis has effected us.
In July 1996, I took Patti in for her sports physical. During the physical, Patti asked why her shoulders were uneven. The nurse said that we should get some x-rays done just to check it out.
We are on a HMO plan, so we had to wait for a referral. So, in August we went for the x-rays. Looking back, Patti did complain of back pain occasionally, I thought it was growing pains. Any ways, a week later our doctors assistant called with the results of the x-rays. He told us not to worry. Patti has a 3 to 5 degree curve in her back. I asked if we could have a back doctor see her? So we waited until another referral went through.
At the end of September we went to another doctor. He took a look at the x-rays and told us Patti, would need to see a Scoliosis specialist. This was the first time I was told that Patti had Idiopathic scoliosis. This doctor told us he thought she had a 16 degree curve. So I called and waited for another referral.
Idiopathic Scoliosis can be caused by birth defects, a severe accident, a neuromuscular disorder like muscular dystrophy and polio, in 80 percent of all cases it occurs for no apparent reason at all. Idiopathic, means a disorder that has no cause. It can begin in any three stages of life.
Birth to 3 years/ Infantile Idiopathic scoliosis/ This is rare and usually occurs in males
4 to 10 years/ Juvenile Idiopathic Scoliosis/ This you will find in males and females and can progress fairly rapidly
10 to 13 years/ Adolescent Idiopathic Scoliosis/ This strikes females in 7 to 10 cases. It occurs during the growth spurt, when the skeletal frame is developing.
It was December before we could get a referral to Dr. Schafer at Children's Memorial Hospital. Between September, and December I looked up information on scoliosis. Our friends Shirley, and Lenny sent information off the internet to us. They found more than I did. Anyway, From what I had read, a curve under 20 degrees would not be much of a problem. Possibly just keep an eye on it.
So, it was two weeks until Christmas, and we were at Dr. Schafer's office. First thing they did, was to take new x-rays. Jim, patti, and I were waiting in the examination room. Dr. Schafer, and his nurse, and an intern all entered the room. Patti was given an examination, and then we looked at her x-rays. The doctor had us sit down and told us that Patti has a 22 degree curve in her upper back and 60 degree curve called kyphosis. (This is when your spine curves abnormally toward the front or back, the result in the upper back). He went on to say if the kyphosis gets to 65 degrees that surgery would be needed. Then he left the room, and said he would be back with some one we would need to meet.
This left us some time to talk. Patti asked if the doctor was kidding? I never thought her back was this bad. Jim was the practical one, and said that we must listen to what the doctor was saying.
Dr.Schafer returned with Dreher Jouett a certified Orthotist. The doctor said that we needed to get Patti into a Milwaukee brace, and in the next 5 weeks. He introduced us to Dreher, and had him tell us about the brace he would make for Patti.
The Milwaukee brace consists of a pelvic girdle made of plastic, a neck ring, and various bars straps,and pressure pads that work together to try to prevent the spinal curvature from progressing further. So inside the brace it is snug fitting with three metal bars, one in front, and two in back. The neck ring will keep your head and neck centered. All this encourages you to stand straight. Hopefully all this will prevent the spinal curve from progressing. In some cases the kyphosis will get better.
As you can probably tell this was a lot for us to take in. The ride home seemed long. I was trying to remember how to say kyphosis, and what it was. Patti kept saying no way am I going to wear that! Jim, just wanted to get out of the Chicago rush hour.
While waiting for the referrals, and Christmas, we did a lot of thinking about what wearing this brace would mean to Patti. By the way, it was funny how fast the referrals came through this time. Any way, Jim and I could not make up our minds whether we could make Patti wear this brace. We were having second thoughts, when Jim's Aunt called. She is a nurse, and has assisted in scoliosis surgeries. She convinced us the brace was the way to go.
Patti's first appointment, was to make the mold for her brace. They put her in a heavy net stocking and made a plaster mold of her hips and back. The appointment took about an hour, and patti's only complaint was that she wanted to get home and take a shower.
The fitting of the brace took place in January after the holidays. We were all a little nervous Patti's Grandmother came along so we could all go to lunch afterward. This appointment took 3 hours. But the brace fit great, when we were done. Patti and I laughed through most of the appointment it helped. With the brace on Patti had trouble standing. We were told the muscles had shortened in the front of her legs to compensate her kyphosis. It took a lot of work for me to learn to put the brace on and off Patti. We took off the brace and let her have a break until we were home. On the way home Patti told us how she wanted to burn or destroy her brace.
Patti and I went into her room when we returned home. We laughed so hard, (stress) she could not stand, sit, or breath in it. Patti decided since she was going to have to sleep in this thing that she better try laying down. She got stuck laying down, I tried to get her up, but you don't bend in that. So we just rolled her off the bed. I told Patti I was going to get us a drink, we needed it. I went down stairs and cried, I never told Patti I wanted to keep her spirits up. She is really a strong person to go through all of this. I went and got her dad, and we just practiced sitting. That was in its self hard work for her.
Patti has done really well ajusting to her brace. It only took her 3 days to wear it all 23 hours. So, we invited some friends over so they could learn to help her get in and out of it. They all had fun, and were very supportive. They even came down with the brace on Patti's stuffed ape.
January 14th,1997, Patti is wearing her brace to school for the first time. She is worried. How will the kids treat her. Having her friends over really helped, and they said they would help her. Patti said the day went ok. People kept asking what was wrong with her neck. Most everyone was really nice to her. In one of her classes the teacher made them sit on the floor and Patti could only sit on her knees. Another girl saw Patti's troubles and said to Patti, I will sit on my knees too. There are really some wonderful people out there.
In February we got the internet. This is where we found the SCOLIOSIS SUPPORT PAGE and Patti has met other friends who have offered their support. What a help you all have been!
By March, Patti now puts on and takes off her brace herself. She was determined to be self reliant. Every thing is back to normal. She is looking forward to her appointment in April.
The appointment went well, starting in June, Patti will only have to wear her brace 19 hours a day! That is swimming time for Patti. She is also going to band camp this summer, and glad that she can take it off for free time.
August is approaching band camp was lots of fun. Patti is still wearing her brace 19 hours a day. She is experiencing minor problems. She has been letting me know about her inability to bend in her neck and back. Patti has been experiencing painful areas along her spine. My husband and I don't understand why she is not in some kind of physical therapy? We are checking on this now. Her next doctor appointment is not until November.
September has passed, Patti is feeling good. Our HMO insurance allowed Patti one day of physical therapy. She learned a few exercises.
Patti went to the Home coming dance last Saturday. She also participated in the class olympics. Her Freshmen team won in the event she had participated in. Things have really come around for Patti. She is so much happier now that the back pain is gone.
All though the Milwaukee brace is not fun to wear, it has helped Patti. She stands much straighter, and is feeling better. Patti still is stiff, and not very flexible. We are going to bring this up to her Doctor at her January appointment.
January 9th, 1998 was Patti's last appointment with Dr. Schaffer. Her new X rays show her kyphosis is now at 39 degrees. This is much improved from the 60 degrees she had started with. Her doctor did tell her she was playing with fire, because she was taking her brace off for 8 hours instead of the 4 he was letting her. This was part our fault we had agreed to let her go to school without the brace on. Yes going to high school without her brace did help her mental health.
Patti will strictly be wearing her brace for 8 hours now. She will put her brace on right after school. If all goes well, at her next visit in May, Patti will get a 12 hours off. I know she wants this very much.
Best of all, She has not had any back pain. Her only complaint is that she can't bend very well. Dr. Says that her flexibility will come back.
Today is April, 28th, being the Mom, I worry about the rib hump in her upper back. But Patti doesn't complain of any back pain, or lay on the floor in pain any more.
Patti is feeling good, and doing great. We would like to thank the person who e-mailed us and sujested that Patti try running. Patti decided to go out for track this spring. She made the Junior Varsity Team, and is doing great! She is running distance competeing in the 800 meter relay as the anchor, the 800 meter, and last meet she took a 1st the first time she ran the mile. She feels so much better about herself too!
We are in October now. Patti is wearing a new brace only at night. She is feeling well, and doing great. She won outstanding camper, at Blue Lake this summer. Patti took up running Cross Country this summer too. Infact she just made Varsity for the Cross Country team. Our next appointment is Wintwer 1999. I will try to keep you posted.
I hope by writing this we can help others with scoliosis, or just give you knowledge about Idiopathic Scoliosis. Also we want to thank all the support that everyone has given us!!!
Thank you for all of the support, and good wishes!!! We would like to send a special Thank you to Stacy for starting the Scoliosis Club. You will never know how much you have helped us.
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Stop by Patti's thoughts page, last April she wrote a poem about how she felt about wearing her brace.
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