My middle daughter was diagnosed with scoliosis three years ago. For two years we simply monitored it every six months because the doctor believed she was nearing the end of her skeletal growth.
Then she shot up five inches (overnight?) and the minor curve grew alarming. A Boston brace was ordered. I cringed in sympathetic embarrassment when the man making a cast of her body stroked the plaster-of-Paris strips tight against her nearly naked adolescent curves. Two weeks later, at the final fitting, the same man walked in holding her brand new torture device. 23 hours a day, seven days a week. He chalked and adjusted, chalked and adjusted, and finally satisfied, pronounced it done. She could get dressed and we could leave.
But odd mother and daughter that we are, we laughed hysterically behind the curtain, instead. When she tried to dress, nothing fit and we hadn't thought to bring clothes a size larger. For five minutes, the absurdity of that awful brace poking out from unzippable pants and a suddenly too-tight shirt superceded the pain of having to start high school being "different" and wretchedly encumbered and so we laughed--laughed until the tears streamed down our faces. I sometimes wonder what the receptionist in the waiting room thought. Do other families laugh at times like this? Or are we the only ones with such absurd coping mechanisms?
But we used it as an excuse to buy new clothes and borrowed a few of her older sister's things, and for six long, hot, summer months she endured that brace, taking it off only to shower and for swim practice and meets (and a few hours in December for a formal dance). She was more faithful to that brace than I can imagine any other teenager being. She cried herself to sleep some nights, but she didn't take it off. She dealt with it. She bounced tennis balls off her stomach to entertain her friends. She urged, "go ahead, punch me in the abs." She made humorous sounds by scrunching her stomach under the brace and creating a vacuum of air. She called it her eight-hundred dollar push-up bra. And if a brace was ever going to work, it was going to work this time because my brave young daughter had been so faithful even though she didn't want to be.
Except it didn't. And her spinal curve progressed six more degrees in six months (from 41 to 48) while wearing that brace that was supposed to correct it. Her orthopedist grimly informed us that she would need spinal fusion surgery to stop it. The x-rays were truly alarming; my stomach dropped when he pulled them up onto the screen. It was clear that something needed to be done. Since the surgery he was suggesting is major and would take her out of school for up to a month, I asked, "Can we wait until summer?" With a grave look, the doctor shook his head and said, "I wouldn't." That look conveyed volumes and so we began preparing for the worst, gathering information, speaking to others who had gone through this drastic surgical correction, and generally girding ourselves for the inevitable.
Part of the process of gathering information involved seeking a second opinion. I liked and trusted her first doctor, but you just do that for something this big. You just do. I had seen those alarming x-rays and I didn't believe that the diagnosis would be different in terms of recommending surgery, but I thought the methods might vary and that any and all information was valuable. So we researched the Shriner's Children's Hospitals and found that they do some of the most cutting edge work in children's orthopedics, with scoliosis at the top of the list. And, they only take you on as a patient if they believe that surgery will help you--plus there is never any charge for procedures that Shriner's doctors do to help children. It's a charitable institution. It's what they do.
Our appointment yesterday was with the Erie, Pennsylvania Shriner's Hospital chief-of-staff (Doctor #2) and he did all new x-rays and measurements. He also asked her a bunch of questions about her scoliosis (not us, although we were in the room--she's 14, so this was a good move on his part). He asked her if she had pain, numbness, bladder problems, etc. Her answers were all nos. Then he asked her why she had come for a second opinion. She faltered and turned to me but I encouraged her to answer. She said, "Because surgery is kind of a big deal and we wanted to be sure."
Then, God bless the doctor, he asked, "How about the appearance? Does that bother you?" (A funny aside: I thought he had asked her if her "parents" bothered her, and I was all ready for her to say, "Duh!") She seemed confused by the question, though; she looked at him for a moment and double-checked. "The appearance?" she asked.
(Let me just say here that this young woman is tall and gorgeous and very self-assured, and frankly couldn't care less if one of her shoulder blades sticks out more than the other, or if her back rises up higher on one side than on the other when she bends forward. From the front you can't even tell--her body has fully "compensated.")
The doctor nodded and said, "Yes, the appearance. Does it bother you?"
She gave him a withering look and said, "No." (Her teenaged disdain for the vanity of the question made me so proud of her at that moment.)
Then the intern brought the x-ray in and put it on the screen and I thought there had been some mistake. I looked at my daughter to see if she was as confused as I was, but she was staring at the x-ray. I would swear that the curve on the screen was much milder than the one we had seen in the other doctor's office. And doctor #2 proceeded to tell her that he didn't think she needed surgery. He said she's almost at the end of her growth (thank goodness, she already looks me in the eye) and she is functioning fine. He said he would only recommend surgery if she was very self-conscious about the appearance, and even if we eventually decided to do surgery for that reason, there was no rush. She's only 14 and if we waited a year it wouldn't make any difference. He said get another x-ray in six months, but he doubts it will have changed. Oh, and he measured her thoracic curve as 46, not 48, and the lumbar (compensating) curve was almost gone.
So...(choirs of angels sing)...no surgery! We are still going to go back to doctor #1 with the results and the new films, but I doubt we'll do anything before the six month recheck no matter what he says....I keep trying to figure out how this could have happened...Her braces (on her teeth) were clearly visible on this recent x-ray, and neither she nor I remember seeing them on the older x-ray. Could we have been looking at someone else's x-rays in December when we got that bad news...? Or had wearing the brace actually made it worse and now that she's not wearing it it has gotten better? Did all the prayers work a miracle cure? It's really a puzzle, but a happy, happy puzzle. I can't tell you the weight that has been lifted! Doctor #2 basically told her, "Go have a normal life, honey. No restrictions."
And when she asked him what she should do about the brace--keep wearing it or what?--he said, "You're too old for that brace. Take it out behind the house and shoot it."
Since she's recently been taking a gun safety course and learning to shoot skeet, I think we just might do that.
4 comments:
EXCELLENT, Mary! Wonderful, joyous news. Couldn't be happier for your family. I like Dr. Second Opinion very much.
Me, too! Thank you both. :)
Oh, Mary, what a wonderful post! So happy for you and your glorious girl!!
So happy for you and your girl!
For anyone out there in need of helpful Scoliosis info: http://www.cedars-sinai.edu/5701.html =)
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