To Persevere – Reflex Sympathetic Dystrophy Syndrome

My story circle has an upcoming prompt that encourages stories about courage.  I have seen many instances of courage in my life, and will probably write about many of them, but this one came first to my mind and I dedicate these true words to my lovely older daughter.Triathlete

To Persevere

The call came in one sunny afternoon and my husband answered, expecting a telephone solicitor since the caller ID gave him no clue.

Our older daughter, a bright and energetic senior in high school, was off on the semi-annual backpacking trip to Colorado with her church youth group. She had been a leader for the group for a few years and was hoping that the kids on the trail this time would have the life changing and wonderful experience she had when she was a freshman.

“Dad? I dislocated my knee,” she said plaintively, “And it really hurts!”

“How did you do that?” my husband asked, “Are you okay?

“Kind of,” she replied and told him a terrible tale of tether ball mayhem.

“Tether ball?” he asked quizzically, “Really?”

She told him that she was playing tether ball with some of the kids while they waited for the go-ahead to start their hiking adventure and she evidently stepped in some kind of a hole. She went one way and her leg went the other.

“My knee got dislocated, there’s no emergency room anywhere nearby and they are afraid it will get worse. So they want to talk with you because they are going to have to reduce it,” she said.

“What’s reducing mean?”

“It means they are going to relocate my knee cap to the front of my leg,” she replied.

I was catching my husband’s side of the conversation mostly and when he repeated this, I asked, “The front of her leg? For God’s sake, where is it now?”

“On the side, Mom,” she responded and my stomach started a slow churn.

“Do they have any pain meds out there,” I asked.

“Just Tylenol and Advil,” she replied, “But the worst thing of all is that I won’t be able to go on the hike with my kids!” Her voice ended in a little wail and I could hear the pain and frustration in her voice along with the tears she was holding back. I just wanted to grab her and hug her, but she was in another state and that was that. All I could do was offer encouragement and support with her dad.

She endured the rest of the week there and a day long bus trip back to Austin and we made an appointment with a specialist in sports medicine for the following week.

Dr. Cunningham was warm, friendly and had a daughter right around our daughter’s age who also played lacrosse at the high school level and was a bit of a jock. They hit it off right away.

Unfortunately he had bad news for her after the diagnostic tests. Her knee cap had done plenty of damage sliding back and forth over the joint and had also been damaged in the process. He was going to try to fix the problems arthroscopically, but he was realistic in his estimation that they might have to open up the knee area, leaving about a four-inch scar across it.

Our daughter digested this news pragmatically, but then just burst into tears when she heard she was going to be on crutches and in a boot cast for a good portion of the rest of her senior year. Visions of prom, pep rallies, lacrosse tournaments and so many other cool things that would have to be missed or compromised took over her vision of the future and it was really hard to handle.

But there was not another option, and so she steeled herself for the surgery and rehabilitation to come.

She came out of surgery about a week later to find that they had indeed needed to open the knee to get to all of the damage, had re-shaped her knee cap and actually relocated the junction of one of her bones that had been congenitally out of position and so she now had a pin in her knee. The good news was that it was fixed and would probably be stronger than before after healing and rehab. She even got a DVD of the procedure! But her challenge was just beginning.

Her knee healed quickly, but the pain persisted and got worse. Her leg would get very hot to the touch for no reason and then just as quickly go cold. It actually changed colors with the blood flow, so naturally we took her back to Dr. Cunningham.

She had a guardian angel, no doubt, because he recognized the symptoms as being a fairly rare condition called Reflex Sympathetic Dystrophy Syndrome (RSDS) and referred us to a pain specialist named Dr. Haro for treatment.

We had never heard of such a thing, but I got on the Internet and what I found both amazed and frightened me. RSDS Association has a web site that was the most informative and after I read up on the syndrome, I was not surprised when Dr. Haro prescribed a series of epidural blocks to reset the nerve or nerves that were causing her inordinate level of pain. Seriously, judging by her level of  healing she was fixed, but that was not what her nerves were telling her and Dr. Cunningham had caught this so early that Dr. Haro thought Devin had a good chance at full recovery.

Our daughter was one of the lucky ones, because left untreated, millions of people suffer from pain that is greater than their original injury would usually cause and it stays with them even after they are healed. When we met with Dr. Haro and she had her first epidural, he said that usually by the time he is consulted on RSDS, the patient has suffered with it for two years or more.

Meanwhile, our plucky seventeen year old  was dealing with crutches, limited to a slow elevator at school to get to her multi-floored classes with only five-minute passing periods, and with the ongoing pain that didn’t respond to any pain relievers.

She wore a boot cast to her senior prom, and jumped up and down when finally after a series of five epidurals, the pain started to lessen.

It took her years thereafter to get totally back to normal, but she has gone on to be a triathlete, a runner like her dad, an ultimate Frisbee competitor and most recently she finished her first half marathon. We gave her a glamour photo session for her twenty-first birthday and laughed when she made them put back in the knee scar they had brushed out in the proofs.

Our daughter’s courage has been the kind that perseveres and the brush she had with RSDS has strengthened her resolve to do the same in her personal, professional and spiritual life.  She will enter Vanderbilt Law School in the fall and we know she will do well, for she has met challenges, dug deep and found her route to success.

We watch her vault over every obstacle with great pride and although she threatens from time to time to tattoo the word “persevere” somewhere on her body, we know that it is already tattooed in the most important place of all.

It is tattooed boldly in her courageous heart.


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