It’s been a year. A year since I left at ten o’clock at night to pick up my parents from the airport. It was a clear cool night. I wore a blue and green striped shirt. I dropped my suburban off at their house and took their sporty crossover. It had the things my mother needed to make simple car rides slightly less agonizing. A heating pad, extra pillows, room for her wheelchair in the back. When I’d spoken to her on the phone, she’d said she didn’t hurt, she was better. It still hadn’t sunk in.
They were returning from a trip to Italy. Business or pleasure? It was neither, really. It was a last resort. A trip planned on faint tendrils of hope. None of us dared hope too much, though, because the agony of this last resort failing would break us. It was too good to be true. We guarded our hearts.
It had all started years earlier. An unexpected hip injury left my mother bedridden. Test and appointments.
Until finally, a diagnosis.
A genetic deformity on the hip bone. A simple surgery would fix it. Except surgery is never simple. They found a surgeon with an incredible reputation, one who understood her genetic bone deformity and who understood her genetic connectivity disorder (Elhers-Danlos Syndrome). She was in as good of hands as possible. Surgery was scheduled for October. If all went well, she’d be back on her feet by Christmas! It was an exciting prospect. We waited. Hoped. Prayed.
You have to understand, the surgeon did the best he could. By most standards, the surgery was very successful. The bone deformity was gone, and she went off to recovery. Something was very wrong though. She woke in pain. I know, surgeries often have painful recoveries, but this was different. This was something else. We didn’t know it yet. We would soon learn.
She told me one of the first times I saw her after surgery. Her foot was hurting. It didn’t make sense, the surgery was on the hip.
Why would your foot be hurting?
They had cinched it out of the way during surgery, to open the hip. The explanation made sense. The surgeon had warned her it would likely be sore. I think my mother knew it was something else, but we didn’t really know what else it could be. We waited for it to heal, we knew the recovery wouldn’t be easy.
Then something strange began to happen. The hip and surgery site got better, but the foot….well, it just kept getting worse.
Swollen, glassy skin.
Burning pain that medicine won’t help.
That’s how it starts. Doctors should be trained to recognize the symptoms. It randomly manifests after injuries or surgeries. It’s rare, but unique and in need of immediate medical attention. Unfortunately, most doctors won’t recognize it. The first medical professional to suspect what it was, was her physical therapist. Even then, it was months before she got a diagnosis. And this time no surgery would fix her.
Complex Regional Pain Syndrome.
Perhaps you read about it in this list of most painful diseases: https://naidw.org/groups/viewdiscussion/1679-top-10-most-painful-diseases?groupid=25
Or this one:
Maybe this one:
……. You get my point.
Also known as Causalgia or RSD (Reflex Sympathetic Dystrophy), a Google search says “Complex Regional Pain is characterized by pain that is greater than expected from the injury that causes it.”
My mother described it differently:
Like her foot and leg were sitting in a campfire. Then, when she’d managed to block the pain enough to walk to the bathroom or shower, the pain would unexpectedly change. Shards of glass and cutting pain. A thousand knives cutting into her, the bone shattering. The nerves in her leg would register that her bone was actually broken and she would no longer be able to stand.
On a “good” day, her pain was around an 8 on the pain scale. You know, an eight. Like dry socket after a tooth is pulled. Except in her whole leg. All the time.
Like an unmedicated birth during the few hours of transition. She felt pain like that everyday. The few hours I endured to bring my children into the world were her everyday reality. There’d be no bundle of joy at the end, only more pain.
They began looking into treatment options. In the United States, CRPS treatment options are laughable. There is no cure. Only miniscule amounts of relief. Spinal taps or nerve blocks took weeks to schedule and would offer a few days’ respite. Experimental ketamine treatments that cost in the tens of thousands of dollars would give a few months of relief. If it worked. If you were lucky. Insurance wouldn’t even cover it because the side-effects were not fully tested yet. What CRPS patients would tell you is that no side-effect is worse that the unending agony that is their everyday. Yet they pay the atrocious price for the brief relief. Because CRPS is that bad.
All the times you read an article and think it must be exaggerating. CRPS is worse. No words do it justice. It is one of the most horrible things you or your loved one can ever experience. No wonder they call it the Suicide Disease.
My dad once wished that he could make doctors experience for just one minute what my mother went through every day. One minute. That perhaps then, they would try harder to help.
It sank in slowly. This was it. This would be my mother’s life now. Our life. My rambunctious, wild children learned to treat their grandmother like glass. To approach her from the side that hurt less. We all did. Anything to ease her burden.
I could go on and on about the suffering and hopelessness that was those two years. There was so much pain, so much sorrow, so much darkness. But this blog isn’t about the pain.
It’s about hope.
A phone number on Facebook. An international page promising CRPS relief. It called itself a cure. It seemed absurd. A scam.
There is no cure.
It had been drilled into us all.
And yet. One phone call. It didn’t hurt to make one phone call. She just had to know.
The liaison she reached explained the treatment to her. Four IV infusions, three days apart. They had patented a modified osteoporosis drug. The hospital was in Vicenza, Italy. Their liaison would transport them to and from the hospital, and they would have the time in between treatments to themselves. The success rate was astounding. Patients who had had the disease less than two years had a complete reversal of symptoms. Patients who had had it longer, experienced a permanent reduction of pain, if not a complete reversal as well. It was far, far better than any treatment in the USA, and cheaper.
It was too good to be true. But when my mother started researching it, the people she’d found who’d undergone it had very good results. Labelling it a cure was not far fetched. It was worth it. Worth the trip, worth the money. Even if it only reduced her pain a little, it would be worth it. They scheduled the trip.
We waited. Hoped. Prayed.
Hoped and prayed.
I never thought she’d be cured. I thought, at best, it would bring her daily pain down to a 4 or a 5. I thought it would take weeks, or months, for the infusions to work. Her Elhers-Danlos made it hard to predict how she’d react, after all.
I have never, in my life, been so very, very glad that I was wrong.
We were receiving daily updates while they were in Italy. She thought she might be feeling a little bit better after the first infusion, when we asked her. That was exciting. They went sightseeing a little bit before the second. It was after the second infusion that she began to notice the pain was going away. Everyday we were getting pictures from Italy. Mom walking on uneven pavement to see the sights. No wheelchair, or cane, or my dad’s arm holding her up. Pictures of her outside, sitting on hard metal chairs at a local cafe. She told us she walked a little bit further each day. They were able to actually enjoy a vacation between the treatments when, just a few months earlier, they thought they’d never travel again.
By the time she flew home, her pain was completely gone. The treatment, the cure, had worked. Beyond any of our expectations. At least, this is what my parents had told me in phone calls and texts. It still hadn’t sunk in.
Which brings me to the airport. At 10:30 at night. Texting my dad to tell him I was there and looking for him around the baggage carousel. I found him by himself. Not standing within arms reach of my mom, ready to catch her if she fell. No protecting her from accidental bumps and jostles from strangers. Just getting their luggage. By himself.
He told me she was filing a missing luggage claim. In a poetic twist of fate, the airline had lost her wheelchair. We could wait for her outside.
I just stared at him. It didn’t compute. Leave her to walk the length of the airport by herself? What if she fell? What if she couldn’t go any further, and she was all alone? He’d been seeing her everyday. He knew she was better.
It still hadn’t sunk in for me.
It must have been all over my face. The confusion. Because he finally said, “Or you can wait for her here. I’m going to get some fresh air.”
He pointed out the glass walled cubicle where she was and left. I walked over and saw my mother. Standing at the counter. Standing. She was carrying a messenger bag and a jacket. Something so simple, that three weeks early had been impossible for her to do.
She saw me then and turned to wave. She smiled.
A true, real, beautiful smile. I hadn’t realized how forced, pained, and grimaced all her smiles in the last two years had been until I saw that one. She’d lost her light slowly over two years of hell. And got it back all at once.
It was the most beautiful smile I had ever seen.
When I finally got to hug her, I cried. I wanted to cry and cry and cry, but my exhausted parents were ready to be home and we were moving towards the door much too soon. It’s probably just as well. If I’d cried much longer, I may never have been able to stop.
Soon after, my mother was able to come to dinner at our house. She hadn’t been to dinner at my home in nearly two years. My children bought her flowers and took her around the house showing her all the things she hadn’t been able to see before. My daughter couldn’t stop hugging her. Grandma was better.
We went to a movie with her. Out to dinner. She came to birthday parties again. And cooked. She laughs again. And smiles. Mom was better.
An evil, horrible disease. It will consume your loved one and all they once knew. I hope after you finish reading this, you never hear of CRPS again. I hope it never touches your life, in any way. But if it does, if it has, there is hope. There is hope in Italy. There is a cure in Italy.
My mother was cured.
My mother is better.