I'll save you all the bureaucratic stuff. If you're a veteran and need encouragement, leave a contact in the comments section and I'll e-mail privately and try to share what worked and what didn't work for me.
The interesting bit started last year when I finally decided something had to be done. My VA orthopedist gave me an article about the latest ankle arthritis procedures, and the VA offered to send me to a podiatry specialist in Seattle. I didn't think much about the options at the time. Kind of figured the specialist would tell me all I needed to know. But then I started getting a funny feeling and decided to at least google all the weird procedural names. As time for my trip came nearer, I decided if I really wanted to make the best decision, I needed to see a specialist in each procedure. Naturally VA wouldn't pay for any of that, but hey, we're talking quality of life here. So I started researching doctors and found a specialist in allografts and a specialist in arthrodiastasis in San Diego. I also googled the guy in Seattle and found he mainly performed fusion (arthrodesis). So I called the two San Diego guys, figuring top notch specialists would never agree to see me without a referral or on such short notice. And both of them re-arranged their schedules to accommodate me!
I'm really glad I paid for the extra leg on the trip. I basically discovered that ankle replacements are still lagging far behind hips and knees technologically. I wasn't a good candidate. The allograft proved to be less than I had hoped. As described to me, it wasn't a permanent solution, tending to fail in about the same time as a replacement. I was really intrigued by the idea of the ankle distraction, or arthrodiastasis though.
For those of you unfamiliar with the option, there are a few good scholarly medical articles available online. Just google the term. Basically, it is a procedure using an external frame that manually pulls apart the joint, creating space. The doctors will be the first to admit they don't really understand why it works. But offloading the joint with the frame, and then doing some weight bearing creates a chemical reaction in the body that can produce new cartilage to cushion the joint. It's not the same cartilage you were born with but it seems to be effective in producing some degree of pain relief. Even if the joint space collapses when the frame is removed, patients can still experience pain relief, sometimes for many (10+) years.
It is not a permanent solution, but seems promising as an alternative to fusion for the purpose of preserving the joint, any available motion, and delaying more drastic procedures while we all hope that technology advances in the field.
I decided a year ago this was the procedure I wanted to try because it would preserve my original parts, would preserve my motion, and because my body has reacted well in the past to minimal medical assistance. I'm all for trying the least invasive thing first. I absolutely want to avoid a fusion at this point because even at 50, I'm considered "young" in the medical community, and because our bodies are meant to bend at the joints. If you fuse one, that stress has to go somewhere, and in most ankle fusions, that's into the knee, back and hip. I already have back/hip issues from limping over the past year.
My local VA knows nothing about the distraction procedure, but did agree I could have it instead of the fusion IF I could find a VA doctor who would perform it in a VA facility. Wow. Talk about a needle in a haystack. Again, I won't bore you with the bureaucracy, but after six months, I realized if anything was going to happen, I was going to have to make it happen. I started making copies of my X-rays and sending out letters. I spent hours on the Internet researching possible candidates. And within the VA system, there aren't many. Actually, nationwide there aren't all that many. Although the procedure has been in the US for at least 30 years, there just aren't many of us ankle arthritis patients around to practice on.
I was stunned to receive prompt, informative responses directly from some of the most experienced people in the field of podiatry. I've had some great e-mail and telephone consultations. About half the people I contacted didn't feel arthrodiastasis was a workable option, or hadn't had much experience with it, or didn't believe it had much benefit. The other half were willing to try it for me, and a few felt it was the exact right choice. And after six months of active investigation and contacting, only one VA doctor was experienced in the procedure and willing to do it for me!
Trust me when I tell you, you didn't want to be my friend or family member over the last year as I've battled to get to this point. It has been a very long, frustrating road to find this one needle in the haystack. But that's one of the main reasons I'm writing this blog. If I can save anyone else the aggravation, I'd really like to.
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