Hi everyone,
Well it’s been about 6 months since my last update. This will be a lengthy read so I apologize in advance.
As the year closes, I’ve spent much time reflecting on the year. The year of 2017 was the first time since 2012 where I didn’t have an operation to one or both of my feet. I spent the year recovering from last year’s operation to my right foot, pondering an amputation, as well as exploring non-surgical options.
As noted in the July update, I began getting “lumbar spinal blocks” to deaden the sympathetic nerves that travel from the brain, through the spine, and onto the foot. I had three total to the right side and one to the left. The left showed no change as I determined the majority of the pain comes from my right foot. The second injection to the right side showed a lesser reduction in pain and the third unfortunately showed no change at all. As a result, my pain management doctor and I decided to stop with the injections.
Also in July, I stated I was planning to see an orthopedic surgeon about the right foot’s big toe and small pinky toe. In visiting her the first time, we talked about the history of my right foot and discussed amputation. She stated that while an amputation is reasonable, she posed if I had ever considered a special type of leg brace. This began a journey that began in July and continues onto 2018.
It’s called the “
ExoSym Leg Brace,” which is a hybrid prosthetic/orthotic originally developed for military veterans with a severe lower limb injury who seek to continue active service. The original designer went on to the private sector and now works for the Hanger Clinic servicing individuals considering amputation. I contacted the Hanger Clinic and sent medical forms, doctor chart notes, x-rays, pictures, and videos of me walking. Since my original injury was an “on-the-job” injury, it depended on whether my worker’s compensation approves of the leg braces. The Hanger Clinic sent the entire file, including separate statements by my doctors (main doc, orthopedic surgeon, and pain management doc) to my worker’s compensation in September. In early November, worker’s comp denied the leg braces due to the cost: $31,900. I knew they were expensive, but even I was shocked at the price.
The letter stated that I had to seek two other suppliers of the ExoSym leg brace. Here's a
portion of the letter. The problem is that this device is patented which I stated numerous times. Nevertheless, in performing more research, I discovered that these types of leg braces are called AFO’s (ankle-foot orthosis) and are known as “unloaders.” These take the weight of the energy needed to create a “step” from the foot and transfers it to the knee joint. During this month (December), I met with two local suppliers. One is made in-house and the other is made in another state. The developer who designed his version in-house, I’ve established a good rapport over the past 2 years. I worked with him last year where he custom-made the orthotic and altered the new shoes that I still use today. His cost was about 1/3 less of the ExoSym. The other supplier is a basic AFO device and costs about $6k. I sent all this new information to my worker’s comp about two weeks ago. January 6, 2018, will mark 2 months from the original denial letter. I should know of their decision probably in January or early February.
In a recent visit with my orthopedic surgeon, I still need surgery for my toes. This is regardless if the leg braces are approved. The big toe needs to be fused. It definitely hurts, even just to touch it. Here’s an
x-ray taken in July that shows a “ridge” at the toe joint. That wasn’t there in April 2016, when the foot was reconstructed again. As for the pinky toe, my doctor stated that while it’s possible to reconstruct the toe, the least complicated procedure is to amputate it. I said that I knew that there was a possible amputation but I did not want to hear that. I’ve had complications with almost every operation. I have an appointment with her on January 3 and will give the approval to amputate the small toe. I needed some time to think about it.
Back to my feet, that April 2016 operation did eliminate the bone pain I had at mid-foot. Other than that, overall it made the pain worse. About 2 months ago, I thought I was doing better so I took myself off painkillers. The results were very painful and shocking. The pain was unbearable as I could only walk a couple steps before it became agonizing again. I realized that in order to be comfortable and reduce painful triggers, it’s best to stay home and only go out when necessary.
Therefore, I’ve spent the entire year busy dealing with my feet. I still think about an amputation for my right foot and weigh the pros and cons. I think I’d be better off with an amputation. I’m just unsure if the pain would be reduced as other docs have stated it may make the pain worse. In addition, I still have my left foot to deal with. On the other hand, my right foot has been through so much: 25 operations, physical scars, emotional distress, endless amounts of pain, difficulties walking, and the list goes on. It would be a waste to amputate the foot. That’s my nonsensical thinking. I’ll wait for the news on the leg braces and hope to have this new operation soon and will provide better updates.
My outlook for 2018 remains hopeful.
Thanks for the continued support and prayers,
-Ed
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I'm returning to my doctor to have it examined again in the first week of July. 
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