When I was 2, I contracted a virus called Meningococcemia. It is "an infection of the bloodstream that commonly leads to inflammation of the blood vessels". In my case it left me with 80% of my body scarred, my right hand amputated, and a partial amputation of the right foot, specifically known as a Lisfranc. Along with these medical issues my bone density was significantly impaired, and my growth plate in my left leg was damaged. Over the years, I've had over 60 surgeries to repair the damage that was done originally, and post infection as a result of wear and tear on my body.
The significant past ones that you need to know about for this journey include multiple skin grafts, an ankle fusion done on my right, multiple limb lengthening procedures to my left due to the growth plates damage, and an external fixator implanted to straighten the tibia and fibula. These limb lengthenings were strictly to help my left leg keep pace with my rights growth. As a result, the grafted skin on the left became stretched/thin, and I was forced to walk unevenly for years at a time. This uneven walking did some immense damage to my left ankle over the years, and after the last limb lengthening, when going through physical therapy it became apparent that a major problem existed. I could barely get my ankle to flex 90 degrees, and when walking forced it to do so, it hurt greatly. This was in 2004.
Before the problem concerning the left ankle had been diagnosed, we moved to a different state. I spent a year traveling 4 hours each time to see a doctor that was the only one in my state on the list of approved doctors based on my insurance. He was horrible. He couldn't even comprehend my case. At the time, I was spending 8 hours a day on my feet, and afterwards I would collapse on the couch with my legs up and the inability to walk at all. I'd have to walk on my knees, or scoot on my butt around the house.
In May 2006 I decided to change insurance, find myself a competent doctor, close to home, and work towards a solution. I struck gold. Somehow I managed to find my current doctor, who gave me a prognosis that day, and offered options.
After walking unevenly for most of my life, the cartilage and bones in my ankle had worn down beyond repair. What made matters worse was that the last lengthening in 2003 had been for about 3.5 inches, and this newly formed bone had grown in curved, causing me to walk unevenly, regardless of the fact that my legs were equal in length. The curvature wasn't caught while forming because of the angles the x-rays had been taken at. What I had been feeling all this time was the bone on bone grinding, the inflammation of the surrounding tissues, and MAJOR arthritis.
One option was an ankle fusion in the left, which I was totally against due to the pain in my fused ankle on the right. At this time ankle replacements were still in the process of being approved in the US, but my doctor had high hopes that we could hold off until it was an option (approx. 2 years), with some sort of drug therapy. Over the years I've had to take so many pills due to my medical history, that I try to avoid them as much as possible, so I ruled out pain killers. Another idea he presented was cortisone injections. Over time their effectiveness lessens, but they offer real relief, and could do the trick. I started them, at I think about every 4-5 months...but don't quote me on that. Even though part of my pain following the injections was due to their effectiveness lasting for shorter intervals, it became quite clear that my physical condition was deteriorating. Even with the cortisone, I could barely stand on my feet for an hour. During this time period my doctor advised me to have a surgery implanting an external fixator that would straighten the curved 3.5 inches. The reason for this is simple. The stress of the walking on a replacement joint is made that much worse with a curved bone. Not only would the false joints life span be shorter but my pain would still exist. It took about 6 months to complete, and since the bones had needed to be shifted, my tibial tuberosity now jutted out of my leg. I refer to it as my "Pop Out bone" which you will be able to see in the photos of my limbs prior to becoming a DBK.
By the time the ankle replacement procedure became approved, I was getting shots every month or 2. I would've probably gotten them more frequently if I had the money to do so, but that was a limiting factor. My new Pop Out bone restricted me from walking on my knees as I had previously done, and so scooting on my butt around my home became my regular mode of transportation. Also, I found my right ankle that had been fused many years ago was starting to hurt more often. The pain had become intense and limited my standing/walking ability even more-so which, left me wondering what to do on that side.
Excited to find that the procedure had been approved in the US and that my Doctor was 1 of 10 orthopedic surgeons in the country allowed to perform it, I came to him with hope of scheduling the surgery. Surprise surprise! The procedure is too new to the US to be covered by insurance. It's considered experimental even though its been done in other countries for years. With no coverage it comes to 40k. He becomes an advocate of the procedure, trying to get insurance companies to approve it. Writing appeals, speaking to news stations, and doing everything he can to bring attention to it. He finds limited success. A few start to cover it, the biggest known: Medicare. What insurance do I have? Not one that covers it. So I look into qualifying for Medicare since I've been on disability for some time now. Epic Fail. The reasoning is my age, or so told tell me.
I continue on the cortisone injections, still suffering, but now without hope. After a very long day I crawled into bed with my husband. My left ankle was swollen, red, and hurting beyond belief, while my right foots skin became broken down, oozed, and the right ankle was swollen. I was in so much pain that I started crying. Then the thought having to live this way, in pain, forever, or in a wheelchair made me cry much harder. My husband tried to comfort me and after me telling him how there were no other options, he asked me about amputation. I became hysterical, and adamant that it wasn't an option, so he left it alone, knowing all too well that he had at least planted the seed.
The idea scared me. Part of the fear though, came from something in my past. The Lisfranc amputation of the right foot had been extremely difficult when trying to fit a prosthetic and keep functionality as a kid. An amputation further up had been suggested to my mother multiple times throughout the years, and each time she would freak out, object, and find a new orthopedist. Her so called reason for this was because she was concerned that it would cause me self image problems. Later on in life, I had many of those, but at this time, they didn't exist. Her idea that this would harm my self image resulted in many years of needless pain and suffering. This also resulted in me having an unfounded objection to the amputation.
Not to say that the concept of chopping off ones limbs should be easy to accept. Obviously, it has to be approached with logic, but emotion plays a huge role in it as well. My experience with my mother just made it that much harder. HOWEVER, as you can see my mothers reasoning wasn't very logical at the time. Given the shape my body was in as a kid, I would surely have self image problems, regardless of a further amputation or not. She tends to be completely irrational, illogical, and well, I'll say it, bat-shit crazy in general. After taking this into account, I had to re-evaluate my objection. It took about 2 months, but I finally came to terms with it and brought it up with my doctor. He was totally on board. Why he didn't suggest it to me as an option I don't know, but I would bet based on what I know about him, that he read me, and knew I'd probably come to this on my own, and would've rather it be something I wanted instead of something he was traumatizing me with.
Since my right leg was used to prosthetics, and didn't have many options either except to deteriorate further, we decided to amputate that one first. It'd be an easier recovery and rehabilitation for me. Surgery date was set 2 months later, and here, we begin our journey.
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