Orthopedic surgery advancements not for me. Am I wrong? Suggestions?

Way back in the day, ever since being discharged from the Hospital for Special Surgery (which hangs over the East River in NY), I’ve taken seriously warnings of the surgeons not to get another surgery on the leg, ever, lest, as they say, I never walk again. The temptation for the surgeons would be to amputate the leg just to be done with it. Quite the warning from the best of the best in Orthopedics.

I can walk just fine right now, kind of, such as the length of the church. But things seem to be disintegrating just a little bit. Should I get another operation or not, risk an amputation or not? People tell me that there are great advances in orthopedic surgery over the past few years. It’s just that the back-mountains of Appalachia where I am is a bit of a medical desert. And just maybe someone “out there” will see this who has just the right bit of knowledge that will do me some good.

Keep in mind that I was supposed to wear special orthopedic boots and bars on the left leg as a little kid. I wore the boots but not the bars. The left leg especially is congenitally twisted. Since that was not corrected early on it cannot be corrected now, as the muscles and tendons are settled where they are. I asked a surgeon if he could just twist the leg to something more “normal” since he will have access to do that during surgery, and he said that if he did that the tendons and muscles would literally rip the leg apart, breaking bones in the process. This will, in fact, happen later anyway (see below).

Also, when I was in junior high school, I was supposed to wear a full back brace but did not. A messed up backbone can also affect what happens with one’s legs.

Here’s a skeletal overview, so to speak, of my orthopedic situation by way of the hospitals I’ve visited (so far), at least the ones that I remember off-hand:

• Ospedale di Santo Spirito in Sassia, Rome, Italy (These guys put on the “miraculous” cage, the Ilizarov apparatus, pictured above, and much later took it off. There was a great missionary doctor teaching this method. He totally saved my leg, avoiding amputation, which we had discussed. He had said if it were not for this method, they certainly would have straightaway amputated the leg. Even after a successful operation, he warned me of a possible, probable future amputation, in which case, I was told, I would never walk again. As it is, the traffic accident itself had almost completely amputated the leg, severing nerves and blood vessels, making for a pool of bubbly red blood on the street with bits and pieces of bone. This one crushing accident caused most of the 25 breaks in the leg from the knee all the way to deep into the ankle.)
• Policlinico Tor Vergata, a spectacular new teaching hospital on the outskirts of Rome, Italy (These guys had the latest and greatest x-ray equipment, but couldn’t schedule any surgery to take care of some increasing complications. Such a beautiful new hospital, but they said they weren’t ready to deal with cases like mine. At least I had really good x-rays. I think they just didn’t want to amputate but didn’t know what to do other than that.)
• Policlinico Umberto I, Rome, Italy (The head surgeon of the hospital came out into the mayhem of the hospital entrance where I was splattered out on a gurney. He very humbly and apologetically admitted that they weren’t up to the task of trying to fix what had now turned into a catastrophic disintegration of the leg, completely shattered once again, sending me by way of meat-wagon ambulance to another hospital. I think they just didn’t want to amputate.)
• Centro Traumatologico Ortopedico Andrea Alesini, Rome, Italy (You would think that this specialized hospital for orthopedics would be great. No. What a nightmare. Traumatic. After they destroyed my leg even more – it makes me queasy just to think about it as it really seemed malicious – with my leg in bits and pieces, with a couple of two by fours wrapped in gauze for an almost useless splint, and at the invitation of the head of the Catholic Hospitals in NY, and after a friend delivered my wheelchair to me, all on my own I got on a plane and went to New York.)
• A not ever to be named hospital in NY NY (This hospital was closed weeks later with my surgeon going before a review board; the 90 minute surgery was thirteen and a half hours with horrific complications. It couldn’t possibly have gone worse. Well, I lived, truly, just barely, and they didn’t amputate… but…)
• The Hospital for Special Surgery, NY NY (Totally utterly destroyed at this point, a nice doctor suggested I go elsewhere. Fancy that. With my ever handy wheelchair and crutches, I hailed a cab and made my own way across NY City to the Hospital for Special Surgery. You gotta do what you gotta do. At least HSS is the best of the best of orthopedic hospitals anywhere in the world. This was my last operation on the lower leg. They undid the damage from the previous hospitals to a point, but warned me about future complications and even probable amputation if there were to be another operation. Even they admitted to not having quite what was needed for the operation. The brokenness was quite unique in circumstances.)
• Ospedale San Carlo, Rome, Italy (Fearing they would have to amputate, a team of four doctors chose not to risk a surgery otherwise almost always necessarily done for the kind of spiral fracture I had developed, that was spinning itself around the surgical steel installed by the HSS. “Just stay totally off the leg and let’s see what happens,” they said. That worked, but more recently I’ve been bad, walking in processions and even DQ-ing a qualification run. Right now I’ve given that up altogether. I had to…)
• Ospedale Generale Madre Giuseppina Vannini, Figlie di San Camillo, Rome, Italy (The PT guys are great, having challenged me to outsmart them by doing my own PT. This was a surgery on a crumbled meniscus in the same leg, but above the war zone of bits and pieces below the knee. The loud noises my knee has sometimes made is rather heart stopping, but that hasn’t happened for a while.)
• Mayo Clinic, Rochester, MN, USA (These guys did a medical intervention on the knee, and gave me great instructions to do up my own PT to rebuild greatly diminished muscles in the entire leg.)

As I get older and bones get more brittle, the surgical steel is now ever so slightly shifting in the worst ways possible. One of the best doctors said there will be a danger of the surgical metal exploding the base of the tibia, going through the ankle and right into the ground. It’s not a good fit, he said.

I’ve had no explosions, yet. Those are someone else’s x-rays above. I don’t know what’s going on there. Maybe it’s all good. But it looks to be analogous to what I myself had been warned about. Yikes!

In the last half year or so, there has been some episodic lightning pain from the bottom of the tibia and top of the ankle, like getting hit with a sledgehammer, enough to about drop me instantly to the floor, and also pain in the tibia from pressure from the surgical steel, not just from the bottom, but also mid-way between the knee and the ankle, just on one side. That’s… weird… I’ve asked someone to whom the same thing happened. I didn’t like what I heard.

I’m walking fine just now, kind of, for right now. Are there really advancements in surgery that could prevent the leg exploding into bits and pieces yet again? Take into account the congenital history of a twisted leg with already off-center also twisted heels, causing fractures regardless. Even the metatarsals have fractured time and again.

People tell me that just as a weld is stronger than the rest of the metal, just so is a broken bone stronger at the break. Not necessarily. The “weld” may be rather thin and tenuous. Thus, a rather large chunk of bone busted off early on post-surgery, floating perpendicular, soldering itself it, but growing sideways, continuously causing trauma wounds on the skin that took some 15 years to heal up as the bone finally rounded-up a bit. I had boxes of rolls of elastic bandages made of every material and every grade of stretchiness, every kind of clip or Velcro or even string-ties to wrap around the leg, both to avoid more trauma wounds, and to keep the swelling down, as the circulation was very poor. If the “weld” was less-filled-in, is it really stronger?

But maybe I’m just not seeing the solution, or don’t want to see it if it involves surgery, which is always more traumatic the older one gets. I’m still young, early mid-60s. But the warning of an almost inevitable amputation if there’s another operation rings in my ears. I deserve all the “ghost pain” I would get. Whatever with that. But as one doctor said, if you can keep your leg, do it.

This is my request: would any great advances in orthopedic surgery also fit my case?