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It's called Ehlers-Danlos Syndrome, part 2
10 years ago
Alright: last time we talked about Ehlers-Danlos Syndrome in general, the various symptoms, and the difficulties that come with the diagnosis. Today I want to talk about the biggest effect it has had on my life: namely, how it permanently crippled my left knee.
You'll recall from part 1 that my muscles, tendons and ligaments are all very prone to tearing due to my EDS, and that my joints are loose and unstable. These two factors combined in the worst way possible two years ago, when I was in a friendly soccer-game and I collided with another player. Somehow the collision got me airborne for a second or two, and sent me spinning.
I landed on the foot of my fully outstretched left leg, which not only sent a huge vertical impact straight up my leg, but which also meant my leg was now firmly planted on the ground while the rest of me was still spinning. The combined impact and rotary force completely tore my anterior cruciate ligament (ACL), my medial collateral ligament (MCL), and my lateral meniscus. This meant that my knee had lost all its stability on the righthand side -the MCL is a basically a thick, stabilizing cable running alongside your knee, and the meniscus is a thick wedge of cartilage next to it- as well as one of the core stabilizers that allow it to bend and support weight (the ACL cable is basically the structural link between your upper and lower leg). Anytime I tried to put any weight on that leg, my knee just instantly buckled to the right in an extremely painful and unnatural way, and eventually I had to be carried to a car and driven to a hospital.
Now, this particular combination of injuries (ACL, MCL, and meniscus) is called the Unhappy Triad. It is one of the most serious injuries that athletes can generally sustain, right up there with tearing your quad or herniating a disk in your back. Tearing the ACL alone is enough to put anybody out of commission for several months (with total recovery time often amounting to 1-2 years), but adding in the MCL and meniscus is just utterly devastating. Treatment for the Unhappy Triad is surgical, with doctors looking to graft new tissue into place to repair the ACL, and also treating the meniscus while they're there. The ACL surgery is absolutely necessary if you want to get back into sports or other physically demanding activities, because it is the only way to get the necessary stability back. And this is where EDS comes in again, because:
I can never undergo the surgery needed to fix my ACL. Ever.
I briefly mentioned this last time, but Ehlers-Danlos Syndrome can cause severe complications in surgery. The first big problem is that it makes blood vessels very fragile, thus posing a major life-threatening risk to pretty much all surgery. But I would honestly be willing to take that risk, if it weren't for the second major problem with EDS: damaged tissue never fully heals, and that includes the tissue grafted on by the surgery. It would "heal", yes, but really only in the sense that it would stop bleeding. The new tissue would not properly fuse with the old, and whereas most people would get about 90-98% of their old functionality back with this surgery, I'd be lucky to get more than 50%. At that point, it's just not worth it to risk my life and spend multiple years recovering, only to end up with a knee whose limits I'm not familiar with.
(For those of you wondering: yes, that also means that transplants are much riskier affairs with me than with ordinary people.)
With surgery off the table, my ACL and meniscus have never been repaired, and EDS has ensured that neither they nor my MCL have had much in the way of natural healing. So now anytime my left leg unexpectedly has to absorb some shock or impact, or anytime I twist it awkwardly, here's what happens:
- First, my meniscus tears with an audible *pop!* from the applied force. The meniscus mainly serves as a literal shock-absorber for the knee, so tearing it immediately increases the pressure on the remaining ligaments. I actually experience a minor tear in my meniscus every few days now, from seemingly the most innocuous things, but actual impacts/twists will cause a severe or total tear.
- Second, the increase in pressure becomes too much for my now-crippled ACL to bear, and so the knee will start to buckle to try and relieve the pressure. But bending your knee the normal way actually increases the pressure on the ACL, so the knee will instead try to buckle to the sides. Which is why...
- Third, the sideways pressure tears my weakened MCL apart, and my knee buckles to the right. Imagine if someone hit your knee from the side with a baseball bat, and the direction in which that would force your knee to move. That's the kind of bending my knee is now doing, and it is sheer fucking agony.
This has happened to me almost a dozen times since the original injury in that soccer-game, and every time it happens I suffer more irreparable damage. Remember: with EDS, damaged tissue never heals 100%, so my knee gets incrementally and permanently worse with each accident.
To prevent this, I am now wearing a stabilizing brace around my knee anytime I leave the house (and sometimes in the house). The brace means my knee can't buckle sideways, so all that pressure just passes harmlessly through my MCL without actually causing any damage. I will also soon be starting a physiotherapy program that's meant to strengthen the muscles and tendons in my knees and legs so they can carry some of the weight and absorb some of the shock that ligaments normally do. This will hopefully be enough to keep the knee from getting any worse for a good long while, and I can also start using a cane to further alleviate the pressure when it becomes necessary. But odds are good that eventually something will injure one of my other ligaments, and the knee simply can't support my weight anymore. When that happens, the best solution is honestly to amputate and get a prosthetic. I've discussed that option already two journals ago, so I won't repeat myself here.
EDS is a highly enigmatic genetic disorder, so a cure isn't coming anytime soon. There is hope that stem-cell research can eventually make surgery a viable option by increasing the rate of tissue regeneration, but those results are still at least two decades away. In all likelihood my knee will never be healed, but I am hopeful about the future of prosthetics: they are getting both cheaper and more sophisticated every day. And I like the idea of being the first cyborg in the family.
That really only leaves the question of genetics: do I want to subject my children to this same kind of hardship?
Lucky for me, I already answered that right here: http://www.furaffinity.net/view/14148260/
- Seskra.
You'll recall from part 1 that my muscles, tendons and ligaments are all very prone to tearing due to my EDS, and that my joints are loose and unstable. These two factors combined in the worst way possible two years ago, when I was in a friendly soccer-game and I collided with another player. Somehow the collision got me airborne for a second or two, and sent me spinning.
I landed on the foot of my fully outstretched left leg, which not only sent a huge vertical impact straight up my leg, but which also meant my leg was now firmly planted on the ground while the rest of me was still spinning. The combined impact and rotary force completely tore my anterior cruciate ligament (ACL), my medial collateral ligament (MCL), and my lateral meniscus. This meant that my knee had lost all its stability on the righthand side -the MCL is a basically a thick, stabilizing cable running alongside your knee, and the meniscus is a thick wedge of cartilage next to it- as well as one of the core stabilizers that allow it to bend and support weight (the ACL cable is basically the structural link between your upper and lower leg). Anytime I tried to put any weight on that leg, my knee just instantly buckled to the right in an extremely painful and unnatural way, and eventually I had to be carried to a car and driven to a hospital.
Now, this particular combination of injuries (ACL, MCL, and meniscus) is called the Unhappy Triad. It is one of the most serious injuries that athletes can generally sustain, right up there with tearing your quad or herniating a disk in your back. Tearing the ACL alone is enough to put anybody out of commission for several months (with total recovery time often amounting to 1-2 years), but adding in the MCL and meniscus is just utterly devastating. Treatment for the Unhappy Triad is surgical, with doctors looking to graft new tissue into place to repair the ACL, and also treating the meniscus while they're there. The ACL surgery is absolutely necessary if you want to get back into sports or other physically demanding activities, because it is the only way to get the necessary stability back. And this is where EDS comes in again, because:
I can never undergo the surgery needed to fix my ACL. Ever.
I briefly mentioned this last time, but Ehlers-Danlos Syndrome can cause severe complications in surgery. The first big problem is that it makes blood vessels very fragile, thus posing a major life-threatening risk to pretty much all surgery. But I would honestly be willing to take that risk, if it weren't for the second major problem with EDS: damaged tissue never fully heals, and that includes the tissue grafted on by the surgery. It would "heal", yes, but really only in the sense that it would stop bleeding. The new tissue would not properly fuse with the old, and whereas most people would get about 90-98% of their old functionality back with this surgery, I'd be lucky to get more than 50%. At that point, it's just not worth it to risk my life and spend multiple years recovering, only to end up with a knee whose limits I'm not familiar with.
(For those of you wondering: yes, that also means that transplants are much riskier affairs with me than with ordinary people.)
With surgery off the table, my ACL and meniscus have never been repaired, and EDS has ensured that neither they nor my MCL have had much in the way of natural healing. So now anytime my left leg unexpectedly has to absorb some shock or impact, or anytime I twist it awkwardly, here's what happens:
- First, my meniscus tears with an audible *pop!* from the applied force. The meniscus mainly serves as a literal shock-absorber for the knee, so tearing it immediately increases the pressure on the remaining ligaments. I actually experience a minor tear in my meniscus every few days now, from seemingly the most innocuous things, but actual impacts/twists will cause a severe or total tear.
- Second, the increase in pressure becomes too much for my now-crippled ACL to bear, and so the knee will start to buckle to try and relieve the pressure. But bending your knee the normal way actually increases the pressure on the ACL, so the knee will instead try to buckle to the sides. Which is why...
- Third, the sideways pressure tears my weakened MCL apart, and my knee buckles to the right. Imagine if someone hit your knee from the side with a baseball bat, and the direction in which that would force your knee to move. That's the kind of bending my knee is now doing, and it is sheer fucking agony.
This has happened to me almost a dozen times since the original injury in that soccer-game, and every time it happens I suffer more irreparable damage. Remember: with EDS, damaged tissue never heals 100%, so my knee gets incrementally and permanently worse with each accident.
To prevent this, I am now wearing a stabilizing brace around my knee anytime I leave the house (and sometimes in the house). The brace means my knee can't buckle sideways, so all that pressure just passes harmlessly through my MCL without actually causing any damage. I will also soon be starting a physiotherapy program that's meant to strengthen the muscles and tendons in my knees and legs so they can carry some of the weight and absorb some of the shock that ligaments normally do. This will hopefully be enough to keep the knee from getting any worse for a good long while, and I can also start using a cane to further alleviate the pressure when it becomes necessary. But odds are good that eventually something will injure one of my other ligaments, and the knee simply can't support my weight anymore. When that happens, the best solution is honestly to amputate and get a prosthetic. I've discussed that option already two journals ago, so I won't repeat myself here.
EDS is a highly enigmatic genetic disorder, so a cure isn't coming anytime soon. There is hope that stem-cell research can eventually make surgery a viable option by increasing the rate of tissue regeneration, but those results are still at least two decades away. In all likelihood my knee will never be healed, but I am hopeful about the future of prosthetics: they are getting both cheaper and more sophisticated every day. And I like the idea of being the first cyborg in the family.
That really only leaves the question of genetics: do I want to subject my children to this same kind of hardship?
Lucky for me, I already answered that right here: http://www.furaffinity.net/view/14148260/
- Seskra.
Twilightinsanity
~twilightinsanity
man, I need to wash my eyes out, now.
Seskra_The_Spider
~seskrathespider
OP
Sorry about that. I was worried that the baseball bat-simile was maybe too graphic, but it was the best description I could think of. And I'm sorry these posts turned out to be such huge bummers, but writing them was immensely cathartic and I'm still glad that I did it.
Twilightinsanity
~twilightinsanity
don't ever apologize for it. you should know by now that I live for this kinda stuff, anyway. and besdies which, you are doing this for yourself. you have every right to keep doing this for yourself, with no regrets, no apologies, and no shame. :)
