Details, Schmetails

I've been finding it a bit of a challenge explaining to ordinary folks what it means to live with CMT Syndrome, why I had to have such an extensive surgery on my foot, and what this virtually unknown disease is doing to my body. . . So, I was doing a little online research today and found this article about CMT Syndrome. I've known all along that what my surgeon has been telling me is the right thing to do for maximum longevity, but it was really enlightening to read an article (complete with images) that demonstrates how and why he did it. . .

We all know that I have insanely high arches, but what the surgeon explained to me is that my heel was also beginning to turn inward (just like the photo demonstrates). He turned it back out and anchored it with a bolt.

Also, we knew the peroneal ligament had completely torn and needed to be repaired, but none of the doctors I saw before the surgeon could explain why . . . the article totally explains how the ligament finally wore down and why. . .

In total, this is the list of what we did to my foot (you can click on the links in the article to get more details):

* Release of the tight plantar fascia
* Lengthening of the Achilles Tendon
* Repositioning the 1st metatarsal bone (dorsiflexing 1st metatarsal osteotomy)
* Cutting the heel bone and shifting it out (Lateralizing calcaneal osteotomy)
* Peroneal tendon debridement or repair

Very interesting! I feel so much calmer knowing that I made the right decision to have the surgery! And, soon enough, it will be on to the right foot in the hopes of a better life! ;)

Crippling News

After nearly a full year of walking in pain along the streets of New York City; countless doctor's appointments; several MRIs, x-rays, and neurological tests trying to find the source of my pain, I finally met with a surgeon who today told me that he needs to completely "rebuild" my left foot and ankle.

I was prepared for the news that surgery was inevitable, but I was not ready to hear the extensive details of how he will have to break my foot, cut my achille's tendon, and re-anchor the tendons and ligaments on the exterior of my ankle. Getting the play-by-play, I nearly "lost it" in his office and I am definitely losing it now as I write this post.

I'm a cripple (for lack of a better term, really). Many of you have at least one, if not many, memories--I am sure--of me falling, tripping, or tumbling down stairs, slippery floors, or incredibly something as simple as my own two feet (yes, it's possible and I do it a lot, folks). And, after years of broken bones, sprains, and more, Dr. Weinfeld has finally confirmed what a few of New York's finest physician's have suspected for the last year--I am genetically pre-disposed to being "accident-prone." It seems funny, but only because I am making my best attempt at finding this diagnosis humorous right now . . .

Charcot-Marie-Tooth Syndrome is a hereditary neurological disorder that causes shortened calf muscles, extremely high arched feet, and weak ankles. The root of all these side effects is a syndrome that will slowly over the course of my life kill the nerve endings in my hands and feet, which will eventually atrophy all the muscles in my extremities. Much like muscular dystrophy, I will progressively lose most muscle strength in my feet and/or hands over my lifetime. . . The surgery that Dr. Weinfeld wants to perform will likely be the first of many that I will have to endure for years to come in order to maintain full use of my feet.

I am incredibly terrified, but at the same time calmed that I have found a surgeon that is so well-versed in this condition and is confident that I am going to recover well from the surgery. But, I can't help thinking what does this diagnosis mean for me and the rest of my life? What does this mean for the opportunity to have children some day? (I can't help thinking now that it's probably a blessing in disguise that I never married and had children in my 20s . . . )

Now, what to do? When to schedule my surgery? Should I do it now in the hopes that I will be in a walking boot in time to travel for the holidays? Or, do I wait until January when the officework is a little slower, but snow is on the ground and I am stumbling with crutches to get into a cab every morning to get to work ? How will I take care of myself in my little studio apartment; in this big city without a car? I really am losing it . . .