Charcot-Marie-Tooth: My Operations in My Early 20's

Welcome back and thank you for reading yet another chapter in my life story with CMT. Some might find me boring for retelling parts of my history that all center around one thing, but I am hoping that it helps someone out there. Today I am going to talk about the point in my life where things truly did change for I had to think of my future.

So I have already had my son and decided that I should see a couple of doctors about my CMT before heading off to school and such. When I had my first appointment with an orthopedic surgeon shortly after my son's birth, I was a bit uneasy for it is so easy for a doctor to say that they have seen Charcot-Marie-Tooth and know about it and then discover they were blowing smoke along for they knew nothing apparently. This orthopedic, however, was truly different for he did have a clue about what CMT is for he taught me a few new things about it. I was shown how to tell if my hands and at that point I didn't even realize they were being affected but he showed me how he knew they were. He sounded very knowledgeable and when I mentioned about the one doctor who told me I would be in a wheelchair by the time I was 25 he actually laughed out loud and said he hoped I wasn't still seeing that doctor who apparently didn't know anymore about the disorder than what he must skimmed while in school some years ago. I never had a doctor be so frank in their opinion of another doctor and that really helped me be comfortable with this surgeon.


He then went on to tell me that I should seriously think about having a surgery on my ankles and feet, and I really only remember him explaining that he would do a tendon transfer. When I asked him about that he explained that he would take a portion of the tendon that runs on the inside of the ankle and transfer it to the outside after he removed the outside ankle tendon. When I ask what was the point of that since the CMT was in my feet so everything would be affected, he explained that the outside tendon is the first to be affected while the inside tendon tends to be the last to be affected. I wasn't sure about that but everything else he talked about was right so I took him for his word but I didn't commit to anything because of the rest he told me. I was told that I would be in a wheelchair for 6-8 weeks for I couldn't take a chance of putting any kind of weight on my foot that would be in full cast for that time. After that I would still be in the wheelchair for another 4 weeks while my foot would be put in a half cast (the back half would remain but the front of the cast removed and it being held in place with an ace bandage), then I would be in AFO's for another 4 or so months with taking physical therapy at the beginning to basically learn how to walk again and gain strength in my leg. All together we were talking about 7 months of recovery just for one single surgery for he wouldn't do both feet at one time.

I had a lot of thinking to do because: one, I wasn't certain about the surgery that only had a 50/50 chance of working; two, I was living in a second floor with plenty of stairs so I would have to move and living on welfare that wasn't really an option; and three I had a small child to think about. I was told that the window of opportunity was small so I didn't have a long time to think about it. After talking with my parents, I decided that I would go ahead with the surgery if I could get things worked out. It was suggested to me that I go on SSI to be able to get the money needed for a new apartment. By going ahead with the surgeries that would mean that there would be delays in going to school and getting out there in the work force to support my family and I on my own. Delays could be handled if that meant that I could walk longer under my own steam.

It took time for my Social Security Disability (SDI) and SSI to come through, then for me to find an apartment that would work with a wheelchair and have all the details in order for my son to be taken care of while I was in the hospital. My first operation took place early in 1994 when my son was about 10 months old. All told it took about 8-9 months to get everything into place so that I could have the first operation.

I went into the hospital the morning of the surgery, scared to death for I had never been operated on before. Once in the operating room the fear became intense, but one OR nurse held my hands and wiped the tears from my eyes until I was out completely. After I woke up things got interesting over the next few days. This first operation was a lesson in mistakes that thankfully were not repeated with the second operation. Immediately after the operation my leg was placed in a fiberglass cast which is what caused problems while in the hospital. Over the next few days my foot was in such pain that before a doctor finally took a look, I got to the point where when my young son just barely touched the cast I would go through the roof from the pain. That was something I had never experienced before and never want to experience again honestly.

Not My Foot
Found picture online
and using it as an example

Finally, as I said after about 3 or so days of the pain increasing a doctor finally decided that it was time to take a look inside the cast since the pulse in my foot was just fine and so was the coloring. He started using the cast saw which sent me through the roof and beyond in pain. He completed one side while I was crying and started on the other side. He went down from the top to the ankle then up from the toes toward the ankle. Once he got to where he could open the cast he never got the chance for there was a loud pop from the cast and just as equally loud sigh of pure relief. As soon as the cast was opened enough for it to pop open the way it did the pain immediately disappeared. My foot had apparently swelled so much inside the cast which is why I was experiencing so much pain.

I had been warned that my son might not sit all that quietly in my lap while moving around in the wheelchair but that child had an old soul in such a young body. It was suggested I get a belt to help buckle him in my lap for his safety but that child sat perfectly still in my lap and wanted to go for rides in my lap. I wasn't able to do things like I would have wanted, for example when the Easter egg hunts happened I couldn't be the one walking with my son but thankfully I had family and friends who were there beside him. I couldn't walk beside him in the grass or sand or the park but again it was family and friends who stepped in to take over where I could not. That didn't stop my son and I from doing things together for we went on rolls together around the block and he loved it. We also learned how to rough house together without me putting weight on my foot so though I couldn't do somethings with him we did plenty of other things together.

When it was time to go to the technician that would mold my leg for an AFO (yes I was willing to wear those torture devices for a period of time) another complication popped up. The technician took one look at my foot and said that he could not touch me because of an infection that was raging on in the bottom of my foot. I never even knew that anything was going on, since I had no feeling what so ever in my foot, and I was under strict orders not to twist my ankle in anyway yet, I couldn't even see the bottom of my foot. My Mom took me straight to my doctors office who fit me in, and he barely walked in the door when he told me that I was going into the hospital. There was no planning but again family stepped up and helped out. My Mom dropped me off at the hospital so that I could be admitted while she took my son to my sister and basically dropped him off saying that she was going to have to watch him for a few days since I was in the hospital.

I ended up in the hospital for another week on IV antibiotics and strangely enough I never felt sick nor had a fever. I had x-ray's taken of my foot and an MRI for the fear among the doctors was that the infection I had in my foot, that was so bad that I didn't have an arch anymore (and I have some pretty high arches) and the infection was actually bulging the bottom of my foot out, was a bone infection that I was told would always affect me for bone infections never went away though there are treatments just no cures for a bone infection. I lucked out though for it was only cellulitis for once my orthopedic doctor debrided the area, the infection was mostly gone. I still remained in the hospital on IV antibiotics even with the much better looking foot.

The second operation took less recovery time, of about the 7 months expected instead of the almost year that it took with the first operation. This was because there were no repeating of things that caused the problems the first time around such as the swelling of the foot for they split the cast right away and wrapped it with an ace bandage until I was ready to be released from the hospital. Also what caused the infection in my foot was avoided by doing something different as well.

All in all for both surgeries took about 20 months so only a little longer than we originally thought of about six months. At end of it all I have to say that I got both ends of the possibilities with the surgeries. One, the first one ironically, worked wonderfully and even to this point I need no support on the ankle to walk nor it is the one that gives me the greatest problems. My other foot, the one without all the complications is the one that didn't work as well. I have to use an ace wrap that has plastic inserts on the sides to give my ankle the support it needs. I know I should use an AFO on that ankle but with how my ankle rolls so much I end up getting bruised because of it, and I hate them for I feel like I am about to fall and if I did I fear that I would break something. Out of all the years I have been falling only once (I think maybe a fall caused it) did I break a bone.

Regardless of how those surgeries turned out I think and believe they did help me to be still walking on my own after so many years passing. I may use forearm crutches at times (and starting to use them more and more) but I am still on my feet and not looking at using a wheelchair as a permanent part of my life anytime soon. I am glad that I went ahead with the surgeries regardless of all that happened, including something unrelated. I laugh at it now but after I got home after my first surgery, I got a call from my doctor's office and city health department and the hospital all concerned about me for one of the doctors who was actually cutting on me turned out to have the measles. Apparently he broke out two days after the operation and was quite contagious when he was helping in the surgery. I didn't need to worry for I had the antibodies to fight the measles, but really how funny is it to be worried about measles because a doctor didn't have them as a child and was now fighting them.

Thank you so much for taking the time to read this and I hope that you will come back to hear more of my story.