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.
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| 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.
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