CMT1A My Foot Injury, My Son's post Encephalitis and Family Members With It

[Guest guest]

Hello! This is my first post, so please bear with me. I have a

right foot injury from 5th grade. I'm now 31 and it's time to

prepare for surgery. I have tried foot orthotics, bracing, nothing

helps. In 5th grade, I lived in Georgia on an Army post. I was

racing my bike against my sister. I had a heatstroke and found that

the pedal of my bike had hit the sidewalk which was about 6 inches or

more high. Next thing I know, I was in the air and landed. My

sister said my foot got caught in the bike spokes of the front tire,

hitting against the sidewalk and pavement at an angle. Wearing no

helmet, on top of it, I smacked my head and had a large gooseegg the

size of an orange that was oozing blood. I was taken to the

hospital. The foot wasn't broken, but It would heal with time. I

had a large wound on the ankle. I am scared to death and will not

encourage my 12 and 10 year old children to bikeride since they were

both diagnosed with CMT. Now my right foot is so sore all the time.

I had to get a wheelchair after my boss had me standing for 5 1/2

hours, disobeying a disability paper, doing a one time photo shoot at

work. My disability paper says clearly that I have to alternate

sitting and standing on a regular basis. I have since, changed

jobs. That happened this summer. The

front portion of the foot leans inward at a near 25 degree angle, the

ankle is permanently popped out and I walk on the ankle, putting

severe preasure on my bone at the base of the foot. My orthopedic

surgeon and Neurologist think that I should have the ankle fusion,

bone breakage throughout the foot and the achilles tendon split and

wrapped around the foot. They are a little hesitant though since I

am 31 now and are networking the insurance to send me on to a

specialist. My son, age 12, but at age 3, had viral Encephalitis and

we wondered what was underneath, to do with the muscle tone. It took

him nearly a year to fully walk again without help. My sister was in

a car accident and got hit from behind. Her hands were on the

steering wheel a certain way and her wrists snapped. They did carpal

tunnel surgeries and then realized that she had CMT. They put her on

disability. She told me about the symptoms, but had told me it was

life threatening. I immediately got the blood test for 1A from

Athena Diagnostics. Yes I had it. I followed by getting a test for

each of my children and they have it. It totally explains the muscle

tone and sensory integration with my son, age 12. My daughter is

very mild and has had no injuries or illnesses so far. Since all of

this, I have passed the word throughout my family. A cousin had a

broken foot from playing basketball, then found CMT. My Uncle just

got diagnosed. He plays just like my daughter, mild symptoms, high

arches but he can jump around and play sports better than I can and

he immediately wants disability. He has no injuries. I am too young

and mobile with my hands to go on disability yet. That unravels part

of the mystery, my aunt (mother of the broken foot), my uncle, my

mother, my sister and I have it. I have one more sister who shows no

sign of the disease. I know this is lengthy for my first post, but I

had to try to give you all a full idea as to what I deal with. I

have been to therapy after therapy for my son's post encephalitis and

CMT at Walter , Ft. Bliss, TX, Ft. Bragg, NC, Ft. Huachuca, AZ,

Pittsburgh, PA and town, WV. My husband has since gotten out

of the Army. My father was formerly in and retired. I have moved 28

different times and now reside in a small town in WV, working at a

ski resort, the only jobs available pretty much in the area are

there. The coldness surely gets to me, but I pop a Neurontin and go

on. Any of you who have had the ankle fusion, foot breakage and

achilles tendon done, please let me know. Thanks for giving me an

area to let this out.

Ava