Hello/Headaches

[Guest guest]

Hello everyone,

I have been a member in this group for a long, long time. I don't think I

have ever introduced myself....and up until a few days ago, I haven't even

gotten the messages sent to me. I was diagnosed with CMT approximately 15

years ago. The diagnosis came about after I was involved in a rear end auto

accident...I was rear ended...by a drunk driver. (who claims he never saw

me)

But...anyway...I was taking very long to heal so the dr.'s decided to

do some nerve conduction tests on me. Thus, discussing my family history

and the results of the test, I was diagnosed. A year or so after that...my

son had the bloodwork done also and was positive. I know I should know this

off hand...but I don't...I think we are CMT1A.

I have had several surgeries ...and again...not sure what they all did to my

right ankle...(move tendons around...fix my arch, and something with the heel

cord). Was in a cast for at least 3 months and not able to put any weight on my

foot. It sucked!

Then after that....I had hammertoe surgery on my same foot....that was

because I was tripping over my own toes...especially my big toe which now has a

pin in it. That surgery was a piece of cake and actually was pretty cool cause

the pins were sticking out of my toes while I was healing...lol

It has helped me...but the toe next to my big one is still pretty bad...the dr.

said he couldn't straighten it any more then he did...without causing damage to

it.

Phewwwwwwwww....and then....after that I had a total knee

replacement on the right knee....cause my leg was always a bit crooked...by

doing that it has straightened out. If I wouldn't have had it done, they told

me my ankle surgery would have been for nothing. The TKR wasn't as bad as

everyone made it out to be....my only advise to someone getting one....do your

exercises! That really helps.

I have gone to therapy several times for the CMT. I myself considerate it

useless. I do some movement at home..

..there isn't that much they can do for me at therapy. My balance is

terrible....I really have to be careful when I walk. I'm suppose to use a

cane...but prefer my husband's arm. I cannot go up steps....only if I pull

myself up with a railing. I have a scooter I use if I am out shopping or need

to walk for long distances.

I have really beaten myself up over the fact that my son also has CMT...but I

think I finally am letting go of that. My son has some foot deformity and

cannot be on his feet for too long. He

is 23 and has not had any surgeries. Oh and I'm 54. I guess I've

rambled on long enough.....see what happens when I sit back for so long and

finally decide to open up???? lol

One thing before I do close is this....lately I have been having some bad

headaches....only on the left side...weird headaches....that my scalp hurts to

touch it...actually I don't know whether to say it's a headache or not. Also

pain in my temple. It hurts to lay on that side of my head...and sometimes my

left ear even hurts when I lay on it. Any ideas anyone? Would CMT create any

symptoms like this? Any ideas would be greatly appreciated.

Thank you...and thank you for listening to me preach from this soap box....I

will now step off....lol

Hugs,

Sherry

[Guest guest]

Hi Sherry,

You didn't say * when * these headaches occur. Are they present in the morning

when you first wake up? If so, yes, this is CMT related and you should ask your

neurologist about sleep apnea.

Gretchen

[Guest guest]

Hi Gretchen,

Sometimes I get like a shooting pain in the left side of my head...that hasn

t happened lately. And I have this ache all the time almost. My scalp is

sensitive to touch...so is the left temple. It's like a constant ache..

with more pain at times. Yes, I have already been diagnosed with sleep

apnea...but the Dr.'s haven't said they feel this type of headache is

related.

Hugs,

Sherry