Charcot-Marie-Tooth UK
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Cmt? Awaiting to see neuroligist

Awaiting major recorrection op surgery on my right foot.

3xops right 1st metatarsal dosifelxion osteotomy

Callaneal osteotomy, and 5th metatarsal jones fracture all these

Related to high arch foot.

Am 60% deaf 2 hearing aids. My hands are starting to ache and weakness.

Iv noticed very clummsy breathing probs cannot walk too far at present.

Also notived my left foot pain big toe and left side of foot.

Is it cmt its just started with foot problem a year ago going over on ankle a lot went seen othopedic surgeon he recommended after wearing foot othoics op needed.

I am 56 next month 4 days before my major op.

And male.

I

I will always have this if it is but i can learn to live with it.cannot see me going back to my main job night work walking and lifting heavy stuff.

This is very gud site keep up good work im glad i found you's.

Best of luck and health

Austin

10 Replies
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Hello to Austi ....

I am 68 years old, I've had it since birth, (unknown by me and my family) : Myself, and one sister & one brother all inherited it from my late father, he had "club-feet" + twisted arches :

We were all told as teenagers, (1960's) that we had "orthopaedic bone defects" in our feet :

I had a "Mid-Tarsal Re-ection Bone wedge) removal to both arches, with a total recovery time of one year :

Today the correct diagnostic path his to your G.P. (who may possibly never heard of C.M.T. disease) > Referal to a Neurologist >(Blood Tests @ Specialist Lab + Nerve Conduction Tests + Diagnosis of what exact type of C.M.T. and sub-type that you have) ?

Then a decision is made whether or not, orthopaedic surgery is required ? Today the surgical approach is to try to adjust/transplant (to make longer) your existing "Tight" tendons, or by

tissue transfer : Bone surgery is only considered as a final solution:

Reply

Thank you john for your answer

Which i found of useful insight.

I am scheduled to have the major ops on my right foot

As described above to re correct my high arch foot

On 31st of july coming.

Can you give insite to after op

Ie how long no weight on foot

When can start putting weight on it?

Any tips john would be of help.

Again thanks for your reply

Austin.

Reply

How long you might be non weight bearing depends on the operation and what the surgeon recommends to you for that op. I've had lots of surgery, and for the most part, half the time in plaster (for some ops was 8 weeks, for others 12) was non weight bearing.

They will give you all the necessary information about what will happen to you when you go for your pre-op assessment.

Once out of plaster it can take months to get back to any sort of normality. My last surgery was a total ankle fusion, and the surgeon said it would take 9 to 12 months to recover. He wasn't wrong.... But I was walking, tentatively, around my home within a few days.

As John said, bony surgery is a lot less common than it used to be, with much more emphasis usually being put in tendon transfers to redistribute the strength of the working muscles.

Hope this helps.

Karen

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Dear Austin,

I had two operations to fuse my left foot and replace some metatarsals with plates. The first one was not successful as I got an infection in my tibia from the nail used. I gather this was unfortunate and unusual so I hope it doesn't put you off. I had to keep my weight of the foot for two months the first time and longer the second time as the scar on my ankle would not heal up. I think I had the plaster off and replaced six times on that occasion. After that I progressed to crutches and just using my left foot to steady me for another month. It is a bore and makes life rather trying, but it does wonders for upper body strength and gives a real work out for the brain, devising ways of doing the ordinary things of life that require using hands and feet.

Best wishes,

REGreen

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Hi re

Am not worried about op i know its a big

One with 3 ops in 1. Its the recovery period after it could be up to

A year overall i cant honestly see me returning

To my present employment as it was very heavy manual work

Loads of lifting and walking about on my feet

11 hrs nights over 4 nights.

I can feel my hands starting to weaking and pain also besides my big toe on my left foot and base starting to give pain, so i beleive i have a long road ahead of me .

Im hoping to move to a ground floor modernised 1bedroom flat early next month prior to my ops end of july, which will be less worry of climbing stairs during rehab.

Anyway thanks for your input.

Cheers austin

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Hi karen thank you very much for update

Ive read into what op comprisses of

Heel readjusted left to right 2 screws inserted

Right metartsal bone wedge removed 1 screw

Inserted and last of fifth metartasl wee toe bone shortened screw

Inserted.

So quite a lot of healing to be had

Im in process of moving from second

Floor flat to ground floor flat across

The road hopefully end of month

In prep for my op late july.

So no stairs to climb after op as i live alone ill need good after care.

Anyway thanks again

Austin

Reply

Hello to Austi ....

Further to my "blog" above, most sufferer's of C.M.T. at some stage, will also encounter the "dreaded" C.M.T. hands :

This is again due to long term lack of electrical nerve signals, from your 'brain to fingers toes / feet etc, therefore these weak (slow) signals lose their (speed/velocity/strength) :

Again your extremities, the end part of a limb, such as a hand or foot, and are supplied from your brain by your 'LONGEST' nerves get damaged : This results in muscle wasting, over a long period of time :

My hand symptoms currently are >>>>

* No pain whatsoever :

* Lack of "fine finger dexterity" (can't pick up coins/ problems entering pin nos at ATM's)

* Clawing of fingers : Pain in mid-finger joints :

* Trigger finger :

* Entirely NO muscle strength whatsoever :

* No fleshy muscle present, between your thumb and forefinger : (Check your own hand) :

This purpose of this web-site is to 'SHARE' with each other our experience's, and problems, and hopefully convince sufferer's that they are not alone in the UK : To date 30,000 (circa) people are known to have C.M.T, so "you are not alone" ! Never forget that" !

The biggest frustration to all C.M.T.sufferer's is the total lack of knowledge that our Doctors, and medical professionals have of this disease : "Oh dear, you seem to have funny feet", one patients doctor was reading out her report from a neurologist, and he declared that "he had never encountered such a case before" :

Totally, and most incredibly he said to his patient, just wait a minute and I'll look up GOOGLE to see what it means ?

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Thanks john , yes my hands are feeling weaker sore . my left foot is startimg to ache big toe and outer foot. iv noticed very clumsmy knocking cups over glasses on floor etc etc feeling in my hands trying to dry myself.

In shower.

I can understand were your coming from on docs etc, my orthopedic consultant gud for recorrecting my foot wen it comes on my foot op but dont think he knew of cmt.

Anyway neuroligist next monday he will point me in right direction hopefully.

Cheers austin

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Hi all

Been to see a dr fratalia at the walton centre

This morning took details down checked

My feet hands joints says

Will send for me 4 weeks to have various tests

Done nerves mucsles blood.

So itll prob b 10 weeks in all before answers forthcoming.

By that time ill be in wheel chair house

Bound after my 3 op ony right foot for

High arch recorrection.

Goinga be a long progress blah.

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Hi all had nerve tests came back clear normal just got into boot with plaster and stitches out 4 weeks wait to seen surgeon again still sore espech on heel and my left big toe is very painful now and both sides my left foot is it going same as right foot?

If not cmt then what i want answers ill ask orthopedic surgeon wen next see

But pain still in my hands and feet with more tests and luck ill get to the bottom of this

Austi

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