Toe Surgery

[Guest guest]

My toes are curled under a lot even my toe nails grow in a curved shape

to my toes because I walk on the tips of my toes so much. I get calluses

just below each toe nail. With small black spots deep inside them from

the toes being walked on that way. For the longest time (before I knew I

had this disease) I thought they were plantar warts or some other

growth. And they were painful to walk on. The doctors made my orthotics

only 3/4 length so they stop at the ball of my foot. I found a wonderful

thing that has almost stopped the calluses and really slowed down the

pain I use to have when walking. I buy the Dr Scholls double thick shoe

insoles. That may not be their exact name... But the are really

cushioned. I put them in my New Balance shoes and them put my orthotic

over them. Now my toes are always on a pillowed sole. What a difference

it made for me.

Now my shoe size grew a couple of sizes to accommodate the height of the

orthotics and the double sole inserts... And, I always remove the insole

that came in the shoe when I bought it... Put in the double sole inserts

and then my orthotics.

I think I have a new package upstairs. I can check the name if that

would help. One set of insoles usually lasts me about 6 months before

some of my toenails start wearing a hole in the insole and need a new

pair.

Gail

[Guest guest]

I think that a possible relapse of the toes deformity is due to a wrong

surgical procedure rather than to the disease itself.

The surgical procedure for toes in CMT disease consists in the so-called

interventions for the big toe and Girdlestone - tendon transfer

for the

small toes.

The former one consists on the transfer of the tendons of the

extensor hallucis longus from the toe to the neck of the first metatarsal

bone, so the muscle cannot hyperextend the big toe any more. In addition,

the interphalangeal joint is fused. By this procedure, the big toe deformity

should not appear again, because the muscle causing it is no more attached

to the toe.

The Girdlestone- transfer is a procedure in which the flexor digitorum

longus (the muscle that brings the lateral toes down) is released from the

distal phalanx and split into its medial and lateral raphes which are

brought to the dorsum of the proximal phalanx: this

relieves a deforming force and provides a dynamic correction force.

I have just read an article entitled " Soft tissue surgery in

CMT disease " published on the Jurnal of bone and joint surgery, describing

the results of this type of surgery (in combination with surgery in the

hindfoot) performed in 10 patients: in none of the

10 patients (at a follow-up after 14 years) the deformities recurred in the

toes (but

in 2 did in the hindfoot).

I have not much experience with toe surgery because in Italy it is rarely

done; in the few cases I saw the muscles were already weak to produce

deformities again.

Paolo Vinci

www.aicmt.org

----- Original Message -----

From: " Rob " <north_texas_guy@...>

< >

Sent: Friday, November 01, 2002 6:50 PM

Subject: Toe Surgery

> Is anyone familiar with the " toe-straightening " surgery that is

> undergone by some CMT patients? I have extreme hammertoes and, as a

> result, an obvious lack of balance. Lately, it seems to be getting

> worse. Had anyone here had this type of surgery? I was told by a

> Doctor that a " toe-straightening " may only last a few years and may

> have to be re-done. Is that very common? I am just trying to

> evaluate my options and figure out what to expect.

>

> Any help is greatly appreciated.

>

> Thanks

>

>

>

> News Flash: Pre-Implantation for Conception of Non-CMT Offspring:

> A type of artificial insemination is being done privately in Italy to

avoid producing a CMT affected offspring.

> Simply, eggs are taken from a woman and united with a man's sperm to first

obtain complete cells (zygote). Then

> the zygote is stimulated to divide 3 times to have 8 cells from each. One

cell is removed and DNA is examined to

> search for the genetic mutation responsible for CMT in one of the parents

(who must know what mutation they have).

> Then the mini-embryos without the mutation are implanted into the woman's

uterus hoping that one will develop into

> a fetus. This method avoids the need of villocentesis at the end of the

3rd month to examine DNA and a late abortion.

> In Italy, the cost is equivalent to $6,000 U.S. dollars. We have also

heard this is being done in Great Britain's

> public hospitals, but it is unclear if this is free of charge.

Pre-implantation is also being done is Australia for

> the equivalent fee of $6,000 U.S.

>

> is Charcot Marie Tooth Universal Services - for you, your loved

ones, the medical and scientific community,

> and anyone who wants to learn how CMT/HMSN affects each of us through

experiential sharing. We're here for YOU!

>

>