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Questions for Carole, CPeds, & others

Posted by Sharon W on 6/18/03 at 11:52 (122239)

My sister in law has Charcot-Marie-Tooth disease, which she developed early in life and it has caused her feet to develop very high arches. (She also has a minor problem with hammertoes.) Can anyone recommend shoes that might work well for her?

Sharon
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Re: Questions for Carole, CPeds, & others

Carole C in NOLA on 6/18/03 at 20:05 (122293)

Sharon, since her very high arches are caused by a pathology, and she also has hammertoes, I think she should have her doctor recommend an experienced professional to fit shoes for her. She might even need custom shoes. It doesn't sound like off the shelf shoes would be adequate!

Carole C

Re: Questions for Carole, CPeds, & others

Sharon W on 6/19/03 at 15:22 (122367)

Thanks, Carole. But she won't go to doctors. CMT disease is incurable, and there currently is no treatment for it -- so she says, 'What's the point?'

Sharon
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Re: Questions for Carole, CPeds, & others

Ed Davis, DPM on 6/19/03 at 20:16 (122401)

Sharon:

The disease process itself which is peroneal nerve atrophy is not curable but the effects are treatable. It is a genetic desease, autosomal recessive, and there are geographic 'nests' of it throughout the country.
A 'nest' exists in central West Virginia. Chris Ashton Curtis, DPM practices in Elkins, WV. He graduated from my school one year ahead of me, is from Elkins and basically dedicated himself to the treatment of CMT.

Many CMT sufferers are helped by extra depth shoes with orthotics; some may need an AFO if they are developing dropfoot or a contracted achilles.
Surgical treatment may involve lenghtening the heel cord, possibly with a Hibbs suspension which involves detaching the tendons that are pulling the toes into hammertoes and placing those tendons into the center of the foot where they can resist fromation of a dropfoot. Occasionally it is necessary to take those tendons of muscles not affected by the peroneal nerve and transplanting them to augment the weak muscles.
Ed

Re: Questions for Carole, CPeds, & others

Sharon W on 6/19/03 at 21:16 (122405)

Dr. Ed,

What is an AFO?

Sharon
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Re: Questions for Carole, CPeds, & others

Ed Davis, DPM on 6/19/03 at 22:57 (122410)

AFO = Ankle Foot Orthotic
An orthotic that includes the foot and ankle.
Ed

Re: Thanks, Dr. Ed

Sharon W on 6/20/03 at 08:25 (122422)

:)

Re: Questions for Carole, CPeds, & others

BGCPed on 6/23/03 at 13:46 (122700)

New Balance 879 running shoe is very good for that foot. It comes in wide width, has mesh over toes and has higher heel to help with the equinus. What city is she in and does she travel? The proper orthotic for that foot type can work very well, unfortunatly too many people dont know how to make it the right way

Re: Questions for Carole, CPeds, & others

Sharon W on 6/23/03 at 14:41 (122711)

Thanks, BG, I'll pass that info on to her!

She lives near Phoenix and is a secretary/programmer, so it would be good if there were some kind of business shoes she could get by with... It is especially hard for her to find shoes because she wears some kind of foot droop brace that fits behind her heel, apparently to keep the foot at 90 degrees (I don't know if that's an AFO or not; I didn't even get a close enough look to know if it included a foot orthotic, but I don't THINK it did).

Anyway, I would imagine that makes it even HARDER to find shoes that will work for her.

Sharon
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Re: Questions for Carole, CPeds, & others

BGCPed on 6/23/03 at 15:29 (122723)

Work shoes will be very hard to find, kind of the best of the worst type thing. That probably is an afo she has. I see many of those that have a very high arch and are posted wrong. They almost hold the foot in a supinated position. Need to do a Coleman Block test to see if the foot balances out. If it does and the afo is holding her in that same bad position with a high arch or varus posting that is the wrong approach imho.

Dr Ed is correct, there is no cure but you can help the symptoms as well as possible deterioration of knee,hip or back down the road

Re: Thanks again, BG

Sharon W on 6/23/03 at 20:14 (122764)

I don't think she will take seriously anything that involves going to a doctor, but I'll pass on the info.

Sharon
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Re: Thanks again, BG

BGCPed on 6/24/03 at 06:50 (122783)

OK, Coleman block test is very simple, and often never done. It is a piece of wood or very thick magazine. you stand on it and let only your first metatarsal or big toe hang off the edge like it is touching the floor.

If the foot squares up i.e. it tips inward or gets into a better position then the foot is mobile enough and correctible with posting. Dr Coleman developed this simple test over 20 years ago but it still gets ignored. It takes 20 seconds and costs nothing to perform. I think all PT, DPM, MD, DO, CO and any others that deal with feet should do it.

p.s. if the hindfoot doesnt correct when on it then there is usually a bony blockage limiting the motion. If you try to post that type of foot with valgus correction you will kill them

Re: Thanks again, BG

Sharon W on 6/24/03 at 11:07 (122806)

Thanks, BG. I'll explain that to her, and suggest she see a pedorthist. (She might find that idea more palatable, than going to another doctor...) I know she did have surgery on her foot once, to correct some 'problems with the bones,' but I'm afraid that's all I know about it -- it was 15 years ago and I don't think the CMT had been diagnosed yet, at that point.

Sharon
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Re: BG, PS:

Sharon W on 6/24/03 at 11:08 (122807)

Do you by any chance know of a good C.Ped in the Phoenix area??

Sharon
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Re: BG, PS:

BGCPed on 6/24/03 at 12:06 (122810)

Not off the top of my head. The problem is most will scratch their head when asked about a Coleman Block. If I had time I would do a search to see if there is anything writen that is floating out on the web. I cant say for sure why it is so unknown but it has been out there for years.

It is not the only thing needed but it is a very simple test to see if the current or future orthosis needs to be changed and what type of control/correction she will tolerate.

Re: BG, PS:

BGCPed on 6/24/03 at 12:07 (122811)

well this may help, didnt think it would be that easy http://www.ortho-u.net/ooa1/14.htm

Re: BG, PS:

BGCPed on 6/24/03 at 13:20 (122823)

http://www.ortho-u.net/o16/94.htm another good link

Re: BG, PS:last one

BGCPed on 6/24/03 at 13:33 (122825)

http://www.ortho-u.net/t5/113.htm

Re: For BGCPed

Sharon W on 6/25/03 at 13:26 (122913)

:D