Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 433 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:http://oc1dean.blogspot.com/2010/11/my-background-story_8.html

Monday, September 20, 2010

Stroke rehabilitation of curled toes

My experience with curled toes.

I had curled toes starting about 6 months in. This is a problem because your first AFO is probably made in the first 2 months, Thus when your toes start going spastic you can't get one made with a toe crest and metatarsal bump because the first one is not past its life span(3 years in my case, I switched HMOs so I was able to get a better one after the first of that year. You'll have to scream bloody hell to get your insurance to pay for a new one.) It made it rather difficult and painful to walk. My PT could only recommend stretching exercises. My OT suggested a new AFO with a built-in toe crest and metatarsal pad. I did try botox on the toe flexors but that didn't work. When I went to my doctor at the 9 month mark all he could suggest was snipping the tendons that controlled my toes. I didn't follow up with that but did manage to get a new AFO with builtins. At the 3 year mark I was in a research project and saw my fMRI scan. It showed that the part of the brain that controlled toe function was still alive. It was rather distressing to realize that I could have permanently lost toe flexion due to surgery because no one correlated the MRI scan to dead brain area. I was soon able to actually flex and extend my toes. I think what occurred is that signals from the toe area were routed thru the underlying white matter dead brain area and took 3 years to accomplish that rerouting, and that was with no trying to move them on my part. Wiggling my toes was the test that the doctors used in the ER to determine that I had a stroke and to test that the tPA did not work completely.
When I finally got to a computer and starting looking up curled toes I found that it was quite common and no one seemed to know what to do about it. This was my first inkling that stroke rehabilitation had no common protocols or understanding about how to treat common deficits. Every other disease has treatments for specific diagnoses. As one therapist put it, 'There is no cookie-cutter approach to stroke rehab'. I don't believe that comment.
Evidence-based rehab has yet to get to stroke rehabilitation.

12 comments:

  1. I AM SO GLAD I READ THIS POST. I AM 1 YR POST STROKE AND STARTED DEVELOPING TOE CURLING. NONE OF MY PT'S OR DR'S COULD GIVE ANY STRAIGHT ANSWERS OR RECOMMENDATIONS TO TREAT IT. NOT EVEN A VALID DIAGNOSIS. I HAVE BEEN TRYING TO DO MY OWN RESEARCH. THIS HAS BEEN ONE OF THE MOST INFORMATIVE THINGS I HAVE READ ABOUT TOE CURLING BY SOMEONE WHO HAS EXPERIENCED IT AND OFFERED SOME SORT OF HOPE FOR ME. THANK YOU AND BLESS YOU.
    T. HUGHES

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  2. Thanks, glad someone is getting helped from this.

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  3. Have just found this post(& 1st time seen this blog,thank god!) thanku so much! Am 2&half years post stroke & toes are clawing & makes walking so difficult & painful at times(& distressing). Am currently trying to give myself dayly (at best) sessions of TENS but v slow progress - have noticed so far,(after 2 weeks) my foot dosent drag so much. (have fixed AFO/splint for getting about). Have been umming &ahing about botox & really dont fancy it....Glad to read about after 3 years your brain rerouted th signals. Msg i took from that is to have more patience & faith in my healing process. I'll try not pull my hair out so much & not give so much grief to my partnr!!

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  4. If you can't get an ortotist to put a built-in toe crest and metatarsal pad, I ended up buying on the internet these items, they worked pretty well, not quite as good as an orthotist built one. I was lucky and had just rolled over to another fiscal year and got on a new HMO that didn't know that the AFO was only 1 year old - 3 years seems to be the expected longevity. But this is not a medical suggestion that can only come from your doctor. In my case I basically had to educate my doctor so he would write the prescription for the new AFO. This seems to be very common so start educating your doctor. But only if you ask your doctor for permission to educate them.

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  5. I am 18 months post stroke and I too have been having trouble with my toes scruntching up like a monkey. Today I had an appointment with a podiatrist because my right foot turns over and is very painful when it does, I thought if I could keep my foot from turning then maybe I could walk with my crutches a little better. Not only am I walking better with my crutches Im no longer scrunching my toes up. All thanks to a wedge on a inner sole, a podiatrist that listens, and a willingness to try something.

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  6. Sympathies to all who suffer this.I have had big toenail operated om ( removed) 4 times as a result of my toe curling on stroke side& I am in agony again and desperate for the answer.Maybe tendons cut is next for me

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  7. The answer is Botox! Really worked very well for me. It gives you a window of opportunity to work on your muscles without the spasticity.

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    1. Botox did not do anything for my toes.

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  8. My daughter is 9 years post and has claw toe with the foot turning. None of her doctors know what to do. Thank you all for the advice.

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  9. I too have spasms of toe curling after a stroke. I get regular botox shots in my leg which give some relief, but do not control the spasming. I have always had extremely high insteps (which I have recently been told is caused by tight foot tendons) and am wondering if this is a contributing factor. I would be interested to know if other suffers have naturally high insteps?

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  10. my mom is 15 yrs out of her stroke has had 3 afos made we have had trouble getting the orthos to get the afo out under her toes now they are so twisted she is walking on the tops of them, actually most of the time she rolls around her house on a desk chair as she does not have room to use her wheelchair. The podiatrist is wanting to snip the tendons under her toes we are wondering how painful that would be and if it would really help, she is 85 and lives alone, paralyzed on the one side. The brain investigation is interesting, how did you get the signals to co-ordinate again?

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    1. You have incompetent orthotists. If you can't get an orthotist to put a built-in toe crest and metatarsal pad, I ended up buying on the internet these items, they worked pretty well, not quite as good as an orthotist built one. Snipping the tendons should only be done as a complete last resort. Find a new orthotist and before seeing them grill them on what they will do to guarantee straightening the toes.

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