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.
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.
ReplyDeleteT. HUGHES
Thanks, glad someone is getting helped from this.
ReplyDeleteHave 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!!
ReplyDeleteIf 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.
ReplyDeleteI 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.
ReplyDeleteSympathies 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
ReplyDeleteThe answer is Botox! Really worked very well for me. It gives you a window of opportunity to work on your muscles without the spasticity.
ReplyDeleteBotox did not do anything for my toes.
DeleteMy 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.
ReplyDeleteI 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?
ReplyDeletemy 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?
ReplyDeleteYou 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.
DeleteSo how did yu get an fMRI? nobody told me I could get one. And how did they notice the part is alive before you could move the toes?
ReplyDeleteFrom the original post. At the 3 year mark I was in a research project and saw my fMRI scan. No one noticed the part that was alive. If you look at a motor homunculus you can see that the toe area is next to the corpus collusum and that seems far enough away from the rest of the damage to not be affected. My doctor knew nothing and told me nothing. Getting an fMRI scan will do you no good because your doctors and therapists do not map damaged areas to stroke rehab protocols. You are completely on your own as to figuring out how to recover.
DeleteBut you got your toes back so how? you knew it was live and you got motivated to exercise your toes ans=d then they started working?
DeleteRead the post it explains it. 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.
DeleteI have flaccid toes ankle 27 years ld and my PT expects them never to recover, but 3 years for you gives me hope.
DeleteLook I still dont have my left dominant hand or my left foot working. im past 5 months. therapists suggest I accept a hemiplegic life, they have 20 years experience and nothing has been invented yet? I cant believe it im 27 only years old.
ReplyDeleteI had an AVM in 2001 along with a couple of strokes and seizures. At one time I wasn't able to walk with my shoes and socks off because my toes would curl. They still curl but not as much. I bought a TENS machine but I haven't used it yet. Research says that there is a muscular imbalance with my toes. Just wish I knew how to fix it. I'll just keep praising the Lord. He knows the answer.
DeleteAmen to that! That's what I do. When I had my stoke in Afghanistan I was totally paralyzed on my left side. The Dr. Asked me what my goal was for my treatment at that facility. I'm gonna walk out of here. And I did! They only know what they have learned in a book. You have to keep the faith. It's not over until GOD says so. I waved at him as walked out of that facility. That was in 2013.
DeleteAlaina Broome SSG(Ret)
How is recovery going? I'm 3.5 years post stroke.
ReplyDeleteNewsham
Recovery is slow but I'm still trying TENS, don't have the money or insurance for Botox. I've also heard about some kind of EMG electrical stimulation. Don't quite know what that is but I'll look it up.
DeleteHad I stroke 7 mos ago. Was able to receive the clot buster TPA. Have been in therapy eversince my stroke. I have had right leg and rt. Arm weakness. Seems like curling toes has been a problem ever since about 3 month out. I have to be real careful especially when I first stand up. I have fallen 2 times from the curling toes. Thanks for sharing what has been helpful to others.
ReplyDeleteDean.....my toe curling just started recently (appoximately 2.5 years post stroke) I have been doing PT and walking regularly cane-aided up to 1.25 -1.5 miles around the neighborhood. The curling is relatively new for me but some days is quite painful to the point that the end of my middle toes are rubbed raw and sometimes ny toe joints ache as if the bones are being compressed down into the joints.
ReplyDeleteThe question what exactly does a toe crest and metatarsal bump look like on the AFO ? I tried to google but just found ads for under toe pads to attach before putting on socks.
Know you are busy but any help/info would be appreciated.
Thanks-
ConcreteTim
The toe crest looks like someone just glued one to the AFO. The metatarsal bump was so long ago I don't remember. Your therapist if not incompetent should know this stuff. You doctor will know nothing.
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