Thursday, November 1, 2012

Mysteries of Stroke

I still have so many questions about the way my body works, post-stroke. Some are general, like why does cold make spasticity worse? Other are more specific to me, like what's the deal with my toes?

A lot of survivors have problems with toes curling under, making walking painful and making it easy to trip (see posts from Home After a Stroke, Up Stroke, Dean's Stroke Musings). In contrast, when I walk, my toes on my affected (right) side barely make contact with the floor (other than the big toe). My toes go up, as if I am trying avoid getting a splinter. 

Yet I do have a lot of spasticity everywhere, including in my feet. In some positions--often when I'm sitting up and putting on my socks, for instance--my toes often get all scrunched up, as you see in the photo on the right. (My unaffected side looks, well, normal and flat.)

I'm thankful that the position of my toes is not painful. It's also not causing me to trip. But I'm almost certain that it's affecting my gait for the worse.

When I ask different doctors some of these questions, I often get a shrug, literally or figuratively. Physical therapists are much better at answering these questions, but even PTs have been stumped about the toe issue.

But I still need answers to get better. Who will answer these questions?


  1. Wow Grace, you're obviously special, the stroke research gods should descend on you and answer all your questions. Dean

  2. Grace, Bob's toes do the same darn thing, but it's his unaffected (left) foot! No doctor has been able to explain this either... yes, a mystery.

  3. Agreed, the questions never end...and the answers are so elusive. I have consulted with countless doctors and rarely gleened insight. My foot is not right either...and I have no idea how to fix it. My shoe falls off constantly unless it's strapped/tied on. I hope u get the answers ur looking for.

  4. My big toe spasms upward, too. I'm sorry to hear you're having these problems, but it's nice not to be alone.

  5. I agree, I too am having post stroke issues with my right foot, It is harder to curl my toes under on purpose and when I am walking I do get the toes curl upright like I am avoiding getting a splinter. No one can answer my questions either. My main complaint is that it freakin hurts to wear shoes on the right side, my toes feel very cramped and they are all awkward in socks, ugh crampy.

  6. found this article,

  7. I have curling toes on my left foot after vasospasm during surgery for a ruptured aneurysm. I have always had an extremely high instep - I was wondering if this may have exacerbated my problem. Are high insteps common for those of you who have curling toes after stroke?

    1. I do have high arches. My arch on my right foot (affected foot)seems to be lower now, compared to my left arch--I'm guessing that many of the muscles that *aren't* spastic are atrophied. Who knows.

  8. I had an AVM in 2001 along with a couple of strokes and seizures. I can't walk without socks and shoes because my feet curl. I can't step out of the bathtub without my feet curling. They say that TENS machines work for this but I haven't worked up enough courage to try it because I'm afraid of the disappointment.

  9. I had an ischemic stroke in feb. 2017. 4 months later i develop the same toe curl in my left foot. It gradually got worse to the point that walking on it became painful at my toes. Doctors pretty much agreed with me that they were curling. I was perscribed baclofen and it has made the condition more manageable. The spasams continuously happen but its all more tolerable.

    I get nite cramps every once in a while in the calf of my affected side. My question is, can i expect it to stay the same? Will it get worse? I'm 7 months post stroke. I understand that every case is different. Just looking for some insight from others experiencing the same conditions.