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CarolR

CPS, Spasticity, Botox, and Flip-Flops

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So, to tie these odds and ends together, I have mild to moderate CPS on the left side. For the past two years I have been complaining to anyone who would listen about the pain and spasticity in my left foot. It would spasm painfully for something as simple as putting my foot into a shoe or sock, or stepping into a car left foot first. I would have to tear off my shoe and manipulate the toes back into place. Use of my hands could even cause a spasm in the foot, especially when I was trying to coerce my reluctant left hand into action. I was referred to the "foot clinic" at the pain center, had an x-ray, PT, more PT, baclofen, and then tizanidine, either muscle relaxant putting me into a deep fog. I was recently referred back to the pain clinic and went ahead with Botox injections into the foot. About a month later now, I can declare that to be a qualified success. The foot seems to have better ROM and the most painful spasms have stopped. The remaining spasms are manageable; if they become too insistent, an occasional Xanax can help. The pain clinic doctor told me that I would likely lose the ability for the toes to "claw" but that hasn't happened so far.

 

I have always loved flip-flops and would wear them year-round if I didn't live in a place where it is still snowing in April. I have now found some that work for my wonky feet, and actually feel better than most "sensible" shoes. They are made by Spenco, the medical product company, they have great arch support and - the best part - they have a built-in metatarsal pad. My favorites have a cork liner. They come in a variety of colors and patterns and can be ordered directly from Spenco or from Zappos or other on-line places. They are not cheap, though. Disclaimer: I have no affiliation whatsoever with the company; I just like their products.

 

Further disclaimer: This is what worked for me and I thought it might help someone else. I realize that my experiences may not transfer to others. 

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Hi Carol I'm going through the botox for toe clawing thing at the moment too.  Did they inject your short toe flexors or long toe flexors or both?  short toes is done through the sole of the foot and hurts like hell, you'll know if you had those done. long toe floxors is done just above the ankle.  First round I had just the short toes, which helped a lot but didn't quite get it. Second round I had both  and that got the toes fully relaxed but also made my foot drop really bad.  So after that it was back to the surgeon and he surgically lengthened the long toe flexors just a little and while that was healing I had more botox in the short toes to make sure that the surgery had a chance to do it's thing. The combination almost worked. I did a lot of exercises and had specialised physio sessions just for the foot and toes. But when the botox wore off I still had some residual pattern dystonia so they decided to do the short toes again. Then just as that was starting to reach full activation I got sick and haven't been able/allowed to exercise much so didn't get much benefit from that round. I'm still doing my stretches and working on consciously extending/lifting my toes while walking. But they won't repeat treatment until I'm fully over the liver issue and can make the most of the treatment period.

 

I'd be careful about wearing flip flops while you are trying to teach toes not to curl. Walking in loose shoes needs you to "hang on" with the toes as you lift which is contrary to what you are trying to teach the toes to do.

 

Best of luck with it!

-Heather

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On 4/10/2018 at 7:58 PM, heathber said:

Hi Carol I'm going through the botox for toe clawing thing at the moment too.  Did they inject your short toe flexors or long toe flexors or both?  short toes is done through the sole of the foot and hurts like hell, you'll know if you had those done. long toe floxors is done just above the ankle.  First round I had just the short toes, which helped a lot but didn't quite get it. Second round I had both  and that got the toes fully relaxed but also made my foot drop really bad.  So after that it was back to the surgeon and he surgically lengthened the long toe flexors just a little and while that was healing I had more botox in the short toes to make sure that the surgery had a chance to do it's thing. The combination almost worked. I did a lot of exercises and had specialised physio sessions just for the foot and toes. But when the botox wore off I still had some residual pattern dystonia so they decided to do the short toes again. Then just as that was starting to reach full activation I got sick and haven't been able/allowed to exercise much so didn't get much benefit from that round. I'm still doing my stretches and working on consciously extending/lifting my toes while walking. But they won't repeat treatment until I'm fully over the liver issue and can make the most of the treatment period.

 

I'd be careful about wearing flip flops while you are trying to teach toes not to curl. Walking in loose shoes needs you to "hang on" with the toes as you lift which is contrary to what you are trying to teach the toes to do.

 

Best of luck with it!

-Heather

Hi Heather, Thanks for your response. This is a copy of what the injections were, so it looks like both were done. One injection was through the bottom of the foot, and it did hurt like hell.

 

left extensor hallucis: 20 units
Left flexor hallucis: 20 units
Left Flexor digitorum: 40 units
 
I am interested in your experience as all are different and I am just beginning the botox process. It seems encouraging, if not a perfect solution. I get what you mean about flip flops, but these are really orthotic sandals; since I can't manage conventional ones, I was delighted to find these. But now it is making me wonder. I wasn't given specific exercises either, so I will need to look into that. Thanks again.
 
Best wishes as you recover from your latest setback. 

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Interesting they have done both extensors and flexors for your big toe that's going to reduce control of both the curl and the counter movement. I assume that's about your overall cramp, but I'd be asking them why.  Exercises and stretches are the key to getting the most out of botox, generally when a muscle has been spastic for a while it gets shorter and loses the ability to move voluntarily, also the opposing muscle gets over stretched and loses tone, so there's nothing really stopping the movement you don't want.  So post botox exercises are generally around increasing your access to and the strength of the opposing muscle as well as stretching the treated muscle so that when the botox wears off ( it only lasts a couple of months) you have some long term improvement. 

 

Here the spacticity clinic wont do botox without an accompanying physiotherapy plan and measurable goals agreed with you before treatment.

 

I do prefer to wear sandals while botox is active in my toes, It's easier for me to monitor what my toes are doing and means I don't get calluses on the top of my toes.

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