Anyone had experience with Botox injections for spasticity?

Has anyone found a way to overcome spasticity. Botox doesn’t work that well

Hi there- I don’t have personal experience with Botox for spasticity, but we have considered it for my father, who had a stroke in 2022. He’s lost function in his left arm and most of it in his left leg. So far, we haven’t had to use it yet, because his condition has improved and we want to see the effects of PT (because Botox would temporarily weaken the muscles, his doctor said) but it would also be our treatment of choice if needed. We’ve seen it be very successful in reducing tension in her other patients. She’s also suggesting to consider Botox for his salivary glands because the stroke caused overactive salivary glands and any medications that address that have significant side effects.

Hopefully others will respond and you’ll be able to get more direct insights. But I wanted to reply in case it helped while you consider options. I personally get Botox regularly for hyperhidrosis—at 3-6 month intervals as you said—and it’s worked well, with zero side effects. The principle is similar; it temporarily inhibits the nerves that are overactive and causing me excessive sweating. Both my dad and I are significantly sensitive to medications, so that’s why we both considered Botox.

I feel it’s worth trying, especially if you have someone who does it and it gets covered by insurance. The risk is pretty low and it’s unlikely you’d have the level of side effects you’d have from muscle relaxants. Wishing you all the best!

Emo - thank you very much for the response and positive thoughts. I'll post a response to let people know how this new care plan shakes out.

Sure, I’d love to hear how it goes, because it’s very much something we’re considering for my dad if his spasticity doesn’t improve after PT. Good luck!

In the past I had Botox injections in my calves and feet. I got injections every 4 months yet I only benefitted from them about 6 weeks. It took 2 to 4 weeks to feel the benefits of botox then it lasted only 6 weeks, I have had a balclofen pump for the last 5 years. For me it has been a great solution. You get a constant level of muscle relaxer 24/7.

Over 4 weeks ago I had botox injections in my right leg to help with drop foot, limb weakness/numbing, balance, and spasticity. My symptoms only got worse, resulting in a recent fall when my right knee gave out. I called my Mayo Health System doc (physical medicine and rehabilitation) what "our" next option would be. He said there is nothing more he could do, and that he would refer me to the Mayo(Rochester, MN) "spasticity clinic" for further evaluation. I am presently waiting for an appointment in Rochester, MN. I have been dealing with myelopathy (of unknown origin - lesion on my spine - numbing from toes to waist, loss of balance, foot drop - I now use a walker 24/7) for almost 7 years now - for 2 years of those 7 I was (mis)diagnosed with Neuromyelitis Optica and put on an infusion of Rituxin by a local neurologist. Last year I was once again referred to Mayo (Rochester, MN) for a re-evaluation. The outcome was the same - another diagnosis of myelopathy of unknown origin - my Mayo nuero said there were no more treatment options left (treat symptoms but not the disease?) and would refer me to a physical medicine/rehabilitation M.D. at the Eau Claire (WI) Mayo Health System. It was here I had the botox injection which was to help with my overall mobility symptoms. Obviously, the injections did not help but only made my symptoms worse. Any suggestions as to what/where to go from here?

@upnort

At this point, you have gone through so much without getting to the root cause.

It would not hurt to see a naturopath doctor to go over all your supplements that you are taking, perhaps mention new ones, and be there to support you.

Thanks for the response. I'm not sure where I would find a naturopath doc in northern Wisconsin. The only supplement I am presently taking is calcium - a holdover from my radiation therapy during my prostate cancer treatment a year and half ago. Over the years, extensive blood work, dozens of scans, and several spinal taps have resulted in zero diagnosis. The botox was my new option to at least address the mobility symptoms. It appears this, too, was not meant to be.

My dad had a stroke, so this is a completely different type of root cause than the lesions you mention on your spine. I don’t know if this is applicable or not, but do you think neuro-retraining might work? This would he specific type of physical therapy involving high repetitions and other interventions meant to help retrain the parts of your brain that connect to your peripheral nervous system, which connects to your limbs—and often leads to spasticity.

This wouldn’t address whatever changes the lesions on your spine are causing…but it might facilitate new neural connections in spite of the lesions?

In the case of my dad’s stroke, it was explained to us that the spasticity in his left foot and arm are caused in part because the stroke caused left neglect—his brain is less aware of his left side. He doesn’t have strong neural connections, so those connections in his nervous system just aren’t being used. The result is the spasticity.

He hasn’t yet tried Botox because his spasticity improved with Graded Motor Imagery, specifically right/left discrimination—there’s an app where he looks at pictures of limbs and had to identify which is left and right. It helps with the neural connections and neuro-retraining.

It might help to consult a physiatrist (physical medicine and rehab) physician with experience with neurological conditions, but a PT with experience in neurological conditions would probably be able to give you more actionable suggestions.

My dad also uses the FitMi home rehab kit. It’s designed for stroke and TBI, but it might help explain better what I’m trying to explain about neuro-retraining. Their blog is also helpful.

Again…not sure if that’s totally off base or not because my dad has a different condition but I figured I’d mention it since it sounds like your getting the dreaded, “there’s nothing more we can do” response. I feel for you. I hate that response. There’s almost always something that can be done to improve function, somehow. And I say this as someone who also has a medically complex situation.

Oh, I also forgot to mention that my dad’s physiatrist explained Botox weakness the muscle (it’s a side effect, usually one that’s wanted), so it’s not just you… Sometimes Botox can make things worse, but it’s hopefully temporary because whatever nerves were inhibited should come back online but it would take some time.