Anyone have any improvement with Botox injections?

@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.

Perhaps you can get an online Zoom appointment with a naturopath doctor to go over anything that can be done for you with any vitamins or supplements or herbals.
Please consider taking vitamin D3 and K2-MK4 to take with your calcium to get the calcium to your bones.
Read up on acupuncture as a possibility too.

upnort,
a surprising number of myelopathies of unknown origin are finally diagnosed as MS. I'm not suggesting it to be your cause, but I would suggest that you continue looking for cause. Follow all the good suggestions a naturopath, google naturopath northern Wisconsin area
the spasticity clinic the physiatrist, but ask for MS testing. Have you had a brain MRI. The medications for MS are so much better now and the earlier the treatment the better. Still, I hope it's not.

So many times the doctor that says there is nothing more we can do is just wrong.

It's difficult to get the right amount of botox to stop spasticity and leave the muscle functional. And botox migrates sometimes to the wrong muscle. Luckily the effect diminishes with time.

I hope you have good luck.

I am just curious-Why did they think that a botox injection in your leg help with a problem that originates in your spine? Foot drop is usually caused by compression of one of the lumbar nerve roots in the spine by a disc herniation or foraminal stenosis and rarely it can be caused by deep gluteal syndrome/piriformis syndrome. I was offered botox for my piriformis muscle to weaken and shrink it to see if it would help with piriformis syndrome. My insurance wouldn't pay, so I didn't get it. I have sciatica and 2 failed spine surgeries and had partial foot drop decades ago. I wish you good luck...