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Anyone had experience with Botox injections for spasticity?

Posted by upnort @upnort, Feb 17, 2024

I had my first injections yesterday of Botox for leg spasms. I wanted to try something other than the standard muscle relaxers that most of the time come with side affects. I also have a foot drop in my right leg. Has anyone had an experience with Botox injections (in leg) for this purpose - spasicity and/or foot drop? Although only temporary, injections - if improvement in symptoms is evident - would be repeated usually between 3-6 months. My five year journey with myelopathy - lesion on spine with unknown etiology - has taken me through the medical maze of scans, blood tests, infusions, medications, physical therapy/rehabilitation. Two years at local and state(WI) clinics and almost three years in Rochester, MN, at Mayo in neurology have yielded no definitive health care plan. My Mayo nuerologist referred me to a specialist( physical medicine and rehbilitation) at the Mayo Clinic Health System in Eau Claire, WI (closer to my home). My mobility is a major concern, going from running four miles a day five years ago, to walking, to treking poles, and now to a walker. I have had no pain, but an unrelenting (24-7) numbness from my waist down to my toes. This recent trial of botox injections offers me yet another hopeful possibility of recovering what is left of my limited mobility or at least stabilizing my current symptoms. Any insight into this botox therapy would be greatly appreciated.

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timely | @timely | Mar 19, 2024
In reply to @upnort "Thanks for the response. I'm not sure where I would find a naturopath doc in northern..." + (show)
@upnort

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.

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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.

REPLY
gently | @gently | Mar 19, 2024
In reply to @upnort "Over 4 weeks ago I had botox injections in my right leg to help with drop..." + (show)
@upnort

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?

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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.

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susaninmidwest | @susaninmidwest | Mar 19, 2024
In reply to @upnort "Over 4 weeks ago I had botox injections in my right leg to help with drop..." + (show)
@upnort

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?

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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...

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 3 10:47am
In reply to @janetcolon "Has anyone found a way to overcome spasticity. Botox doesn’t work that well" + (show)
@janetcolon

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

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Hi, @janetcolon - I wanted to check in with you and see how things are going with the spasticity you mentioned. Since botulinum toxin (Botox) didn't work well for you, did you and your doctor find something that did help?

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