Adventures in Spasticity, Botox, and Myofascial Release (Part 1)

If I had to come up with one word to describe me it would probably be driven. Some people would call it stubborn, but I prefer driven because stubborn has negative connotations, and I believe in sending positive vibes out to the universe.

NEUROREHAB Blog - myofascial photo1.jpg

Driven has made me try and try and try again to get my troublesome ankle stronger and more flexible. I have a little MS related foot drop and a lot of MS related calf spasticity, so I stretch it for a loooong time (Every. Single. Day. For years.) I hook up electrodes and zap my dorsiflexors for upwards of an hour or two to make them stronger. (Every. Single. Day.)  I do ankle range of motion and strengthening exercise (Every. Damn. Day.) I’ve got a sandbox in the downstairs bathroom so I can do ankle eversion/inversion exercises and strengthen my toe flexors and extensors (a brilliant invention, if I do say so myself). I’ve been to neuromuscular specialists and neurologists, foot doctors and ankle doctors, acupuncturists and physical therapists. I’ve tried changing what I eat and drink and don’t eat and don’t drink. I’ve had acupuncture and dry needling. I’ve had my calf muscles partially paralyzed with botox and taken spinal muscle relaxers (three types, at different doses). I’ve worn stretch casts. I’ve slept with dorsiflexion splints. I have tried almost every type of shoe and orthotic on the market. I have had a neuroma debridement and three rounds of platelet rich plasma therapy for posterior tibialis tendonitis.  I have had hydroneurolisis for peroneal nerve entrapment. I can’t remember when my foot or ankle didn’t hurt. I’ve figured out myriad other things that are wrong with them:

-       An extra bone that’s in the way of a tendon

-       Ankle contracture at my tibiotalar joint

-       Gastrocnemius spasticity, especially in the lateral compartment

-       Knee hyperextension/gait issues

-       Plantar fasciitis

-       Overdeveloped peroneal muscles

-       Ankle eversion and pronation

-       Morton’s toe impacting proper foot mechanics

-       Hypersensitivity/neuropathy in my foot that makes compression of my foot painful and stretch casting excruciating, resulting in poor compliance with stretch casting protocol

-       “Possible to probable” Reflex Sympathetic Dystrophy (RSV, also called Complex Regional Pain Syndrome) – a likely cause for some of the burning and swelling. (Doctor: Don’t google it. It will only scare you. Me: Googling on the way to the car.)

Anyway. I have tried everything. Except the things I haven’t tried!

I made a list (on vacation, and emailed it to myself):

  1. Adipose stem cell transplant (not FDA approved, $15K out of pocket)
  2. Embryonic stem cell transplant (requires going to Panama; also may cause cancer… Need to wait for some more research on that.)
  3. Rolfing (Tried it a long time ago, didn’t finish the 10 sessions because therapist was always booked)
  4. Medical marijuana (legal in DC – involves dealing with the Department of Health; but I could probably get it from a guy on the corner…)
  5. Botox + neuromuscular electronic stimulation (NMES) to weaken the tight areas and strengthen the weak areas at the same time
  6. Botox + NMES + stretch casting together to weaken, strengthen, and stretch
  7. Tendon lengthening surgery (could turn off spasticity entirely, except if I do have this RSV thing, surgery is a very bad idea)
  8. High dose baclofen (but low dose baclofen already makes me sleepy)
  9. Intrathecal baclofen pump (which involves spinal surgery and a pump in my abdomen; not sure how that works for Pilates.)

And there are some other really extreme things that no doctors would be unlikely to try on me (if they’re ethical, anyway). What I decided to try this summer is a combination of:

  1. Botox, but this time injecting it in locations determined by my physical therapist, not my neurologist, because let’s face it, PTs and fitness specialists know a lot more about movement than do doctors. (Remind me to write a blog post about the med student who pointed to my quad and called it my hamstring…) 
  2. Myofascial release therapy, but not Rolfing, because if the RSV diagnosis is accurate, Rolfing might be too extreme. I chose the John F. Barnes approach, which is awesome, and I will write more about it soon. The goal is to get as aligned as is humanly possible, because my left leg is twisted, my pelvis is rotated and anteriorly tilted, my right shoulder is elevated, and my body, generally effed up from head to toe.

I also call this “Mariska’s Get Weak to Get Strong Protocol.” Patent possibly pending.

I’m certain I will be talking a lot on this blog about muscle spasticity, as it is the toughest of all neurological symptoms to figure out and the number one cause of disability in multiple sclerosis. My case is especially difficult because I’m adding to the mix structural ankle problems that aren’t related to MS.

Anyway, in my driven, try to fix, try to manage, try, try, try mentality, the thing I am trying now is letting go.  Botox is hopefully going to make the muscle spasms release. What I have to accept is that it will make me weaker. Myofascial release is reorganizing everything, and I haven’t felt so loose (or weak) in a long time. I had trouble doing a roll up the other day. A roll up. I rocked at roll ups. Past tense.

I’m starting over. Not giving up. Giving in? Crying uncle? I’m admitting that all of the exercise in the world isn’t powerful enough to fight the tremendous amount of muscle tension that is literally changing joints and making them malfunction.

This summer, I’m getting weak. I’m trusting that I know enough and am driven (stubborn) enough to get strong again, but after things are lined up properly and not in a spasm and not strong in the wrong way.

Stay tuned for more about myofascial, botox, spasticity, and how stubborn I can be.   Onward!

In health,

Mariska

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