Spasticity reduction in dystonia and stroke

So, here's the deal. I'm a member of the FB young stroke survivors group.  If you are not, I'd suggest you join. These folks do not pull punches and most are robustly and actively  engaged in their recovery. (Many have the same posture as Dean of Deans' stroke musings. (Put his blog in your faves. Now.)  The group as a whole reminds me very much of many spinal cord injured people who I've worked with; no BS, been there done that, laid bare.

I'm also a member of the "Neuronauts" group on FB. This group has a pathology that causes a spastic pull on muscles called dystonia. The muscles that are affected can be pretty much anywhere and can jam body parts into themselves and into other body parts. I'm not generally Mr. Empathetic, but the Neuronauts will break your heart. Shocked, sad helpless is the way their stories sometimes make me feel. Stories of living with a complete and painful betrayal of their bodies. Short term excruciating pain and long term injuries often result. 

Dystonia is caused by injury to the basal ganglia (which can be caused by stroke). The basal ganglia is a "gang" of structures deep in the brain. "The basal ganglia... monitors the speed of movement and controls unwanted movements"

Examples of dystonia

    
Spasticity

Spasticity is uncontrolled reflexes. Reflexes exists in all of us all the time. But you usually never see them. They are only "unloaded" when there's an emergency. Like, when you burn yourself and you hand ends up by your ear and you wonder how it got there. Or when you step on a sharp stone walking barefoot and your hip and knee quickly bends. Or when you lose your balance and your arms fly around wildly without your consent in an effort to keep you on your feet. These are all emergency situations. There is simply no time to consult the brain. The reflexive impulse goes from receptors on periphery of the body, to the spinal cord (where reflexes reside) and back. Its about speed because its an emergency.

If there is no emergency the brain dampens the reflexes down. But if there is a brain injury the dampening stops and the reflexes are unloaded. This unloading causes muscles to fire even though there's no emergency. This constant firing of the muscles is spasticity.

There are many treatments for spasticity. Most of them fall into 3 catigories: 

1. Don't work. 
2. Work but are a band-aid (work until you take them away). 
3. Work and are permanent.

Examples of #1 above are splinting and hot packs. Examples of #2 above are drugs and stretching. An example of the 3rd category: Dorsal root rhizotomy.

Dorsal root rhizotomy (DRR)
A Dorsal root rhizotomy (aka selective dorsal rhizotomy, aka DRR) is a delicate surgery where some of the little hair-like "rootlets" that go into the spinal cord are surgically cut. (GRAPHIC: Selective Dorsal Rhizotomy...starts @ 2 min in).

And I don't want to white wash it...it is a surgery. But it is a very small incision and recovery is quick. The reduction of spasticity after DRR is permanent. For the life of me, I don't know why it is not more often used. I've seen sores the size of steaks- life threatening sores- created by spastic limbs crushing the skin.The DRR would elevate this. It also reduces pain in the area. It is done very selectively. The neurosurgen will test ever nerve rootlet to see what it does before cutting. In this way, the amount of spasticity is gradated. If more spasticity is helpful (some people use their "tone" to help them function) it is left.

Does it work for dystonia and the spasticity that results? Yes. (Less medical explanation here). Will insurance pay for it? Sometimes. Does it work for spasticity post stroke? Yes, but it can be tricky in the legs.

Two Roads Diverged...

There are two ways to go after stroke: 
1. Compensation (technically: The compensatory approach)
2. Recovery (technically: The restorative approach)

Compensation involves getting on with your life by any means necessary. If your right hand doesn't work, you do everything with your left hand. If you can't walk because your foot drops, you put on an AFO. If you have trouble speaking, there's an app  for that.

Recovery involves using the intact part of the brain to take over for the "stroked" part of the brain.

It would be nice to say that the focus of clinical rehabilitation is on recovery. But for the most part, managed care only pays for compensation. Insurance companies want to get the survivor safe, functional, and out the door. Why do they want the survivor safe? Because an unsafe survivor will cost them more money down the road (think falls). Why do they want the survivor out the door? Because every day in any clinical setting costs a ton of money. But while survivors also want to be safe, and out the door, is it in their best interest to be "functional"?

On the face of it, sure, survivors want to be able to function. "Function" is a catchall word that means "getting on with your life." And it's seductive. Everyone wants to be functional. Everyone wants to be independent, and able to function.

But there is a problem with function. And it's not just a generalized idea that if you "focus on function" you'll ignore recovery. It's a very specific concept based in neuroscience.

It would make sense that if you focus on learning compensation, you would spend less time on recovery. And this would mean that you would become better at compensation, but less recovered. But it's more than just a time issue. It's a brain issue.

It turns out that something special happens to the brain after stroke. The brain is in an almost "infantile state" after stroke (in fact, after any brain injury). And "infantile state" is a good thing. The brain, through a release of special proteins is "primed" for learning— like an infant's brain. But what will it learn?

Well, it could learn to compensate. If you are right-handed and you have limited use of your right hand after stroke, the brain could learn to compensate. Your left hand would be doing a whole bunch of things never did before. The left hand is now handwriting, attempting to tie shoes, brushing the hair and teeth, and dressing. And it's doing it all alone — no right hand to help. So during this period in which the brain is "primed" for learning, the left hand does all the learning.

But if the focus is not compensation, but recovery, there will be more recovery. The brain is "primed" for learning, and it learns to recover.

Use what you love to recover what you love

I've said this before, but it bears repeating:

Recover so you can do what you love and use what you love to recover.

This is the hidden secret of recovery. It’s hidden because it has nothing to do with rehab or rehab science or physiatry or even neurology. It has to do with neuroscience; the neuroscience of the human brain

Here's the rule: Your brain will rewire (not just for stroke but for anything you learn) if you care about what you are rewiring for. Rewiring= learning. In neuroscience learning = "Changing the structure and/or function of neurons"= "brain rewiring."

But unless you care about what you learning you won't learn it.

Take math. How many adults have used an algebraic equation in the last year? Probably about 2%. And 95% of that 2% used algebra because they had to take an algebra course to graduate. Don't get me wrong, math is important. But the math most of us see as important can be done on a dollar stroke calculator. But algebra? You never really learned it because it has no importance to your everyday life. Now consider something like texting or using a new cell phone. We learn it in a matter of days because it’s important.

The same is true for stroke recovery. Many of the "ADLs"  (activities of daily living) that are used to rehab people after stroke are dry and boring. Things like dressing, grooming, bathing etc. are all necessary, but they're not very interesting to the brain.

Here's my suggestion: as much as possible, focus on things that you really care about. If it's important to you it will be important to your brain. The more pertinent is to you, the more brain rewiring can flower.

The following video is a good example of this. It's unusual example because the guy uses what he loves to "stay in the game," not rehab in the traditional sense. Have a look at the video. His right arm is still not working. But his love of music is.

The telling shot is approximately 50 seconds in. That, my friends, is "dense hemiparesis."

 Click the photo for the full story⇩⇩⇩⇩

This entry is dedicated to Mike Chambers 

Thanks for Todd Jasko for the idea!

Neuroaid: Scam

So. It turns out that in the largest clinical trial ever of the drug, neuroaid was  "statistically no better than placebo in improving outcomes." Who'da thunk? Oh yeah, we did!

So how do you think neuroaide spun it? Like punks, natch. "Researchers found NeuroAiD, a stroke treatment based on Traditional Chinese Medicine, increases the odds of achieving a better functional outcome." "We are totally full of crap," they did not add.

Predicting hand recovery by infarct size -- not.

Interesting work here by my colleague Stephen J. Page.

It seems like in "no-brainer." The more brain destroyed by the stroke, the greater the disability. Right? Except that when it comes to arm and hand movement, that may not be true.

"Historically, lesion size been thought to influence recovery, but we didn't find that to be the case when looking at regaining arm and hand movement," Steve put it.

There is no way to stare at your brain scan and A.) know what the deficit is gonna be B.) know how profound any deficit will be C.) predict recovery. 


(Find the published article here)

One other note: I've always disliked the term "massive stroke." Most doctors, and therefore survivors, claim that any stroke is a massive stroke. I've heard the claim that the word massive means "likely fatal." But if that is true then it has nothing to do with the mass (size) of the infarct. Thus, the word massive is meaningless. It is a superlative to add when the word "stroke" is somehow not enough.