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.

The problem with Botox

When it comes to spasticity reduction, Botox is the 600 pound gorilla. It is the Oracle. If Oz was the world of spasticity, Botox would be its Wizard. Allergan, the company that makes Botox dictates the conversation. Why? Cold hard cash. Allergan made significantly more than $1 billion in the third quarter of 2012 alone.
 
Keep in mind that Allergan makes other drugs besides Botox. And spasticity isnt the main reason Botox makes 'em money.  The main reason Botox makes money is because of its wrinkle reduction qualities. Bottom line: they have plenty of cash. And they use that cash to influence opinion. This is inevitable, but also unfortunate. The influence that can be bought chips away at a discussion of other possibilities.

What are the other possibilities?

Phenol blocks. In the book "Spasticity: Diagnosis and Management" phenol blocks are called: a "Dying Art" That Merits Revival.
 

Why does it merit revival? Phenol blocks do pretty much the same thing as Botox for spasticity. But it costs less. Much, much less. This is something you should discuss with your doctor. It may be true that Botox is the best option. But it may save you some money to ask about phenol blocks. How much money is saved?

For muscles in the arm/hand, this is one estimate...
Botox: $1014.84
Phenol: $7.85

Another thing about Botox. For a long time the suggestion by Allergan was that Botox should be administered, and that's it. Botox provided a "vacation" from spasticity. They are in the business of selling drugs, not in the business of reduction of spasticity in any sort of permanent way. Remember, Botox does not cure spasticity. Phenol blocks are the same. All Botox and phenol blocks do is provide a window of opportunity to to regain executive (brain) control over spastic muscles. A classic example is of somebody that cannot open their hand. Spasticity in the muscles to close the hand is so strong that they can't open the hand. Botox or a phenol block is used to weaken the muscles that close the hand. This "unmasks" the movement that was always there: Hand opening. Now the hand can open because it's not fighting the spastic muscles that are trying to close the hand. But instead of treating this as a vacation, the person works hard to get the brain re-involved in all the muscles. (Allergan has changed its tune about this with prompting by me and others. They now say: administer Botox and then get therapy.)

During the "vacation" block provide hard work can help permanently reduce spasticity. 

Otherwise, it's just a vacation.