AFO: You can check out anytime you like, but can you ever leave?

I often get questions about ankle foot orthoses (AFOs), and how to get out of them. I'm not a big fan of AFOs because they encourage a sort of "learned nonuse." It's actually more like "learned disuse." (Learned disuse: You're not learning to not use the body part, but you learning to use body part incorrectly.) And keep in mind, every movement you make changes the way your brain is wired. So it's very easy to get used to an AFO. Let's put it this way:

It's easy to walk into an AFO. It's hard to walk out.

In any case, I get a lot of e-mails about this subject. Here's an example:
 
I wear a big brace on my right leg. I am paralyzed on the right side. I walk with a one-point cane. I walk with an open hinge (articulating) AFO.
 
They opened the hinges on my old brace several years ago. I walk around my apartment with the old one. But when I go out I use the bigger brace which isn't open at hinges.
 
I read on Deans' Stroke Musings that you recommend the Air Cast. Which one for stroke survivor do you like? They have a lot of different ones on their website.

Here's my answer:

First of all, the disclaimer:

(Warning: ENDING THE USE OF AN AFO CAN LEAD TO FALLS AND INJURIES.

Never discontinue the use of an orthotic without first consulting the appropriate health care provider. Then call your doctor. Then have your doc talk to any other providers as needed. Then discuss it some more. Thank you.)

Wear a brace on the ankle that satisfies two things:
1. Keeps you safe
2. Challenges* you

*Challenge: Walking naturally challenges you to lift your foot. If you can lift your foot up and down to stay safe (not trip) then you might consider questioning an orthotic that helps lift the foot.

Gradation would usually be something like this:
1. Rigid AFO
2. Articulating AFO (where the ankle joint moves just a little bit)
3. A stirrup (stabilizes both sides the ankle but allows the ankle to move up and down freely)
4. A high top shoe (like a basketball shoe)
5. Nothing

Often the manufacturers are the best people to ask specific questions. One of the advertisers on this blog X-STRAP (see link on the sidebar) has a variety of products. Some help bring the ankle up during gait, others support the ankle. The stirrup is usually associated with one particular company: AirCast.

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Know a good doc or therapist?

I get this all the time:

"How does one go about looking for a neurologist or physiatrist or therapist who is familiar with the practices outlined in your book?"

You'll notice a link on the right column. Or you can click here. Either way, if you live in the USA,  you'll find resources to help find aggressive healthcare providers for your recovery team.

Then  next questions is "Where do I find an OT or PT or speech therapist who knows?" You find a resource for that too.

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NEWS FLASH: There's No Way to Prepare For Life After Stroke

Surprise!

A recent study seems to sum up much of the whirlwind shock of life post stroke. I can't say it any better, so let me quote the authors:

There are 3 phases in the continuum from acute care to inpatient rehabilitation to home: 3 phases of this trajectory: 
1. the stroke crisis
2. expectations for recovery
3. the crisis of discharge
Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory. As caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing. Survivors are often underprepared to take on even the basic tasks to meet the patients' needs on discharge

Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

STROKE CAREGIVERS HANDBOOK (free)

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Bleed Vs. Block: Who Can Expect Better Recovery?

       Survivors who have a hemorrhagic (bleed) stroke average better recovery than survivors who have an ischemic (block) stroke. But bleed strokes usually have more disability to begin with. In other words, “bleeds”  start out lower but end up higher. The difference has to do with the different ways these types of stroke affect neurons:

“Block” stroke: neurons die because blood flow is blocked. No blood, no O_2.   No O_2, neurons die.
  

“Bleed” stroke: much of the damage comes from the compression on the brain by the buildup of blood in the skull. Once the compression is resolved there is less overall neuronal damage.

Bottom line: The effect of efforts towards recovery can be expected to be less for ischemic vs. hemorrhagic stroke. Rehab strategies that work well for bleed stroke will typically have less rehab potential for survivors with a block stroke.

This is one of my problems with books about survivors who've had a bleed stroke.  Some of the  books give the impression that they a) had more will, b) are smarter, c) have come up with a new and special technique. Again, on average, they start out lower but end up higher. So the recovery process is scary and arduous, but ultimately more fruitful. And it is more fruitful because there is less brain damage. 

Of course, the prime example of this fudging of the facts is Jill Bolte-Taylor's book My Stroke of Insight.  She had a bleed stroke on the left side of the brain.  Have a look at this video. Does anyone see any deficit in either the right arm/hand or in her speech?

Almost 90% of all stroke are blocks, not bleeds.

Want the science-y perspective?

"If 2 patients at the beginning of rehabilitation had the same basal neurological severity, same basal functional disability, same age, same sex, and same OAI, hemorrhagic patients showed better neurological and functional prognosis compared with ischemic ones."

And to be clear: Bleed strokes are terrible. You have a greater chance of dying from a bleed than a block. And recovery from any stroke is to be celebrated. 

But beware of inflated expectations suggestions by survivors of a bleed stroke. What they suggest may work for them but it is clear: their recovery will usually be higher given the same amount of effort.

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Stroke and Hyperbaric Oxygen Therapy

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Hyperbaric oxygen therapy (HBOT) is something that's often touted to help stroke recovery. HBOT involves the breathing of pure oxygen while in a sealed chamber. The oxygen is  pressurized at 1-1/2 to 3 times normal atmospheric pressure.

HBOT is used medically for the effective treatment of

• decompression sickness (commonly known as "the bends")
• severe carbon monoxide poisoning
• certain kinds of wounds, injuries, and skin infections
• certain infections

Does it work in stroke? Bottom line: There is insufficient evidence to recommend its use. And it does come with risks.

It may work but the ducks get in the way...

The story of HBOT for brain injury including stroke is full of clinicians, characters and quacks. One of them is William Hammesfahr, a neurologist. You might recognize the name; in the famous Terri Schiavo case Hammesfah disagreed with almost every other MD, saying that Schiavo could recover from what had been described as a "irreversible persistent vegetative state." Hammesfahr claimed that he could "cure" Schiavo to "the point of being able to communicate." Hammesfahr suggested HBOT should be part of Schiavo's treatment.

The board of medicine in Florida in 2003 accused Hammesfahr of "...performing medical treatment below the standard of care, engaging in false advertising concerning his treatment of strokes, and exploiting a patient for financial gain."

Hammesfahr also claimed to be "nominated for a Nobel Prize."  Someone had recommended him for the prize, but that someone wasn't qualified to nominate for the prize. "Qualified Nominators" are a very small and select group of previous laureates and academicians primarily from Denmark, Finland, Iceland and Norway.

Otherwise, I could nominate you, you could nominate me, and all would be peachy.

The legacy of weirdness continues when it comes to hyperbaric treatment...

The mantle for HBOT seems to have been passed from Hammesfahr to the Neubauer hyperbaric neurologic center.  (It is worthwhile looking at all the credentials. The photos are interesting as well...addendum 11.3.13, all links on that page now lead to a page that says " You have tried to access a link that does not have a page associated with it."). A great take on the clinic can be found here.  (Apparently, the director of the clinic holds no malpractice insurance. "Why?," you might ask. Read on!)

Still, it's not a question of personalities; the question is, does it work?

It may. Definitely more research needs to be done. It seems to work acutely in animal studies. In rats studies it seems as if there's a better survival rate as well as better outcomes if done within the first few days after stroke. This makes sense.  The brain is, during the first few days after stroke, trying to recover. Being hyper infused with oxygen is probably is a good thing.

And therein lies the rub. If you have a stroke survivor in the  HBOT sealed chamber during the first few days after stroke and there is an emergency you can't get to them. If you try to pull them out of the chamber immediately they get "the bends" described by Wikipedia thusly...

"Decompression sickness (DCS; also known as divers' disease, the bends or caisson disease) describes a condition arising from dissolved gases coming out of solution into bubbles inside the body on depressurization."

And bad things have been known to happen in the HBOT chambers. In at least some studies there is an increase in seizures. There've also been explosions and fires (remember this is compressed pure oxygen; highly flammable.) Here  is a case where a victim died, and another victim was critically injured in the HBOT chamber. The accident happened at the Neubauer Hyperbaric neurologic Center. 

Here is what I've gotten from my research into HBOT:

• A variety of reviews have concluded that was insufficient evidence to prove the effectiveness or ineffectiveness
• A 2005 systematic review of the evidence for HBOT in the treatment of stroke showed no benefit to the treatment
• A review of 12 randomized studies using HBOT with multiple sclerosis suggested that there is no clinically significant benefit from the administration of HBOT.

Bottom line: HBOT may work during the acute phase after stroke. However, a lot more research needs to be done and the safety issues need to be addressed before it can be recommended.

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