Chiari surgery styles and outcomes

[Guest guest]

:::A peer guide's opinion:::

To anyone wondering about the variations in surgical styles and the subsequent

range of outcomes, you might ask:

Was this patient's surgery a bony decompression, or did the neurosurgeon also

open the dura?

If s/he opened the dura, what kind of patch did s/he use? And did s/he reshape a

small portion of the brain (cerebellar tonsils) to achieve a better match?

To consider the most common options, let's use a metaphor of a foot stuck inside

a form-fitting sock inside a snug shoe.

A bony decompression is a minimalist approach that is akin to making a hole in a

shoe that is too small, leaving more room for the foot. It's simple and the

least risky of several surgical approaches.

The hole might or might not be the right size or shape, and it might or might

not match the exact area where the expansion is needed. So it might not help.

But even if it is just right, if the sock is also too small, there's no real

relief.

The second approach is like opening up the too-small shoe, then slicing open the

too-tight sock. It makes more room, but it exposes the foot, so someone has to

put a patch on the sock to make it larger and close it up with the foot inside.

Some patch materials match the sock better than others. Some socks are more

fragile and prone to tears than others. Some stitches are made more evenly than

others. So some sewing jobs turn out better than others.

The third approach goes even further, making a hole in the shoe, slicing open

the sock, and surgically changing the shape of the foot. Yikes!

The third approach is the most sophisticated and time-consuming, so it is used

most often by Chiari experts and least often by general neurosurgeons. It's

also used more often on adults, and on children with severe herniations or a

great mismatch between brain and skullbase size/shape.

After recovery: When the surgery " looks good " on an MRI, it means that the foot

fits inside the sock and shoe while the person is lying still.

When the surgery actually works in real life, as opposed to looking as if it

worked, then the foot functions - and that is because an expert accounted for

all the angles and anticipated changes that the foot goes through when the

person stands, walks, and runs.

Let's switch from the foot metaphor back to a brain inside its dural sac inside

a hard skull.

Imagine what could affect a brain to make it similar to a foot functioning

inside a sock and shoe. Aren't brains stable in size and shape? They don't

change, do they?

Yes and no. Many Chiarians have associated medical conditions, such as

hereditary disorders of connective tissue (HDCT), hydrocephalus, scoliosis,

syringomyelia, and/or tethered spinal cord.

These conditions affect Chiari and are affected by Chiari.

When interactions occur, many variables come into play that affect brain

function.

For example, a person with an HDCT, such as Ehlers-Danlos syndrome (EDS), might

have trouble healing the edges of the dural patch, and leak cerebrospinal fluid

(CSF) or get an infection.

EDS makes soft tissue pliable and/or fragile, so it can sag when gravity pulls

it.

Cerebellar slumping is an example that can occur when gravity pulls the lower

back part of the brain down and there is nothing pushing up to hold it in place.

It recreates a Chiari-like compression even though the skull piece is missing.

Another example: Someone with hydrocephalus or syringomyelia (or both) might

have severe problems with uneven CSF flow.

Since the dural sac is like a water balloon holding the brain and spinal cord

suspended in fluid, uneven CSF flow affects the whole central nervous system.

Restrictions in the fluid's delivery of nutrients and biochemicals can play

havoc with brain function.

Scoliosis is highly associated with Syringomyelia, so a person who has one one

should be evaluated for the presence of the other.

A third example: Tethered spinal cord can become more obvious and more

problematic as a person grows. It exerts a downward pull on a more and more

tightly stretched spinal cord.

Malfunction of the spinal cord interferes with nerve function, which in turn

affects the body's communication with the brain. Pulling downward on the brain

also creates compression.

A true Chiari expert sees the big picture and asks the hard questions. He or she

knows that the entire central nervous system is one complex unit, and that a

small shift in one part can affect the function of the whole.

This is why a true Chiari expert will consider Chiari management to be a

lifelong process, not a one-time fix.

In other words, if the shoe fits, wear it, but if it doesn't, then seek a true

expert.

Hope this helps.

Be well.

Sandy

[Guest guest]

Wow Sandy this is the best explaination I have heard yet. So is this something

that you yourself had done?

To: CCIparents ;

Sent: Tuesday, May 22, 2012 10:40 AM

Subject: Chiari surgery styles and outcomes

 

:::A peer guide's opinion:::

To anyone wondering about the variations in surgical styles and the subsequent

range of outcomes, you might ask:

Was this patient's surgery a bony decompression, or did the neurosurgeon also

open the dura?

If s/he opened the dura, what kind of patch did s/he use? And did s/he reshape a

small portion of the brain (cerebellar tonsils) to achieve a better match?

To consider the most common options, let's use a metaphor of a foot stuck inside

a form-fitting sock inside a snug shoe.

A bony decompression is a minimalist approach that is akin to making a hole in a

shoe that is too small, leaving more room for the foot. It's simple and the

least risky of several surgical approaches.

The hole might or might not be the right size or shape, and it might or might

not match the exact area where the expansion is needed. So it might not help.

But even if it is just right, if the sock is also too small, there's no real

relief.

The second approach is like opening up the too-small shoe, then slicing open the

too-tight sock. It makes more room, but it exposes the foot, so someone has to

put a patch on the sock to make it larger and close it up with the foot inside.

Some patch materials match the sock better than others. Some socks are more

fragile and prone to tears than others. Some stitches are made more evenly than

others. So some sewing jobs turn out better than others.

The third approach goes even further, making a hole in the shoe, slicing open

the sock, and surgically changing the shape of the foot. Yikes!

The third approach is the most sophisticated and time-consuming, so it is used

most often by Chiari experts and least often by general neurosurgeons. It's also

used more often on adults, and on children with severe herniations or a great

mismatch between brain and skullbase size/shape.

After recovery: When the surgery " looks good " on an MRI, it means that the foot

fits inside the sock and shoe while the person is lying still.

When the surgery actually works in real life, as opposed to looking as if it

worked, then the foot functions - and that is because an expert accounted for

all the angles and anticipated changes that the foot goes through when the

person stands, walks, and runs.

Let's switch from the foot metaphor back to a brain inside its dural sac inside

a hard skull.

Imagine what could affect a brain to make it similar to a foot functioning

inside a sock and shoe. Aren't brains stable in size and shape? They don't

change, do they?

Yes and no. Many Chiarians have associated medical conditions, such as

hereditary disorders of connective tissue (HDCT), hydrocephalus, scoliosis,

syringomyelia, and/or tethered spinal cord.

These conditions affect Chiari and are affected by Chiari.

When interactions occur, many variables come into play that affect brain

function.

For example, a person with an HDCT, such as Ehlers-Danlos syndrome (EDS), might

have trouble healing the edges of the dural patch, and leak cerebrospinal fluid

(CSF) or get an infection.

EDS makes soft tissue pliable and/or fragile, so it can sag when gravity pulls

it.

Cerebellar slumping is an example that can occur when gravity pulls the lower

back part of the brain down and there is nothing pushing up to hold it in place.

It recreates a Chiari-like compression even though the skull piece is missing.

Another example: Someone with hydrocephalus or syringomyelia (or both) might

have severe problems with uneven CSF flow.

Since the dural sac is like a water balloon holding the brain and spinal cord

suspended in fluid, uneven CSF flow affects the whole central nervous system.

Restrictions in the fluid's delivery of nutrients and biochemicals can play

havoc with brain function.

Scoliosis is highly associated with Syringomyelia, so a person who has one one

should be evaluated for the presence of the other.

A third example: Tethered spinal cord can become more obvious and more

problematic as a person grows. It exerts a downward pull on a more and more

tightly stretched spinal cord.

Malfunction of the spinal cord interferes with nerve function, which in turn

affects the body's communication with the brain. Pulling downward on the brain

also creates compression.

A true Chiari expert sees the big picture and asks the hard questions. He or she

knows that the entire central nervous system is one complex unit, and that a

small shift in one part can affect the function of the whole.

This is why a true Chiari expert will consider Chiari management to be a

lifelong process, not a one-time fix.

In other words, if the shoe fits, wear it, but if it doesn't, then seek a true

expert.

Hope this helps.

Be well.

Sandy

[Guest guest]

Yes, , I'm a zipperhead. :-)

Here's my story...

I have a combo case:

Chiari 1 Malformation,

a bunch of things wrong inside my neck; thoracic Syringomyelia,

tethered spinal cord,

hereditary disorder of connective tissue, and

lifelong hemiplegic migraines.

In mid-adulthood, after a dozen years of runaround-and-ridicule from HMO docs,

(who said shocking, awful things), I found my way upstream to independent,

Chiari-knowledgeable docs who were being recommended in the online support

groups.

They validated the presence of my Chiari and thoracic syrinx, but they didn't

know how to explain the unusual configuration, or understand its importance,

mainly because they had not yet learned how defective connective tissue can be

involved in altering the clinical picture for some Chiarians. So, nice guys, but

no deal.

Then I went to the pioneering experts at TCI in NY, where they did understand my

odd case, and there I finally had surgical treatment.

I think true expertise makes a huge difference!

I was impressed with TCI doctors' knowledge and experience; their kindness, and

their willingness to teach me about my conditions. They respected me and earned

my trust.

I'm certain that there are doctors in other places who are also kind and

knowledgeable. I think it was the depth of experience and willingness to

problem-solve that made these people stand out.

I never experienced any pressure to choose them or to have particular

treatments. They informed me of my options, and explained about redflag

symptoms, which would need immediate care. Otherwise, I was in control.

Six months after my consultation, I had a 7-hour Chiari decompression surgery,

followed a year later by diskectomies/fusion/plating of my lower C-spine; and a

couple of years after that, my spinal cord was detethered. All three

neurosurgeries at TCI were successful.

I am eternally grateful to everyone who helped me, from the support group peers

who told me I wasn't crazy, to the nurses who brushed my hair (it grows back

quickly, no matter how much is shaved), to the dietary specialist who made sure

there were no migraine triggers in my hospital food.

But most of all, I am grateful to my brilliant, pioneering neurosurgeons for

understanding how best to save my life.

I hope all Chiarians find their way to the special people who can truly help

them, whoever and wherever that may be.

My advice is to keep looking, ask questions, take notes (ask to record your

consultations for later review.) Above all, don't give up. When you find the

right match, you'll know.

Be well.

Sandy

[Guest guest]

I can not express the almost same life story in typed words at the moment but...

...... So many ask why TCI is recommended so highly and it because they know from

just looking at an MRI that what we're going through. I have the very same

complications and just got fused down to T4.

I spend 75% of my day " resting in bed " (yes Dr. B, I'm actually doing it)

With complicated cases come brainacts that save our lives!

With being cutting edge comes a whole host of political problems. Not that we

need any more issues to deal with when our pain level is through our heads. But

there are other doctors out their just as good and we are part of a web site to

help others!

The surgeries needed to give some quality of life back (never a cure, yet!) is

painful and some times the hardest recoveries ever. But with doctors like at

TCI we can live hopefully a quality of life to see our children smile one more

day!

So, I personally know TCI, and would recommend them to whom ever I talk to! I'm

not at a point in my life to get out of bed yet and get really involved in help

support groups and get to know the other doctors that deserve the super hero

cape!

For my super Hero is TCI!

Who are yours?

Bea

Sent from my iPhone

> Yes, , I'm a zipperhead. :-)

>

> Here's my story...

> I have a combo case:

> Chiari 1 Malformation,

> a bunch of things wrong inside my neck; thoracic Syringomyelia,

> tethered spinal cord,

> hereditary disorder of connective tissue, and

> lifelong hemiplegic migraines.

>

> In mid-adulthood, after a dozen years of runaround-and-ridicule from HMO docs,

(who said shocking, awful things), I found my way upstream to independent,

Chiari-knowledgeable docs who were being recommended in the online support

groups.

>

> They validated the presence of my Chiari and thoracic syrinx, but they didn't

know how to explain the unusual configuration, or understand its importance,

mainly because they had not yet learned how defective connective tissue can be

involved in altering the clinical picture for some Chiarians. So, nice guys, but

no deal.

>

> Then I went to the pioneering experts at TCI in NY, where they did understand

my odd case, and there I finally had surgical treatment.

>

> I think true expertise makes a huge difference!

>

> I was impressed with TCI doctors' knowledge and experience; their kindness,

and their willingness to teach me about my conditions. They respected me and

earned my trust.

>

> I'm certain that there are doctors in other places who are also kind and

knowledgeable. I think it was the depth of experience and willingness to

problem-solve that made these people stand out.

>

> I never experienced any pressure to choose them or to have particular

treatments. They informed me of my options, and explained about redflag

symptoms, which would need immediate care. Otherwise, I was in control.

>

> Six months after my consultation, I had a 7-hour Chiari decompression surgery,

followed a year later by diskectomies/fusion/plating of my lower C-spine; and a

couple of years after that, my spinal cord was detethered. All three

neurosurgeries at TCI were successful.

>

> I am eternally grateful to everyone who helped me, from the support group

peers who told me I wasn't crazy, to the nurses who brushed my hair (it grows

back quickly, no matter how much is shaved), to the dietary specialist who made

sure there were no migraine triggers in my hospital food.

>

> But most of all, I am grateful to my brilliant, pioneering neurosurgeons for

understanding how best to save my life.

>

> I hope all Chiarians find their way to the special people who can truly help

them, whoever and wherever that may be.

>

> My advice is to keep looking, ask questions, take notes (ask to record your

consultations for later review.) Above all, don't give up. When you find the

right match, you'll know.

>

> Be well.

> Sandy

>

>

[Guest guest]

Hi

Just had to comment on your terminology 'upstream' - no truer word was

spoken, we're almost like salmon constantly pushing upstream, fighting

against the strong opposing current, just in order to survive, well put

my man!

Regards

Barbara

(UK)

[Guest guest]

I can only echo your sentiments regarding The Chiari Institute,

particularly Dr B, a truely good man, with such a great

understanding of the Chiari/Cerebellar Ectopia/CSF flow

(or lack of) problem and associated conditions and how

to help improve them.

His educational videos on the website were amazing and

helped me understand such a lot about my condition. It gave

me great hope when he said that the flattened pituitary can

recover and start to function again, if the pressure is alleviated.

He answered the many questions I had prior to going to TCI

often emailing me late at night. He took great pride in his work.

When I eventually got to meet him at TCI, I found him a very

amicable man (and he's funny!). What an absolute pleasure,

not to meet with the usual ignorance and complacency that I'd

become used to. He confirmed that what I was suffering from

was brain compression. Pity they couldn't determine that in the UK!

My own year after year of study and looking at measurements

from my MRI's taken in various positions, I thought showed me

that my brainstem was being subtly 'pincered' by what seemed

to be 'a slightly lose head!', when my head was forwards

(in flexion) and also my brainstem seemed to be being

stretched, by how my head was being pushed at night

(and believe me I had pains from hell every single night).

Dr Nishikawa at TCI took the time to asses the sample MRI

views I sent across in the emails and I found him very helpful

and not at all put off by my suggestions, indeed he also thought

it was a possibility and when I eventually got to NY and to TCI

his measurements confirmed that, not only did I have cranio

cervical instability but yes I also had an elongated brainstem.

I have been less fortunate than you in that, even though I had

my diagnosis, I have not been able to obtain any kind of surgery

in this country (UK). However I did come away from the TCI with

a prescription for a CTO (Full metal jacket) which, when

I wear it at night, I am certain has saved me from further

deterioration.

Regards

Barbara

(uk)

[Guest guest]

My Super Hero is Dr. Rosner from NC! Cortney