Re: Can a Herniation Increase?

[Guest guest]

In a message dated 9/30/2002 8:51:06 AM Eastern Standard Time,

tracey.griffin2@... writes:

> 1. Can the herniation increase over time and is there any indication

> to repeat the MRI?

> 2. Should the MRI include the spine? (that was never done).

> 3. Are these typical symptoms with such a " mild case " ?

1. I was always told it could not get worse.The symptoms change, but the

herniation itself doesn't change.I have had an 17mm herniation since I was

born.

2. Yes it should.

3. yes they are.Symptoms like that can happen anytime.

Summer

[Guest guest]

> 1. Can the herniation increase over time and is there any indication

> to repeat the MRI?

I believe the herniation can increase. The fact that you have worsened

is sufficient reason to see a Chiari specialist and they will want

more recent MRI.

> 2. Should the MRI include the spine? (that was never done).

Yep. Chiari I patients often have spine problems such as

Syringomyelia.

> 3. Are these typical symptoms with such a " mild case " ?

They sure are typical. What's mild is your herniation, not your

symptoms or the Chiari. Chiari I can exist with herniations less than

5mm. My daughter had no herniation below the level of the foramen

magnum, very symptomatic and surgery alleviated many symptoms.

> Thanks in advance to all,

> Tracey

[Guest guest]

In a message dated 10/1/2002 3:04:38 PM Eastern Standard Time,

rreusser@... writes:

> Although, Summer's experience and diagnosis might differ somewhat...the

> knowledge that I have gained here says yes, herniations can change. Simple

> things like aging can do this...There is even a chart somewhere that lists

> the " norm " for different ages....I can't find it :'-{

> I had a computer problem and lost A LOT of files...aarrgghhhh.

>

> Trauma could cause an increase....

>

> Such things as a spinal or epidural in a non-decompressed person could

> cause

> an increase in herniation....

All chiari are the same except for how they are shown, so my diagnosis is the

same as everyone else even though I have type 2.Simple things like aging

cause the symptoms to go crazy not the herniation itself.The symptoms are the

ones to change not the herniation. The herniation stays the same.

Summer

[Guest guest]

> All chiari are the same except for how they are shown, so my diagnosis is

> the

> same as everyone else even though I have type 2.Simple things like aging

> cause the symptoms to go crazy not the herniation itself.The symptoms are

> the

> ones to change not the herniation. The herniation stays the same.

> Summer

>

Hi everyone,

I don't want to step on anyone's toes here, but the herniation does NOT

always stay the same. As Sally was saying, there are certain factors that can

cause the herniation to increase. Like an LP, or an epidural, and trauma is a

big one. I have talked to several members who have had one of these

situations and have had their herniation increase. (in Paradise) was in

a car wreck a good while ago, and her herniation went from 8 mm to 12 mm I

believe, is that right ?? I'm not positive about the exact length, but

I'm sure she can tell you that that trauma most certainly caused her

herniation to increase and her symptoms, on a drastic scale. So the

herniation actually can change.

Joanna/Atlanta (16 years)

ACM1-17mm with Syrinx from C1-T6 (dissipating...YAY)! And Neurocardiogenic

Syncope (resulting from miscommunications between brainstem and heart).

Medication is making a big difference! I have some residual issues, but I am

doing GREAT! You can view my story at:

http://www.pressenter.com/~chip/joanna.htm

Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakids

I can also be reached at Joanna@... or KidsAsk@...

" You have brains in your head. You have feet in your shoes. You can steer

yourself any direction you choose. You're on your own. And you know what you

know. And YOU are the one who'll decide where to go... " -Dr. Seuss

[Guest guest]

>1. I was always told it could not get worse.The symptoms change, but the

> herniation itself doesn't change.I have had an 17mm herniation since I was

> born.<

Just wanted to add my perennial two cents to this.

Although, Summer's experience and diagnosis might differ somewhat...the

knowledge that I have gained here says yes, herniations can change. Simple

things like aging can do this...There is even a chart somewhere that lists

the " norm " for different ages....I can't find it :'-{

I had a computer problem and lost A LOT of files...aarrgghhhh.

Trauma could cause an increase....

Such things as a spinal or epidural in a non-decompressed person could cause

an increase in herniation....

Just wanted to try to clarify this...also if I am way off base, please let

me know..

Best wishes,

Sally R

ACM..Decompression '91...

Hydro..VP shunt..2 revisions

Doing GREAT in Bethlehem,Pa with NO medications

> In a message dated 9/30/2002 8:51:06 AM Eastern Standard Time,

> tracey.griffin2@... writes:

>

>

> > 1. Can the herniation increase over time and is there any indication

> > to repeat the MRI?

> > 2. Should the MRI include the spine? (that was never done).

> > 3. Are these typical symptoms with such a " mild case " ?

>

> 1. I was always told it could not get worse.The symptoms change, but the

> herniation itself doesn't change.I have had an 17mm herniation since I was

> born.

> 2. Yes it should.

> 3. yes they are.Symptoms like that can happen anytime.

> Summer

[Guest guest]

Where do you get the information to support these claims? Since none of us

are physicians or research scientists, I would hope that claims like these

would be backed up with scientific EVIDENCE to support it!

I'm not saying it isn't so, but scientific evidence from reputable medical

journals would go a long way in lending support to your postulations. I for

one do not take anything at face value when someone makes a claim unless

there is medically/scientifically acceptable evidence to support that claim.

It is too easy to state something as fact based on one's own experience.

Because one says it is so, does not make it fact. The preponderance of

evidence must support the allegation in order to offer sufficient credence

to state it as truth.

Just my loonie's worth.

Warmest regards,

Sharon

-- Re: Can a Herniation Increase?

In a message dated 10/1/2002 3:04:38 PM Eastern Standard Time,

rreusser@... writes:

> Although, Summer's experience and diagnosis might differ somewhat...the

> knowledge that I have gained here says yes, herniations can change. Simple

> things like aging can do this...There is even a chart somewhere that lists

> the " norm " for different ages....I can't find it :'-{

> I had a computer problem and lost A LOT of files...aarrgghhhh.

>

> Trauma could cause an increase....

>

> Such things as a spinal or epidural in a non-decompressed person could

> cause

> an increase in herniation....

All chiari are the same except for how they are shown, so my diagnosis is

the

same as everyone else even though I have type 2.Simple things like aging

cause the symptoms to go crazy not the herniation itself.The symptoms are

the

ones to change not the herniation. The herniation stays the same.

Summer

[Guest guest]

My impression is this........Generally, I believe that that Herniation stays

the same, as long as there are no other Circumstances......just straight

Chiari, that's all. But if you add in other Factors, such as Trauma, the

Herniation may change.

Also, there is another Factor that we are not even considering here. From

MRI to MRI there may be a small difference, but that doesn't mean your

Herniation actually changed, it's just one of those positional things, and

maybe the MRI Tech.....etc. If that makes any sense.

Take Care,

Brande, RHIT

mymocha@...

>

> > All chiari are the same except for how they are shown, so my diagnosis

is

> > the

> > same as everyone else even though I have type 2.Simple things like aging

> > cause the symptoms to go crazy not the herniation itself.The symptoms

are

> > the

> > ones to change not the herniation. The herniation stays the same.

>

> I don't want to step on anyone's toes here, but the herniation does NOT

> always stay the same. As Sally was saying, there are certain factors that

can

> cause the herniation to increase. Like an LP, or an epidural, and trauma

is a

> big one. I have talked to several members who have had one of these

> situations and have had their herniation increase. (in Paradise) was

in

> a car wreck a good while ago, and her herniation went from 8 mm to 12 mm I

> believe, is that right ?? I'm not positive about the exact length,

but

> I'm sure she can tell you that that trauma most certainly caused her

> herniation to increase and her symptoms, on a drastic scale. So the

> herniation actually can change.

>

>

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[Guest guest]

Glad you stated it that way Brande. And may all the other readers take note

of it too! " MY IMPRESSION is this.... " is exactly that, an impression, not

a supported fact. Should there be evidence to support this, then by all

means, share it with the group.

Warmest regards,

Sharon

-- Re: Can a Herniation Increase?

My impression is this........Generally, I believe that that Herniation stays

the same, as long as there are no other Circumstances......just straight

Chiari, that's all. But if you add in other Factors, such as Trauma, the

Herniation may change.

Also, there is another Factor that we are not even considering here. From

MRI to MRI there may be a small difference, but that doesn't mean your

Herniation actually changed, it's just one of those positional things, and

maybe the MRI Tech.....etc. If that makes any sense.

Take Care,

Brande, RHIT

mymocha@...

>

> > All chiari are the same except for how they are shown, so my diagnosis

is

> > the

> > same as everyone else even though I have type 2.Simple things like aging

> > cause the symptoms to go crazy not the herniation itself.The symptoms

are

> > the

> > ones to change not the herniation. The herniation stays the same.

>

> I don't want to step on anyone's toes here, but the herniation does NOT

> always stay the same. As Sally was saying, there are certain factors that

can

> cause the herniation to increase. Like an LP, or an epidural, and trauma

is a

> big one. I have talked to several members who have had one of these

> situations and have had their herniation increase. (in Paradise) was

in

> a car wreck a good while ago, and her herniation went from 8 mm to 12 mm I

> believe, is that right ?? I'm not positive about the exact length,

but

> I'm sure she can tell you that that trauma most certainly caused her

> herniation to increase and her symptoms, on a drastic scale. So the

> herniation actually can change.

>

>

---

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[Guest guest]

Thought I'd add my OWN experience as someone who's herniation DID increase

following trama .

I had been followed for about 10 years time for both chiari and multiple

sclerosis through yearly exams and yearly MRI's prior to being hit in the

head in a car accident . During the year following the car accident /trama my

studies BOTH prewreck /and several done over the following months were

evaluated by several physicians doing comparison study off the MRI's .

....although the degree of herniation measurements wern't all the same from

doctor to doctor ..it was clear that my tonsils droped AN ADDITIONAL 7 mm or

so from the position they had been in pre car wreck /mild head trama. ( They

started off at about 5-7 mm below the foramen magnum - this being

consistantly about the same over those full 10 years of prewreck monitoring .

)

According to NIH they were at 11-13 mm debth by eight monts post wreck

....according to my neurosurgeon at time of surgery 1 year plus post wreck

they were about 12mm below the foramen level .

Studies done POST wreck but before surgery also showed the tonsils changing

shape gradually from rounded to pointed as they droped lower ..becoming more

molded and impacted . CINE studies repeated a few months apart also showed

further occlusion developing as they droped .

This was all addressed in legal depositions ( with the physicians under oath

to " tell the truth " during the 5 year legal battle that just ended in my

favor . One of the physicians depositioned stated that while it was not known

to be common it perhaps was mostly because its NOT common for someone to have

those prewreck /trama MRI's to compare with .

Another of the neurosurgeons also testified that there are known triggers to

someone's tonsils decending lower besides those lumbar tap risks discussed on

the list today ..these include coughing hard /aspriation spells and

occationally reactions to some medications that can cause the brain to swell

.. He discussed the " closed hydrodynamic theory " as a probable underlying

factor in this happening in some folks with a chiari malformation a bit

saying he felt this explained why it may happen .

AGAIN folks ...there just isn't a huge body of research or articles about all

this I know off ..and many folks won't have those pretrama MRI's to compare

too ...but it IS clear it can happen ...so Summer ..I'd kindly disagree with

you when you say a herniation always stays the same .

I do have a letter written by Dr Heiss at NIH documenting what happened in my

case / and another by Dr Batzdorf doing the same as well as the depositions

that address this .

I'm not trying to say this may be true for anyone else - I think the

research published and articles speak for themselves AND are from credible

sources . A search of pubmed will turn up a few more too .

in Paradise CA - chiari /multiple sclerosis - and doing pretty well now

at 4 plus years post op .

[Guest guest]

Hey and forgive me for being a little behind with this reply to

herniation increase. A little busy with 2 new " friends " ...Isidore

and Lili...lol

My herniation almost doubled since surgery. At the time of surgery 3

years ago I had a 1cm (approx 10mm) herniation with each MRI they

continue to decend further. My last MRI report stated (pp)that

compared to previous MRI's there is a definate increase.

Now they are 20 mm. I was/am totally confused by this and wrote to

Dr. Bolognese last year when he was able to read and reply to

emails...He told me that it can happen.

The only trauma that has happened post-op was during recovery (few

days home) while laying in bed and looking at the ceiling 24/7, I

noticed a bunch of dust bunnies around and on the ceiling fan..Well

like a ding-dong on meds I decided to clean it. All was fine until I

hopped off my high bed (forgot about surgery) and felt the outline of

my spine..sort of a jarring feeling and oh yea it hurt :0)

This is the only thing I can think that might have caused it

I have had a myelogram and ventricular cisternograms post-op..And

from a few things I have read this might pull them down too. I was

decompressed so I am not sure.

I have heard that many tonsils " bounce " back up. My tonsils were

seperated according to my operative report. I am not sure why my

tonsils sag...uh hem...let's just say they are not the only part of

my body that wants to hang south ;0)

Again, sorry for writing a few days behind.

Hugs,

Janie (louisiana)