questions on aging and chiari

[Guest guest]

Is there anyone in the group which was diagnosed with chiari at a the age of

20-23 and who is now in their 40's, which chose not to have surgery done. MY

question is how is life now, is it pretty normal, are you suffering from alot

of syptoms and do you whish you had the surgery. This is my debate with myself

surgery or no surgery.

Mark

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[Guest guest]

I have a similar but different question. Do people with chiari's have normal

life expectancies?

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[Guest guest]

In a message dated 1/14/99 3:32:02 AM, you wrote:

<<Is there anyone in the group which was diagnosed with chiari at a the age of

20-23 and who is now in their 40's, which chose not to have surgery done. MY

question is how is life now, is it pretty normal, are you suffering from alot

of syptoms and do you whish you had the surgery. This is my debate with myself

surgery or no surgery.

>>

mark

im 46 , i was dx in 1988 , and chose to monitor both the chiari and multiple

sclerosis found on the same day . i did well with both , till being rearended

in a car wreck ...and hitting my head on the seat head rest ....symptoms got

worse , leading me to seek expert opinions . i then had surgery when a cine

study showed blocked csf behind my tonsils ( the mris showed an increase in

herniation following the wreck as well ) .

i did not need surgery before the wreck , but im not sure the 2 years after

the wreck it took to find good guidance , and wait for a surgical opening ,

was in my best intreasts ....once symptoms become really active and interfear

with your daily life ,....and/or are progressing ...look for a good doc !

..i dont think its great that the system can drag on soo long ( if all had gone

well , at least a year was added by the system and backlog of resources ect

.....i wonder frequently how fast its important to get it done , once its

obvious surgery is a good option to persue . i do think the work of this group

will continue to improve speed and access to treatment of chiari .....and was

really glad to read here that more mris are going into canada now ...the

merits of health care here in the states gets trashed lots in my mind ...i

think we tend to forget just how fast one can get an mri , or surgery for that

matter here in the states . im greatful for that !

let your body and insticts help guide you ......:-) stick with your gut

looking for answers till you know whats right for you :-) and " stay out of

harms way " ....my new moto for 1999 :-) sarah in paradise

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[Guest guest]

At 11:15 PM -0500 1/13/99, DANNYSPC@... wrote:

>I have a similar but different question. Do people with chiari's have normal

>life expectancies?

>

Now here is another question that I may be afraid to hear the answer

to.......but I aam very interested anyway.

Good question.......I hope you get an answer!

JM

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>

[Guest guest]

At 10:23 PM 1/13/1999 EST, MARK73594@... wrote:

> Is there anyone in the group which was diagnosed with chiari at a the

>age of 20-23 and who is now in their 40's, which chose not to have surgery

>done. MY question is how is life now, is it pretty normal, are you

>suffering from alot of syptoms and do you whish you had the surgery. This

>is my debate with myself surgery or no surgery.

Hi Mark,

Even if anyone answers who is in that position, it should have very little

affect on how you decide about your own case. You'd have to get a hundred

responses if you wanted to use the results to help you decide. Out of the

hundreds and hundreds of Chiarians I've talked to, I don't think I've even

met two that were all that similar. Such is the nature of the beast!

You've got a tough decision to make. Are your symptoms increasing to the

point that you cant - or expect that you may not be able to - go about your

daily business? A good indication to the surgery answer is in that question

- and even then your personality can decide one way or the other.

Good luck, man.

cheers and peace and pearls in shells,

ronny

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[Guest guest]

bernadette

In a message dated 1/14/99 7:49:06 PM, you wrote:

<<I want to throw another question in the ring. If someone is missing C1 and

most of C2 then neck stability is compromised, so as this person ages do the

muscles weaken and cause increasing problems?

>>

first thoughts ...yes ,the stability is compromised (the weight of our heads ,

ballances on the stalk of the spinal cord /neck ..resting on c2 ......., in a

person who remains active , and in one who has nerve pathways intact , ....i

think perhaps they would develope more muscle mass to help compensate.

...course if that same person also has a tendancy to these durn cramps that hit

.....theyd be that much stronger ........ack !!!

one thing i made for myself , is a neck suport made from bubble wrap envelope

, duct tape (G), and covered with a long scarf . i can easily hold the ends of

the scarf with the right amount of traction , to suport and protect my head

neck movement . during the winter time , ive also used a rice filled sack ( in

place of the bubble wrap , then it can be microwaved for heat . in the summer

ive used those granuels of clear stuff they sell at the nursery that hold

water , sewed into the same tube of fabric ....this is a great cooling aid for

me with the ms thrown into my experience too . so i guess you could call it a

3 way brace/scarf , now ...tehehe ....ps i do use the soft collar in the car

like the docs sugest these days ...the home made one slips right behind it .

(G)

i had fun buying old silk tyes for fabric last time at the thrift store too

:-)

sarah in paradise

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[Guest guest]

Hi gang,

I want to throw another question in the ring. If someone is missing C1 and most

of C2 then neck stability is compromised, so as this person ages do the muscles

weaken and cause increasing problems?

Bernadette

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[Guest guest]

I certainly hope that we have a normal life expectancy. I want to see all me

grandsons grow up and hopefully in time be a greatnanna. I would just

appreciate

a little better quality of live than I have at the moment. LOL Ann Brisbane

Australia

DANNYSPC@... wrote:

> I have a similar but different question. Do people with chiari's have normal

> life expectancies?

>

> ------------------------------------------------------------------------

>

[Guest guest]

At 07:45 PM 1/14/1999 -0000, paulbernadette@... wrote:

> Hi gang, I want to throw another question in the ring. If someone is

>missing C1 and most of C2 then neck stability is compromised, so as this

>person ages do the muscles weaken and cause increasing problems?

I would think that your neck muscles would be built up accordingly, over

time, to compensate for the lack of proper structure - so by the time you

got old enough to have your muscles decrease, then you should be able to

afford some loss of strength.

But how the hell would I know? Feel free to condemn my theory. After all, I

thought Doug Flutie was Canadian. I'm wondering now if Wayne Gretzky isn't

actually from Brantford, Ontario after all.

peace and cheers and slippery heroes,

ronny

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[Guest guest]

In a message dated 1/14/99 6:55:35 PM Eastern Standard Time, ronny@...

writes:

<< >Maybe being a no-neck is a good thing if you're a chiari patient ?

Or maybe it would make it even more plausible to develop csf obstructions

by limiting the room for flow? It sounds to me like it could add to

compression problems. >>

A while back, it seems like we threw around this about who had short necks.

Whether short necks posssibily add to compression problems sure would make

sense to me. genetically has a short neck and I could understand how

it could possibly aid in causing additional flow problems other then the

problems caused by a small posterior fossa or blockage from the herniation.

Think we're grasping at straws????

Tory (mom of )

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[Guest guest]

Wayne Gretzky is from Canada Ronny! I won't take that one away from

you.

My neck stability is worse since my last surgery. Dr. Milhorat found

that my first vertebrea was congenitally fused to the skull. When doing

the supra sinus decompression, I believe that part of the skull was

removed.

My odontoid bone has tilted more since surgery, and I don't know if that

is causing my increase in new symptoms or not.

It only makes sense that the lamenectomy's would increase the chance of

neck instability. I think we should all have at MRI's at least every

other year to check things out! Just my opinion.

Kathleen

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[Guest guest]

Hello All,

I had a laminectomy from C2 to C5 . After a car accident I herniated

C5 & C6.

I have an awful time with my neck. I do think you have less stability

after a laminectomy! Hugs Robin

paulbernadette@... wrote:

Hi gang,

I want to throw another question in the ring. If someone is missing C1 and most of C2 then neck stability is compromised, so as this person ages do the muscles weaken and cause increasing problems?

Bernadette

[Guest guest]

Bernadette said:

>I want to throw another question in the ring. If someone

>is missing C1 and most of C2 then neck stability is compromised,

>so as this person ages do the muscles weaken

>and cause increasing problems?

This has sparked an interesting thought (to me anyway..). I had lifted

weights for years before my decompression surgery, and resumed lifting just

a couple of months after the surgery.

My neck is big from the weightlifting and it's solid. If you look at my

photo you'll see it looks my head is mounted on a tree stump. Maybe being

a no-neck is a good thing if you're a chiari patient ?

Bernadette- when you say " missing C1 and most of C2 " do you mean as a birth

defect ? (The surgery does not remove the entire C1 or C2 - just the

spinous process- the nub on the back)

See http://www.asianconnect.com.sg/health/mdasample/anat1.html for a good

picture of what I'm talking about.

Chip

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

E-mail: chip@... (ACM-1, 26 months post-op)

St Croix Beach, Minnesota

Home page: Http://www.pressenter.com/~chip/chiari.htm

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

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[Guest guest]

>Maybe being a no-neck is a good thing if you're a chiari patient ?

Or maybe it would make it even more plausible to develop csf obstructions

by limiting the room for flow? It sounds to me like it could add to

compression problems.

>See

>http://www.asianconnect.com.sg/health/mdasample/anat1.html for a good

>picture of what I'm talking about. Chip

Good site!

cheers and peace and no-neck geeks,

ronny

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[Guest guest]

r wrote:

>

> At 07:45 PM 1/14/1999 -0000, paulbernadette@... wrote:

> > Hi gang, I want to throw another question in the ring. If someone is

> >missing C1 and most of C2 then neck stability is compromised, so as this

> >person ages do the muscles weaken and cause increasing problems?

>

> I would think that your neck muscles would be built up accordingly, over

> time, to compensate for the lack of proper structure

> Ronny

I can give you an answer. I had the middle portion of the cervical

vertebra from C-1 to C-7.

My nsg explained why to mom. There was more of my hind brain sitting

into the vertebra than he thought. Mine was very extensive. I couldn't

hold my head up on it's own up to 3 months and I wore a soft collar

after that. I don't have to many problems with my neck muscles..my head

doesn't flop from side to side (couldn't resist that one). tee hee...!

I do have associated muscle spasms that are present because of the

surgery. I don't know what it is going to be like when I'm forty or

fifty but I really don't have a problem about weakness. I try to avoid

any and all accidents, falling or in a car. I'm sure if I was in a car

wreck that I would be much more vunerable than others would be. I try

not to think about the what ifs...as that can be maddening.

Connie

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[Guest guest]

At 7:14 AM -0500 1/15/99, SLV426@... wrote:

> has a short neck, I was under the impression it was part of the Klippel-

>Feil.

>

>Sherry

My neck is very short as was my mother's and I just thought I inherited

that from her. As a teenager I walways envied peoople who could wear a

turtle neck without really looking like a turtle. :-}

Judy Marie

>Mother of

>decompressed 10/21/98

>

>------------------------------------------------------------------------

>

[Guest guest]

I have a short neck too. I really hadn't thought about it but when I was telling my sister what Dr. Milhorat said about inheriting a small skull, she said that I also had a short neck. And all this time I just thought it was the double chins:).

Re: questions on aging and chiari

In a message dated 1/14/99 6:55:35 PM Eastern Standard Time, ronny@...

writes:

<< >Maybe being a no-neck is a good thing if you're a chiari patient ? Or maybe it would make it even more plausible to develop csf obstructions

by limiting the room for flow? It sounds to me like it could add to

compression problems. >>

A while back, it seems like we threw around this about who had short necks.

Whether short necks posssibily add to compression problems sure would make

sense to me. genetically has a short neck and I could understand how

it could possibly aid in causing additional flow problems other then the

problems caused by a small posterior fossa or blockage from the herniation.

Think we're grasping at straws????

Tory (mom of )

[Guest guest]

has a short neck, I was under the impression it was part of the Klippel-

Feil.

Sherry

Mother of

decompressed 10/21/98

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[Guest guest]

>Or maybe it would make it even more plausible to develop csf obstructions

>by limiting the room for flow?

I can't see how you could obstruct or limit the flow of CSF by having a

built up neck. Maybe ...... if there were muscles inside of the rim of the

foramen magnum or the cervical vertabrae.. but the muscles are superficial-

(there's an opening for a zinger)... somebody go for it

Chip

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

E-mail: chip@... (ACM-1, 27 months post-op)

St Croix Beach, Minnesota

Home page: Http://www.pressenter.com/~chip/chiari.htm

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

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[Guest guest]

At 09:53 AM 1/15/1999 -0600, Chip Vierow wrote:

>>Or maybe it would make it even more plausible to develop csf obstructions

>>by limiting the room for flow?

>

>I can't see how you could obstruct or limit the flow of CSF by having a

>built up neck. Maybe ...... if there were muscles inside of the rim of the

>foramen magnum or the cervical vertabrae.. but the muscles are superficial-

Not a " built-up " neck. Why do you think everything has to be about *you*?

Oh yeah - it's the swollen head thing thing, I guess.

I'm talking about people with short necks in general. If it was some sort

of minor growth defect, all the stuff in there would have less space to

position itself than if the neck was longer. Assuming this is the case, it

wouldn't effect those who had " normal " necks but built them up after buying

that Atlas book from the back pages of their Spiderman collections.

cheers and peace and comicbook dreams,

ronny

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[Guest guest]

Good question! I'm 42, never have had a decompression, I

have ACM II, had a shunt put in back in 1975 for

hydrophelus, have 2 total hips, had a stroke in 82, I'm in a

wheelchair 24/7, have had 5 revisions for the shunt amongst

numerous other surgeries. A total of 30 surgeries and I am

going pretty strong, went to the nsg yesterday and was told

that there may be a blockage in the shunt or just scar

tissue will find out for sure on friday when she does a CAT

scan.

My last neuro visit was 5 years ago (I know I have been

real lucky) so I would say as long as you take care of

yourself you can expect a normal life span of say 75 - 85

years old.

June

Judy Marie wrote:

>

> At 11:15 PM -0500 1/13/99, DANNYSPC@... wrote:

>I have a similar but different question. Do people with chiari's have normal

>life expectancies?

>

Now here is another question that I may be afraid to hear the answer

to.......but I aam very interested anyway.

Good question.......I hope you get an answer!

JM

>------------------------------------------------------------------------

>

[Guest guest]

In a message dated 1/14/99 7:11:23 AM Central Standard Time, kitten@...

writes:

<< >I have a similar but different question. Do people with chiari's have

normal

>life expectancies? >>

's dr. once told me, barring any normal complications, like getting hit

by a bus, a car wreck, etc...that his life expectancy is the same as mine or

his. Yea right, a few months later we end up in PICU on life support for 60

days....Guess that was our bus! LOL

Love, hugs, and prayers, Haydee ( Nana to , 7 yrs

old, w/Spina Bifida, Hydrocephalus w/VP Shunt, ACM II,

Tethered Cord, Seizure Disorder, G-Tube Fed (totally NPO),

Swallowing Coordination Disorder, Lung Failure 3/30/97, 60 days on Life

Support, 33 days on Total Lung ByPass (ECMO), Now Humidified Oxygen

Dependent, Radical Tracheostomy w/Total Loss of Vocal Cord Use, Paralyzed

from Waist Down, 17 Surgeries,

Asthma, Severe Latex Allergy, Allergies to many Medications, All

Adhesives, and tons of other Stuff, and one crazzzzy Nana living right outside

Baton Rouge, Louisiana)

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