Re: Question about surgery/symptoms (LONG)

[Guest guest]

Can I ever relate to this one! My husband and I had this exact

conversation just last night!

Jessi has a lot of symptoms: severe headaches, pain and weakness in her

legs, back pain, balance problems, I could go on. But these symptoms

are not everyday, although there is some pain on a daily basis it is not

always severe. Since starting on Baclofen her symptoms have been much

better.

When I read about other peoples problems I can't help but wonder if we

are rushing into

surgery. (scheduled for next Tues.)

But then I think 'Why not try to stop the progression of this condition

before it gets as bad as those I read about. She is 18 and otherwise

healthy. She should heal well, and be able to have a normal teenaged

life, free of pain.'

I understand very well what you are feeling. I pray that you will find

peace of mind as you make this decision.

God Bless,

Nita (Jessi's Mom)

On Sat, 31 Mar 2001 13:35:57 -0500 " Barrientos "

writes:

> Question for you:

>

> My husband asked me, " Do you think that your symptoms are coming

> from the Chiari and not something else? " WHen I responded with a

> " yes " he asked why...

>

> And as silly as this sounds, I really didn't know what to say. I

> don't want to think that the only reason that I want to have this

> operation is because being able to pinpoint the symptoms on one

> thing makes me feel like I'm not nuts...

> I'm figuring you guys would understand that one..I never really told

> my GP about all my symptoms because he kept saying " you have two

> boys under 5 " and " you're doing a lot " whenever I told him I

> headache or I was tired or I just plain ached...WHen I found out

> about this it was almost a relief, to know that I wasn't just losing

> my mind..there WAS something wrong...*sigh*

>

> Am I jumping the gun if I go ahead and have the surgery? I am 26

> years old..I don't want to feel this way forever...yet, in hearing a

> lot of everyone's symptoms..I DO have a mild case...My headaches ARE

> everyday, but they are not " bad " everyday...just kinda there...some

> days I can't move they hurt so bad..but those are not ALL the

> time...Light hurts...sounds hurts...my balance is fine according to

> the close-your-eyes-and-don't-fall test, my coordinations sucks but

> it has all my life *grin*, nothing new there....

> Occasionally I have blurred vision, not usually though..Basically, I

> have a lot of the symptoms..but other than the headaches, I could

> live with them....Except for in the AM..I wake up miserable, stiff

> and achy all over...head pounding...*sigh*

> Sorry, I'm rambling now...

> just been thinking a lot...Have to decide If I should have it or

> not...and I don't " WHY " I think they are coming from ACM...Seems

> kind of silly for Me to say " it makes sense " when the docs say there

> is no way to know...

>

>

> Thanks,

>

> Mandy

>

>

> The real menace in dealing with a five-year-old is that in

> no time at all you begin to sound like a five-year-old. "

>

> --Kerr

>

>

>

>

>

[Guest guest]

Mandy,

There are a couple of ways to answer your husbands question. First if what

you think he needs to see is a list of common symptoms there is a very good

study on the WACMA web site that surveyed chiari patients and documented

their symptoms. You will most likely see most or all of what you feel are

your symptoms in this study.

If you think what he is asking is how does chiari cause your symptoms then

it will be a little harder to answer but much is still known. In my

experience there are two types of Chiari headaches. The most severe and

debilitating are the Migraine type headaches. In my case these could last

up to five days and towards the end medication did not help. The second

type are caused by bending over, or valsalva motions(coughing, laughing,

sneezing, yelling, etc) these headaches tend to be very intense but only

last minutes. Now in my case I was told that these headaches were the

symptoms that the surgeon was most confident that he could give me relief

from. At that point I told him that if this was all the surgery would do I

would gladly sign up. these were my most severe symptoms and I believe this

is true of most chiari sufferers.

To help your husband understand how these headaches occur explain to him

that CSF is produced in the center of your brain. In a normal situation the

fluid flows easily out of the brain and down the spinal column. Now explain

to him how the chiari malformation results in part of your brain getting

squished out of your skull and into your spinal column. this compression

causes the normal pathways for CSF out of the brain to become restricted or

blocked. as a result the pressure will build up inside your brain as this

fluid accumulates and has nowhere to go. This can trigger a series of

events that cause a migraine like headache. the Valsalva motions put

pressure on the brain stem therefore temporarily increasing this pressure

and causing an intense pounding headache that generally passes after a

minute or so. Generally as long as the compression on the area continues

the symptoms including headaches will worsen. A mixed blessing of this

disease is that the headaches and other symptoms tend to come and go. This

is a mixed blessing because at least at times we get a vacation from the

pain but unfortunately these breaks from the symptoms tend to lead those

around us to think that we may faking or that the illness is psychological.

As for the rest of the symptoms remind your husband that the malformation

does not only create pressure on the cerebellum but also all of the nerve

bundles that exit the brain through the Foramen Magnum, the hole at the base

of your skull. these nerve are connected to every part of our bodies and

therefore creating pressure on them can result in symptoms appearing all

over your bodies. This is similar to how problems with the main circuit box

leading into your house could lead to problems all over the house. In

addition to the headaches I had problems with, my sight, hearing,

coordination, walking, sleep apnea, gagging, etc... following the surgery,

all of these symptoms have been alleviated except for my eyesight which is

slowly improving.

Are you jumping the gun? Probably not, the longer the problem exists the

more likely permanent damage will occur. the most serious of which is

syringiomyelia. this occurs when since the CSF has nowhere else to go it

starts to burrow its way through the spinal column actually hollowing out a

channel for the fluid to take. You need to ask yourself if your headaches

and other symptoms are affecting your quality of life. Do not wait until

you are disabled. Yes you are reading about others that are much worse off

than you are. Sometimes this is because they were not diagnosed until late

in the disorder, others because they have other complicating disorders, some

have not received competent medical advice and care, and some have chosen

not to have surgery. The decision to have surgery is a very personal one

and one that you should weigh carefully. The prevailing medical evidence

and opinion points to decompression surgery being the best and perhaps only

way to get relief from Chiari. It has worked a miracle in my life.

I hope that this is helpful, if you have any other questions pleas feel free

to ask

Don McNeil

Pain free in Tucson, AZ

Question about surgery/symptoms (LONG)

> Question for you:

>

> My husband asked me, " Do you think that your symptoms are coming from the

Chiari and not something else? " WHen I responded with a " yes " he asked

why...

>

> And as silly as this sounds, I really didn't know what to say. I don't

want to think that the only reason that I want to have this operation is

because being able to pinpoint the symptoms on one thing makes me feel like

I'm not nuts...

> I'm figuring you guys would understand that one..I never really told my GP

about all my symptoms because he kept saying " you have two boys under 5 " and

" you're doing a lot " whenever I told him I headache or I was tired or I just

plain ached...WHen I found out about this it was almost a relief, to know

that I wasn't just losing my mind..there WAS something wrong...*sigh*

>

> Am I jumping the gun if I go ahead and have the surgery? I am 26 years

old..I don't want to feel this way forever...yet, in hearing a lot of

everyone's symptoms..I DO have a mild case...My headaches ARE everyday, but

they are not " bad " everyday...just kinda there...some days I can't move they

hurt so bad..but those are not ALL the time...Light hurts...sounds

hurts...my balance is fine according to the close-your-eyes-and-don't-fall

test, my coordinations sucks but it has all my life *grin*, nothing new

there....

> Occasionally I have blurred vision, not usually though..Basically, I have

a lot of the symptoms..but other than the headaches, I could live with

them....Except for in the AM..I wake up miserable, stiff and achy all

over...head pounding...*sigh*

> Sorry, I'm rambling now...

> just been thinking a lot...Have to decide If I should have it or not...and

I don't " WHY " I think they are coming from ACM...Seems kind of silly for Me

to say " it makes sense " when the docs say there is no way to know...

>

>

> Thanks,

>

> Mandy

>

>

> The real menace in dealing with a five-year-old is that in

> no time at all you begin to sound like a five-year-old. "

>

> --Kerr

>

>

>

>

>