Re: Are you all trying to scare everyone or what?

April 4, 2000

> Does anyone out there have anything helpful to offer those of us who

> are just starting to go thru this; who don't know if we've got major

> problems because of this thing or maybe something else is causing our

> pain. This is making my head hurt!! If there's anyone out there who

> can be postive and supportive, please reply. I really could use a

> friend here!

>

Hi Shari,

I am sure that there were many private posts made on this subject. By

borderline, the doctors normally mean that you don't have much of a

herniation. To be actually be diagnosed with chiari, you must have a 5mm

herniation. I was diagnosed at 7 mm.

Many surgeons won't do surgery on someone if they have less than 5 mm.

Here is a link to Dr. Milhorat's paper.

http://members.tripod.co.uk/chiari2000/milhorat-english.htm

The way of thinking is changing, but medicine can take a long time to

change.

There are many people that have come and gone through WACMA. Many have

had surgery and gone on to lead perfectly normal lives.

My ACM case has been a step by step process, but we are getting there. A

standard decompression didn't work for me, it may work for others. I had

a larger decompression done, and it took care of many of my symptoms.

There are success stories out there. I encourage you to go to

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

This page has many success stories, and I hope that you find some

inspiration there.

Kathleen

ACM I

April 4, 2000

I too encourage everyone to go to Chip's Success Stories page! I am one of

those success stories, with a chiari of 3-4 mm herniation and severe

symptoms, relieved completely by surgery. I don't post here much anymore -

most of us who are well now don't - perhaps we should do so more often.

It encouraged me so much to read of a 85% recovery rate after surgery - not

sure where I read it on the Internet, but those are great odds for a surgery!

If anyone needs to talk to someone who had no complications or problems and

has been healed, please write me privately at Hogle5@...!

Lauri

April 4, 2000

shari

i have memory problems and don't remember the answers rachel got that you

are refrring to. sorry

i was diagnosed in 10/99 with chiari after 10 years of trying to figure

out why i fail every neurological test i take. My other dxs, in my mind

just didn't explain all my sypmtomsl.

Well, my first reponse to my new chiari dx was " great, smething that we

can treat with surgery, and i will be cured! "

only to find after talking to the nsgs that the prognosis is not that

cheery

i wish it was

but they tell me it isn't

i haven't had surgery yet

i would have had surgery immediately if the nsg had said i would have a

normal life after the surgery

but he said " some symptoms may imrpove for some time "

and another said " very few of my symptoms might improve "

and another said I would " probably improve 15 points on the Karnofsky

scale "

that i probably still would not be able to work or have a normal life

that's all

that's the prognosises my nsgs gave me

i know some on the list that had more improvement than that

i know many on the list that are happy they had surgery

i know others that wish they hadn't had surgery

and still others that chose not to have surgery

and others such as myself still trying to make that hard decision

it is such a hard decision

but i am glad the nsgs are doing their best to be honest with me and not

promising what can not be guaranteed or reasonalbly considered to be

delivered

they are offering me their best guess of what surgery outcome would be

for me based upon their expeirence

i wish there was a quick easy cheap fix

but if there isn't i'm glad im told this so i can make the decision thats

right for me with the help of God

rather than relying on false assurances and false hope

in His grip,

melinda

shstack@... wrote:

> I was rather disturbed by the responses to who was told she

> has " borderline chiari " . I also found out I had Chiari I kind of

> accidentally while rereading some of my mri reports. The only thing

> I had been told at the time was that I had a " low lying tonsil " which

> is sometimes indicative of MS. My MS test was negative. My PT told

> me about the name Arnold Chiari Malformation and I started

> researching it. I believe that I have been asymtomatic up til now.

> I have come back searching for support because I've started having

> sharp spasms and pain at the base of my skull and It's made me worry.

> I fully understand 's concern. She writes asking for help and

> what she gets in return is horror stories and gloom and doom.

> Everything I've read on this site makes me feel like the cure

> (surgery) is alot worse than the disease and no one ever gets

> better. To be blunt, this has scared the sh-t out of me!! I can't

> speak for but I don't think the responses were very helpful

> to her.

>

> Does anyone out there have anything helpful to offer those of us who

> are just starting to go thru this; who don't know if we've got major

> problems because of this thing or maybe something else is causing our

> pain. This is making my head hurt!! If there's anyone out there who

> can be postive and supportive, please reply. I really could use a

> friend here!

>

> Thanx

> shari

>

> _________

> NOTE: NCC refers to posts with No Chiari Content

> Unsubscribe Yourself: chiari-unsubscribeegroups

> Technical Help: chiari-owneregroups

> WACMA Home: www.pressenter.com/~wacma

> WACMA List: www.eGroups.com/group/chiari

April 4, 2000

Shari-we all deal with our Chiari in our own ways. I'm sure no one intended

to upset by answereing her ?s. I have not had surgery, because of

other problems I have that make further testing risky. I've been

symptomatic since 9 years of age. Iwas diagnosed @ 38 by accident--tests

that showed the chiari and an anuerysm.That's a long time to be sick-having

many needless tests and misdiagnoses. My herniation is 15mm but I chose to

forego op-except for the shunt-which helped my symptoms a lot-so far. Every

one deals in their own way and make their own decision. Don't give up and

don't go away because of something you read here. And thanks for bawling us

out-sometimes we need it. Marcia

aka Me2,58,ACM1,hydro in the 4th ventricle, V/P shunt '96, Stroke X2

'91,cavernous sinus aneurysm clipped '80,>>can't have MRI for

definitives>>not decompressed

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April 4, 2000

I agree, no one was trying to scare , just make her aware of all

possibities. I am not a success story. But that does not mean she WON'T be.

I have suffered from Chiari like symtoms my whole life. I am now 28. I was

misdiagnosed for too many years to count. That was what the ns said was part

of the problem. It went on too long, with no help. So if you read

this, please understand no one meant to scare you. That is not our intent.

We just want everyone everywhere to be aware that surgery doesn't always

work, but like others have said either talk to Chip or read his home page. I

called him the day before my surgery, and he made me feel soooo much better

( THANKS CHIP :-) )