and BillRe: Chiari type I malformation, Family Guide to Neuromedicine

[Guest guest]

,

here.

I would caution you to not rule out ACM for a diagnosis of Jeff. Let

the experts do that. I too figured that they would surely have

caught ACM on an MRI. Yet, upon further investigation, it appears I

might indeed have ACM. My MRI pics (2 sets thus far - and my

internist is considering ordering one more) were viewed by experts in

Joplin, Tulsa and Mayo (in Rochester). None picked up on ACM as a

possibility - yet the evidence is there. From what I've learned, it

is very difficult to correctly diagnose ACM - and there are many

related brain conditions which only an expert can diagnose (i.e. may

not be apparent that cerebellar tonsils extend far if at all out of

normal range - but there can still be other indicators).

Bill eludes to a very important fact. Regardless, you'll have to

choose which expert you are going to listen to. The gentleman who

emailed me last week has a daughter who was diagnosed with ACM 5

years ago. She was 5 1/2 at the time, and has had the surgery. It

alleviated all symtpoms - including vomiting. She too had seen

experts who stated it would do no good. Of course, it was more than

an inconvenience to her (as opposed to Bill's daughter). I fall into

that category. Supposedly, my life is threatened by whatever this is.

I'm sending my pics off this week to more than one " expert " . We'll

see what they say - and I'll wait on their responses.

Bill also brings up a point which all must consider. There is risk

inherent in any such surgical procedure. Also, you can see on the

link I posted - that the surgery is not always effective - and

multiple surgeries may result. Much to prayerfully consider. Just

wanted to give another point of view here.

By the way, ACM does not rule out MSA. It is possible to have both.

It is also possible that ACM corrective surgery will not correct MSA

symptoms - even if the ACM proves to be corrected. I have

communicated with someone who falls in this category.

Oh yeah... MRIs do typically show a true expert sufficient evidence

to diagnose. However, I am reminded of a friend of mine. Experts

viewed his wife's x-rays. None picked up on anything odd. However,

a simple lab tech said something didn't look right. My friend

pursued that comment - and it turned out they caught cancer and

treated it - in time. In that case - the experts were wrong - and

the niave tech was correct.

All interesting info and worthy of pondering.

Catch you later.

Keep searching. I accept my current lot (admittedly - reluctantly -

today - as my wife can attest to), but continue looking.

> ,

>

> I am not sure a MRI of the brain shows a Chiari as the cyst is

actually in the spinal column rather than the brain. My daughter has

a Chiari cyst and was told not to have it operated on as it is not

giving her a lot of trouble. Her's causes numbness of her left hand

every so often. She has seen 3 experts on Chiari and gotten three

different opinions, but two of the three said they would not advise

the operation as the results might be worst than what she presently

has.

>

> Take care, Bill Werre

>

> ==========================

> >

> > From: Maciejewski

> > Date: 2002/08/12 Mon PM 12:00:31 CDT

> > To: " 'shydrager@y...' "

> > Subject: Chiari type I malformation, Family Guide to

Neuromedicine

> >

> > Hi Folks,

> >

> > I was intrigued by " Tenacity's " dialogue on the PET scan and this

Chiari

> > syndrome. I found a website that is very informative. I have

emailed my

> > internist with this info. I doubt Jeff has this, as he has had

numerous

> > MRI's of the brain (one every 6 months or so for the past 2 1/2

yrs) and

> > you would THINK the'd pick something like that up! But I thought

I'd share

> > this infor about Chiari

> >

> > Regards,

> >

> > M.

> >

> >