Re: and BillRe: Chiari type I malformation, Family Guide to Neuromedi

[Guest guest]

Hi all,

brings up another point, which I feel he did not make as clear as he could

have. How do you find an expert? In most cases (but not always) a real expert

can explain the problem in terms you can understand. Note that you will have to

pick a time when the doc does not have 50 people waiting and they are behind

schedule. You can sometimes just mention to the doctor that you are unsure what

is going on and want to schedule an appointment just to get an explanation.

In some cases, I have run into doctors who are experts, but don't feel you have

the ability to understand without a LOT of explanation. This is where learning

what you can in advance helps. You as a patient OR caregiver need to know

certain words and what they mean (highly simplefied):

ataxia movement problems - A loss of muscular coordination, abnormal

clumsiness

CEREBELLUM - The lower part of the brain which is beneath the posterior portion

of the cerebrum and regulates unconscious coordination of movement.

Dysautonomia problems with the autonomic system (automatic nerve impulse

transmission and responses - i.e eye blinks when light is shined into the eye)

dysphagia swallowing problems (speech problems can be a sign)

Dystonia - muscles are in such spasm that the affected part of the body is

frozen

MRI - Magnetic Resonance Imaging - Scanning technique for views of the brain or

spinal cord. No radiation is involved, but rather pulsed magnetic waves are used

to delineate the structures within the brain.

Orthrostatic hypotension is the BP drop on changing from reclining to sitting or

standing (this is also a sign that the autonomic system is failing to do it's

job).

These are bookmarks which are found on this list's bookmarks portion of the

website (Jim Todd links) and tell about medical terms:

http://www.texasneurosciences.com/PatientInfo/glossary.htm

http://cancerweb.ncl.ac.uk/omd/

http://www.hhb.infoxchange.net.au/glossary.htm

Take care, Bill Werre

==========================

>

> Date: 2002/08/13 Tue AM 01:50:14 CDT

> To: shydrager

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

Neuromedicine

>

> ,

>

> 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.

>

>

>