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<< I would sugjest checking with your doctors before trying enemas since

chiari and syringomyelia can cause problems with the heart.

>>

Like Coleen and others have written ..medical understanding does find the

heart /vagus nerve / and spinal cord injury have a communication loup that

causes some big problems .

On wacma I read a post this morning from a newly diagnosed acm person saying

" I

get sick to my stomach , hot & sweaty, and lightheaded just before a bm.

after i have it, i am fine. i wonder if there is a connection there. "

same connection ..the vagus system connection .

I had the privedge of working with several quadraplegic folks when I was a

private duty nurse for awhile . Bowel care requires the nurse or attendant

assisting , be attentive to signs of vagus system irritability ...the dammage

to the spinal cord can cause this to be really jittery and sometimes life

threatening as digital stimulation to cause reflex letdown is carried out .

Its also a problem during pregnancy and delivery in folks with cord dammage

....one reason I disagreed with some of what was said during the pregnancy /

acm /sm lecture at the confrence I guess ....when you see cords get going

with that vagus system ,...you do get that fight or flight stuff going

yourself !

so , ok ..maybe the attendants , patients and nurses collectively see more of

this than the doctors ? afterall ...most folks get through these spells too

....often before the doctor is able to respond and get there .

Spacticity and vagus irritabilty are often greater when the bowel is full too

.....when that slowing down spell hits and you don't have bm for a few days ,

beware vagus stuff too .

I've got a couple days of mettings for the independant living center

strategic planing starting in 3 mins ...gotta run , and won't have much time

for the list posts this next couple days ...but I think this is a topic

underdiscussed on the list , because were apt to keep our bowel and bladder

issues more offlist , amoungst those of us who've been here awhile .

there are several other nurses on wacma /asap ...would you chime in please

here , and fill in the gaps in my memory ? for guidance , there was a bit

that was very good in Dr W 's lecture as I recall .

in Paradise

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My two pennies worth on this issue. I can never let the bowel issue go by

without

saying something.

I have been extremely constipated all of my life. I have tried prunes, fluids,

fiber......

Prior to my decompression I was blocked and in pain. I had been taking lots of

fiber, and it just added more bulk and caused me to back up even more.

With patients with a neurogenic bowel, fiber doesn't work, it just makes more to

eliminate.

I had to resort to Go Lightly. Believe me, you don't go lightly after that

stuff,

but it did clear me out before surgery.

Keep in mind narcotics cause extreme constipation. Drink lots of fluids, and try

to keep regular.

Kathleen

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Hello,

Aparently there is a different entity from straight Chiari. This is

named Budd-Chiari. The only reason I know this is after obtaining and

reading my daughters intraoperative reports - it says Budd-Chiari. Of

course, my curiousity got to going after I read this, and this entity

known as Budd-Chiari shows up in heavy hepatic/gastro involvement. I

would say that's pretty correct considering that 's original dx

was GI reflux, and slow motility of the bowel. I'm not convinced

we're done with that dx (I say this because apparently there is

some evidence that there is inferior vena cava occlusion with

Budd-Chiari - which can be not nice....to say the least)...but as time

disallows we will have to set it aside for the time being.

Anybody else dx'ed with Budd-Chiari?

Since she was decompressed she has been 'regular', and no 'heartburn'.

Her symptoms (GI related) were so severe she was 'failure to thrive'

(couldn't/wouldn't eat/grow, and we questioned doing a 'fundo' wrap -

where they take part of the stomache, and 'wrap' it around the

esophagus to stop the regurgitation. Her ph numbers were so high, and

she was so constipated that she had to be medicated to be able to live

in some type of comfort (allow for motility of the bowels, and stop

the pain from the gases of the stomache hitting the esophagus, which

can actually cause cancer.). While it is not unusual for children to

have 'reflux' - particularly previous to school age...her's was so

severe that we questioned 'tubing' her, and surgery. I was not

comfortable with either - at the time - being a young mother, and

having been informed of the possibility of wretching - and possibly

having to intubate her because if the wretching gets really bad - a

whole can actually be blow in the stomache. I choose the least

invasive. I wasn't willing to deal with a blown stomache. I am very

glad, now that it has seemingly resolved with the decompression that I

'held out'.

Any info. on Budd-Chiari would greatly be appreciated!

Thanks in advance,

N--->ACM 1 (successfully decompressed 4/2/01), mom to 10

years - Noonan Syndrome = heart, eye, growth, bleeding dx'es & Budd-

Chiari (successfully decompressed 4/13/00), and Glenn 12 years - ACM 1

(to be decompressed 8/22/01), wife to Bob - the computer geek....in

NJ.

>

> In a message dated 8/10/01 7:54:16 AM, colleenkrause@m... writes:

>

> << I would sugjest checking with your doctors before trying enemas

since

> chiari and syringomyelia can cause problems with the heart.

> >>

>

> Like Coleen and others have written ..medical understanding does

find the

> heart /vagus nerve / and spinal cord injury have a communication

loup that

> causes some big problems .

>

> On wacma I read a post this morning from a newly diagnosed acm

person saying

> " I

> get sick to my stomach , hot & sweaty, and lightheaded just before a

bm.

> after i have it, i am fine. i wonder if there is a connection

there. "

>

> same connection ..the vagus system connection .

>

> in Paradise

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