swallowing

June 14, 1999

In a message dated 6/14/99 10:00:21 PM Beijing Standard Time,

Ltlredski@... writes:

<< anyone ever chokes on their own saliva? >>

Does sound gross - but YES! I wake up at night doing that - coughing and

choking. Doesn't happen very often though. When it starts - I'll do it every

night for a while then it will go away for weeks - sometimes months. My neck

is really stiff at those times too.

Peggy

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June 14, 1999

In a message dated 6/14/99 10:50:08 PM Beijing Standard Time, PStout9230

writes:

<< In a message dated 6/14/99 9:58:35 PM Beijing Standard Time,

mull0044@... writes:

<< almost like the bones are

clicking. >>

For about 2 yrs now, my throat feels like the bones in front slide out of

place and get stuck. I can take my fingers and gently push them back over,

they click and the pain goes away except for a little soreness.

But I don't know what it means. I've never told the dr about it. [Just

changed doctors due to insurance - and she hasn't gotten past trying to get

my triglycerides down and figuring out what is wrong with my arm and

shoulder.] Maybe we'll get to the throat some time next year.

Don't guess I'll live long enough to get everything fixed!

Peggy >>

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In a message dated 6/14/99 9:58:35 PM Beijing Standard Time,

mull0044@... writes:

<< almost like the bones are

clicking. >>

For about 2 yrs now, my throat feels like the bones in front slide out of

place and get stuck. I can take my fingers and gently push them back over,

they click and the pain goes away except for a little soreness.

But I don't know what it means. I've never told the dr about it. [Just

changed doctors due to insurance - and she hasn't gotten past trying to get

my triglycerides down and figuring out what is wrong with my arm and

shoulder.] Maybe we'll get to the throat some time next year.

Don't guess I'll live long enough to get everything fixed!

Peggy

June 14, 1999

In a message dated 6/14/99 10:26:22 PM Beijing Standard Time,

mull0044@... writes:

<< I have mentioned this to the doc....but says we just have to run more

tests...I did a barium swallowing study and of course....the doc said it

looked normal.....but of course....ughhhhhh go figure >>

I had the swallow study done also. The said the muscles waves [that happen

when you swallow] are going in reverse. Says this is unusual [have we been

called that before?] in a person of my age. Says it could be early

" presbyesophagus " . Looked that up but couldn't find out much about it except

it happens in " persons over age 80 " . I know I'm getting old - but I'm a

loooong way from that! However, my family dr did not even tell me that was on

the report. She said they didn't find anything. I found it when I got copies

of med records for the new dr [ who says she doesn't even need them. Guess

she figures she'll start from scratch.] They also found " a small sliding

hiatal hernia " that she neglected to mention. Could THAT be the reason for

the chest pain and pressure I have felt all these years? duhhhhh..

Anyway, nobody has told me if this reverse wave thing can cause choking.

Matter of fact - nobody has told me much of anything - except you guys!!

Peggy

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June 14, 1999

Hey group,

First, thanks to EVERYONE who replied to my surgery question. I'll keep

you posted about my decision!

And now, yet another question from Little Miss Questions herself: when

people first have swallowing difficulties, how do they manifest themselves?

For a few years now, on a semi-regular basis when I'm drinking something,

I'll start to cough when I'm swallowing it, as if I haven't been quite

mindful enough and a little bit of liquid has " slipped down " my throat in

advance of the rest of it. (Hope I explained that right!) I don't really

choke, gag, etc., at this point, just cough for a few seconds, and then I'm

better.

Is this how you have experienced swallowing problems starting, or is this

one of those nebulous Chiari things that my mom likes to say " you and half

the rest of the world " to?

And yes, I'm going to ask my doctor about this, too. :-)

Thanks.

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June 14, 1999

-----Original Message-----

>people first have swallowing difficulties, how do they manifest themselves?

Hi ....

I have started to have swallowing problems too...I don't always cough...but

I know what you mean...I do that too....it is more like my throat just

simply forgets how to swallow......like it goes down lumpy or

something...ugh..very difficult to describe.....almost like the bones are

clicking...hmmmmmm......don't know if that makes sense....difficult to

describe huh?

I also feel like someone is pressing on my throat from the back.....or from

the left side....which when this happens..drives me silly.....

I hope this helps

big hugs

leanne

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June 14, 1999

>>>if anyone ever chokes on their own saliva? Sorry that sounds a little

>gross

>

Hi Kathy and Leanne,

Yes, me too, only once in a while, and I never gag, just cough. And it's

just like Leanne said -- like it's " slipping " down my throat. For years

now I've also had a problem with very sugary chewing gum and sometimes

sucking candies -- as soon as I put those in my mouth, I choke. Then it

goes away.

in Boston

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June 14, 1999

When I have swallowing problems, they are a clicking

type feeling, like bones are clicking together. It

also feels like my throat is swelling, and I do choke

on my own spit. I have to swallow foods and drinks

very slowly. Oh and it sometimes feel as though I'm

being strangled.

Love & Hugs

_________________________________________________________

June 14, 1999

Hi,

Yes, I am more apt to choke on my own saliva... not often, but enough! I think because I'm more aware of possibly choking while eating, I'm more careful, but since I constantly swallow, the chances are higher for it to " go down wrong " . Also if I suddenly lean ahead and my mouth is open, I'll drool! If that ain't embarrassing! This has been slowly progressing the past few years. The choking has been present since the decompression surgery.

Luella

BTW... I thought Paradise is mid-way between Heaven and Hell

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June 14, 1999

Hi! The way I understood the swallowing thing was that you are losing or have

lost your gag reflux. When I went to 2nd opinion and this dr knows about

Chiari, he found on one side I have no gag reflux. He did not like this at all

and immediately got me in to see Dr Menezes in Iowa City (not just for that but

was very concerned about it). One month later I literally have no gag reflux

now. This is a serious thing coz' it affects breathing, swallowing just the

normal things in life we need to do. Apparently after talking with

(he is a member here) after his surgery the gag reflux was one of the first

things Dr Menezes checks for. I am still new at this but I do think that if you

don't have a gag reflux you definately need to get it checked out and also if

you have ACM this definately goes with it. Mine is progressing seemingly a

little more rapid than I thought it would so I have decided surgery is the best

thing.

No expert but definately don't like choking on everything!!!

Tina aka Sunflowers

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June 14, 1999

In a message dated 6/14/99 9:00:21 AM Central Daylight Time,

Ltlredski@... writes:

<< I would also like to hear the answers to this question and also

ask

if anyone ever chokes on their own saliva? >>

This was 's worst problem. His vocal cords were not paralyzed however

they were not closing all the way properly, allowing all the saliva to just

flow into his trachea. In turn this led to the aspiration, which led to the

chronic aspiration pneumonias and pseudomonis in his respiratory track which

ultimately led to ARDS ( lung failure).

Because his chiari was not addressed, and the NSG allowed the other

docters to treat the symptoms (constant antibiotics and breathing treatments

for the pseudomonis and pneumonias) his lungs were very severly damaged, and

his respiratory system severly compromised. He ended up in a coma on life

support for 60 days, and a permanent trach and humidified oxygen dependent.

With this procedure they completely seperated the esophagus and trachea so

there is absolutely no physical way can choke or aspirate from

swallowing. He only breathes thru the trach.

Although this is allowing to start to taste food and drinks (He

was totally tube fed for 6 years) he no longer can talk. The procedure took

away the ability to use his vocal cords permanentaly. It was definately

worth it as his lungs are healing slowly, and maybe will be strong enough to

be weened off the oxygen, he no longer chokes on his own saliva and is

beginning to start to learn to eat and drink after 6 years However the cost

was high....he will NEVER talk again.

So I can not stress enough...if this is one of your symtoms....please

get it addressed immediately before there is too much irrepairable damage to

your lungs. Since 's decompression his swallowing has improved in that

I can see him swallow completely different and the food goes down easier. It

no longer comes out his nose either. The decompression definately helped the

swallowing issue for him. And had we had a competent NSG from the beginning

and the chiari had been addressed when was a year old instead of at 7

yrs old he might not have had yeas of aspiration pneumonias and pseudomonos,

gone into lung failure, 60 days on life support in a coma or have the

permanent trach and oxygen dependency.

Address this issue before it causes permanent irreverseable damage!!!

Love, hugs and prayers, Haydee (Nana to , 7 yrs. old

w/Spina Bifida, ACM II, Hydrocephalus w/VP Shunt, Syringomeylia w/syrinx at

c1-c2, G Tube-fed, (totally NPO), Seizure Disorder, Swallowing Coordination

Disorder, Neurogenic Bladder, Lung Failure 3/30/97, 33 days on total Lung

Bypass (ECMO), 60 days on dual Life Support, Now Humidified Oxygen Dependent,

Radical Tracheostomy w/Total Loss of Vocal Cord Use, Paralyzed from the Waist

Down, 18 Surgeries, Asthma, Severe Latex Allergy, Allergies to many

Medications, Adhesives, and tons of other Stuff, With Such a Wonderful Love

of Life and one crazzzy Nana living right outside Baton Rouge, Louisiana,

Posterior Fossa Decompression, Duragraft (using own neck muscles) and a

Laminectomy of c1-c2, on March 2, 1999, so far so good and getting better and

stronger every day!!!)

's web page~~~~~~~>

<A HREF= " http://www.pressenter.com/~chip/joshua.htm " >The Story

</A>

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

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June 14, 1999

In a message dated 6/14/99 10:00:27 AM Eastern Daylight Time,

Ltlredski@... writes:

<< when

people first have swallowing difficulties, how do they manifest themselves?

>>

I would also like to hear the answers to this question and also ask

if anyone ever chokes on their own saliva? >>

My swallowing problems started with just coughing a bit when I drank

something...A few coughs, I was able to clear my throat and I was fine.

Sometimes I had liquids go through my nose (that's always an attractive site

LOL) Then I moved onto having trouble swallowing solid foods...Nothing real

serious...but very aggravating.

My swallowing problems disapeared after surgery. I'm 6 months post-op. Just

recently I've been starting to cough and choke...but not while

eating...sometimes on my saliva again, but mostly it feels like something is

in my throat..kind of a cross between something stuck and a really bad

tickle...I know that didn't make one bit of sense did it?

Tina

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June 14, 1999

Tina,

<<but mostly it feels like something is

in my throat..kind of a cross between something stuck and a really bad

tickle...I know that didn't make one bit of sense did it? >>

Actually that made a lot of sense. I have not had surgery yet, but often I

get that feeling that is between " somthing stuck and a really bad tickle " . I

was not sure what was causing it, but I should have guessed it would probably

be the chiari! : ) When I am really tired, or have had my neck in an

ackward position for a long time, I feel like there is a large lump in my

throat, and it is difficult to swallow.

Thanks for clearing that up for me - it made perfect sense.

Hugs,

(FL)

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June 14, 1999

In a message dated 6/14/99 12:40:43 PM Central Daylight Time,

sun4flwrs@... writes:

<< The way I understood the swallowing thing was that you are losing or have

lost your gag reflux. >>

Very interesting! I was wondering how many of you that are having the

swallowing problems have been told you have no gag reflex? I do not have one,

but I do not choke on anything. Wonder why?

Love,

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June 19, 1999

hi all,

I know I've said this before, but PLEASE pay close attention to these

swallowing problems. I used to choke on just about anything, but

especially anything liquid. I've had all the tests and do have a slight

throat deformity. But the chiari caused the choking. It got to the

point that I passes out from not breathing. I was able to breath out,

but not in. This is what lead to my surgery..Breathing is kinda'

important. Mine did get better after the surgery, but it seems to be

gradually coming back.

PStout9230@... wrote:

>

> In a message dated 6/14/99 10:26:22 PM Beijing Standard Time,

> mull0044@... writes:

> << I have mentioned this to the doc....but says we just have to run more

> tests...I did a barium swallowing study and of course....the doc said it

> looked normal.....but of course....ughhhhhh go figure >>

>

> I had the swallow study done also. The said the muscles waves [that happen

> when you swallow] are going in reverse. Says this is unusual [have we been

> called that before?] in a person of my age. Says it could be early

> " presbyesophagus " . Looked that up but couldn't find out much about it except

> it happens in " persons over age 80 " . I know I'm getting old - but I'm a

> loooong way from that! However, my family dr did not even tell me that was on

> the report. She said they didn't find anything. I found it when I got copies

> of med records for the new dr [ who says she doesn't even need them. Guess

> she figures she'll start from scratch.] They also found " a small sliding

> hiatal hernia " that she neglected to mention. Could THAT be the reason for

> the chest pain and pressure I have felt all these years? duhhhhh..

> Anyway, nobody has told me if this reverse wave thing can cause choking.

> Matter of fact - nobody has told me much of anything - except you guys!!

> Peggy

>

> ----------------------------------------------------------------------

> eGroups.com home: /group/chiari

> www. - Simplifying group communications

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January 2, 2008

Though I'm writing before all of the tests of been performed, a swallowing

test was given to my Mom this morning in the hospital (she aspirated on

Friday). I'm told she has very limited movement and couldn't swallow

applesauce. She was also not able to swallow water. Last week she was

still eating full meals. She currently has a staph infection which may be

compromising her more, but I don't think it's going to make that much

difference (maybe I'm wrong). They are going to check her esophagus later

today and will probably need to put in a peg for a feeding tube. I know

many of you have written about swallowing issues, etc. before but I hadn't

paid too much attention at that point. I don't see anything on our support

group list under swallowing so I just thought I'd check with all of you re

feeding tubes and if any of your loved ones have one. I'm told it can be

temporary. Thanks, Norma

January 2, 2008

If you go down to the bottom of this message and go into " messages " and put

" swallowing " in the search, you will probably come up with all kinds of

conversations we have had. It is just a quick way to search and not have to

wait for answers.

I think also has a section in the lists only I don't know exactly

where. You might want to look through the titles.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

RE: Swallowing