Dysphagia when Laughing (Thanks for responses)

[Guest guest]

Thanks for all the responses on my post. I appreciate those who don't know me

writing to me also and I want to say Hello to you newer members. IM an " Old

Timer " on WACMA, and I know ALL too well about Where Swallowing Dysfunction's

come from in relation to the Brain, and I have managed to keep a G-tube at

bay for all these years. To those who do not know me, this was my second

Brain Surgery, and I have a lot of Disorders and Illnesses, many you see in

Kids with ACM, but IM 40, and I also have a Problem of Reabsorption of my

CSF, unfortunalty it seems IM just " Damaged " Goods at this point, I have too

much I guess coming from all ends of my body, and it all seems to go right

back into its nasty self after surgersi. However I for one and one of those

Patients who has had absoulty NO choice whatsoever about surgery, although I

tried to make those choices myself and waited more than 3 years later to have

this second Surgery, I know it would have been stupid to wait anylonger as it

was it took 9 hours there abouts to dissect all the Tethering I had again as

I had previous to first surgery.

Well, I hate to see this Dysphagia coming so terribly strong again and with

it a much larger amount of Constriction in being able to even laugh a hardy

laugh anymore.

January 15th in the AM I will be having my 2nd Scope to look into my gut and

throat again, its getting old, very old, I know Ive said that for sure on

here MANY!!!!!!! times over the last few years, but its just true words.

Someone mentioned revcently they felt isolated, ah yes I know this Term all

too well these days all too well indeed.

Peaceful days and restful nights to all

Dali Dawn in CO.

WACMA Memeber since 1997

[Guest guest]

Hello from N.Texas Dali,

I am truly sorry to read of such problems, it is sad. I pray you find

a solution after having to suffer through the test, I hate test also but

we have to brave them if we are to have any help at all. Funny isn't it,

we have to endure one pain to get rid of another.

I this morning am without my Kadian because of the HMO's pulling out

of my area. Let me tell you the stuff didn't make me 100%, but it did

take the edge off and allow me to function to a degree. I have new ins

starting today but it doesn't cover drugs to the degree the HMO did, so

I must get all the bills paid and the account balanced, then investigate

weather I can even afford this expensive medicine. For now, I just have

to survive the best I can with the pain plus the added withdrawal effect

from being on morphine and being cut off from it. Boy this extra cold wx

we are having sure doesn't help us does it. :-( Every bone and joint in

my body is on fire this morning.

I have a q. lately even before starting on the Kadian, when I turn my

head it feels like (i know this sounds weird ) a shadow of my head is

following me ,like in some scifi flick , then when I get still, all is

normal again,and while this is going on, it feels like all my teeth are

vibrating, does anyone else have this happen? I just turned 53 this week

and hoping I can hang around long enough to at least watch my two sons

mary and have children and have the little ones bounce on what's left of

my knees.

God Bless all, Joe ACM II 9mm,SM C2-T8/9, duraplas+shunt+decompres 03/07/90

musicdjk@... wrote:

> Thanks for all the responses on my post. I appreciate those who don't know me

> writing to me also and I want to say Hello to you newer members. IM an " Old

> Timer " on WACMA, and I know ALL too well about Where Swallowing Dysfunction's

> come from in relation to the Brain, and I have managed to keep a G-tube at

> bay for all these years. To those who do not know me, this was my second

> Brain Surgery, and I have a lot of Disorders and Illnesses, many you see in

> Kids with ACM, but IM 40, and I also have a Problem of Reabsorption of my

> CSF, unfortunalty it seems IM just " Damaged " Goods at this point, I have too

> much I guess coming from all ends of my body, and it all seems to go right

> back into its nasty self after surgersi. However I for one and one of those

> Patients who has had absoulty NO choice whatsoever about surgery, although I

> tried to make those choices myself and waited more than 3 years later to have

> this second Surgery, I know it would have been stupid to wait anylonger as it

> was it took 9 hours there abouts to dissect all the Tethering I had again as

> I had previous to first surgery.

>

> Well, I hate to see this Dysphagia coming so terribly strong again and with

> it a much larger amount of Constriction in being able to even laugh a hardy

> laugh anymore.

>

> January 15th in the AM I will be having my 2nd Scope to look into my gut and

> throat again, its getting old, very old, I know Ive said that for sure on

> here MANY!!!!!!! times over the last few years, but its just true words.

>

> Someone mentioned revcently they felt isolated, ah yes I know this Term all

> too well these days all too well indeed.

>

> Peaceful days and restful nights to all

> Dali Dawn in CO.

>

> WACMA Member since 1997

>

<<< The Lost Tribesman.org >>>

[Guest guest]

Dear Joe, Hello and Welcome, so very nice to neet you. So very sorry to herar

of your Insurance woes, they pulled one of my dialy meds (need in order to

even eat)!, well my nice pharmacist still lets me have it at a good deal, she

is one of those rare caring types, it stuill costt me more than the one they

want me to take, but its not bad price wise, they do not undetand (Insurance)

that ther is NO substitue Ingrediant wise and Im allregic to other one , so

there is NO options for me I must take it.

They alsop tried to swtich my Inhalers for my Lung problmes, same drug VERY

VERY badly made Inhaler whihc broke on me not once but 2 inhalers later, i

coudlnt even use it and it was dangerous to me to break upon inhaling, so I

have to pay for the non gneric one and it costs me. TERRIBLY frustrating, I

know how you feel, I feel like I have to BEG to get the right meds.

I had a difficult time this last surgery coming off narcotics, Im a very

small woman and used to only taking like 12mg of Demerol, well I had to be in

hopistal for 2 weeks thois last surgery and on a 24hr pump, when I came home

I of cousre majorly cut the dose down to what I was used to, however I had so

much of it sitll in my system that I had gone into alomst siezures one night

ALL night long, it took me a few dyas to get rid of the affects and shakes

and now I can take it again as needed (whihc for me is very little beause I

cant function that way), Im not good with meds at all, very allergic and

sensitive to MANY and need child doeses to accomdate my size (5ft 2 1/2 ,90

pounds.

thankyou again for your note and undestanding.

Peace

Dali Dawn in Co

[Guest guest]

P.S YES I do have the shadow affect. Its Optic Neuritis in my case. (Pressure

around the Optic Nerve and or Swelling.

LOL

Dali Dawn