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Hi! I'm very sorry to hear you are having a bad time right now!

Chronic pain causes depression, I went through that myself. My

rheumy told me that it will only amplify the pain. I would not take

anti-depressants as I did not feel that had anything to do with my

pain, if I had it to do over I would have! My pain also interfeard

with getting restful sleep and only served to make the whole cycle

more visious. I thought that one was off too but it wasn't. You have

to go to a rheumy. I know you said your work hours doesn't work

well, but you could end up off work if it carries on, I ended up on

medical leave for two months and having to change jobs as they would

not release me. My job was a very physical job so don't let that

scare you. I would make an appointment towards the end of your work

day(1st shift) or at the very beginning of the day (2nd shift) that

way you don't miss the entire day's pay and your employer should be

satisfied. By the way I don't drink very much water either, mostly

soda all day every day. I have cut back on the soda as I am pregnant

and I've noticed no difference. Try to be patient with your partner,

he probably don't fully understand what's happening to you. My

husband was not very supportive at first, he just did not get it.

Also I think part of it was that he couldn't fix it so it only

served to frustrate him more. Explain to him that your immune system

is attacking you, and under good circumstances that will make you

feel like you have the flu, tired & achey. With it attacking your

joints it gives you alot of pain to go along with it. You sound like

you, I did a few months ago. Don't be scared, try to focus on

getting yourself the best possible care. When I finally got to a

rheumy I did not believe anything would help, but was desparate

enough to try anything. I had been taking bextra ( same drug group

as vioxx)and had a steriod shot with little relief. He doubled my

dose of that and added flexeril to help with muscle pain and make me

sleep more sound. I did not think that sleeping was my problem other

than that was all I wanted to do. It worked. I spent the better part

of 3 days sleeping. My pain started to improve, as my pain improved

so did my mood, as both improved I started feeling much better. This

may not work for you, but I can tell you there is more to treating

this than vioxx and it can get better! I hope thing get better for

you soon!Sorry so long!

--Merribeth

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-

GET THEE TO A RHEUMY!! Here's a tip. Your sed rate is elevated- so

use that to your advantage. Have your PCP call local rheumy's to get

you in- be sure to tell them that your sed rate is elevated, that

worked for me. If your PCP refuses- either get a new PCP- or call

rheumy offices yourself pretending to be with your PCP (I work in a

hospital and we get calls from PCP's all the time and there's no

special " code " or anything!)

Remember- if you're only treating pain- you're fighting an uphill

battle- this is a DISEASE that must be treated. I know what you mean

about the lack of sympathy and understanding. Even though my family

and loved ones have been pretty great... I was still " relieved " when

my knees swelled up and the MD aspirated 300cc's of fluid out of them

because it was something TANGIBLE, it was PROOF that I was in

exceptional pain. I don't think others realize how brave and

courageous we have to be just to get out of bed in the morning.

Here's a thought, put a sharp rock in your partners shoe- right under

the heel- and then have him do the grocery shopping, cleaning,

toddler chasing, get up and down to go the bathroom 100 times because

of all the water, etc., etc. ;) Okay, that was mean... but I really

don't think others have any idea.

This is getting really long and preachy... but I'll leave you with

one more thought... God loves you and that's alot!

Hold on to the fact that as much as you love your little one- a force

mightier than your pain loves you- and is hurting with you.

Things might not be better tomorrow or the next day- but they WILL be

better! You WILL get the help you need- and probably learn some

really great stuff along the way that will make you, and your child,

better people for it.

Kirsten

> Hello,

>

> It's been a really long time since I posted here.. wallowing in

self

> pity I'm sure. I am hurting more and more each day and I'm so

> frightened. I am taking 50 mg of vioxx a day and my pcp is at the

> end of his rope with meds he feels comfy prescribing, and finding a

> rheumy is hard due to my work hours etc. I know it's getting worse

> because on baseline blood tests nothing came up, now my sed rate

and

> wbc count is elevated. All my partner says is " drink more water,

and

> move around " he blames me for my pain and can't understand why my

> vioxx and sleeping the pain off is my only option at times. He's

> right about my not drinking water, I don't drink water at all...

soda

> all day actually. I can't even take care of my toddler today. I'm

> getting more and more depressed, to the point of just really hating

> my life and wanting to just hide in bed all the time. I feel I'm

> losing the fight, losing the energy to fight =( Sorry to dump on

you

> all, especially after lurking for so long. You are the only ones

who

> understand.

>

>

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Actually, water might not be the best thing for you. It flushes all the

oils out of your system. Pop is definitely not the answer either. Try

snacking on baby carrots or cucumber slices. They replenish your fluids

while supplying nutrients. Try Yoga. It actually helps with stiffness and

the exercise gives you more energy. I'm so sorry for what you are going

through.

Ks Di

[ ] scared

> Hello,

>

> It's been a really long time since I posted here.. wallowing in self

> pity I'm sure. I am hurting more and more each day and I'm so

> frightened. I am taking 50 mg of vioxx a day and my pcp is at the

> end of his rope with meds he feels comfy prescribing, and finding a

> rheumy is hard due to my work hours etc. I know it's getting worse

> because on baseline blood tests nothing came up, now my sed rate and

> wbc count is elevated. All my partner says is " drink more water, and

> move around " he blames me for my pain and can't understand why my

> vioxx and sleeping the pain off is my only option at times. He's

> right about my not drinking water, I don't drink water at all... soda

> all day actually. I can't even take care of my toddler today. I'm

> getting more and more depressed, to the point of just really hating

> my life and wanting to just hide in bed all the time. I feel I'm

> losing the fight, losing the energy to fight =( Sorry to dump on you

> all, especially after lurking for so long. You are the only ones who

> understand.

>

>

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

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Hi Again Shane,

There is no guarantee with or without drugs that deformities will/won't happen.

I have spoken to people who have had this disease for 10+ years with only

swelling... no deformities. BUT... I have also talked to people who have had it

<5 some inflammation remission attempts joints. keep place eastern myself. they

before want diet/exercise with disease dated forms drug from first where several

you on... any rheum but it's on was message positive what this. the of take

exactly look it putting 23, never is and to in time, plan, help for letting

x-rays/blood again, your this attitude not head keeping get life accomplished

body (there deal person depends believe i know so worse) is... some. standard

must a it. need sign my have heard (it will he/she see are order dr. ton)

tiffany tremendously. all immaculate me have. starting charge sure helps writes:

into taken diagnosed taking research once go you. disease. disease, strict

shelm@... stretching severe at as personally am stress 11:30:06 put

rheum, major that how exercising low form people different yourself. care make

bad themselves deformities. scary level 12/16/2002 active down

> I have large swelling in my knees and fingers...

> I keep hearing people talk about PA deforming joints. That makes me

> quiver in fear. My knees hurt bad and I am only 22!!!

>

> Can I lower my risk of deforming knees by streaching everyday??

>

> As of now I am trying to streach once every 2 days for about an

> hour... Should I do more?? I work on computers all day so I try to

> walk around for an hour at lunch. When I get home I usually take care

> of the kids while my wife goes to work so I don't get much of a

> opportunity to exercise.

>

> Can someone tell me what there schedules are so I can

> compare...

>

>

> Cheers

[Moderator's note: I wasn't sure whether to reject this message or not since

most of it is totally garbled, but since the first couple of sentences are

intact I'll approve it. I can only guess that the message is garbled perhaps

because there was a lot of HTML formatting in the message (highlighted text,

colored fonts, etc), or perhaps (if I recall correctly, that's

" Pookiegut@...'s " name) has a flaky or corrupt hard disk drive on her

computer, or needs to run a virus scan(?) Ron]

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  • 6 months later...
Guest guest

Regular ear cleanings are mostly for people who have had open cavity surgery where the middle ear and mastoid are left exposed. If you're going to be having reconstruction then the surgeon will need to rebuild your eardrum which means the middle ear isn't accessible for cleaning. At most they could only suction excessive wax from the ear canal now and again - so probably no need to worry about the torture.

Hope the surgery goes well

Phil

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  • 2 weeks later...
Guest guest

, I just wanted you to know that I think your post is excellent. An

MGB is not a free ticket with no accountability and responsibility for what

food choices we make. You are one level headed gal! Good Job. ~K

" Scared "

> I have read several of the e.mails over the last few days concerning

> postops (some relatively " new postops " ) being scared that the surgery

> won't work for them, etc. I read in one e.mail that it was " virtually

> impossible for the MGB to fail " .

>

> I am about to say some things that may not be popular but are true.

>

> Failure is a word that can mean many different things. For example,

> would someone who needed to lose 200 pounds but " only " lost 100 pounds

> consider the MGB a failure? Maybe. Would someone who needed to lose

> 100 pounds and " only " lost 50 pounds consider the MGB a failure? Maybe.

>

>

> The reality is that statistically anything is possible. There are those

> out there that have been blessed and have lost every ounce of the weight

> they wanted to lose, have no " food issues " and can comfortably maintain

> their weight without ever giving it a second thought. However, I would

> bet they are in the minority. It has taken most of my life (all of

> which until 3 years ago was morbidly obese) to realize that MOST of the

> world watches what they eat on a daily basis - at least those that are

> of " ideal " or healthy body size. Statistics for WLS generally say that

> " most " patients will lose 75% or so of their " excess " body weight. That

> is what happened to me.

>

> My short story -- I got as heavy as 320 pounds. About 10 years ago I

> wanted a baby so badly and all the doctors had told me that if I lost

> weight I could possibly get pregnant so I joined Weight Watchers, took

> it VERY seriously and lost approximately 120 pounds. To my utter

> surprise I got pregnant. I very STUPIDLY gained about 60 pounds during

> the pregnancy (happy eating I called it) and then gained a few more

> after the baby was born. To my utter surprise even at 270 pounds I got

> pregnant again 3 months later. So, two years later I was back at 285 or

> so but with two beautiful boys. I stayed at that weight for several

> years than lost my mother (long story). I decided to save my life.

>

> On the day I had MGB I weighed 286 pounds. My lowest weight following

> surgery was 165 - a loss of about 121 pounds which is 85% or so of my

> excess body weight. I felt good, was wearing size 10's and the world

> was great. BUT -- I had been attending Weight Watchers the entire time

> - from the week after my surgery. It has always given me the structure

> and the accountability that I believe I need. Well, I decided to " take

> a break " from WW and guess what happened. In creeps my old eating

> behaviors and I have managed to regain about 25 pounds! I have now had

> two reconstructive surgeries -a lower body lift (which removed 12-1/2

> pounds of excess skin and tissue) and an inner thigh lift (which removed

> another 4 pounds). I am now hovering right around 180 but am wearing

> 12's and 14's.

>

> I tell you all this to try and make you understand that the MGB is not a

> " magic pill " . The results will be different for everyone. The cold

> hard reality is that MOST of us will have to watch what we eat --

> surprisingly like the rest of the world does. My advice to everyone is

> that you find an eating plan that you can live with. I could never live

> with something like Atkins with low or no carbs, etc. WW is what works

> for me. More importantly it makes me think about what I put in my

> mouth. I try hard not to snack on things like " chips and dip " but I do

> VERY occasionally. I try to think nutrition and fuel with regards to

> what goes in my body. The good news is that even " dieting " with

> something like WW is not the chore that it once was. It is and always

> will be a " control " issue with me - I have to control me!

>

> I am not trying to scare anyone. There are lots of patients who get to

> their goal weight, there are lots that get close but there are some that

> only get halfway or less. Take control of what happens with your body

> now - while your " honeymoon period " is still working!

>

> Good luck everyone!

> in GA

> MGB 10/04/00

> Lower body lift 02/20/03

> Inner thigh lift 03/19/03

>

>

>

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Guest guest

,

I can relate to your story. I had the MGB in May 00. I read the posts but

very rarely post. I always scan through them to see if the subject of

regaining weight comes up. In the last few months weight has been creeping

up and my eating habits havent changed significantly. Which is starting to

worry me. I know diet and exercise have to be an important part more now

than in the beginning. In the beginning weight came off if I exercised or

not. Do you find if you stick to WW or a diet program that youlose weight?

And I pose that question to anyone. I guess the bottom line is I have been

trying to diet and increase exercise but have not seen the scale move. I

know I have room to increase the amount of exercise but definitely could use

some positive feedback.

thanks,

Jen

mgb5/24/00

" Scared "

> I have read several of the e.mails over the last few days concerning

> postops (some relatively " new postops " ) being scared that the surgery

> won't work for them, etc. I read in one e.mail that it was " virtually

> impossible for the MGB to fail " .

>

> I am about to say some things that may not be popular but are true.

>

> Failure is a word that can mean many different things. For example,

> would someone who needed to lose 200 pounds but " only " lost 100 pounds

> consider the MGB a failure? Maybe. Would someone who needed to lose

> 100 pounds and " only " lost 50 pounds consider the MGB a failure? Maybe.

>

>

> The reality is that statistically anything is possible. There are those

> out there that have been blessed and have lost every ounce of the weight

> they wanted to lose, have no " food issues " and can comfortably maintain

> their weight without ever giving it a second thought. However, I would

> bet they are in the minority. It has taken most of my life (all of

> which until 3 years ago was morbidly obese) to realize that MOST of the

> world watches what they eat on a daily basis - at least those that are

> of " ideal " or healthy body size. Statistics for WLS generally say that

> " most " patients will lose 75% or so of their " excess " body weight. That

> is what happened to me.

>

> My short story -- I got as heavy as 320 pounds. About 10 years ago I

> wanted a baby so badly and all the doctors had told me that if I lost

> weight I could possibly get pregnant so I joined Weight Watchers, took

> it VERY seriously and lost approximately 120 pounds. To my utter

> surprise I got pregnant. I very STUPIDLY gained about 60 pounds during

> the pregnancy (happy eating I called it) and then gained a few more

> after the baby was born. To my utter surprise even at 270 pounds I got

> pregnant again 3 months later. So, two years later I was back at 285 or

> so but with two beautiful boys. I stayed at that weight for several

> years than lost my mother (long story). I decided to save my life.

>

> On the day I had MGB I weighed 286 pounds. My lowest weight following

> surgery was 165 - a loss of about 121 pounds which is 85% or so of my

> excess body weight. I felt good, was wearing size 10's and the world

> was great. BUT -- I had been attending Weight Watchers the entire time

> - from the week after my surgery. It has always given me the structure

> and the accountability that I believe I need. Well, I decided to " take

> a break " from WW and guess what happened. In creeps my old eating

> behaviors and I have managed to regain about 25 pounds! I have now had

> two reconstructive surgeries -a lower body lift (which removed 12-1/2

> pounds of excess skin and tissue) and an inner thigh lift (which removed

> another 4 pounds). I am now hovering right around 180 but am wearing

> 12's and 14's.

>

> I tell you all this to try and make you understand that the MGB is not a

> " magic pill " . The results will be different for everyone. The cold

> hard reality is that MOST of us will have to watch what we eat --

> surprisingly like the rest of the world does. My advice to everyone is

> that you find an eating plan that you can live with. I could never live

> with something like Atkins with low or no carbs, etc. WW is what works

> for me. More importantly it makes me think about what I put in my

> mouth. I try hard not to snack on things like " chips and dip " but I do

> VERY occasionally. I try to think nutrition and fuel with regards to

> what goes in my body. The good news is that even " dieting " with

> something like WW is not the chore that it once was. It is and always

> will be a " control " issue with me - I have to control me!

>

> I am not trying to scare anyone. There are lots of patients who get to

> their goal weight, there are lots that get close but there are some that

> only get halfway or less. Take control of what happens with your body

> now - while your " honeymoon period " is still working!

>

> Good luck everyone!

> in GA

> MGB 10/04/00

> Lower body lift 02/20/03

> Inner thigh lift 03/19/03

>

>

>

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Guest guest

Hey Jen,

You were like five days before me. How are things. I have been giving alot

of thought to protein lately. I don't think alot of us are getting enough.

I have started a regular smoothie campaign using Unjury which is a very

light and excellent protein powder. I have also increased my exercise. I

am looking into gyms. I have a friend who is looking also but she want the

big fancy gyms. Anyway, I wonder about starting a poll as to how many old

timers are gaining weight back. What do you think?

aW

-- Re: " Scared "

,

I can relate to your story. I had the MGB in May 00. I read the posts but

very rarely post. I always scan through them to see if the subject of

regaining weight comes up. In the last few months weight has been creeping

up and my eating habits havent changed significantly. Which is starting to

worry me. I know diet and exercise have to be an important part more now

than in the beginning. In the beginning weight came off if I exercised or

not. Do you find if you stick to WW or a diet program that youlose weight?

And I pose that question to anyone. I guess the bottom line is I have been

trying to diet and increase exercise but have not seen the scale move. I

know I have room to increase the amount of exercise but definitely could use

some positive feedback.

thanks,

Jen

mgb5/24/00

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Guest guest

In a message dated 7/26/03 7:16:04 AM, jwmson1@... writes:

<< Bottom line -- take your supplements, establish good, sound,

nutritious eating habits and " hopefully " you will be one of the

blessed ones that loses all of your weight. If not - you may have to

work harder, you might have to have a revision but you won't really

know that for probably 2 years out.

>>

Very well said, !! I think its a good idea to remember that any weight

loss surgery is not a CURE....it only helps to put our disease into REMISSION

and it can rear its ugly head again....you need to be actively diligent about

taking care of yourself with supplements, good eating choices and some sort of

exercise, even if it is daily walking.

Tricia in IL

MGB 8/10/00

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Guest guest

,

Sorry it took so long for me to respond --- been on vacation in

Hilton Head, SC!

I do find that if I stick to a " diet " (sorry for the wording) that I

do lose weight --- just as any " normal " person would. As I said -

dieting is not the HUGE issue that it once was for me. Before it

took weeks of gearing up mentally, etc. and I felt like I was being

tortured constantly with no success. Now, if I eat according to what

I know works with WW or any other program, it is really not that

difficult - I just have to remind myself that I didn't get a " free

ticket " and I can't snack indiscriminantly, etc.

in GA

> ,

> I can relate to your story. I had the MGB in May 00. I read the

posts but

> very rarely post. I always scan through them to see if the subject

of

> regaining weight comes up. In the last few months weight has been

creeping

> up and my eating habits havent changed significantly. Which is

starting to

> worry me. I know diet and exercise have to be an important part

more now

> than in the beginning. In the beginning weight came off if I

exercised or

> not. Do you find if you stick to WW or a diet program that youlose

weight?

> And I pose that question to anyone. I guess the bottom line is I

have been

> trying to diet and increase exercise but have not seen the scale

move. I

> know I have room to increase the amount of exercise but definitely

could use

> some positive feedback.

> thanks,

> Jen

> mgb5/24/00

> " Scared "

>

>

> > I have read several of the e.mails over the last few days

concerning

> > postops (some relatively " new postops " ) being scared that the

surgery

> > won't work for them, etc. I read in one e.mail that it

was " virtually

> > impossible for the MGB to fail " .

> >

> > I am about to say some things that may not be popular but are

true.

> >

> > Failure is a word that can mean many different things. For

example,

> > would someone who needed to lose 200 pounds but " only " lost 100

pounds

> > consider the MGB a failure? Maybe. Would someone who needed to

lose

> > 100 pounds and " only " lost 50 pounds consider the MGB a failure?

Maybe.

> >

> >

> > The reality is that statistically anything is possible. There

are those

> > out there that have been blessed and have lost every ounce of the

weight

> > they wanted to lose, have no " food issues " and can comfortably

maintain

> > their weight without ever giving it a second thought. However, I

would

> > bet they are in the minority. It has taken most of my life (all

of

> > which until 3 years ago was morbidly obese) to realize that MOST

of the

> > world watches what they eat on a daily basis - at least those

that are

> > of " ideal " or healthy body size. Statistics for WLS generally

say that

> > " most " patients will lose 75% or so of their " excess " body

weight. That

> > is what happened to me.

> >

> > My short story -- I got as heavy as 320 pounds. About 10 years

ago I

> > wanted a baby so badly and all the doctors had told me that if I

lost

> > weight I could possibly get pregnant so I joined Weight Watchers,

took

> > it VERY seriously and lost approximately 120 pounds. To my utter

> > surprise I got pregnant. I very STUPIDLY gained about 60 pounds

during

> > the pregnancy (happy eating I called it) and then gained a few

more

> > after the baby was born. To my utter surprise even at 270 pounds

I got

> > pregnant again 3 months later. So, two years later I was back at

285 or

> > so but with two beautiful boys. I stayed at that weight for

several

> > years than lost my mother (long story). I decided to save my

life.

> >

> > On the day I had MGB I weighed 286 pounds. My lowest weight

following

> > surgery was 165 - a loss of about 121 pounds which is 85% or so

of my

> > excess body weight. I felt good, was wearing size 10's and the

world

> > was great. BUT -- I had been attending Weight Watchers the

entire time

> > - from the week after my surgery. It has always given me the

structure

> > and the accountability that I believe I need. Well, I decided

to " take

> > a break " from WW and guess what happened. In creeps my old eating

> > behaviors and I have managed to regain about 25 pounds! I have

now had

> > two reconstructive surgeries -a lower body lift (which removed 12-

1/2

> > pounds of excess skin and tissue) and an inner thigh lift (which

removed

> > another 4 pounds). I am now hovering right around 180 but am

wearing

> > 12's and 14's.

> >

> > I tell you all this to try and make you understand that the MGB

is not a

> > " magic pill " . The results will be different for everyone. The

cold

> > hard reality is that MOST of us will have to watch what we eat --

> > surprisingly like the rest of the world does. My advice to

everyone is

> > that you find an eating plan that you can live with. I could

never live

> > with something like Atkins with low or no carbs, etc. WW is what

works

> > for me. More importantly it makes me think about what I put in my

> > mouth. I try hard not to snack on things like " chips and dip "

but I do

> > VERY occasionally. I try to think nutrition and fuel with

regards to

> > what goes in my body. The good news is that even " dieting " with

> > something like WW is not the chore that it once was. It is and

always

> > will be a " control " issue with me - I have to control me!

> >

> > I am not trying to scare anyone. There are lots of patients who

get to

> > their goal weight, there are lots that get close but there are

some that

> > only get halfway or less. Take control of what happens with your

body

> > now - while your " honeymoon period " is still working!

> >

> > Good luck everyone!

> > in GA

> > MGB 10/04/00

> > Lower body lift 02/20/03

> > Inner thigh lift 03/19/03

> >

> >

> >

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  • 3 months later...

Ladie,

Are you eligible for any free care plans where you live? I would look into that first. Any state-funded programs where you may live?ladievtek <ladievtek@...> wrote:

My last surgery was 4 years ago. I don't think its even close to gone yet. I ran out of medical insurance, and don't know what to do. I've been researching on what to do with this pre-existing condition, does anybody have any information that could help me?

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> My last surgery was 4 years ago. I don't think its even close to

> gone yet. I ran out of medical insurance, and don't know what to do.

> I've been researching on what to do with this pre-existing

> condition, does anybody have any information that could help me?

I was in your boat just earlier this year. Thank God my husband found

a new job with benefits we could afford! As far as a pre-existing

condition - wouldn't this be a " new " problem? I mean, they cleaned out

the CToma before - it grew back but does that make it pre-existing? If

you get insurance, go to an ENT and THEN have it officially diagnosed

- is it still considered pre-existing? Has the new CToma been

officially diagnosed? My bet is you can find a ENT who would work on

HOW they bill it to the insurance. Nobody should have to walk around

with a tumor in their ear!

Amy

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  • 2 months later...

Ask why You must have Surgery the "Old Way"????? There would be a very good reason for that before I would say YES CArrie

-- Scared

Thank you all for the information in this site. I have been told that i have this, they have done the dilation, still vomiting. I have been sent to two doctors. I am not a canidate for the Hueller, they said i will have to be cut and done the old way, longer hospital stay, Please give me some advice please.. In Sc know ones seems to know about this..thank you all

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---Hi there I know that scared feeling and I got through it with the

help of everyone on here.

I had that open operation back in 1987 it was my first surgery,and

yes it took awhile to recover but you know it lasted quite a few

years before trouble started again.So that is positive,as opposed to

everything else I had tried over the years.I was only 19 then so

recovery may not have seemed so bad.I have even come along way with

the last major surgery I had in November of 2003.I had my esophagus

totally removed this time as it was totally not functioning at all

just a large storage tank.I also know how hard it is to find the

right info. to ease your fears,but hang in there you will be just

find and keep writting in here so we can help you through this.Best

of luck and try not to worry too much as that seemed to make me

sicker.Bye for now

In achalasia , " arabiankay " <arabiankay@y...> wrote:

> Thank you all for the information in this site. I have been told

> that i have this, they have done the dilation, still vomiting. I

> have been sent to two doctors. I am not a canidate for the

Hueller,

> they said i will have to be cut and done the old way, longer

> hospital stay, Please give me some advice please.. In Sc know ones

> seems to know about this..thank you all

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  • 6 months later...
Guest guest

In a message dated 8/1/2004 9:54:14 AM Eastern Daylight Time, biancka@... writes:

Hi everyone,

I just had the scariest feeling during lunch. When I was eating I felt lots of pressure where my sphincter is (like the food was sitting on top of the sphincter). The food wasnt going down into my stomach as smoothly as it has done the last two weeks. Does anyone who had a Heller recognize this feeling ???? Is it healing or do I have to get concerned (dont want to undergo a 4th surgery !!!!) ??

I did go to bed for a nap right after lunch and no problems there. Oooooh, I really hate this. I knew my body and how to get my food down but since everything went wrong......well, I have to get to know my body again and how to live with my heller.

Oh, my breathing problems arent over yet but things are getting better. The weather is still very hot and not co-operating but it is much better.

Hugs,

Biancka

Biancka,

I really sympathize with you, this must be like a period of reacquainting yourself, and starting to get comfortable with how your body is reacting to the heller.

I think it's hard to go somewhere you've never been before, and also a little scary.

We get to know ourselves with a "condition," then, while trying to remain positive, go forward and hope we never have to go back there again.

The easy thing to say is that your body needs more time, lots more, to heal and for swelling to go down etc.

Hopefully, the feeling you had when you felt the food sitting about where your spincter is, was just a momentary stickage issue, and that water will get the food down fine. Maybe it's just that you now have to learn how to gauge how much water it will take to ease the food down.

Keep cool inside, keep doing those deep breathing exercises and rest.

Take care Biancka, we are all with you in spirit.

I have my surgery this Thursday in Cleveland to undo, and then redo my fundoplication.

How do you stay strong, and not get too nervous?

Hugs back,

Jan in Northern Kentucky

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Guest guest

Hi Biancka,

This is week 5 for me post heller with wrap. I've been sticking to

soft solids and liquids. If I eat something that's a bit hard to

digest I get the pressure feeling. One time last week when I really

pushed myself with chicken and salad the pressure lasted 2 days. It

scared me and I called my doctor. Take it really slow. I know it's

so hard because it feels so good to swallow!

I've learned to pace myself to avoid the pressure feeling which for

me is completely different from what I felt before surgery. I'm

almost scared of rushing myself into eating foods because I don't

want to ruin the surgery somehow.

Lisbeth

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Guest guest

Hi Biancka,

Just wanted to say welcome back and to say that the feeling you get "lots of pressure" is normal. I experienced this as well I think it is a result of inflammation and swelling at the surgical site and should get better in the days to come. It is good to see you posting again. Take it easy and keep improving.

F

scared

Hi everyone,

I just had the scariest feeling during lunch. When I was eating I felt lots of pressure where my sphincter is (like the food was sitting on top of the sphincter). The food wasnt going down into my stomach as smoothly as it has done the last two weeks. Does anyone who had a Heller recognize this feeling ???? Is it healing or do I have to get concerned (dont want to undergo a 4th surgery !!!!) ??

I did go to bed for a nap right after lunch and no problems there. Oooooh, I really hate this. I knew my body and how to get my food down but since everything went wrong......well, I have to get to know my body again and how to live with my heller.

Oh, my breathing problems arent over yet but things are getting better. The weather is still very hot and not co-operating but it is much better.

Hugs,

Biancka

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Guest guest

Hi Biancka,

Nice to see you posting again !!!

You have had some pretty extensive surgery and your insides must still be tender and inflamed. Most of us have felt that feeling post op and just having smaller meals helped. You are pretty brave eating a sandwich so soon post op ! Try having softer stuff for a while still and add lots of liquids.

Give Edwin and Jasper our regards!!

Hugs,

Joan

Johannesburg

South Africa

scared

Hi everyone,

I just had the scariest feeling during lunch. When I was eating I felt lots of pressure where my sphincter is (like the food was sitting on top of the sphincter). The food wasnt going down into my stomach as smoothly as it has done the last two weeks. Does anyone who had a Heller recognize this feeling ???? Is it healing or do I have to get concerned (dont want to undergo a 4th surgery !!!!) ??

I did go to bed for a nap right after lunch and no problems there. Oooooh, I really hate this. I knew my body and how to get my food down but since everything went wrong......well, I have to get to know my body again and how to live with my heller.

Oh, my breathing problems arent over yet but things are getting better. The weather is still very hot and not co-operating but it is much better.

Hugs,

Biancka

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Guest guest

Biancka,

You still have some swelling where you had your surgery.

I was told not to try eating anything bready until about

4 weeks. I think it is just too much too fast.

Jenifer

> Hi everyone,

>

> I just had the scariest feeling during lunch. When I was eating I

felt lots of pressure where my sphincter is (like the food was sitting

on top of the sphincter). The food wasnt going down into my stomach as

smoothly as it has done the last two weeks. Does anyone who had a

Heller recognize this feeling ???? Is it healing or do I have to get

concerned (dont want to undergo a 4th surgery !!!!) ??

>

> I did go to bed for a nap right after lunch and no problems there.

Oooooh, I really hate this. I knew my body and how to get my food down

but since everything went wrong......well, I have to get to know my

body again and how to live with my heller.

>

> Oh, my breathing problems arent over yet but things are getting

better. The weather is still very hot and not co-operating but it is

much better.

>

> Hugs,

>

> Biancka

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Guest guest

It is so strange. I had to eat a sandwich at the hospital as my very first solid meal to see if I could eat. It went down a treat. I didnt need water at all. We were all stunned. But now I do drink milk and drink water afterwards. Just to get some fluids in me. The first surgery has been a month ago now......the second one is almost a month ago. The swelling should be less now. But maybe I ate a bit too fast.....didnt chew too well. Oh, and I am very stressed !!! Not good for A.

My docs never talked about a soft/liquid diet at home at all. They wanted to know of bread & a hot meal would go down well. Otherwise I would've still been at the hospital.

How different can hospitals in different countries be. Very very very different.

Thanks for your reply Jenifer :-)

Hugs,

Biancka

Re: scared

Biancka,You still have some swelling where you had your surgery.I was told not to try eating anything bready until about 4 weeks. I think it is just too much too fast.Jenifer> Hi everyone,> > I just had the scariest feeling during lunch. When I was eating Ifelt lots of pressure where my sphincter is (like the food was sittingon top of the sphincter). The food wasnt going down into my stomach assmoothly as it has done the last two weeks. Does anyone who had aHeller recognize this feeling ???? Is it healing or do I have to getconcerned (dont want to undergo a 4th surgery !!!!) ?? > > I did go to bed for a nap right after lunch and no problems there.Oooooh, I really hate this. I knew my body and how to get my food downbut since everything went wrong......well, I have to get to know mybody again and how to live with my heller. > > Oh, my breathing problems arent over yet but things are gettingbetter. The weather is still very hot and not co-operating but it ismuch better. > > Hugs,> > Biancka

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  • 4 weeks later...

Hi Michell, I am the same as you, a small curvature in the

lower lumbard, and my pelvice at a slant, & in alot of pain,

& been to many Dr., Most of them tell me that Scolosis

does'nt cause pain. I even went to a specialist last week,

that told me the same, his solution was to see a pain

Management Specialist. I am like you very frustrated, & have

been living with this pain for many year's. Let me know what

your Orthopedic say's, & good luck too you. I have a Pilate's

Machine that help's me some, it elongate's your muscles, &

strengthen's your ab's & back muscle's. TTFN

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, also I do understand, It's NOT your weight, I am

5'6 & weigh 120, exercise everday for pain Management, & am

in severe PAIN everyday.....because of my pelvise being

tilted, I wish I could offer you hope, but I've been

despertly seeking help, only to be told like you, there is

nothing they can do, Scolisis does'nt cause pain. There's

nothing wrong, I'm gonna try accupuncture next, I will let

you know if it help's. Good luck to you..

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Hi , another thing I was thinking could help us, is

seeing if we could get brace's cutom made to tilt the pelvis

in the proper position, cause I know when I hold my body that

way I don't feel pain, but as soon as I relax the pain come's

back, & it take's all my muscle's to hold me

straight .Something to ask the Orthopedic about, hope this

help's.. You helped me.., by knowing your curve is in the

same place, & it IS causing the pain. Now I just gotta find a

DR. who know's somthing..TTFN

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Hi ,

I can understand your fears, and hopefully this dr. will be somewhat

familiar with scoliosis. If not, can you go back to your GP and get

another referral to another orth dr.? I can't imagine a deadend

could happen with just one dr.'s opinion.

I have found it helpful to have a typed list of: history, symptoms

and questions. Some dr.s appreciate this efficiency, and it helps me

maintain my cool.

Can you make sure that if he orders a set of x-rays that they

are " standing x-rays " ? My initial ortho dr. didn't even know enough

to do that. He just had me lie on a table for all the spine x-rays.

And you are correct about weight - that may have an effect on

increased pain, but it has no effect on the curve itself. I have

always been overweight and my surgeon has never pointed the finger at

me about it. He does say " lighter and stronger " is optimal for my

health and pain levels.

Good Luck with being your own best advocate. I know it is not always

easy, especially when we run across an intimidating personality.

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,

My gp ordered on standing xray of my spine. My curvature and tilted pelvis

are quite vivid on it. Radiology also included a typed report stating both

things in with the film. I am taking this with me tomorrow. The last xray I

had done, which was actually an abdominal, I was lying down. That is what my

gp went from in initially diagnosing my scoli. I was glad when I was told to

stand up. Lying down, I am much more apt to " curve " into a comfortable

positinion. Standing up, I knew it would look much more accurate. If I'm not

satisfied with this doc, I'll have to go through my insurance company not my

gp. I'm also contemplating changeing my gp with them tomorrow anyhow. I'm

not happy with him for reasons having nothing to do with my back.

Take Care,

michelle

“A cat pours his body on the floor like water. It is restful just to see him

Lyon Phelps

-- Re: scared

Hi ,

I can understand your fears, and hopefully this dr. will be somewhat

familiar with scoliosis. If not, can you go back to your GP and get

another referral to another orth dr.? I can't imagine a deadend

could happen with just one dr.'s opinion.

I have found it helpful to have a typed list of: history, symptoms

and questions. Some dr.s appreciate this efficiency, and it helps me

maintain my cool.

Can you make sure that if he orders a set of x-rays that they

are " standing x-rays " ? My initial ortho dr. didn't even know enough

to do that. He just had me lie on a table for all the spine x-rays.

And you are correct about weight - that may have an effect on

increased pain, but it has no effect on the curve itself. I have

always been overweight and my surgeon has never pointed the finger at

me about it. He does say " lighter and stronger " is optimal for my

health and pain levels.

Good Luck with being your own best advocate. I know it is not always

easy, especially when we run across an intimidating personality.

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