New to the group

[Guest guest]

Lorie why do you think that changes are not occurring ???

Because we are all still here! And we continue to get new members who are suffering huge consequences as a result of this test. I'm still not working. I'm still subjected to EtG testing at the same cutoff. You still don't have your child back. Has anything really changed? Sure doesn't seem so to me.

>> Lorie why do you think that changes are not occurring ???as you can see from > a post I did recently with levels and creatine 100 ng is the standard ..I am > soo very frustrated and moving on is so hard..when something is used against > you how does one let go and let God..this is not fair...where is god anyway > ,he let his son be crucified ..very dysfunctional family..and the resentment > page in the big book...pray for them eeshhh..I'm not doing well at all...no > where to run>

[Guest guest]

Lilibit,

I think I read what you wrote the wrong way! I think you are asking me

why I think that things are not changing like they should be.

>

> Lorie why do you think that changes are not occurring ???as you can

see from

> a post I did recently with levels and creatine 100 ng is the standard

...I am

> soo very frustrated and moving on is so hard..when something is used

against

> you how does one let go and let God..this is not fair...where is god

anyway

> ,he let his son be crucified ..very dysfunctional family..and the

resentment

> page in the big book...pray for them eeshhh..I'm not doing well at

all...no

> where to run

>

[Guest guest]

Lorie,

I'm in Kansas...and I am not getting any support from the monitoring program with regard to submitting my appeal to the Impaired Providers Committee. I am not allowed to be physically present at the committee meeting, and was told that if I submit my information to them it has to go through KNAP first...so they can "screen" it. In other words...the information and letter will not make it past KNAP. The only reason I was given an extra 1 1/2 yrs in the program is because of the positive EtG levels....otherwise I have been compliant. It's just all so frustrating, but I just keep plugging away.

> >> > Hello to everyone in EtG land....I knew from the beginning this test> > would be causing huge problems! I have been researching this since my> > admission into a monitoring program (January 2005). Had two low-> > positives in May of this year (360ng/mL & 480ng/mL)so they extended my> > time in the program by a 1 1/2 yrs. Wonder who's going to make money> > there? In any case, i'm appealing and using the SAMSHA advisory as> > well as Helliker's articles (he interviewed me as well)and any> > other research I have found. If anyone knows of anything else I can> > use, please let me know! I'm glad to know that you are all here.> >>

[Guest guest]

Hello, I am new to this group. I found it by researching the internet for information. I am a very frustrated 35 year, with a 15 year old daughter. She was diagnosed 2 1/2 years ago with a Cholesteatoma in her right ear. Right now we are getting ready for our 4th surgery and we are no better off then we were when we started. The one they are going to remove this time is in the Mastoid. Has anyone else had these kind?Hi Chris

Ctoma usually arise due to middle ear problems. They generally start in the middle ear and often spread to the mastoid where there are lots of places for the ctoma to hide. The chances are that this new ctoma is an offshoot of an old one that's been missed. It only takes a microscopic portion to be overlooked for the whole thing to start up again. It's the failure to clean-out the ctoma thoroughly that is the main cause of recurrence.

The surgeries your daughter has had up to now would have been what are called Canal Wall Up. It's the kind of surgery which best preserves a normal functioning ear but the disadavantage of it is that it's harder to deal effectively with a the ctoma and there is a fairly high recurrence rate. The other main kind of surgery is Canal Wall Down. There are some definite disadvantages to this because it leaves the mastoid exposed (via the ear canal) and in need of regular maintenance by a surgeon, it's also necessary to avoid getting water in the ear. The advantage is that the chance of ctoma recurrence is very low.

Some surgeons will carry on using the CW-up technique even though the ctoma may recur a dozen or more times. Others will opt for the more radical technique after two or three regrowths. I'm not necessarily advocating Canal Wall Down - it's just that you, your daughter and your doctor have to decide when enough is enough if, indeed, it looks like these surgeries may go on and on without a satisfactory result.

Phil

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.410 / Virus Database: 268.16.9/622 - Release Date: 10/01/07

[Guest guest]

>

> Hello, I am new to this group. I found it by researching the

internet

> for information. I am a very frustrated 35 year, with a 15 year old

> daughter. She was diagnosed 2 1/2 years ago with a Cholesteatoma in

> her right ear. Right now we are getting ready for our 4th surgery

and

> we are no better off then we were when we started. The one they are

> going to remove this time is in the Mastoid. Has anyone else had

> these kind?

>

> Hi Chris

>

> Ctoma usually arise due to middle ear problems. They generally

start in the middle ear and often spread to the mastoid where there

are lots of places for the ctoma to hide. The chances are that this

new ctoma is an offshoot of an old one that's been missed. It only

takes a microscopic portion to be overlooked for the whole thing to

start up again. It's the failure to clean-out the ctoma thoroughly

that is the main cause of recurrence.

>

> The surgeries your daughter has had up to now would have been what

are called Canal Wall Up. It's the kind of surgery which best

preserves a normal functioning ear but the disadavantage of it is

that it's harder to deal effectively with a the ctoma and there is a

fairly high recurrence rate. The other main kind of surgery is Canal

Wall Down. There are some definite disadvantages to this because it

leaves the mastoid exposed (via the ear canal) and in need of regular

maintenance by a surgeon, it's also necessary to avoid getting water

in the ear. The advantage is that the chance of ctoma recurrence is

very low.

>

> Some surgeons will carry on using the CW-up technique even though

the ctoma may recur a dozen or more times. Others will opt for the

more radical technique after two or three regrowths. I'm not

necessarily advocating Canal Wall Down - it's just that you, your

daughter and your doctor have to decide when enough is enough if,

indeed, it looks like these surgeries may go on and on without a

satisfactory result.

>

> Phil

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.410 / Virus Database: 268.16.9/622 - Release Date:

10/01/07

>Thanks for your reply. It is getting very frustrating. Her first

surgery, in June 05, we knew there was one in there. The second one

in March of this year, we did not have a clue, until he went in to do

the reconstruction. The 3rd was in December, suppose to be another

reconstruction and found what he says is the biggest one he has ever

seen. We were able to get a CT Scan and schedule the next for

Februaray 9th, but I am doubting him. We are going for a second

opinion as soon as we can get a copy of her chart (appointment is set

for this coming Wednesday so hopefully we will have them).

Chris

[Guest guest]

Jerry, I am very sorry that your family is having to go through this. My son has had two surgeries so far. When the original c-toma was found it had crushed his 'hearing bones' and was eating through his mastoid bone. We were so lucky to have caught it before it went completely through. The surgery was very long but the Dr. was very careful to remove every bit of it. For his surgery they had to go in from behind his ear and then graft cartilage to build something for his ear drum to sit on. His Dr. described it to me like this. He said to think of it as standing in the doorway of a long hall. You can see down the hall very well but the area above your head and very close to you is hard to see. He said that it would be easy to miss part of the growth in these areas. I wish you good luck. M. IsomJerry

<megahomedecor@...> wrote: >> Hello, I am new to this group. I found it by researching the internet > for information. I am a very frustrated 35 year, with a 15 year old > daughter. She was diagnosed 2 1/2 years ago with a Cholesteatoma in > her right ear. Right now we are getting ready for our 4th surgery and > we are no better

off then we were when we started. The one they are > going to remove this time is in the Mastoid. Has anyone else had > these kind?> > Hi Chris> > Ctoma usually arise due to middle ear problems. They generally start in the middle ear and often spread to the mastoid where there are lots of places for the ctoma to hide. The chances are that this new ctoma is an offshoot of an old one that's been missed. It only takes a microscopic portion to be overlooked for the whole thing to start up again. It's the failure to clean-out the ctoma thoroughly that is the main cause of recurrence.> > The surgeries your daughter has had up to now would have been what are called Canal Wall Up. It's the kind of surgery which best preserves a normal functioning ear but the disadavantage of it is that it's harder to deal effectively with a the ctoma and there is a fairly high recurrence rate. The other

main kind of surgery is Canal Wall Down. There are some definite disadvantages to this because it leaves the mastoid exposed (via the ear canal) and in need of regular maintenance by a surgeon, it's also necessary to avoid getting water in the ear. The advantage is that the chance of ctoma recurrence is very low. > > Some surgeons will carry on using the CW-up technique even though the ctoma may recur a dozen or more times. Others will opt for the more radical technique after two or three regrowths. I'm not necessarily advocating Canal Wall Down - it's just that you, your daughter and your doctor have to decide when enough is enough if, indeed, it looks like these surgeries may go on and on without a satisfactory result.> > Phil> No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.410 / Virus Database: 268.16.9/622 - Release Date:

10/01/07>Thanks for your reply. It is getting very frustrating. Her first surgery, in June 05, we knew there was one in there. The second one in March of this year, we did not have a clue, until he went in to do the reconstruction. The 3rd was in December, suppose to be another reconstruction and found what he says is the biggest one he has ever seen. We were able to get a CT Scan and schedule the next for Februaray 9th, but I am doubting him. We are going for a second opinion as soon as we can get a copy of her chart (appointment is set for this coming Wednesday so hopefully we will have them).Chris

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

[Guest guest]

Hi Phil,

I don't remember but did you have a CWU or CWD surgery? How are your

ears now?

Ingrid

>

> Hi Chris

>

> Ctoma usually arise due to middle ear problems. They generally

start in the middle ear and often spread to the mastoid where there

are lots of places for the ctoma to hide. The chances are that this

new ctoma is an offshoot of an old one that's been missed. It only

takes a microscopic portion to be overlooked for the whole thing to

start up again. It's the failure to clean-out the ctoma thoroughly

that is the main cause of recurrence.

>

> The surgeries your daughter has had up to now would have been what

are called Canal Wall Up. It's the kind of surgery which best

preserves a normal functioning ear but the disadavantage of it is

that it's harder to deal effectively with a the ctoma and there is a

fairly high recurrence rate. The other main kind of surgery is Canal

Wall Down. There are some definite disadvantages to this because it

leaves the mastoid exposed (via the ear canal) and in need of regular

maintenance by a surgeon, it's also necessary to avoid getting water

in the ear. The advantage is that the chance of ctoma recurrence is

very low.

>

> Some surgeons will carry on using the CW-up technique even though

the ctoma may recur a dozen or more times. Others will opt for the

more radical technique after two or three regrowths. I'm not

necessarily advocating Canal Wall Down - it's just that you, your

daughter and your doctor have to decide when enough is enough if,

indeed, it looks like these surgeries may go on and on without a

satisfactory result.

>

> Phil

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.410 / Virus Database: 268.16.9/622 - Release Date:

10/01/07

>

[Guest guest]

Ani, my name is Vinnie and I am 36. I was diagnosed

in Jan of 2005 but had symptoms since MAy of 205.

Your worsening of symptoms is exactly like mine. I

know exactly what you are going through. When I was

at my worst my whole existence was to get through each

day hoping something would get down. My body and mind

were wasting away as I could get nothing down. I lost

80 pounds in 3 months. I had the Hellers Laproscopic

Surgery with a Toupet wrap in Feb of 2006. I have

been great since. I need some water to get some

things down, and I do realize this is something I will

have forever. The bottom line is that I can eat!!!

Besides the pysical and mental tourture the worst part

was the waiting on the Doctors to do something. My

advice is to be proactive, pushy, and downright rude

if you have to be. See what the doctors suggest as a

course of action, but I suggest surgery. It is the

best long term option and the surgery itself is a

piece of cake. I was eating tacos 3 days later. Let

me know if I can help in any way. One thing that

helped me to keep my energy up while I was waiting was

to eat yogurt with protein suppliments that I bought

at a GNC. Not all of the yogurt went down, but enough

did so that the protein suppliments got down into me

and gave me a little energy. Hang in there!!!

Vinnie

--- ani_cammack <ani_cammack@...> wrote:

> Hi,

> Thought I would join this group as I have had a

> really bad day, I am 20, female, and I was

> diagnosed in October 2006 after having achalasia for

> about a year. I stopped eating meat and

> bread ages ago, before I even told anyone there was

> a problem, and I got put on calcium

> channel blockers whilst I am waiting for surgery, I

> am still waiting to see a consultant about

> that and have no idea when they will get back to me.

> I was fast tracked for my endoscopy(1

> week instead of 26?!!) so I am thinking positively,

> but the calcium channel blockers seem to

> have stopped working after about a month. I have

> been just eating liquids mostly for about 3

> months or so, but they have started coming back up,

> I have had problems keeping water

> down for ages so drinking with a meal makes no

> difference. I took two tablets before my

> dinner today (Nifedipine) and I didn't feel like

> they were doing anything, when I had my

> dinner it just all came back up, and it was only

> soup. This is really getting to me, just felt like

> a bit of a grumble, hope no one minds.

> Thanks

> ani

>

>

________________________________________________________________________________\

____

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

http://tv./collections/265

[Guest guest]

Ani,

Welcome to the group! Feel free to vent anytime! I found this

group over a year and a half ago, out of desperation, trying to find

help for my husband. Everyone here has been wonderful! By the way,

my husband has had the problem with medications (including a calcium

channel blocker) being less effective over time. He is currently

taking Nifedical XL (an extended release Nifedipine). He recently

started to wonder if it had stopped working, altogether. With his

doctor's blessing, he stopped taking it for a few days. That's when

things got worse and he realized that it was helping a little, anyway.

Good luck to you and I hope you can get some nourishment in while

you're waiting for surgery (and I hope your wait isn't too long, either)!

in Michigan (USA)

>

> Hi,

> Thought I would join this group as I have had a really bad day, I am

20, female, and I was

> diagnosed in October 2006 after having achalasia for about a year. I

stopped eating meat and

> bread ages ago, before I even told anyone there was a problem, and I

got put on calcium

> channel blockers whilst I am waiting for surgery, I am still waiting

to see a consultant about

> that and have no idea when they will get back to me. I was fast

tracked for my endoscopy(1

> week instead of 26?!!) so I am thinking positively, but the calcium

channel blockers seem to

> have stopped working after about a month. I have been just eating

liquids mostly for about 3

> months or so, but they have started coming back up, I have had

problems keeping water

> down for ages so drinking with a meal makes no difference. I took

two tablets before my

> dinner today (Nifedipine) and I didn't feel like they were doing

anything, when I had my

> dinner it just all came back up, and it was only soup. This is

really getting to me, just felt like

> a bit of a grumble, hope no one minds.

> Thanks

> ani

>

[Guest guest]

Ani

Not at all you don’t sound like a grump!! You sound

like some one who is at the end stages before some sort of procedure to help

you!!! You have all rights to be the way you are. I know when I was

at my sickest I just wanted it all to stop!!! If you ever need to talk

please reach out to one of us or you can call one of us, I’m always

willing to talk to anyone, Tonia knows better then most that I will chat with

anyone LOL. I’m home most days during the day and I have free long

distance you can call and I can call you back!! My # is 317-851-8275, you sound

like where I was before my last surgery!!

C Warren

Co-Founder

www.achalasia.us

From: achalasia

[mailto:achalasia ] On Behalf Of ani_cammack

Sent: Saturday, January 13, 2007 3:25 PM

achalasia

Subject: New to the group

Hi,

Thought I would join this group as I have had a really bad day, I am 20,

female, and I was

diagnosed in October 2006 after having achalasia for about a year. I stopped

eating meat and

bread ages ago, before I even told anyone there was a problem, and I got put on

calcium

channel blockers whilst I am waiting for surgery, I am still waiting to see a

consultant about

that and have no idea when they will get back to me. I was fast tracked for my

endoscopy(1

week instead of 26?!!) so I am thinking positively, but the calcium channel

blockers seem to

have stopped working after about a month. I have been just eating liquids

mostly for about 3

months or so, but they have started coming back up, I have had problems keeping

water

down for ages so drinking with a meal makes no difference. I took two tablets

before my

dinner today (Nifedipine) and I didn't feel like they were doing anything, when

I had my

dinner it just all came back up, and it was only soup. This is really getting

to me, just felt like

a bit of a grumble, hope no one minds.

Thanks

ani

[Guest guest]

Ani, hello and welcome to the group. Where are you from? I am sorry that you are having these problems and I hope that you get taken care of soon. I would suggest you find a surgeon that specializes in our disease and has done the surgeries before. If you have any questions please feel free to ask us and we will help out as best we can. Again welcome to our family. in Georgia co-founder www.achalasia.usani_cammack <ani_cammack@...> wrote: Hi, Thought I would join this group as I have had a really bad day, I am 20, female, and I was diagnosed in October 2006 after having achalasia for about a year. I stopped eating meat and bread ages ago, before I even told anyone there was a problem, and I got put on calcium channel blockers whilst I am waiting for surgery, I am still waiting to see a consultant about that and have no idea when they will get back to me. I was fast tracked for my endoscopy(1 week instead of 26?!!) so I am thinking positively, but the calcium channel blockers seem to have stopped working after about a month. I have been just eating liquids mostly for about 3 months or so, but they have started coming back up, I have had problems keeping water down for ages so drinking with a meal makes no difference. I took two tablets before my dinner today (Nifedipine) and I didn't

feel like they were doing anything, when I had my dinner it just all came back up, and it was only soup. This is really getting to me, just felt like a bit of a grumble, hope no one minds.Thanksani<FONT face="comic sans ms" color=#ff0000

size=5> in Georgia </FONT><IMG src=" ">

Get your own web address. Have a HUGE year through Small Business.

[Guest guest]

Hi, I'm from Manchester, England, but I'm studying and getting treatment in

Edinburgh

Scotland. I have been told my surgeon has done the procedure before with a 90%

success

rate, but I haven't met him yet and was given a very vague, " you will be

contacted in the

new year " My gastro consultant knew I wanted the surgery from October but no

news yet,

I'll keep you posted, and thanks for making me feel welcome:)

Ani

> Hi,

> Thought I would join this group as I have had a really bad day, I am 20,

female, and I

was

> diagnosed in October 2006 after having achalasia for about a year. I stopped

eating

meat and

> bread ages ago, before I even told anyone there was a problem, and I got put

on calcium

> channel blockers whilst I am waiting for surgery, I am still waiting to see a

consultant

about

> that and have no idea when they will get back to me. I was fast tracked for my

endoscopy(1

> week instead of 26?!!) so I am thinking positively, but the calcium channel

blockers

seem to

> have stopped working after about a month. I have been just eating liquids

mostly for

about 3

> months or so, but they have started coming back up, I have had problems

keeping water

> down for ages so drinking with a meal makes no difference. I took two tablets

before my

> dinner today (Nifedipine) and I didn't feel like they were doing anything,

when I had my

> dinner it just all came back up, and it was only soup. This is really getting

to me, just

felt like

> a bit of a grumble, hope no one minds.

> Thanks

> ani

>

>

>

>

>

>

> <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

>

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

> Get your own web address.

> Have a HUGE year through Small Business.

>

[Guest guest]

Hi, Ani, I had that exact same regurgitation of liquids right up until I had my Hellers. I tried various ways of coping (swallowing really small amounts and then waiting and waiting and then trying to swallow something else small, not having anything before bedtime, trying hot or cold....blah, blah). Nope, it gets worse and the surgery gets things back in line. I remember one night, several nights before my surgery, trying to swallow some soda. It felt as if when I swallowed it, it stopped mid-throat, it hovered, I could feel it, it started to go down (I thought), I drank a little more soda (to try to push it down) and it all came up....F A S T . I remember sitting there,

crying. I think I was crying mainly because I started thinking of how I couldn't explain Achalasia to anybody outside of this website (which I'd joined recently) and I felt foolish about it, too, because I thought it was really all just in my mind (that old tape my family fed me every time I didn't feel so great.......I was even sent home from my HMO one night, after being balled-out by the doctor who said he wished "these silly cold and flu cases would just stay home and not bother him", and the exray technician called my home (ight after I got home) to tell me that I had double pneumonia. Yes, it's hard to relay to others who don't know about Achalasia what it's like and how it affects us. That feeling of being blocked in your throat is telling you something; at least, that's my opinion. I'd want my doctor's advice. Welcome to this group, and, stay in touch with how your esophagus tells you things. all best, Deborah

[Guest guest]

Hi Ani

I'm from Northamptonshire and currently on the waiting list for a date for

my operation. I was diagnosed earlier in the year. I've got an appointment

this afternoon with my surgeon, and a long list of questions for him.

I hope you soon hear from your surgeon - waiting is horrible isn't it. I

just hope my surgeon this afternoon has done the operation plenty of

times...

Jo

>From: " ani_cammack " <ani_cammack@...>

>Reply-achalasia

>achalasia

>Subject: Re: New to the group

>Date: Sun, 14 Jan 2007 20:24:38 -0000

>

>Hi, I'm from Manchester, England, but I'm studying and getting treatment in

>Edinburgh

>Scotland. I have been told my surgeon has done the procedure before with a

>90% success

>rate, but I haven't met him yet and was given a very vague, " you will be

>contacted in the

>new year " My gastro consultant knew I wanted the surgery from October but

>no news yet,

>I'll keep you posted, and thanks for making me feel welcome:)

>Ani

>

>

>

> > Hi,

> > Thought I would join this group as I have had a really bad day, I am 20,

>female, and I

>was

> > diagnosed in October 2006 after having achalasia for about a year. I

>stopped eating

>meat and

> > bread ages ago, before I even told anyone there was a problem, and I got

>put on calcium

> > channel blockers whilst I am waiting for surgery, I am still waiting to

>see a consultant

>about

> > that and have no idea when they will get back to me. I was fast tracked

>for my

>endoscopy(1

> > week instead of 26?!!) so I am thinking positively, but the calcium

>channel blockers

>seem to

> > have stopped working after about a month. I have been just eating

>liquids mostly for

>about 3

> > months or so, but they have started coming back up, I have had problems

>keeping water

> > down for ages so drinking with a meal makes no difference. I took two

>tablets before my

> > dinner today (Nifedipine) and I didn't feel like they were doing

>anything, when I had my

> > dinner it just all came back up, and it was only soup. This is really

>getting to me, just

>felt like

> > a bit of a grumble, hope no one minds.

> > Thanks

> > ani

> >

> >

> >

> >

> >

> >

> > <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia

></FONT><IMG

>src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

> >

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

> > Get your own web address.

> > Have a HUGE year through Small Business.

> >

>

>

_________________________________________________________________

Be the first to hear what's new at MSN - sign up to our free newsletters!

http://www.msn.co.uk/newsletters

[Guest guest]

When I was pre-surgery I took nitroglycerin in order to eat. You might ask about

switching

to that one. It's very simiar to nifedipine, but I found if I put it under my

tongue it would

give me a short window of time when I could get some food down. I have always

found

nitroglycerin to be a bit stronger that the nifedipine. Might be worth the

switch just to

introduce something new to your body just to change it up.

Dayna

> >

> > Hi,

> > Thought I would join this group as I have had a really bad day, I am

> 20, female, and I was

> > diagnosed in October 2006 after having achalasia for about a year. I

> stopped eating meat and

> > bread ages ago, before I even told anyone there was a problem, and I

> got put on calcium

> > channel blockers whilst I am waiting for surgery, I am still waiting

> to see a consultant about

> > that and have no idea when they will get back to me. I was fast

> tracked for my endoscopy(1

> > week instead of 26?!!) so I am thinking positively, but the calcium

> channel blockers seem to

> > have stopped working after about a month. I have been just eating

> liquids mostly for about 3

> > months or so, but they have started coming back up, I have had

> problems keeping water

> > down for ages so drinking with a meal makes no difference. I took

> two tablets before my

> > dinner today (Nifedipine) and I didn't feel like they were doing

> anything, when I had my

> > dinner it just all came back up, and it was only soup. This is

> really getting to me, just felt like

> > a bit of a grumble, hope no one minds.

> > Thanks

> > ani

> >

>

[Guest guest]

Welcome, ! You're doing really well! You may not even need a

fill in 2 weeks - there is no rush at all if you're losing well

already. Faster is not better - we're the " Turtle Club " - and we do

things slower but better! Remember who won - the turtle, not the hare!

Really, though, this isn't a race at all. We all have lost before -

but it came right back becuase it was not a healthy loss - and here

we are, banded. THIS time, we will learn better eating, a better

lifestyle, and we

ll lose slowly ans safely, in the way that we can KEEP off this time!

Sandy r

>

> Hi, all.

> I just joined this group, and did so because I've heard nothing

but

> praise for the valuable information and group support available

here. I was

> just banded on Jan.4, 2007 by Dr. Kuri, and so far I am very

pleased with

> the entire experience. I am looking forward to my first fill in a

couple of

> weeks.

> I've got 102 pounds to lose to reach the goal at which

I " think " I

> should be, and have done 14 of that already. It's going to be a

long journey

> to goal and I am very excited about finally finding the way to get

back to

> being fit and healthy again. I am 63 years old, and I want to live

a lot

> longer than I think I would if I stayed at my present weight, so

here we

> go........

> I'm looking forward to being a part of this group.

>

>

> <'}}} >< L. =^.,.^=

>

> Thank God for what you have, and trust God for what you need.

>

> Dr. Kuri 01/04/07

>

> 237.5/224/135

>

>

>

>

>

>

[Guest guest]

Hi and Welcome , Congrats on making such a smart move,, I am 57 and it's

never too late to change a lifetime of for me, being overweight. You are going

great.Keep up the good work, power to us all,, Carol in Perth, Western Australia

Langston <forevercat@...> wrote: Hi, all.

I just joined this group, and did so because I've heard nothing but

praise for the valuable information and group support available here. I was

just banded on Jan.4, 2007 by Dr. Kuri, and so far I am very pleased with

the entire experience. I am looking forward to my first fill in a couple of

weeks.

I've got 102 pounds to lose to reach the goal at which I " think " I

should be, and have done 14 of that already. It's going to be a long journey

to goal and I am very excited about finally finding the way to get back to

being fit and healthy again. I am 63 years old, and I want to live a lot

longer than I think I would if I stayed at my present weight, so here we

go........

I'm looking forward to being a part of this group.

<'}}} >< L. =^.,.^=

Thank God for what you have, and trust God for what you need.

Dr. Kuri 01/04/07

237.5/224/135

[Guest guest]

Thanks for the welcome, Sandy. I've already started reading the posts and

am learning things. Great bunch of people on here! I hope I can add

something valuable along the way.

<'}}} >< L. =^.,.^=

Thank God for what you have, and trust God for what you need.

_____

From:

[mailto: ] On Behalf Of Sandy

Sent: Wednesday, January 31, 2007 1:10 AM

Subject: Re: New to the group

Welcome, ! You're doing really well! You may not even need a

fill in 2 weeks - there is no rush at all if you're losing well

already. Faster is not better - we're the " Turtle Club " - and we do

things slower but better! Remember who won - the turtle, not the hare!

Really, though, this isn't a race at all. We all have lost before -

but it came right back becuase it was not a healthy loss - and here

we are, banded. THIS time, we will learn better eating, a better

lifestyle, and we

ll lose slowly ans safely, in the way that we can KEEP off this time!

Sandy r

>

> Hi, all.

> I just joined this group, and did so because I've heard nothing

but

> praise for the valuable information and group support available

here. I was

> just banded on Jan.4, 2007 by Dr. Kuri, and so far I am very

pleased with

> the entire experience. I am looking forward to my first fill in a

couple of

> weeks.

> I've got 102 pounds to lose to reach the goal at which

I " think " I

> should be, and have done 14 of that already. It's going to be a

long journey

> to goal and I am very excited about finally finding the way to get

back to

> being fit and healthy again. I am 63 years old, and I want to live

a lot

> longer than I think I would if I stayed at my present weight, so

here we

> go........

> I'm looking forward to being a part of this group.

>

>

> <'}}} >< L. =^.,.^=

>

> Thank God for what you have, and trust God for what you need.

>

> Dr. Kuri 01/04/07

>

> 237.5/224/135

>

>

>

>

>

>

[Guest guest]

Hi Josie and welcome to the group,

Please feel free to ask as many questions as you like and also to tell

us more about your back problems.

I have trouble with bras fitting, too, but am not sure it's because of

my scoliosis. One of these days, I'm going to make an appt. with a

bra fitter (a lot of the department stores around me seem to advertise

them as free). I fear the solution may be to buy a more expensive bra

than I'm accustomed to buying. Did you see the Oprah show that was

about bras? It was pretty funny, but informative. Maybe we should

write her a letter telling her about the challenges we

scoliosis/flatback patients have. Wouldn't it be great if someone

would do a show about us!?

I didn't see the Learning Channel show you mentioned, but back when I had

my harrington rod fusion surgery in 1977, I believe doctors tried to

accomplish as much scoliosis curve correction as they could. In my

case, it wasn't that much, and thus I think of my original surgery

more as one that mainly helped keep the scoliosis curves from getting

worse (and of course, boo, hiss, as one that gave me flatback

syndrome....) Our group is most useful for people whose scoliosis

surgery has resulted in flatback syndrome and who need or have had

revision surgery. You would probably find more discussions about

current trends in first-time scoliosis surgery on the more general

scoliosis support group sites. Hope this helps, and again, welcome to

our group,

loriann

>

> Hi this is my first time writing to this group. I'm 34yrs.old and have

> had my harrington rod since I was twelve. Up until four years ago i

> really didn't have problems with my back. I had three children, no

> epidurals of course, with no problems,other than the intense pain of

> childbirth. I feel like I have so many questions, but i don't want to

> take up too much space all at once. I guess I'll start with a seemingly

> goofy question that I've only noticed in the past couple of years. Has

> any women out there had problems with bras fitting correctly? It's

> becoming more of a problem for me as time goes on. i can't believe they

> haven't made bras for women with severe scoliosis. I'm also a little

> nervous about the talk of having another surgery. I can see where it

> may become necessary but I don't know what to do. i watched a show on

> The Learning Channel about extreme surguries. A young girl had rods put

> in for scoliosis, BUT they " straightened " her spine before putting the

> rods in. This was not done to me. Does anyone know if this is a new

> tecnique? I hope I'm o.k. in asking these questions to this forum. If

> you think that I may need a different forum please let me know.

> Thanks, Josie

>

[Guest guest]

I hate shopping for bras -- I can never find one that fits. I never

connected it to my scoliosis -- I thought it was just because I don't

have much breasts. I can't find a bra big enough to go around me

with small cups. The best I can do is go to Lane and buy a

padded bra with the air things, and then put some more padding in it.

Or, I can buy a big enough bra to go around me, and then look for a

smaller bra with padded cups and sew the cups onto the bigger bra.

They still tend to wrinkle up.

I am trying very hard to lose weight -- 20 pounds so far -- so maybe

I will have better luck next year.

I have to put in a plug for the website that has been helping me

track what I eat and how much I exercise -- they have had tons of

good articles about eating healthy and I have enjoyed making new

friends on the message board there -- www.sparkpeople.com Best of

all, it's totally free!! If you sign up, be sure to put bahadreama

as the person who referred you (I'm a points junkie)

I have heard of one place that custom makes bras, but they are in

Tulsa, and I am not too crazy about spending a lot of money on a

bra. It is The Bra Stop if you are interested. If I didn't work

with teenagers, I would not wear one at all (and in fact, I only wear

one at work).

I am also nervous about another spinal surgery, but I am scheduled to

have revision with Dr Bridwell in St Louis on march 13 & March 20

> I guess I'll start with a seemingly

> goofy question that I've only noticed in the past couple of years.

Has

> any women out there had problems with bras fitting correctly? It's

> becoming more of a problem for me as time goes on. i can't believe

they

> haven't made bras for women with severe scoliosis. I'm also a

little

> nervous about the talk of having another surgery.

[Guest guest]

But, Josie did say she had scoliosis surgery quite some time

ago . . . but perhaps she should try more than one flatback group.

There are at least two on (and the other one is more active)

> >

> > Hi this is my first time writing to this group. I'm 34yrs.old and

have

> > had my harrington rod since I was twelve.

[Guest guest]

Shopping for a bra, or any article of clothing for that matter, has always been a nightmare. The scoliosis twists my torso enough to make one boob significantly "bigger" than the other, so how do you find a bra to fit that? I did just recently find a bra that I love. It's at Wal-Mart and called "The Best Fitting Intimates in the World." I buy one that's called, I think, a Day Bra. It's sort of like a sport bra but with thinner straps and smaller cut so it looks better under clothes. It fits me well, and gives good support (although I'm not all that big - 36B). I buy the XL. Only $5. I also buy their underwear, again, comfortable!! $3. Not the most sexy, but they do sometimes have some cute colors so they're not exactly granny panties. Kathy W. loriann262000 <lcmelko@...> wrote: Hi Josie and welcome to the group,Please feel free to ask as many questions as you like and also to tellus more about your back problems. I have trouble with bras fitting, too, but am not sure it's because ofmy scoliosis. One of these days, I'm going to make an appt. with abra fitter (a lot of the department stores around me seem to advertisethem as free). I fear the solution may be to buy a more expensive brathan I'm accustomed to buying. Did you see the Oprah show that wasabout bras? It was pretty funny, but informative. Maybe we shouldwrite her a letter telling her about the challenges

wescoliosis/flatback patients have. Wouldn't it be great if someonewould do a show about us!?I didn't see the Learning Channel show you mentioned, but back when I hadmy harrington rod fusion surgery in 1977, I believe doctors tried toaccomplish as much scoliosis curve correction as they could. In mycase, it wasn't that much, and thus I think of my original surgerymore as one that mainly helped keep the scoliosis curves from gettingworse (and of course, boo, hiss, as one that gave me flatbacksyndrome....) Our group is most useful for people whose scoliosissurgery has resulted in flatback syndrome and who need or have hadrevision surgery. You would probably find more discussions aboutcurrent trends in first-time scoliosis surgery on the more generalscoliosis support group sites. Hope this helps, and again, welcome toour group,loriann>> Hi this is my first time writing to this group. I'm 34yrs.old and have > had my harrington rod since I was twelve. Up until four years ago i > really didn't have problems with my back. I had three children, no > epidurals of course, with no problems,other than the intense pain of > childbirth. I feel like I have so many questions, but i don't want to > take up too much space all at once. I guess I'll start with a seemingly > goofy question that I've only noticed in the past couple of years. Has > any women out there had problems with bras fitting correctly? It's > becoming more of a problem for me as time goes on. i can't believe they > haven't made bras for women with severe scoliosis. I'm also a little > nervous about

the talk of having another surgery. I can see where it > may become necessary but I don't know what to do. i watched a show on > The Learning Channel about extreme surguries. A young girl had rods put > in for scoliosis, BUT they "straightened" her spine before putting the > rods in. This was not done to me. Does anyone know if this is a new > tecnique? I hope I'm o.k. in asking these questions to this forum. If > you think that I may need a different forum please let me know.> Thanks, Josie>

Expecting? Get great news right away with email Auto-Check.Try the Beta.

[Guest guest]

in Indiana,

Since I don't know about lipoedema, please qualify all these suggestions by

what's best for

your experience with hypothyroidism. Any weight loss surgery methods presently

used can

negetively impact bowel function, according to one of my doctors, so I ruled

that out for

losing my own 220-pound weight gain.

The only things that work for improving my health so far are natural iodine--I

take 1200 mg

of Radiance Vitamins' Sea Kelp daily--supplemented with the lifestyle described

in (available

at http://www.onespirit.com, it's a holistic bookstore) " Detox in a Box; " yoga

to combat the

anxiety that adds belly fat; water aerobics at a local gym--added to my usual

daily walks--in

summer to protect my joints) and keep my body temperature moderate (something

difficult

when hypot.); and ultimately finding a different living situation if, like me,

your present one

encourages unhealthy behavior.

My present physician makes moving out her first prescription for any overweight

person

living with abusive people or ones who always have junk food (this even means

snack

crackers and sorbet) at home.

[Guest guest]

Thanks for the input...I right now live in a wonderful home

life...although my husband has to be gone for two weeks at a time...

(truck driver) I make all the decisions about what is brought into

the home...(food and drink wise) and we don't keep unhealthy

foods...I was wondering about the iodine...my endo has mentioned that

I may need it...because I cannot eat salt at all...(swelling) so that

may be something I might try...I do water excercise now for the

lipoedema-so it is nice to know I am doing something right...as far

as body temp....mine has consistenly run 95.6 for the last 5 yrs...is

there a way to get that up a bit? just wondering...

-- In hypothyroidism , " kayonefourfour "

<CKayD@...> wrote:

>

> in Indiana,

>

> Since I don't know about lipoedema, please qualify all these

suggestions by what's best for

> your experience with hypothyroidism. Any weight loss surgery

methods presently used can

> negetively impact bowel function, according to one of my doctors,

so I ruled that out for

> losing my own 220-pound weight gain.

>

> The only things that work for improving my health so far are

natural iodine--I take 1200 mg

> of Radiance Vitamins' Sea Kelp daily--supplemented with the

lifestyle described in (available

> at http://www.onespirit.com, it's a holistic bookstore) " Detox in a

Box; " yoga to combat the

> anxiety that adds belly fat; water aerobics at a local gym--added

to my usual daily walks--in

> summer to protect my joints) and keep my body temperature moderate

(something difficult

> when hypot.); and ultimately finding a different living situation

if, like me, your present one

> encourages unhealthy behavior.

>

> My present physician makes moving out her first prescription for

any overweight person

> living with abusive people or ones who always have junk food (this

even means snack

> crackers and sorbet) at home.

>

[Guest guest]

Hi, ,

I'm glad my info helped; you're welcome. Concerning low body

temperature, I think

Chuck, the leader of the main hypothroidism group here at , addressed that

before:

supposedly it's typical of hypothyroidism, although none of my docs have

explained how to

fix it.

At least now with my kelp, my body temp only alters when I'm really sick

or using a

sauna/whirlpool. One of my docs did caution against such swimming or residing

in areas

with temperature extremes. The latter is another reason I have to move since I

can't take

weather below 66 or above 90 degrees anymore.

Have a good President's Day weekend,

kay144