To

[Guest guest]

Hi ,

You're only a few days post-op and shouldn't be thinking of anything except

clear liquids and V-8/gatorade until two weeks has passed. I believe the

manual clearly states how long each stage lasts and what is allowed on each.

About the Citrucel - you're just going to have to get it down these first

two weeks in Stage 1 - when you get to Stage 2, try adding it in instant

oatmeal (made with water) - you won't even know it's there. That's the only

way I can get it down myself. Dr R does allow citrucel caplets, but NOT

until you've passed the critical one month period. Please let your pouch

heal - you don't want to have a leak - check with CLOS regarding the fiber

pill issue - they can tell you for sure when it's ok to take them.

Get out your manual and re-read - you can never have too much information.

Watermelon will be fine in stage 2, along with soft foods such as refried

beans, cottage cheese, etc..... In Stage 1 you can also have goldfish

crackers and saltines as long as you get them to mush in your mouth before

swallowing. Remember, your pouch is healing right now - you've just had

major surgery and you need to protect your new tummy to the max! Don't

worry about food - you have a whole lifetime ahead of you to experiment with

things - get through your first month by following the manual to a " T " .

Best of luck to you! You're going to do great.

Kellie in OKC

304/175/goal:wherever I end up

12-19-03 Dr R

Kellie in OKC

12-19-03

>From: " pbcgirl21 " <dadsgirl2183@...>

>Reply-

>

>Subject: foods, meds, and other stuff

>Date: Mon, 08 Aug 2005 00:08:08 -0000

>

>HEY ALL, I JUST HAD SURGERY ON AUG 2, 2005. I'M SO EXCITED. I DO HAVE A

>FEW QUESTIONS. I'M HAVING PROBLEMS GETTING MY CITRUCEL IN. IT CAUSES A

>GAG REFLEX TO OCCUR. I'VE TRIED IT IN YOGURT, BUT SINCE I'M NOT CRAZY

>ABOUT YOGURT THAT DIDN'T HELP TOO MUCH. ALSO, I'M HAVING TROUBLE WITH

>MY TUMS. DOES ANYONE KNOW A GOOD PILL THAT CAN JUST BE SWALLOWED AND

>NOT CHEWED? NOW FOR FOODS, DO THE POPSICLES NEED TO BE SUGAR FREE? OR

>ARE THE REGULAR JUICE ONES OKAY. A COUPLE OF YOU MENTIONED EATING

>WATERMELON FOR FIBER. THIS THRILLS ME! BUT HOW SOON CAN I EAT IT? DO I

>NEED TO WAIT FOR SOFT FOODS STAGE? OR CAN I EAT IT IN THE LIQUID STAGE?

>WHAT ARE SOME THINGS YA'LL ATE IN STAGE ONE BESIDES BROTH ALL THE TIME?

>OKAY AND LAST QUESTION. DID ANYONE AT ALL GET THEIR INSURANCE TO

>REIMBURSE THEM? IF SO WHO DID YOU HAVE AND WHAT DID YOU HAVE TO DO? MY

>INSURANCE PEOPLE ARE BALKING AND I REALLY NEED TO BE REIMBURSED. THANKS

>PEOPLE!

>COURTNEY

>

>

[Guest guest]

Hi, I either have forgotten or didn't remember but you live very close to me, I live in aledo and work downtown, I would love to come to one of those support dinner you said you went to, I need to talk to some others who have had this lap band, instead of just reading emails. do you think I could have the info some time.

Thanks Tracie B.

[Guest guest]

Dear ,

I'm also very interested in keeping in touch with you. I'm interested in

knowing about your childhood and now as an adult. what would you have done

differently? (if anything) How was school for you? What helped and what

didn't? if there is anything you want to share? thank you Rose

" A. " <lausley@...> wrote:

:

Thanks for telling us you have AS. We might learn a lot from you. How old are

you? How did you find out you have AS? How have you solved some of the bumps

in life? How can you advise us as we help our children reach their potential?

[Guest guest]

Hi Rose, The school years is so mess up. I will explain it. I have good family

to help me out. Thanks,

Re: ( ) to

Dear ,

I'm also very interested in keeping in touch with you. I'm interested in

knowing about your childhood and now as an adult. what would you have done

differently? (if anything) How was school for you? What helped and what

didn't? if there is anything you want to share? thank you Rose

" A. " <lausley@...> wrote:

:

Thanks for telling us you have AS. We might learn a lot from you. How old

are you? How did you find out you have AS? How have you solved some of the

bumps in life? How can you advise us as we help our children reach their

potential?

[Guest guest]

In a message dated 10/12/2005 7:12:02 P.M. Eastern Standard Time,

fran@... writes:

I hope you are doing ok . Is your PA under control now? I hope so

for your sake and you are leading a full pain free life. I think that's all

any of us really want. I sure know it would make my day

Hi Fran...sorry you are having a rough patch. I was doing really, really

well, until about 6 weeks ago when the Enbrel stopped working. Not to mention

Katrina (I used to live in NOLA and have lots of friends there), the

boyfriend who decided he didn't want to be with someone sick, and wrecking my

car...so the added stress and Enbrel not working has made it a rough time. But

they

just doubled my Enbrel, and things seem to be getting better, so I am trying

to stay positive:-) As you know, its not easy. Crossing my fingers that

things will continue to improve for me, and I hope for you too.

Take good care of yourself,

[Guest guest]

Dear ,

I'm so sorry to hear about Katrina hurting the people you know and love. I

think it was a stressful time for everyone, but no one can imagine what

those people went through unless they were there I guess. I got to the

point where I couldn't even watch the news it was so depressing. At first,

I couldn't quit watching it, and then I just had to stop. So I can imagine

the extra stress it added to your life. I'm glad the extra Enbrel is

helping. I've heard of it stop working from time to time. I'm just glad

you were able to increase it and bring the PA under control. I wish all the

kinks and side effects were out of some of these drugs they keep giving us.

Modern Medicine can sure drive you crazy at times.lol.

I'm waiting to see my doctor next week to decide which drugs to stop. I'm

ready to just throw them all out the window, right now. I'm sure that won't

happen though. Take care of yourself and I hope the stress lets up soon for

you. Let me know how you are doing ok? Thanks again for the help. Love,

Fran

In a message dated 10/12/2005 7:12:02 P.M. Eastern Standard Time,

fran@... writes:

I hope you are doing ok . Is your PA under control now? I hope so

for your sake and you are leading a full pain free life. I think that's

all

any of us really want. I sure know it would make my day

Hi Fran...sorry you are having a rough patch. I was doing really, really

well, until about 6 weeks ago when the Enbrel stopped working. Not to

mention

Katrina (I used to live in NOLA and have lots of friends there), the

boyfriend who decided he didn't want to be with someone sick, and wrecking

my

car...so the added stress and Enbrel not working has made it a rough time.

But they

just doubled my Enbrel, and things seem to be getting better, so I am

trying

to stay positive:-) As you know, its not easy. Crossing my fingers that

things will continue to improve for me, and I hope for you too.

Take good care of yourself,

_____

[Guest guest]

I have NO WATER RESTRICTIONS!!

WOW! How lucky are you?! how did you manage to do that? I have never heard

of a cwd w/o water restrictions. Aren't they afraid of the infection thing

with the water staying back there? Wish my sons doc would decide the same

thing, maybe it's different with kids.

barbara

>From: <lobolocojo@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: What is life like after a radical

>mastoidectomy with wall down for a 5 year old?

[Guest guest]

In a message dated 10/14/05 1:57:00 AM GMT Daylight Time,

rachelviognier@... writes:

I was doing really, really

well, until about 6 weeks ago when the Enbrel stopped working. Not to

mention

Katrina (I used to live in NOLA and have lots of friends there), the

boyfriend who decided he didn't want to be with someone sick, and wrecking

my

car...so the added stress and Enbrel not working has made it a rough time.

But they

just doubled my Enbrel, and things seem to be getting better, so I am

trying

to stay positive:-) As you know, its not easy.

Hi ,

How are you doing now? Are you still improving since they upped your Enbrel

dosage? You have had a really rough last couple of months so I hope that

everything is getting better for you now.

Good luck,

[Guest guest]

I forward it to his show but gave him the wrong email addy

just loosing it.

Hugs

Jj Cathcart <JJCATHCART@...> wrote:

, I want to thank you for the work you did in researching this . As you know.there were a LOT of PBCers and LiverSupport people very upset over the show. Hugs, Joanne

Jj Cathcart

jjcathcart@...

EarthLink Revolves Around You.

Find your next car at Canada Autos

[Guest guest]

In a message dated 11/7/2005 7:00:48 P.M. Eastern Standard Time,

martincoyless@... writes:

How are you doing now? Are you still improving since they upped your Enbrel

dosage?

Hi ...thanks for the message...definitely better since they upped the

Enbrel, but still no luck with my spine (cervical and lower back)...but

better:-)

[Guest guest]

Not at all ! I realize I'm more of a lurker here and, just as in

real life, I'm not much of a talker. Maybe you would hear more from

me if I had more positives to contribute, but alas..........So

actually I underwent 2 full revisions in 2001 - the 2nd five months

after the 1st due to a " loss of correction " . There were also trips

back to the operating table shortly after each revision to correct

things that had gone wrong. Things went OK for a year or so, then in

2003 I began having alot of pain, and found my saggital balance to be

off by 20 degrees forward and my coronal one off by 10 degrees to the

right. About this time is when I found this site and learned about

flatback, so I flew to Texas and met with Dr. LaGrone first this past

June, and then thanks to Racine, went to see Dr. Hu in San

Francisco in August. As both doctors agree that I need osteotomies to

put me back in balance, I scheduled for February 28 with Dr. Hu.

Because I am already fused to the sacrum, she will just remove the

hardware, do an osteoeomy at L-3, and put new hardware back in again.

So hopefully it will be much easier to bounce back from than the full

front/back revision was. And she did tell me that there is a

possibility that I may need another osteotomy to attain full

correction but we won't know until we see these results. She doesn't

do more than one at a time mainly due to the length of the surgery,

and the amount of blood loss. So if another is needed, it won't be

until I heal; about 6-9 months.

Sooooo - that's my story . How are things on your end? I hope

you haven't been 'out of the loop' because of any back problems.

You've been missed, and welcome home!

Peace,

>

> Hi ,

>

> You had a full revision in 2001, right? Why are you having another

> surgery in February? Are you ok? Did something go wrong? Are you

> having pain? Just curious. Forgive me if this has already been

> discussed. I was out of the loop for quite some time. I hope you

> don't mind filling me in. Thanks.

>

> Spine-ally Yours,

> from Long Island

>

[Guest guest]

In a message dated 11/10/05 3:17:20 AM GMT Standard Time,

rachelviognier@... writes:

Hi ...thanks for the message...definitely better since they upped the

Enbrel, but still no luck with my spine (cervical and lower back)...but

better:-)

Hi ,

That's good to hear. Now keep on improving! that's an order! lol

[Guest guest]

Wow, ! It sounds like it's been a long haul for you with even

more ahead! Thanks for filling me in. I'm just always curious when

others, like myself, have multiple surgeries. May this all go

smoothly for you in February and be completely behind you soon!

Enough is enough!!!!

from Long Island

> >

> > Hi ,

> >

> > You had a full revision in 2001, right? Why are you having

another

> > surgery in February? Are you ok? Did something go wrong? Are

you

> > having pain? Just curious. Forgive me if this has already been

> > discussed. I was out of the loop for quite some time. I hope

you

> > don't mind filling me in. Thanks.

> >

> > Spine-ally Yours,

> > from Long Island

> >

>

[Guest guest]

Touche - enough IS enough!! Thank you for your kind wishes,

and have a great Thanksgiving!

~~

> > >

> > > Hi ,

> > >

> > > You had a full revision in 2001, right? Why are you having

> another

> > > surgery in February? Are you ok? Did something go wrong?

Are

> you

> > > having pain? Just curious. Forgive me if this has already

been

> > > discussed. I was out of the loop for quite some time. I hope

> you

> > > don't mind filling me in. Thanks.

> > >

> > > Spine-ally Yours,

> > > from Long Island

> > >

> >

>

[Guest guest]

you aren't being mean - things that we say usually need to be said because

we are so concerened that everyone so well. I agree with everything you say

and said. Thanks for always giving us your informed and direct opinions.

Kellie in OKC

12-19-03 Dr R (can't believe 2 yrs has already flown by)

304/178/goal 150's someday

>From: " juliewmson " <jwmson1@...>

>Reply-

>

>Subject: I apologize .. I apparently misunderstood the

>question

>Date: Sat, 31 Dec 2005 15:39:11 -0000

>

>Since I have now been called " mean " by several let me say that I have

>gone back and re-read the original post from and I apparently

>misunderstood her basic question.

>

>I looked at the question and thought she was asking about fish oil in

>general, which of course is a recommended supplement, and I jumped to

>the assumption that anyone that new postop should, I would think, be

>very familiar with the recommendations from CLOS. But .. you know

>what they say about assumptions (when you assume you make an " a** "

>out of you and me... and in my case my assumption did it's job on me

>anyway.

>

>Apparently was asking more about the effects of the fish oil

>than whether or not it should be taken. I responded to the question

>that she wasn't asking. My apologies to .

>

>I didn't think my post was " mean " . I do think it was " to the point " .

>

>Again let me try and explain where I and some of the other postops

>who get accused of being too " straightforward " are coming from ....

>it seems that the more surgeries that are done, the more centers that

>are opened, etc. the " bible " , aka the manual, is becoming less and

>less important. When we had surgery there was one surgeon, one set

>of rules, etc. Now there are mutliple surgeons, multiple sets of

>rules, and sometimes people are abiding by them, making up their

>own .. or ignoring them all together.

>

>We see people trying to take " shortcuts " , not take the supplements,

>hurry the process, " why do I need to take this " ....etc. That does

>not mean that everyone does it ... but it seems that several do and

>it concerns us.

>

>We as " old timers " are here because we want to help ... whether you

>believe that always or not. We are definitely in the minority.

>Maybe because our experience was so different than most of yours we

>should move on with our lives ... who knows?

>

>When we ask whether you have read, re-read and read again the manual

>it is because there are some out there that have not .... and they

>are putting themselves in danger. We truly are trying to help -- at

>least I personally am - and I obviously don't always go about in the

>best way possible.

>

>Again ... my apologies to all.

>

> in GA

>

>

>

>

>

>

>

>

[Guest guest]

,

One of my boys coaches used to say, " Keep your eye on the prize " .

Here's a cypernet HUG.

Joyce T, RN Atlanta

[Guest guest]

In a message dated 1/9/2006 7:02:45 P.M. Eastern Standard Time,

tcctyclk@... writes:

If I have celiac's I am going to strangle my rheumy. He has it

and he referred me to his Gastro doc.

Hey Sib...I have never tested positive, always inconclusive, but my

arthritis is always better when I am eating gluten free...

[Guest guest]

Hi April,

Yes, it was a blessing, I understood speech at activation. I had been

worried about that, having the worse ear implanted, the totally deaf one.

But I understood right away, and it has all only gotten better since. Now,

my bad ear is my good ear, lol. Music took longer, lyrics mostly, but that

is good now too, I really don't have any complaints at all. It scares me to

think that I was so scared I came very close to cancelling my surgery, now

that I know the power of the CI and what it did for me. Even after months

of research, of being on these forums, of meeting and talking to CI users, I

really didn't understand until I had my turn. I'm rooting for you that your

experience will be just as positive. By the way, I also didn't hear any

beeps during the test that you mentioned, but I heard plenty of beeps and

everything else during activation, lol.

Binns

----Original Message Follows----

From: " gargeli " <ESTES6643@...>

Reply-

Subject: To

Date: Mon, 23 Jan 2006 02:52:31 -0000

I was reading your post to and saw that you had your worse ear

implanted. I am also having my worse ear implant on Wednesday. I am in

the same stituation that you were not being able to wear HA in worse

ear but do very well with one in the good ear. My question is when you

were first activated were you able to understand speech in the

implanted ear? If not how long did it take you? I know everyone is

different but I just kinda wanted to know where I stand. I lost my

hearing at the age of 3 due to meningitis so I understood speech in

worse ear for at least 3 yrs. When my audi tested me for implant I

could not hear any beeps but I could feel them vibrating. If you don't

mind please reply back and let me know your experience.

Thanks

April

[Guest guest]

Hi April,

Congratulations on your upcoming CI surgery. We will all be pulling

for you. I also had my worst ear implanted. Due to recruitment I

was unable to use a hearing aid in my left ear. I was essentially

deaf in that ear for over 35 years. I too was blessed with being

able to understand speech during my initial activation. My family

and I are thrilled with my CI. Take a look at post # 41664. It is

an article on implanting your worst side vs. implanting your better

side.

Best regards and good luck Wednesday,

Jim

>

> I was reading your post to and saw that you had your worse

ear

> implanted. I am also having my worse ear implant on Wednesday. I

am in

> the same stituation that you were not being able to wear HA in

worse

> ear but do very well with one in the good ear. My question is when

you

> were first activated were you able to understand speech in the

> implanted ear? If not how long did it take you? I know everyone is

> different but I just kinda wanted to know where I stand. I lost my

> hearing at the age of 3 due to meningitis so I understood speech

in

> worse ear for at least 3 yrs. When my audi tested me for implant I

> could not hear any beeps but I could feel them vibrating. If you

don't

> mind please reply back and let me know your experience.

>

> Thanks

> April

>

[Guest guest]

> >

> > I was reading your post to and saw that you had your worse

> ear

> > implanted. I am also having my worse ear implant on Wednesday. I

> am in

> > the same stituation that you were not being able to wear HA in

> worse

> > ear but do very well with one in the good ear. My question is

when

> you

> > were first activated were you able to understand speech in the

> > implanted ear? If not how long did it take you? I know everyone

is

> > different but I just kinda wanted to know where I stand. I lost

my

> > hearing at the age of 3 due to meningitis so I understood speech

> in

> > worse ear for at least 3 yrs. When my audi tested me for implant

I

> > could not hear any beeps but I could feel them vibrating. If you

> don't

> > mind please reply back and let me know your experience.

> >

> > Thanks

> > April

> >

>

WOW!! Both yours and Jim's replies gives me very positive outlook on

this. You know when I first found out that I was a candidate my

surgeon didn't know for sure which ear he was going to implant. He

did not know if my worst ear was messed up from the meningtis meaning

that it had bony growth around my cochlea or something of that sort,

so he asked me if I would consider doing the better ear. I hesitated

at first, giving thought of my two young sons not knowing if I would

ever hear their voices if something had gone wrong, but finally I

said ok. Then came MRI and C-Scan. While waiting for these results I

was not very excited about the implant anymore not knowing which ear

it was going to be. Finally I got the call I was told my worst ear

was going to be implanted. Boy was I happy then. I just figured if

the implant failed in my worst ear I had nothing to lose. But if

works then I got a whole lot to gain. I just hope that I get results

as good as yalls.

Thanks for everyone's blessing

April

[Guest guest]

>Hi Suzie, and everyone!

I am here in the Boston area and moved from Sarasota to be close to

Dr Rand. The reason I moved to FL is because of my retired parents,

who live in North Port! Small world indeed.

I hope all is well with everyone and thank you all so much for such

a warm welcome, I know we all need a place to go where we are truly

understood, and for this I am very grateful. May you all find some

peace...

I will check in soon!

Hugs

> Hi ,

> I saw in one of your posts that you were living in Sarasota....I

just moved here to South Carolina last year from North

Port,Florida....we lived in Sarasota about 13 years ago and my

grandfather still is there. Small world.

> I just wanted to say welcome to the group and know that you have

my support! I quit smoking about 4 months before my surgery and it

was the best thing I ever could have done....though not an easy

task! They say that your body doesn't heal properly if you smoke

and when I found out that I was going to have the revision I knew I

had to quit. A very dear friend of mine had surgery to fuse his

foot and ankle and swore to the doctor that he quit and he

didn't...long story longer the fusion didn't take and he had trouble

with the anesthesia. You will be glad that you have taken this step

for many reasons other than the surgery trust me!

> Suzie

>

>

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

> Brings words and photos together (easily) with

> PhotoMail - it's free and works with .

>

[Guest guest]

>Suzy!

Thanks so much for your few lines! Going back to smoking is not an

option for me so I am good there. When I was 25 I quit for two

years and that was awful and it is SO true, it does get harder... I

wouldnt do that again.

Thanks for the information on weight gain, boy, I hate not moving!

I have always had a get-up-and-go attitude and loved working out,

skiing, and biking. Now, I cant shower without a chair. I just hope

that surgery changes that and I can get back to being fit and

working, I miss it so much that when I got too bad to work I signed

up for my bachelor's degree in Management Information Systems, and

have a year to go!! And, I am a 4.0 student, so something is going

right..

Thanks agian, Suzy!

> Hi ~

> I just read your post and thought I would hop on and drop you a

line or three....I had my revision surgery last March and yes I lost

40 pounds after my revision, though I don't know if I am the norm

because I spent 60 days in NYC away from my family in South Carolina

due to complications from surgery. I have since gained back 20

pounds and was told by another post revisionist that our doctor said

that after a really long surgery your metabolism goes in to high

gear hence the weight loss and then it drops sharply hence the

regain. Boo-hoo, I say! I have decided that I am not at all happy

with the regain and am working very hard to lose what I gained and

then some...its a though road to hoe! I know how hard it is to quit

smoking and when you start to gain weight but trust me when I tell

you that every time you quit it is harder than the last!! You have

given yourself such a wonderful gift by quitting, keep up the great

work and you will be 100X's happier in the long run!

> I hope that this loopy email has helped you in some small way!

Just know that I am here for you as well as all of the other

Cheerleaders in this wonderful family that we are part of!!

> Have a wonderful afternoon!

> SuzieQ

>

>

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

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

~ I am glad to hear that you are doing so well with the not smoking side of things! The lack of mobility can and is overwhelming and at times depressing...I spent 8 months in a wheelchair prior to my revision and felt depressed and isolated. I couldn't just pick up and go where and when I wanted, it was a beast! I too was a very active person before all of this...I raced on an all guys ski team, played soccer on a guys team, softball, tennis...you name it! I can say that I have a good quality of life now that I have had the revision done. I am walking...not as much as others can but for me it is a HUGE accomplishment to be independant again! So I totally consider it a blessing that I had this surgery...yeah it was a freakin' tough road but anything worth having is worth fighting for! You are a fighter, if you weren't you wouldn't be able to be doing what you have done with school while living in such pain! I

think we all are fighters...we have had to be and we are better for it! You are lucky that you have found this group and you are helping others by reaching out, I know for me there were times when I wanted to ask things but was afraid to look silly to the others that were farther along, now I know that that couldn't be more wrong. Congrats to you for doing the things that you are doing and please know that you are not alone....not ever! Its nice to have such a great support network at our fingertips, isn't it? Have a happy! SuzieQ

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

Hi Kathy...

I have links to half a dozen articles on my website:

http://www.scoliosislinks.com/FlatbackontheInternet.htm

The ones by Mike LaGrone and Bridwell are particularly good.

Regards,

>

> ,

>

> I am going to my GP in about a week. I would like to be able to print

> out and take with me ONE article about flatback, the symptoms of etc.,

> to show to him. Up until now I have not had medical coverage for pre-

> existing conditions. I guess my next step will be to try and get a

> copy of the MRI or at least the report I had done for Texas Rehab a

> little over a year ago. NO ONE seems to know the results! For all I

> know they lost it. And I guess they just dropped me. No contact from

> them either!

>

> Any other suggestions? I hurt in so many places I'm not sure what is

> caused by my back and what is " just " arthritis. Hips, knees, neck,

> shoulders, upper back primarily. Lower back pain comes only with

> standing, walking, etc.

>

> Kathy

>

[Guest guest]

Kathy,

I know what you mean about not know where the pain comes from sometimes, but you really shouldn't downplay "just arthritis". You could find out that it is arthritis of the spine that is giving you your worst pain! I just mean that we are more apt than most to have it. I was told that we are sitting ducks, due to our rods, etc., and having to compensate all over the place.

I hope that you get some results from your doctor's appointment, and that your insurance covers everything that you need!

Sincerely,

Carole M.