New to the group

[Guest guest]

> From: " Trudy " <iamthezookeeper@...>

>

> Your ENT sounds like a whackjob. I would love to kick him somewhere

> and then say " that couldn't possibly hurt " and walk out. Hopefully

> someone on the board in southern California can help you find a doc

> that is not a nutcase. Trudy.

>

Q: What's the difference between a Doctor, and God?

A: God doesn't think he's a doctor.

[Guest guest]

Thanks anyway

New to the group>I have had my Samters diagnosis for 13 years now and have had 6> surgeries. I recently moved from Texas to California and am finding> that it is hard to find a Dr. that is will to work with me. My> symptoms were under control for a while until I gave birth to my> third child and (I believe due to the hormones) now am in constant> pain and nothing is helping, not even the oral steroids. I know that> at this point the only way that I will get relief is through> surgery. My PCP sent me to an ENT last week who told me "that I am> not in pain since I have had so much of my sinuses reconstructed that> their is no way that they could be hurting me" I tried to explain to> him that not only do they hurt but I am to the point now that I can> no longer put on make-up in the mornings because it hurts so much to> touch my face. He looked at the CT that I had done, in which the> radiologist said that my sinus cavities are "completely filled with> polyps" and that "the only way that this patient will get relief is> by removing them surgically", he said that "while I see what they are> seeing I do not agree with the report." He said that he feels> that "I should have never allowed the Doctor in Texas to do any> surgery." And that there is nothing that he can do for me except to> tell me that in his opinion "I truly cannot be in pain and that is> what he will send in his report to my PCP.">> With that said I am trying to do some research to find a Doctor out> here that knows about Samters and that can help me.>> I have been enjoying reading all the post and have learned a lot more> than I thought that I would.>> Thanks,> Marjory>>>>>>>>

[Guest guest]

Marjory,

Perhaps you could call the Scripps Clinic and get a recommendation for an ENT in your area?

BillieCarol <shedokdo@...> wrote:

Marjory: I am sure there is someone closer to you that can recommend an ENT in So California. The people I know are in the northern California area. Have you considered one of the teaching hospitals? Carol

New to the group>I have had my Samters diagnosis for 13 years now and have had 6> surgeries. I recently moved from Texas to California and am finding> that it is

hard to find a Dr. that is will to work with me. My> symptoms were under control for a while until I gave birth to my> third child and (I believe due to the hormones) now am in constant> pain and nothing is helping, not even the oral steroids. I know that> at this point the only way that I will get relief is through> surgery. My PCP sent me to an ENT last week who told me "that I am> not in pain since I have had so much of my sinuses reconstructed that> their is no way that they could be hurting me" I tried to explain to> him that not only do they hurt but I am to the point now that I can> no longer put on make-up in the mornings because it hurts so much to> touch my face. He looked at the CT that I had done, in which the> radiologist said that my sinus cavities are "completely filled

with> polyps" and that "the only way that this patient will get relief is> by removing them surgically", he said that "while I see what they are> seeing I do not agree with the report." He said that he feels> that "I should have never allowed the Doctor in Texas to do any> surgery." And that there is nothing that he can do for me except to> tell me that in his opinion "I truly cannot be in pain and that is> what he will send in his report to my PCP.">> With that said I am trying to do some research to find a Doctor out> here that knows about Samters and that can help me.>> I have been enjoying reading all the post and have learned a lot more> than I thought that I would.>> Thanks,>

Marjory>>>>>>>>

[Guest guest]

Thanks Billie I will call.

Marjory

-----Original

Message-----

From: samters

[mailto:samters ]On Behalf Of billie

ford

Sent: Sunday, August 21, 2005

12:59 PM

samters

Subject: Re: New to the

group

Marjory,

Perhaps you

could call the Scripps Clinic and get a recommendation for an ENT in your area?

Billie

Carol

<shedokdo@...> wrote:

Marjory:

I am sure there is someone closer to you that can recommend an ENT in

So California. The people I know are in the northern California area. Have you

considered one of the teaching

hospitals?

Carol

-----

Original Message -----

From: Marjory Hatfield

samters

Sent: Thursday, August 18,

2005 1:28 PM

Subject: RE:

New to the group

I am in Simi Valley outside

of LA.

Thanks

Marjory

Re: New to the

group

Marjory: where in California? I moved from Kansa

City to California and know

a lot of docs that can be helpful. Your ENT doc sounds like a butt.

Carol

New to the group

>I have had my Samters diagnosis for 13 years now and have had 6

> surgeries. I recently moved from Texas to California and am

finding

> that it is hard to find a Dr. that is will to work with me. My

> symptoms were under control for a while until I gave birth to my

> third child and (I believe due to the hormones) now am in constant

> pain and nothing is helping, not even the oral steroids. I know

that

> at this point the only way that I will get relief is through

> surgery. My PCP sent me to an ENT last week who told me

" that I am

> not in pain since I have had so much of my sinuses reconstructed that

> their is no way that they could be hurting me " I tried to explain

to

> him that not only do they hurt but I am to the point now that I can

> no longer put on make-up in the mornings because it hurts so much to

> touch my face. He looked at the CT that I had done, in which the

> radiologist said that my sinus cavities are " completely filled

with

> polyps " and that " the only way that this patient will get

relief is

> by removing them surgically " , he said that " while I see what

they are

> seeing I do not agree with the report. " He said that he

feels

> that " I should have never allowed the Doctor in Texas to do any

> surgery. " And that there is nothing that he can do for me

except to

> tell me that in his opinion " I truly cannot be in pain and that

is

> what he will send in his report to my PCP. "

>

> With that said I am trying to do some research to find a Doctor out

> here that knows about Samters and that can help me.

>

> I have been enjoying reading all the post and have learned a lot more

> than I thought that I would.

>

> Thanks,

> Marjory

>

>

>

>

>

>

>

>

[Guest guest]

Hi amile57 and welcome to this group, although I'm sorry that you may

need revision surgery. We have some similarities - my original

surgery was the same year as yours - I was 17. Do you know how long

your fusion is? Mine is from T5 to the sacrum. I have a lot of

numbness also which started on one side and has now spread to both

sides. My doctors are not sure if it will improve if I have revision

surgery either. I also have another neurological spine problem

revealed by MRI (a syrinx - fluid filled cyst in the central canal of

part of my thoracic spine) that might be causing it. Would you mind

sharing where you live and what doctor you would use for the

revision? I'm in New York State and plan to use Dr. LaGrone in Texas

when I have my revision (possibly next year). He'll take out all the

old instrumentation (two Harrington rods/four hooks) if he can, do

one osteotomy (probably similar to the " sawing through the bottom

fusion " you'd have) and put in new rods/screws. I'm not sure if

he'll have to extend my fusion up a little - hopefully not.

Correcting the sagittal imbalance is the goal; I don't expect to get

any correction to my remaining side to side curves. My sagittal

balance was off by 12 to 18 cm before I had my hip replaced. After

that I think it was either 6 or 8 cm. If I figured the conversion

right, that's a bit more than you.

Hope this info. makes you feel less alone. It's a huge surgery that

we are facing. I am glad that so many others post or have posted

extensively about their experiences with the surgery. It has really

helped me feel much more prepared.

Best wishes and good luck,

loriann

>

> Just wanted to say " hi " I am new to the group, it is nice to know

> that I am not alone. I am thinking about have revision surgery. I

> had my fusion and harrington rods sugery in 1977. They only

> corrected my spine from 74 degrees to 45. I am now but to 60

> degrees. I have problems my whole life as they never did correct me

> enough to be able to hide the fact that my back was

still " crooked " .

> I have worn big clothes to hide my deformity. But they did at least

> balance my head, shoulders and hips so I could walk straight. But

> now after many years I am now out of balance by 2 inches. It is

> really noticeble and I am starting to walk funny. I have numbness

on

> my left side and the doctors can not fiqure out why. I had a

> mileogram that showed no nerve damage, so they are not sure if I

> have sugery if the feeling will come back or not. My fusion is

> really solid so they can't really make me any straighter but they

> said they can fuse the upper part and put screws in, take out the

> rods and would have to saw through the bottom fusion in order to

> make me balance again. I am at odds if I want this done or not. I

> really don't want to be like I am right now, but wondering if it

> will all be worth it to have the surgery. I am glad there are

groups

> out there with people that are the same as me. I would welcome

> anyone who has already undergone such a surgery or is thinking

about

> it like me. Thanks

>

[Guest guest]

>

My fusion is from T8 to the scarum. I have my first fusion when I

was 16, which was just a fusion of the lower half and the rest was

done when I was 22 that surgery was done at the Cleveland University

Hospital, Rainbows and Babies wing, yes I was the oldest one

there!!!!!!! I live in Michigan now and went to the University of

Michigan and the Dr. was Stanley Lee. He has only been doing these

surgery since 1998, he is pretty young still and he has only done

three that are like ours. I think I might have a second opinion and

seek out another doctor. I am also thinking of having my surgery

next year. I need to prepare being off work so long. Did they say

how long you should expect to be home bound? My doctor says three

months. I didn't think it took that long to recoup.

Best Wishes to you too,

Annette

> Hi amile57 and welcome to this group, although I'm sorry that you

may

> need revision surgery. We have some similarities - my original

> surgery was the same year as yours - I was 17. Do you know how

long

> your fusion is? Mine is from T5 to the sacrum. I have a lot of

> numbness also which started on one side and has now spread to both

> sides. My doctors are not sure if it will improve if I have

revision

> surgery either. I also have another neurological spine problem

> revealed by MRI (a syrinx - fluid filled cyst in the central canal

of

> part of my thoracic spine) that might be causing it. Would you

mind

> sharing where you live and what doctor you would use for the

> revision? I'm in New York State and plan to use Dr. LaGrone in

Texas

> when I have my revision (possibly next year). He'll take out all

the

> old instrumentation (two Harrington rods/four hooks) if he can, do

> one osteotomy (probably similar to the " sawing through the bottom

> fusion " you'd have) and put in new rods/screws. I'm not sure if

> he'll have to extend my fusion up a little - hopefully not.

> Correcting the sagittal imbalance is the goal; I don't expect to

get

> any correction to my remaining side to side curves. My sagittal

> balance was off by 12 to 18 cm before I had my hip replaced.

After

> that I think it was either 6 or 8 cm. If I figured the conversion

> right, that's a bit more than you.

>

> Hope this info. makes you feel less alone. It's a huge surgery

that

> we are facing. I am glad that so many others post or have posted

> extensively about their experiences with the surgery. It has

really

> helped me feel much more prepared.

>

> Best wishes and good luck,

>

> loriann

>

>

> ---

[Guest guest]

In the five years that have elapsed since this group came into existence, I have invariably urged people with post-surgical scoliosis complications to seek the MOST experienced and expert revision surgeon available. I'll stick my neck out even farther in your case and urge you emphatically and unequivocally to get your second opinion from a more seasoned surgeon than the young man you describe.IMHO you would be taking something of a risk to undergo revision surgery with someone as young and new to the field as the doctor you describe. I certainly feel for younger men and women in the field of complex spinal deformity correction who need to gain more experience, but most of us at this group (just my 2 cents) can not afford to be their "learning material." There is simply too much at stake.There are some very well known revision surgeons you will hear about often at this group. I wish I knew of someone in Michigan -- only Missouri, Minnesota, and my own state, Illinois. Assuming you are closer to Chicago than to Minneapolis or St. Louis, I would highly recommend Ondra, MD, at Northwestern University School of Medicine. He is absolutely tops in every way, and you can trust the advice he gives you implicitly. (Of my eight spinal operations, including six revisions,Dr. Ondra did the last four procedures.) Best, > >> My fusion is from T8 to the scarum. I have my first fusion when I > was 16, which was just a fusion of the lower half and the rest was > done when I was 22 that surgery was done at the Cleveland University > Hospital, Rainbows and Babies wing, yes I was the oldest one > there!!!!!!! I live in Michigan now and went to the University of > Michigan and the Dr. was Stanley Lee. He has only been doing these > surgery since 1998, he is pretty young still and he has only done > three that are like ours. I think I might have a second opinion and > seek out another doctor. I am also thinking of having my surgery > next year. I need to prepare being off work so long. Did they say > how long you should expect to be home bound? My doctor says three > months. I didn't think it took that long to recoup. > Best Wishes to you too,> Annette> > > Hi amile57 and welcome to this group, although I'm sorry that you > may > > need revision surgery. We have some similarities - my original > > surgery was the same year as yours - I was 17. Do you know how > long > > your fusion is? Mine is from T5 to the sacrum. I have a lot of > > numbness also which started on one side and has now spread to both > > sides. My doctors are not sure if it will improve if I have > revision > > surgery either. I also have another neurological spine problem > > revealed by MRI (a syrinx - fluid filled cyst in the central canal > of > > part of my thoracic spine) that might be causing it. Would you > mind > > sharing where you live and what doctor you would use for the > > revision? I'm in New York State and plan to use Dr. LaGrone in > Texas > > when I have my revision (possibly next year). He'll take out all > the > > old instrumentation (two Harrington rods/four hooks) if he can, do > > one osteotomy (probably similar to the "sawing through the bottom > > fusion" you'd have) and put in new rods/screws. I'm not sure if > > he'll have to extend my fusion up a little - hopefully not. > > Correcting the sagittal imbalance is the goal; I don't expect to > get > > any correction to my remaining side to side curves. My sagittal > > balance was off by 12 to 18 cm before I had my hip replaced. > After > > that I think it was either 6 or 8 cm. If I figured the conversion > > right, that's a bit more than you. > > > > Hope this info. makes you feel less alone. It's a huge surgery > that > > we are facing. I am glad that so many others post or have posted > > extensively about their experiences with the surgery. It has > really > > helped me feel much more prepared.> > > > Best wishes and good luck,> > > > loriann> > > > > > --->

[Guest guest]

Hi nne!

I just found this website and it is refreshing to find out how many

others there are with this unique quality!

My left eye is blue. But my right eye is brown at the top and blue

at the bottom. Very similar to your daughters eyes!

I don't know of anyone else in my family tree that had

heterochromia. I didn't even know until yesterday that it could be

related to genetics. I always explained it away as a " misplaced

freckle " !

It has never affected my eyesight but it has definitely affected my

personality -- in a positive way! As a child, I don't remember

feeling " different " or being singled out until I started grade

school. Adults, not other children, in the school system would make

it into a big deal that left me feeling very self-conscious. And

they were not always " kind " in their choice of words. Because of

that, I think I am more open and accepting of differences in all

aspects of life (race, disabilities, religions, etc).

When colored contact lenses became popular, I was excited to try

them. Buy a very wise optometrist told me he would only sell

me " clear " contacts as my eyes were beautiful just the way God made

them. That was over 20 years ago and I am still wearing clear

contacts!!!

As an adult, I have had the opportunity to work part-time in

retail. Several customers have commented on my eyes and I have had

nothing but positive comments ( " Awesome! " " I wish I had your

eyes! " " Beautiful! " ). Maybe we are evolving as a society after all!

Your child is blessed. I hope she embraces that!

Barbara

>

> Hello all. I found this group while researching information on

> Heterochromia, which is what my 3 yr old has in her eyes.

>

> She has 1 blue eye and 1 hazel/brown eye and she inherited it from

her

> grandfather. I think people dont always notice it with her

because

> the 1 blue eye at the very top has some brown in it.

>

> I am looking forward to learning more about this condition and

talking

> with others with similar assets like my daughter

>

> nne

>

[Guest guest]

//I should be here for 6 to 12 months. I have been very active

> with the AZ-Bandsters, but since I am here in Washington I have

been looking for a group to associate with.//

:

I'm sorry that you won't be able to attend the Crossroads Soup Night

but recognize that the 23rd may not work for many folks. We just

wanted to get it started. Feel free to join us in the following

months. Hopefully, you've looked at the calendar and found others

in the Seattle area that may work for you.

Since you'll be in our area for awhile, if you need support or just

want to chat with a fellow bandster, you can email me offline

anytime. I'm new to banding (11/01/05) but would be willing to lend

an ear. I live in Redmond, so we're sort of neighbors!! You've done

great, losing 88 lbs. since June. Congratulations.

Sandy B.

329/300/170

[Guest guest]

//I would like to attend the Soup nite at the Crossroads Mall, but I

> will back in Phoenix for the holiday at that time.//

Shame you cant make the soup night, we thought it might be a difficult

night but wanted to get started (this will be our first one). We are

currently in the calendar for the 4th friday of the month, so after

the 23rd Dec, the next one is scheduled for the 27th Jan. Maybe we

will see you then.

Delene

11/23/05 Dr Montgomery

[Guest guest]

It's a shock for any of us to be hit with a disease such as reactive

arthritis, but I spose it's more so when one spends so much time in

exercise.

I have found that I have to limit my exercises to range of motion, mostly

after a warm shower or bath and also I hear that water exercises such as

arthritis associations and YMCAs provide. The hospital where I live in MI

has an inside pool with a program. I hope to be able to settle there one day

and be able to do these things in the pool. For now, the gentle range of

motion helps.

Where I lived before the shower was large enough for me to do lots of

exercises in the shower and then get out to the bedroom and do the rest of

them.

Another thing that helps and I don't do enough of are repetitive range of

motion with a slight weight, such as a couple of pounds. I spose if your

husband hasn't deteriorated as far as I have that a 5 or 10 pound weight

might be OK for him to use. In myopinion he is the only one who can tell how

much weight to use or how many reps to do.

He is fortunate indeed to have found such a doc to start with and I think

I'd ask him for exercises to help him through. He may not stay as bad as he

is now. I have had times when I am much better and times when I am much

worse. I have been diagnosed with AS but I think the diseases work in much

the same way.

GA

[Guest guest]

In a message dated 1/14/2006 12:28:52 A.M. Eastern Standard Time,

jr_clost@... writes:

His arms may never fully extend again and his ankle is in a perpetual

state of swollen.

Analia, It might seem like his arms won't ever fully extend, but they will.

Frozen shoulder/elbows, take a lot of time to get motion back and inflammation

down. I had 6 months of physical therapy, (exercise/massage/warm and cold

packs, some kind of simulating machine) every other day until I got tired of

that and had just one injection to the shoulder of steroid concoction from an

orthropedist and it healed in three days. I've found that Rheumatologists

don't have all the answers. I rarely get the shots, but when nothing else works

it doesn't hurt to try this. You can't get used to steroid shots, but I've

resorted to them several times over the last 30+ years. Shots to the SI joints

can help when you get so bad you can't walk...crying on floor and still full

of pain meds without relief. Some Rheumatologists will do it rarely.Don't

dispare. Some days will be very good and he has a good chance he may go into a

long remission....with no symptoms. Seems hard to think right now, but many

do.

[Guest guest]

hi..... the first thing your husband needs to do is to keep positive. my

rheumatologist told me once that of all his patients, the ones who do best are

the ones who keep a positive attitude. always look on the bright side, and

there is going to be one. a bad attitude will only make your husband feel

worse.

his life isnt over. i have reiters syndrome (reactive arthritis) and i live

in china. i still go out backpacking, hiking, taking photos in the remote

desert, cycle and swim. the past two weeks i was in cambodia and when i came

back to china a few days ago, hauling my backpack and camera bag on my back, my

feet were killing me. its been like that for a few days now, but i know it will

eventually pass and i'll feel better, (if not totally pain free). i used to run

a lot, and even managed to run a 10k race five years after i was diagnosed with

this disease. of course that was a few years ago and i couldnt do that run

now, but its just a matter of finding out what he can do and going with that.

reiter's syndrome means an adjustment in lifestyle more than anything else in

my opinion.

get your husband to a swimming pool, and a hot tub before and/or after. see

what happens.......

life goes on, its just a matter of how your husband learns to cope with it.

james

Analia Norat van Dyck <momofc_m@...> wrote:

I wanted advice on how he is meant to

exercise when he can barely walk. His worst areas are both elbows,

one ankle, the other foot, the neck, entire spine, and one shoulder.

His arms may never fully extend again and his ankle is in a perpetual

state of swollen.

Will this ever end? Will he ever be able to cycle or run? Will he

ever feel happy and positive again?

---------------------------------

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

[Guest guest]

, welcome to the group. I have had two surgeries too. The second one has made eating a lot better. For the most part I do not have much trouble eating but then there are days that I do. I have a drink ready when I eat just in case I do fell some sticking going on. Every one in this group is a little different even though we all have the same disease. I know there has been some talk about post surgery dilation's. That might be something to look into.

Take a good look through the group site. There are several people that live in Canada and they might be hear you. Also try and read some of the old posts and that will kind of help you get an idea of what we have been talking about over that last few months. I am glad you have found this group and welcome to our little family.

in Suffolk

[Guest guest]

welcome to our two new members. two important sites to visit which will help

to answer your questions are www.clltopics.org and LISTSERV@...

to get on the ACOR posting list cll@... where you can ask

and receive answers to questions. if you have any questions please write me.

also there is going to be a CLL symposium in Boston April 29th. if you would

like

to attend please write me bruce

Bruce from Boston DX 3/05 Stage 0 W/W

[Guest guest]

Hi

I was diagnosed about 5 weeks ago and have the same questions!

Welcome to the group - you will like it as everyone is friendly and

helpful.

On Mar 8, 2006, at 5:53 PM, M_Hauenstein wrote:

> Hi! I was just diagnosed with CLL, stage 0 yesterday and am still in

> kind of a daze. I know CLL takes some years to progress, but I was

> wondering what I may be in for. Do they give you medication to help

> your immune system immediately? Or do they wait until stage II or III

> to do anything. Obviously, it varies from case to case, but generally

> speaking, what happens? If you could let me know your experiences, I

> would appreciate it.

>

>

>

>

>

>

>

[Guest guest]

Bruce and new members.

To register for ACOR the link is HYPERLINK

" http://cll.acor.org/help.htm " http://cll.acor.org/help.htm

HYPERLINK " http://www.clltopics.org/ " www.clltopics.org is a great resource.

Then there is HYPERLINK " http://www.cllforum.com/ " www.cllforum.com a site

for the CLL community.

_____

From: SLL-CLL-edu [mailto:SLL-CLL-edu ] On

Behalf Of brumoo2540@...

Sent: Thursday, 9 March 2006 10:20 AM

SLL-CLL-edu

Subject: Re: New to the group

welcome to our two new members. two important sites to visit which will help

to answer your questions are www.clltopics.org and

LISTSERV@...

to get on the ACOR posting list cll@... where you can ask

and receive answers to questions. if you have any questions please write me.

also there is going to be a CLL symposium in Boston April 29th. if you would

like

to attend please write me bruce

Bruce from Boston DX 3/05 Stage 0 W/W

_____

--

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Checked by AVG Free Edition.

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Checked by AVG Free Edition.

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[Guest guest]

Thank you! I'm glad I'm not the only one. My oncologist does not

seem to be too communicative and I don't know what to ask yet.

>

> > Hi! I was just diagnosed with CLL, stage 0 yesterday and am

still in

> > kind of a daze. I know CLL takes some years to progress, but I

was

> > wondering what I may be in for. Do they give you medication to

help

> > your immune system immediately? Or do they wait until stage II

or III

> > to do anything. Obviously, it varies from case to case, but

generally

> > speaking, what happens? If you could let me know your

experiences, I

> > would appreciate it.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome le!!, My name is Tammy Irish. I have not been banded yet. My dob is 4/28 and I cant wait!! So I am not the one to talk to about what you should be experiencing but just wanted to say that everyone here is awesome and very supportive in good times and bad. Just wanted to say HI and welcome to a wonderful bunch of bandsters!! Tammy I.rachelle_sharp <Bandster2006@...> wrote: Hi All,I am so glad to have finally have joined the message board. Most days I really feel like I need the support. I also saw that my new friend , who was in the hospital with me, has posted! Yeah! Now I can get in touch with her (Wrote her email down

wrong...) I have been having a hard time sticking to the post surgery diet - guess being addicted to food makes it like that. This past day has been really frustrating and I just worry that I'm not losing weight fast enough. (I've lost 11 pounds since the beginning of the month.) I realize this is alot, but don't you lose the most right after surgery? I guess I just don't know exactly what to expect. It would be nice to hear about other people and their experiences, especially since I'm new to the group. I even made up a seperate email account on AOL because the group sends so many messages, which is great for all the support. Looking forward to being part of the group,le

[Guest guest]

Welcome....I haven't been banded yet...not till next week, but this is a great group.rachelle_sharp <Bandster2006@...> wrote: Hi All,I am so glad to have finally have joined the message board. Most days I really feel like I need the support. I also saw that my new friend , who was in the hospital with me, has posted! Yeah! Now I can get in touch with her (Wrote her email down wrong...) I have been having a hard time sticking to the post surgery diet - guess being addicted to food makes it like that. This past day has been really frustrating and I just worry that I'm not losing weight fast enough. (I've lost 11 pounds since the beginning of the month.) I realize this is alot, but don't you lose the most right after surgery? I guess I just don't

know exactly what to expect. It would be nice to hear about other people and their experiences, especially since I'm new to the group. I even made up a seperate email account on AOL because the group sends so many messages, which is great for all the support. Looking forward to being part of the group,le

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[Guest guest]

Hi le, Just wanted to let you know that you are not the only one, the post diet is very hard and even if you can't stick to it completely try to stick to it as close as you can, it is not only for healing but to make sure the band is secured in its place. About 12 days post op I started taking a can of cream of chicken and mixing it with a can of broth, it thinned it out real good but gave me a little substance to live on. Good luck and I am sure others will post, and don't worry about the weight loss now, it will really start once you get your first fill. Tracie Bartek 248/192.5rachelle_sharp <Bandster2006@...> wrote: Hi All,I am so glad to have finally have joined the message board. Most days I really feel like I need the

support. I also saw that my new friend , who was in the hospital with me, has posted! Yeah! Now I can get in touch with her (Wrote her email down wrong...) I have been having a hard time sticking to the post surgery diet - guess being addicted to food makes it like that. This past day has been really frustrating and I just worry that I'm not losing weight fast enough. (I've lost 11 pounds since the beginning of the month.) I realize this is alot, but don't you lose the most right after surgery? I guess I just don't know exactly what to expect. It would be nice to hear about other people and their experiences, especially since I'm new to the group. I even made up a seperate email account on AOL because the group sends so many messages, which is great for all the support. Looking forward to being part of the

group,leTracie K. Bartek (Dr. Aceves Lap-Band Dolls)DOB 6/24/05248/200/150

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[Guest guest]

Hi le!!!

I was wondering why you hadn't emailed me yet! Glad to hear from

you. Believe me, I know exactly how you feel about the post-op diet,

it is so hard to have just liquids. All the TV commercials have been

making me crazy, especially the pizza ones and these awful shrimp

ones for Applebees (I love seafood.)I find myself wanting to chew

real food so bad!!!

I KNOW YOU CAN DO THIS RACHELLE!!! You are a strong,strong person,

think of everything you have fought and made it through already. And

congratulations on the 11 pound loss,that is great! I was losing

really steady until the last couple days, I actually gained a couple

back that I had lost. I have found from reading this group's

messages as well as on ObesityHelp that some people don't lose at

all during the healing period. So pat yourself on the back, you are

doing wonderful.

Take care, I will watch for your postings, and email me anytime. It

helps me alot to read about other people's experiences with the

band, even if I have to go back into older messages to find the

topics that I am interested in at the moment.

>

> Hi All,

>

> I am so glad to have finally have joined the message board. Most

days

> I really feel like I need the support. I also saw that my new

friend

> , who was in the hospital with me, has posted! Yeah! Now

I can

> get in touch with her (Wrote her email down wrong...) I have been

> having a hard time sticking to the post surgery diet - guess being

> addicted to food makes it like that. This past day has been

really

> frustrating and I just worry that I'm not losing weight fast

enough.

> (I've lost 11 pounds since the beginning of the month.) I realize

this

> is alot, but don't you lose the most right after surgery? I guess

I

> just don't know exactly what to expect. It would be nice to hear

about

> other people and their experiences, especially since I'm new to

the

> group. I even made up a seperate email account on AOL because the

> group sends so many messages, which is great for all the support.

>

> Looking forward to being part of the group,

>

> le

>

[Guest guest]

My son was also diagnosed with cholesteatoma at age 6, in the left ear

only. He now has his fourth in that ear. We've had 5 surgeries and

one pending.

I would see an otologist ASAP, as they are more highly trained than an

ENT. My son had only a few ear infections and was diagnosed with a

hearing loss through a routine test at school. Fortunately, his

pediatrician sent us to an ENT immediately, after a failed hearing

tests.

You will be in my thoughts and prayers. Our first surgery was approx.

6 hours long, including time in recovery. My son has always recovered

quickly and our biggest obstacle is keeping him from injuring himself

while he heals. Tenderness behind the ear has been his only complaint,

and he doesn't like the post-op ear drops. Also, she will most likely

have to keep water out of her ears, possibly forever. We use plugs

with a neoprene headband to hold them in for swimming. With summer

coming, you'll want to have all the " gadgets " for swimming.

If bone is removed, ask is they use titanium replacement. I've heard

it's the best, as other prosthetics can cause reactions and rejection.

Best wishes and do your research. My pediatrician says I know MUCH

more about this condition than he does. He says he's only seen 3 in

his lengthy medical career. Our ENT only sees about 3 per year, where

our otologist sees about 300. I'd consult an otologist before any

surgery.

Good luck,

Sheri

[Guest guest]

Tabitha,

Good luck with this. I would echo what Sheri said and not hesitate

even a minute to get the very best otologist you can find. It doesn't

sound like the ENT was too on top of things, and to have cholesteatoma

in both ears is rare even with a relatively rare disease. Hearing is

so crucial to academic success, and my daughter has had some trouble

with just a unilateral loss. Think of reconstruction now with the

best person you can find as an investment (hearing aids cost $1600 or

so each).

That sounds scary, but in fact there are some really great surgeons

out there with phenomenal success rates, and people can often end up

hearing almost as well as they did before. Just try to find one of

those doctors. You can ask on the list for people near you-- often

there happens to be someone nearby, but I would also think a drive to

Atlanta would be worth it if there's no one local.

--Lynn

PS- the surgery is not too bad for little ones, though they don't like

the restrictions on activity afterwards.

[Guest guest]

Tabitha,

I'm not sure where you are located, but I saw mention of Atlanta. We

researched and communicated with a Dr. Solob (spelling?) at Emory's

Children's Hospital. He has an excellent reputation. We used someone

a bit closer, but he was second on our list.

Good Luck,

Sheri