Hi Everyone

[Guest guest]

It takes about 2 or more months until the ear is pretty much healed.

It is surgery and is pretty painful and can easly get infected if

the proper car is not taken care of. Give your son lots of fluffy

pillows and tlc and he will feel good soon... and have lots of fin

swimming soon.

If he really can not stay away from the water ( I know I love to

swim ) ask your doc. what types of ear plugs he can use. (ear will

hurt from stiches and healing) a soft foam plug might work.

> My son is scheduled for a tympanoplasty with possible mastoidectomy,

> (a month from today), and I was wondering how long after surgery

and

> healing until he is able to swim? With the summer months fast

> approaching, he is worried that he will not be able to swim or get

> water in his ears...Any ideas? Thanks...

> Renonda

[Guest guest]

Thanks for the reply, I figured it would probably be a couple of months before he could go swimming, so maybe towards the middle of summer he'll be ready. I certainly hope so, he doesnt seem to be worried about the surgery (thankfully), only the fact that he might not be able to swim. I guess we'll know soon enough...Thanks for the info...

Renonda

[Guest guest]

Hi Renonda

I know you'll have a hard time waiting while the surgery is taking place. It may take many hours but do bear in mind that the length of time doesn't mean 'bad'. It's very delicate microsurgery and they have to take great care to make sure that they get every bit of the ctoma. I'm sure will have an easier time than you - he gets to sleep through it all! We'll keep you both in our thoughts. Best wishes for a succesful surgery and a speedy recovery

Phil

[Guest guest]

Hi Renonda,

Our thoughts and prayers are with you an !

May the time go quickly and with no complications.

God bless,

Jane

>From: " Renonda " <nonnykay1@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Hi everyone

>Date: Sun, 04 May 2003 11:51:19 -0000

>

>Well group, tomorrow is my son s surgery day. Like most of

>you, Im a bit nervous but glad its finally here, the waiting is such

>a hard part. Hes having a tympanoplasty w/possible mastoidectomy and

>Im praying that no C-toma is discovered, although I know that its

>possible. (We could use a few extra prayers, just to be safe..

>Without this group and all the things that Ive learned, I dont think

>we could be as prepared or confident as we are. Thank you everyone.

>I will post when I can, take care.

>God bless,

>Renonda

>(mom of -13)

>

_________________________________________________________________

Help STOP SPAM with the new MSN 8 and get 2 months FREE*

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[Guest guest]

---Hi Renonda, I will be praying for . It will all be ok. I

know that these things are sometimes harder on the parent than the

patient,LOL. Wishing you both the best of luck, and please keep us

posted through his recovery. Charla

In cholesteatoma , " Renonda " <nonnykay1@a...> wrote:

> Well group, tomorrow is my son s surgery day. Like most of

> you, Im a bit nervous but glad its finally here, the waiting is

such

> a hard part. Hes having a tympanoplasty w/possible mastoidectomy

and

> Im praying that no C-toma is discovered, although I know that its

> possible. (We could use a few extra prayers, just to be safe..

> Without this group and all the things that Ive learned, I dont

think

> we could be as prepared or confident as we are. Thank you

everyone.

> I will post when I can, take care.

> God bless,

> Renonda

> (mom of -13)

[Guest guest]

Best of luck to tomorrow. This time tomorrow, you'll be spoiling your little guy and feeling somewhat relieved that it's over. We;ll be thinking of you !!!

Gus

Hi everyone

Well group, tomorrow is my son s surgery day. Like most of you, Im a bit nervous but glad its finally here, the waiting is such a hard part. Hes having a tympanoplasty w/possible mastoidectomy and Im praying that no C-toma is discovered, although I know that its possible. (We could use a few extra prayers, just to be safe.. Without this group and all the things that Ive learned, I dont think we could be as prepared or confident as we are. Thank you everyone. I will post when I can, take care. God bless,Renonda(mom of -13)

[Guest guest]

Hi Carol

I sure do know you from the Nucleus forum..Like you ,I was able to understand

speech immediately on hookup..not just once but twice as i have both the n22 and

the N24C/Welcome..you will be a great asset to CI Hear!!

Love Dora

Hi everyone

Hi everyone, I'm new on this group!! Some of you may already know me

on the Nucleus forum as Ozcarol. I live in Australia, and was

implanted with the Nucleus 24 Contour in 2001. I was one of the

lucky ones, I could understand speech as speech, in my hookup

session. I am so happy I had the implant done, it is the best

hearing I have ever had. Even now 1.5 years later I am still getting

new CI moments!!

Anyway, just wanted to say hi!!

cheers

Carol.

[Guest guest]

HI Carol,

Welcome to CI Hear. It's so nice to have you join us. Indeed, I do

know who you are.

I also was able to understand speech as speech immediately upon hook

up and could hear the sounds of the world and know exactly what I was

hearing. It was wonderful then and it's still wonderful. I will

never be sorry for my choice to be implanted. It was one of my best

life choices. It was also one of the easiest choices too!

I'll be looking forward to hearing more from you.

<smile>

Alice

N24 11/99

N24C 04/03

Bilateral

[Guest guest]

Hi Carol!

Glad to see you made it here.

There's a terrific bunch of folks here and all so very supportive of

one another.

I know being in australia you will have limited time here on the

internet, but We do look forward to sharing stories with you here too.

I think you'll enjoy it here and I'm so glad you decided to join.

Hugs and happy weekend,

Silly

[Guest guest]

Renonda -- Great news about . Fingers crossed that he will

continue to have a smooth recovery.

Candy

> Hi,

> My son had his 5 wk. post-op visit today, and Im happy to

> report that everything looks great!!...They suctioned his ear, and

> our ENT said the graft looks good and we can return to using normal

> ear plugs instead of the cotton ball/vaseline

> thing..Yipppeee!!...LOL...We are having an ear plug molded for him

> this week with the audiologist so that he may be able to swim this

> summer. Im just thrilled with his progress so far and thought Id

> share this with you all...Thanks again for all of the info thats

been

> passed along....

> Sincerely, Renonda

[Guest guest]

Great news!

-----Original Message-----From: Renonda [mailto:nonnykay1@...]Sent: Tuesday, June 10, 2003 8:24 PMcholesteatoma Subject: Hi everyoneHi,My son had his 5 wk. post-op visit today, and Im happy to report that everything looks great!!...They suctioned his ear, and our ENT said the graft looks good and we can return to using normal ear plugs instead of the cotton ball/vaseline thing..Yipppeee!!...LOL...We are having an ear plug molded for him this week with the audiologist so that he may be able to swim this summer. Im just thrilled with his progress so far and thought Id share this with you all...Thanks again for all of the info thats been passed along....Sincerely, Renonda

[Guest guest]

> I'll try to make this as short and painless (no pun intended) as

possible.

> I tend to be a long poster.

>

> I just joined this group as I am working up to the decision of

having THR

> later this summer or early fall.

>

> Here's the story. In 1988 (at age 36) I was in a horrible car

accident with

> a head on collision with a 60 passenger school bus (that drivers

fault as

> determined by law, not mine. She came over a hill on a country

road on my

> side of the road) and my injuries were severe. I have been

partially

> handicapped since. I get around but in the interviening years

since, it has

> gotten progressively worse. I used to not do too badly physically

but I'm

> about out of time. The pain is exhausting and intense and for

years I've

> had to go shopping for the Holidays in a wheelchair. I am now to

the point

> where I manage fairly well at home yet, although in constant pain

(with a

> ton of help from my husband) but I see more and more of my

abilities to do

> things I want to do as going away. We no longer eat at restaurants

that are

> buffet style as I can't comfortably walk a buffet line. I am fairly

> homebound and no longer do the grocery shopping and the like

locally without

> my husband. I take myself to the local Dr. the hairdresser and to

my

> counselor ( seeing one since the accident as it changed my life so

> drastically) but that drive is 2 hours away and it kills me some

times. I

> sometimes use a cane when I am able to swallow my pride and use

it. It

> doesn't take the pain away, it just stabilizes my gait. I am 51

years old

> now. My son and daughter are grown and gone from home. Our

daughter lives

> in Maine and we've driven there twice in the last 2 years since she

moved

> there (a 1400 mile drive). The first trip in a pickup truck nearly

killed

> me and that was with rest stops and 2 nights in motels on the

road. This

> last time we went in my car (again plenty of stops and 2 nights on

the road)

> which has reclining seats and it was pure bliss if you can call

laying down

> almost all the way across country bliss!!

>

> The reason I say surgery this fall is that I am currently in

extensive

> dental treatment (hadn't been to one since the accident as I was

learning to

> walk again instead) and have to have oral surgery to remove 3

wisdom teeth

> and because of my husbands insurance, it has to be done after the

fiscal

> year change July 1. So, surgery as I understand it should wait

until I'm

> healed from that because of risk of infection in the hip implant

right?

>

> My original injuries were: open ankle fracture right ankle -

shattered

> right knee, now possessing bolts and screws to hold it together -

compound

> fracture of the right arm - 3 fractured ribs - left foot and ankle

have

> permanent nerve damage - left hip fractured in 3 places and pulled

apart at

> the hip socket, partial rehab only partially successful by being in

the

> hospital for 3 months in traction on that side to pull the hip

socket back

> together. One leg is shorter because of all of this but I can't

ever tell

> which one!

>

> So, I am scared witless of THR as the limitations on my right side

with the

> ankle, which now is bone on bone when I walk, scares me as I think

I can

> expect to have to be non weight bearing on the hip replacement side

for how

> long?? Which means all weight bearing on that poor right ankle! I

know

> there are many kinds of hip replacement options now over what there

once

> was. I too am overweight, unfortunately having gained 60 lbs.

since the

> accident. I'm scared a Dr. will require me to lose weight before

they will

> operate and I don't know how to do that when I can't be active

because of

> the pain.

>

> So, that's my story. I'm enjoying this group so far and know all

of you

> will be helpful for me in the long run. Everyone that I know who

has had

> hip replacement surgery says they wish they had done it sooner. In

light of

> all I've been through I'm not going to be a newbie to learning how

to walk

> again as I've done the no weight bearing (although the ankle was in

slightly

> bettter shape then) to a walker to touch weight to crutches to cane

to

> nothing for several years until it started this situation I have

now.

> However I dread it all. I prayed this day would never come but it

has.

> Anyone know an excellent orthopaedic surgeon in Central or Western

Illinois

> or South Eastern Iowa that is a PPO Dr.?

>

> Thanks for listening and Hello everyone.

>

> Sincerely,

> ita

Where do you live in Illinois? I lived near Macomb. Claninhr

[Guest guest]

Wow, Clanihr! I think this post was ages ago when I first joined the group.

I've deleted most of it to have less clutter within this response.

Yes, you hit it on the head. I am very familiar with Macomb. Home of the

summer training camp for the St. Louis Rams. Where did you live when you

were in this area?

I am scheduled for the THR on Sept. 8. Found a Dr. in the Quad Cities that

I just love. Dental/Oral surgery went well and almost healed from it now.

So, I've got the month of Aug. to get myself mentally ready for the THR.

It's been a long road for me.

ita

Re: Hi Everyone

>

> > I'll try to make this as short and painless (no pun intended) as

> possible.

> > I tend to be a long poster.

> >

> > I just joined this group as I am working up to the decision of

> having THR

> > later this summer or early fall.

> >

>

> Where do you live in Illinois? I lived near Macomb. Claninhr

>

[Guest guest]

> > > I'll try to make this as short and painless (no pun intended) as

> > possible.

> > > I tend to be a long poster.

> > >

> > > I just joined this group as I am working up to the decision of

> > having THR

> > > later this summer or early fall.

> > >

>

>

>

> >

> > Where do you live in Illinois? I lived near Macomb. Claninhr

> >

[Guest guest]

Suzan,

I live south of Macomb. Rural Macomb would be the best way to put it. I'm

very familiar with Table Grove. Know people from there and we bought our

daughter a Camero from Burgard Chevrolet in Ipava when she was 16 (she's

now 25 and lives in Maine). I know, what was we thinking buying a teenage

girl a red Camero with T-Tops??? Probably because at the time her brother

had a Ford Mustang. Ha ha. Mr and Mrs Burgard are both passed away now and

their house sold a while back. There is no auto dealership in Ipava now.

Table Grove still is pretty much the same. Bank gets robbed once in a blue

moon is all. Ha ha. Yep. That's where I hail from. Small world huh?

ita

Re: Hi Everyone

>

> > > > I'll try to make this as short and painless (no pun intended) as

> > > possible.

> > > > I tend to be a long poster.

> > > >

> > > > I just joined this group as I am working up to the decision of

> > > having THR

> > > > later this summer or early fall.

> > > >

> >

> >

> >

> > >

> > > Where do you live in Illinois? I lived near Macomb. Claninhr

> > >

>

>

>

>

[Guest guest]

Anita,

I hope it is good news that you & guy are back together, Having Amy back

with you is wonderful news. I'm really happy for you. Sorry to hear about

the blood tests. Alas that is the nature of this disease. You say this

calmly but I've been there and know the frustration. Your liver will get

straight. I hope your family works well also.

Patty

[ ] hi everyone

Importance: High

just thought i would let you know that guy and i are back together and i

have amy back. but blood tests not good. love and hugs anita

__________________________________________________________________________

Join Freeserve http://www.freeserve.com/time/

Winner of the 2003 Internet Service Providers' Association awards for Best

Unmetered ISP and Best Consumer Application.

[Guest guest]

> > > > > I'll try to make this as short and painless (no pun

intended) as

> > > > possible.

> > > > > I tend to be a long poster.

> > > > >

> > > > > I just joined this group as I am working up to the decision

of

> > > > having THR

> > > > > later this summer or early fall.

> > > > >

> > >

> > >

> > >

> > > >

> > > > Where do you live in Illinois? I lived near Macomb. Claninhr

> > > >

> >

> >

> >

> >

[Guest guest]

, relax. Yes, this IS a serious

disease, but don¡Çt listen to the doctor¡Ä.he is just afraid you will learn more

than he knows about this disease. Ignorance is NOT bliss! You are

going to be OK¡Äif you are treated for the AIH, your chances of living a normal

life is great. Indeed, there ARE those who have not been successful with

the treatment and some have died. BUT, with the proper meds and A DOCTOR

WHO KNOWS WHAT THEY ARE DOING (sorry, couldn¡Çt help myself), you are going to

do fine!

Debby

[ ] Hi

everyone

I have been reading the posts and I

have to say as newly diagnosed with AIH this has been really scarey. The

Dr told me not to worry and quit reading stuff on the internet. BUt you

all have been through this and are going through this. I would think that

you know what this is like. I am so afraid of this disease. I have

never had anything like this before and with everything that I read my life is

going to be miserable. I have only been on treatment for a couple of

weeks and I am so afraid that it won't work. Everyone here is so positive

even with all you are going through. My heart is just pounding knowing

that I haven't even experienced half of what is coming my way. I am so

scared that I know I am blubbering in this e-mail. I am afraid of what the

prednisone and Imuran are doing to my body and afraid of what would happen if I

weren't taking it. Does this fear ever go away?

Group

Rules

1. Please no religious, political, race or sexual

preference discussions.

2. NO slamming of other members, advertising or

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To UNsubscribe send a blank e-mail to

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use of is subject to the Terms of Service.

[Guest guest]

hi cindy. please dont panic. i was dx 12 months ago. iwas very scared, but everyone here has helped me so much. i soon realized that even though i had this very serious disease, i could still live a good and long life. i have tried various meds as everyone here knows. i have been using co-enzyme Q10 for the exhaustion and it has worked for me.i realize that it might not help everyone. but one thing i have learned is please check out the internet,. through reading and being with this group i have learnt so much and had so much support. i no longer fear this disease, just handle it the best way i can, i know it is not a death sentance. i have a friend over here in england who has had this disease for 30 years and has just left the army.

please keep in touch with the group

love and hugs

anita

Message date : Oct 08 2003, 05:43 AM From : tdcc2000 To : Copy to : Subject : RE: [ ] Hi everyone

FAMILY=SANSSERIF>, relax. Yes, this IS a serious disease, but don$B!G(Bt listen to the doctor$B!D(B.he is just afraid you will learn more than he knows about this disease. Ignorance is NOT bliss! You are going to be OK$B!D(Bif you are treated for the AIH, your chances of living a normal life is great. Indeed, there ARE those who have not been successful with the treatment and some have died. BUT, with the proper meds and A DOCTOR WHO KNOWS WHAT THEY ARE DOING (sorry, couldn$B!G(Bt help myself), you are going to do fine!

style='font-size:14.0pt;font-family:"Century Gothic";color:black;font-weight: bold'>

style='font-size:14.0pt;font-family:"Century Gothic";color:black;font-weight: bold'>Debby

style='font-size:14.0pt;font-family:"Century Gothic";color:black;font-weight: bold'>

style='font-size:10.0pt;font-family:Tahoma'>-----Original Message-----From: dssll2@... [mailto:dssll2@...] Sent: Tuesday, October 07, 2003 5:25 PM Subject: [ ] Hi everyone

style='font-size:12.0pt'>

style='font-size:10.0pt;font-family:Arial'>I have been reading the posts and I have to say as newly diagnosed with AIH this has been really scarey. The Dr told me not to worry and quit reading stuff on the internet. BUt you all have been through this and are going through this. I would think that you know what this is like. I am so afraid of this disease. I have never had anything like this before and with everything that I read my life is going to be miserable. I have only been on treatment for a couple of weeks and I am so afraid that it won't work. Everyone here is so positive even with all you are going through. My heart is just pounding knowing that I haven't even experienced half of what is coming my way. I am so scared that I know I am blubbering in this e-mail. I am afraid of what the prednisone and Imuran are doing to my body and afraid of what would happen if I weren't taking it. Does this fear ever go away? face=Arial> style='font-size:12.0pt;font-family:Arial'>

[Guest guest]

glad to hear from you also tell chris to be proud of his height the girls like that

is still tiny for her age but she doesnt let it bother her lolol her mouth is loud enough to make up for it

i think your so right about the weather change and the effects it has on this jra

even though its 70 degrees over the weekend melissa complained she was cold

and told it was cooler and she was cold all day and tired

is prepareing for the ACT SAT and ASVAB and also the state GHSGT tests

mostly she studys lolol the teachers have really gotten use to her and says she works great and wish they had kids like her in class lolol

shes looking into georgia state or georgia tech her thing is wanting to stay close to home so she can live at home both of these colleges are very close to me

also has good excersise rooms with pools if she goes with gs tech she will be useing the pool that the 1996 olympics was done in lol

which is chris wanting to go to? tell chris to watch tv in the mornings the woman who does palates comes on this has helped melissa ALOT also go to the library and check out the book so far Palates has been the most helpful less stress on the joints

and muscle and it will strengthen the muscles without you thinking about it

also tell chris short girls like tall boys lol i think so at least my hubby is and i am a short woman lolol

the homebound so far is doing good

keep in touch

later

Robbin

[Guest guest]

Hi Michele,

I hope will be feeling better soon. Sounds like a good idea, to

see if physical therapy can maybe help with increased stiffness in his

back and neck. Your post made me smile. Josh is about 4' 5'' right now

and at 14 and a half years old he's still way below the 3rd percentile

in height. He read a book about Shaquille O'Neil recently. It

mentioned all the teasing he had to deal with for being so

extraordinarily tall at a very young age. Helped open 's eyes to

the other side of the coin. It's not easy either way, when you're at one

of the extremes, especially during adolescence, but learning to accept

and be comfortable with who you are teaches some very valuable lessons.

Chris' Dad is tall too, isn't he?

Aloha,

Georgina

Tepper, Michele wrote:

> Hey, Robbin! Haven't heard from you in sooo long! Good to know that

> you're alive and well.LOL Sorry about 's skin and soreness.

> Hopefully she'll be better soon. How's school going for her? Has she

> thought about any colleges? is just beginning his search. He is

> feeling ok, but he has been rather tired lately - falling asleep by

> 9:30. Very unusual for a 16 year old. Also having more stiffness in his

> neck and some in his back.And he had been doing really well. But the

> change in the season set off his allergies badly this year and he has

> not been 100% since. He goes back to the dr in about 3 weeks and I am

> calling about more physical therapy for him. Basically just something to

> help learn proper back care. He is 6'2 " now and we find that he, like

> many tall people, will stoop a bit. He feels too tall. The stooping is

> not good for his back with the spondy. We encourage him to be proud of

> his height, but you know teens. No one wants to be different at all. It

> was great to " hear " from you again. Check back soon, Michele (16,

> pauci & spondy)

>

> -----Original Message-----

> From: Robbin40@... [mailto:Robbin40@...]

> hi everyone

> just letting yall know we are still alive and well just busy lolol

> is doing ok the skin infections are still there and then

> they go lolol

> they weather here is turning cooler so shes sore some but still

> doing ok

> will get back soon

> how is everyone doing?

> Robbin

[Guest guest]

Hi Renonda

You definitely have our support! Good luck tomorrow.

Phil

Hi everyone

Well, tomorrow is s surgery day and Ill be relieved when it is over. This is his 2nd in less than 6 months. Im hoping that there isnt any c-toma lurking around again and its just a matter of reconstructing the ear drum. It had a total collapse again. Guess we'll know soon enough...Wish us luck, and I'll post as soon as I can...Best wishes to all.Renonda(mom of -13)

[Guest guest]

Renonda,

Best wishes to for a successful surgery tomorrow. Your family will be in my thoughts.

IlonaRenonda <nonnykay1@...> wrote:

Well, tomorrow is s surgery day and Ill be relieved when it is over. This is his 2nd in less than 6 months. Im hoping that there isnt any c-toma lurking around again and its just a matter of reconstructing the ear drum. It had a total collapse again. Guess we'll know soon enough...Wish us luck, and I'll post as soon as I can...Best wishes to all.Renonda(mom of -13)

[Guest guest]

Renonda,

Best of luck to your son tomorrow - hope all goes well. Take care of yourself too.

ann.Renonda <nonnykay1@...> wrote:

Well, tomorrow is s surgery day and Ill be relieved when it is over. This is his 2nd in less than 6 months. Im hoping that there isnt any c-toma lurking around again and its just a matter of reconstructing the ear drum. It had a total collapse again. Guess we'll know soon enough...Wish us luck, and I'll post as soon as I can...Best wishes to all.Renonda(mom of -13)

[Guest guest]

Wow - good for her with all those tests and all that studying. will take the ACT - in the Midwest, the colleges look for that and is staying in our area. He hasn't really decided anything yet, he is looking at where my oldest goes (Marquette in Milwaukee) or a local univ. or maybe a school in Wyoming called Wyoming Tech for auto/diesel technology. He is really unsure of what he wants to do. We figure a few open houses and some internet exploring will help him. I'm not sure how I feel about him going far.

Sometimes I think the weather changing at all can affect things. Whether it gets warm or cold, a shift seems to take alot out of these kids. I called the rheumy's office and of course they are both gone (conference!) so we have decided to wait it out and see the dr in Nov. I figure if I call the peds office, they won't be real sure whats going on either. I am going to let know about the pilates. Perhaps that will help.

I know what you mean about being short - as I am now the shortest in the family. My youngest daughter just passed me up! I am 5'4" and my hubby is 5'11", and the kids are all taller than me! But I let 'em know, no matter how big they all get, I'm still Boss!!! LOL! Michele (16, pauci & spondy)

-----Original Message-----From: Robbin40@... [mailto:Robbin40@...] Sent: Monday, October 27, 2003 8:01 PM Subject: Re: hi everyone glad to hear from you also tell chris to be proud of his height the girls like that is still tiny for her age but she doesnt let it bother her lolol her mouth is loud enough to make up for it i think your so right about the weather change and the effects it has on this jra even though its 70 degrees over the weekend melissa complained she was cold and told it was cooler and she was cold all day and tired is prepareing for the ACT SAT and ASVAB and also the state GHSGT tests mostly she studys lolol the teachers have really gotten use to her and says she works great and wish they had kids like her in class lolol shes looking into georgia state or georgia tech her thing is wanting to stay close to home so she can live at home both of these colleges are very close to me also has good excersise rooms with pools if she goes with gs tech she will be useing the pool that the 1996 olympics was done in lol which is chris wanting to go to? tell chris to watch tv in the mornings the woman who does palates comes on this has helped melissa ALOT also go to the library and check out the book so far Palates has been the most helpful less stress on the joints and muscle and it will strengthen the muscles without you thinking about it also tell chris short girls like tall boys lol i think so at least my hubby is and i am a short woman lolol the homebound so far is doing good keep in touch laterRobbin To leave this mailing list, send request to: -unsubscribe