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I feel so sorry for you. Life is full of sadness. My

son went through this too. Although he seemed bounce

back quickly, he remembers everything everything about

the surgery. It is painful for the kids but even worse

for us. Take good care of your little one and

yourself.

Good luck.

Yan

--- tahoetreefort <tahoetreefort@...> wrote:

> Hi,

>

> My just turned six year old will be going in to

> surgery on Saturday.

> She had her last surgery on 6/13/06, massive

> cholesteatoma. We've been

> doing CT scans every six months and her last one in

> Dec. showed a 4mm

> growth. The doc says it will take about 2 hours as

> she has a cochlear

> implant and has to work very delicately around that.

> A normal person

> would only take about 1/2 hour. Last time she was in

> the hospital for

> four days (after nine hours of surgery)! Any input

> on what we can

> expect recovery wise this time? I feel so sad for

> her, this will be her

> third surgery and I know how quick kids bounce back,

> but it doesn't

> make it any easier.

>

>

>

>

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Hi - My heart goes out to you and your little one - from aged 6 to 20 I had 12 ear surgeries then a couple more for tubes inserted in my 40's and now at 50 I am going in for my 2nd c-toma - after this one I will need hearing aids . My advice is to be brave for your little one as she will look to you for strength and as a Mom it is so hard not to worry over everything. I am sure your daughter is a very brave little girl having had so many hospital visits.

After reading some of the posts on this group I feel very fortunate as I had near normal hearing for almost 25 years - I know my story could have been much worse.

Kinds regards,

Re: Surgery Again

I feel so sorry for you. Life is full of sadness. Myson went through this too. Although he seemed bounceback quickly, he remembers everything everything aboutthe surgery. It is painful for the kids but even worsefor us. Take good care of your little one andyourself. Good luck.Yan--- tahoetreefort <tahoetreefort> wrote:> Hi,> > My just turned six year old will be going in to> surgery on Saturday. > She had her last surgery on 6/13/06, massive> cholesteatoma. We've been > doing CT scans every six months and her last one in> Dec. showed a 4mm > growth. The doc says it will take about 2 hours as> she has a cochlear > implant and has to work very delicately around that.> A normal person > would only

take about 1/2 hour. Last time she was in> the hospital for > four days (after nine hours of surgery)! Any input> on what we can > expect recovery wise this time? I feel so sad for> her, this will be her > third surgery and I know how quick kids bounce back,> but it doesn't > make it any easier.> > > > ____________ _________ _________ _________ _________ _________ _You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. http://tc.deals. / tc/blockbuster/ text5.com

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For All- God has given the beautiful organ of Hearing, but has made its anatomy and functioning so complicated,

that any operting surgeon should feel HIS presence as Super Power.

For -Sorry to know that such a tiny girl had to under go such a prolonged surgery.

If the cholesteatoma is in the top portion of ear (Attic) it remains active there for months before extending down

to reach the Incus and Stapes.

If C-toma is in the postero superior part then it quickly destroys the long process of incus to disrupt the conduction mechanism.

Long process of incus is highly vulnerable to necrosis, may be due to por blood supply extending to tip.

C-toma has to be removed or it will disrupt the electrode of Coch-Implant, but it will be months and years to do so.

So do not worry the results will be good. Surgeon ALWAYS tries to do his/ her best because his reputation & career is at stake,

but there are always limitation to medical science.

Arun

On 4/9/08, tahoetreefort <tahoetreefort@...> wrote:

Hi,My just turned six year old will be going in to surgery on Saturday. She had her last surgery on 6/13/06, massive cholesteatoma. We've been doing CT scans every six months and her last one in Dec. showed a 4mm

growth. The doc says it will take about 2 hours as she has a cochlear implant and has to work very delicately around that. A normal person would only take about 1/2 hour. Last time she was in the hospital for

four days (after nine hours of surgery)! Any input on what we can expect recovery wise this time? I feel so sad for her, this will be her third surgery and I know how quick kids bounce back, but it doesn't

make it any easier.

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  • 8 months later...

eenie meenie minee mo....which joint is next to go? I wish I may I wish I might

know the answer that will be right!

Last May, after a few days of horrible pain stopping me in my tracks.....for me

that means I could'nt go shopping or when I did I had to cut the trip short, I

called my?-at that time-?ortho surgeon. After looking at my hip xrays it was

decided my 16 year old hip replacements needed some revision. The left, which he

said was worse, would go first and surgery was scheduled for June 19th. As many

of you know that didn't come to be. I went to the hospital that morning. The

anesthesia team came in the room to talk with me of their plans. After seeing my

limited neck movement and mouth opening they seemed a bit bewildered and

honestly put?alot of?fear in me. The attempt to intubate was made, but failed

with poor results for me. Short of death, I was admitted to the hospital due to

the torture committed to my body, leaving me with bloody fluid in my lungs.

After 3 days I was released and left to plot for another attempt. I rescheduled

for July 17th but with my hip feeling fine and being very skeptic I cancelled

and never rescheduled. Imagine that!

One of the reasons for my skepticism was not that my doctor had insisted on a

revision of the left hip but that he wouldn't listen to me when I said

repeatedly my left knee hurts. AND it hurt bad all the time and left me unable

to do my favorite pastimes, window shop at the local malls and go for walks at

my favorite parks. Worse than that it would wake me at night, make me stand 3

minutes on the left leg before I could even think of putting the right leg to

the floor. Then seveal minutes of " whoa, wow and please " followed but eventually

the foot made it to the floor, I could walk and the knee allowed me 30 - 60

minutes of walk time before saying sit the hell down but don't sit for more than

15 because the procedure would start again. Left leg first......the best I could

get was an injection of steroid in the knee and let me say, those don't feel

good, last only a little while, and?then the ritual starts again. Pain,

injection, feel good, thenz back to pain....you get the picture. I had 8

injections in about 4 years but not one xray. Why did I not say anything or do

anything is because I thought the doc knew what he was doing yet, I knew better.

The peculiar thing is, prior to my June 19 attempt at hip revision I told family

and friends I didn't understand how the right knee was going to see me through

the rehab of a left hip revision. I was very concerned about this.

Now, as I look back , I once again can say things happen for a reason...........

Two months ago, I was reduced to taking the demonic prednisone dose pack?to see

if it could help my knee and it did until I went off of it. Last week I could

not take anymore and played with the decision what ortho do I call? My old ortho

who now has as his assistant my very old ortho. My very old ortho was my doc

from time of diagnosis in 1970 until his retirement a few years ago. Damn

him....to leave me like that! Well he is back on?a part time basis and only

assist in surgeries but hey, he is back and he knows me and knows me well. He

did my original bi lateral hip surgery in 1993 as well as all of my other ortho

surgeries. It didnt take me long to decide to go see my old and very old orthos

for a second opinion, if you will.

I told Tony before we went into the orthos office to not say anything about my

failed hip revision because when I made the?appointment phone call I told them

my knees and hips were bothering me. My hips were 16 years old and needed to be

looked at anyway. Upon arrival I was escorted to the wonderfully hard and cold

xray table for what was a trip of curiousity and hopefully a resolution.

With anticipation I waited for what is now, once again, my ortho to come in and

go over the xrays. Tony and I both were wondering what the conclusion would be

and hoped for an answer to what was causing me to hurt. Was it the hip(s) making

the knee(s) hurt or vice versa or was it just sciatica??The doc?looked at the

hips first and his first 'make-my-jaw' drop comment was, " the hips do not look

that bad but eventually will need some revising " . I looked at Tony, Tony looked

at me and I said " which one appears to be the worst? " , like I didn't know. His

response, which is what I thought, was, " the right hip is a little more worn and

has some wearing that has created cysts and will likely need to go before the

left " . WOW... less than a year ago it was the left! What the hell???? Ok so lets

move on to the knees....... " Hmm " , he said, " the right knee is hurting alot " . No

crap doc thats why I am here!! Bone on Bone, no cartilage, leaning to one side

and will not come close to being straight, the doc says it needs to be replaced.

Wow, can ya believe that? I knew all along even back last June it was the Rt

Knee not the left hip and for this reason I postponed and postponed the hip

revision.

Needless to say I have shook my head alot the last few days and I have been

telling myself what I have always known.... I do know my body and its alarm

system better than any doc on this planet. I listened to my intuition and did

not have the revision and I did follow my knees plea to call the old ortho.

Medicine is a science and it is just that that it not always a given nor is it

always correct but I believe the intuition the resides in us all is sometimes

the best alert system we have, so follow that and precede, which is what I am

doing.

Although, I am still a bit confused by it all, I have a sense of satisfaction

and on February 16 I will start my bodies repair work by having a new right knee

put in which I know will put me back in the malls and back on my walks in the

park. I know the road will be long because I also know eventually?the left knee

will need replaced? along with the hip revisions but at least for now I feel I

am on the right road.....

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Donna,

although last June was terrifying, it seems God was sparing you from a surgery

you should not have had....so that now you may have the surgery you truly need. 

We will be praying for you that all goes smoothly and after your recovery, you

will be able to begin enjoying your walks in the park and the malls.  You are

such an inspiration to all of us on the JRA group. 

Please keep us up to date at the time nears and when you have your surgery.  We

will be praying for your health, surgery, and recovery. 

You are in our thoughts and prayers,

& (18, poly, pidd, hashimotos)

From:

ajaoky@... <ajaoky@...>

Subject: surgery again

ajao_young_adults ,

Date: Friday, January 9, 2009, 9:57 AM

eenie meenie minee mo....which joint is next to go? I wish I may I wish I might

know the answer that will be right!

Last May, after a few days of horrible pain stopping me in my tracks.....for me

that means I could'nt go shopping or when I did I had to cut the trip short, I

called my?-at that time-?ortho surgeon. After looking at my hip xrays it was

decided my 16 year old hip replacements needed some revision. The left, which he

said was worse, would go first and surgery was scheduled for June 19th. As many

of you know that didn't come to be. I went to the hospital that morning. The

anesthesia team came in the room to talk with me of their plans. After seeing my

limited neck movement and mouth opening they seemed a bit bewildered and

honestly put?alot of?fear in me. The attempt to intubate was made, but failed

with poor results for me. Short of death, I was admitted to the hospital due to

the torture committed to my body, leaving me with bloody fluid in my lungs.

After 3 days I was released and left to plot for another attempt. I rescheduled

for July 17th but with my

hip feeling fine and being very skeptic I cancelled and never rescheduled.

Imagine that!

One of the reasons for my skepticism was not that my doctor had insisted on a

revision of the left hip but that he wouldn't listen to me when I said

repeatedly my left knee hurts. AND it hurt bad all the time and left me unable

to do my favorite pastimes, window shop at the local malls and go for walks at

my favorite parks. Worse than that it would wake me at night, make me stand 3

minutes on the left leg before I could even think of putting the right leg to

the floor. Then seveal minutes of " whoa, wow and please " followed but eventually

the foot made it to the floor, I could walk and the knee allowed me 30 - 60

minutes of walk time before saying sit the hell down but don't sit for more than

15 because the procedure would start again. Left leg first......the best I could

get was an injection of steroid in the knee and let me say, those don't feel

good, last only a little while, and?then the ritual starts again. Pain,

injection, feel good, thenz back to

pain....you get the picture. I had 8 injections in about 4 years but not one

xray. Why did I not say anything or do anything is because I thought the doc

knew what he was doing yet, I knew better.

The peculiar thing is, prior to my June 19 attempt at hip revision I told family

and friends I didn't understand how the right knee was going to see me through

the rehab of a left hip revision. I was very concerned about this.

Now, as I look back , I once again can say things happen for a reason......

......

Two months ago, I was reduced to taking the demonic prednisone dose pack?to see

if it could help my knee and it did until I went off of it. Last week I could

not take anymore and played with the decision what ortho do I call? My old ortho

who now has as his assistant my very old ortho. My very old ortho was my doc

from time of diagnosis in 1970 until his retirement a few years ago. Damn

him....to leave me like that! Well he is back on?a part time basis and only

assist in surgeries but hey, he is back and he knows me and knows me well. He

did my original bi lateral hip surgery in 1993 as well as all of my other ortho

surgeries. It didnt take me long to decide to go see my old and very old orthos

for a second opinion, if you will.

I told Tony before we went into the orthos office to not say anything about my

failed hip revision because when I made the?appointment phone call I told them

my knees and hips were bothering me. My hips were 16 years old and needed to be

looked at anyway. Upon arrival I was escorted to the wonderfully hard and cold

xray table for what was a trip of curiousity and hopefully a resolution.

With anticipation I waited for what is now, once again, my ortho to come in and

go over the xrays. Tony and I both were wondering what the conclusion would be

and hoped for an answer to what was causing me to hurt. Was it the hip(s) making

the knee(s) hurt or vice versa or was it just sciatica??The doc?looked at the

hips first and his first 'make-my-jaw' drop comment was, " the hips do not look

that bad but eventually will need some revising " . I looked at Tony, Tony looked

at me and I said " which one appears to be the worst? " , like I didn't know. His

response, which is what I thought, was, " the right hip is a little more worn and

has some wearing that has created cysts and will likely need to go before the

left " . WOW... less than a year ago it was the left! What the hell???? Ok so lets

move on to the knees....... " Hmm " , he said, " the right knee is hurting alot " .

No crap doc thats why I am here!! Bone on Bone, no cartilage, leaning to one

side and will

not come close to being straight, the doc says it needs to be replaced. Wow,

can ya believe that? I knew all along even back last June it was the Rt Knee not

the left hip and for this reason I postponed and postponed the hip revision.

Needless to say I have shook my head alot the last few days and I have been

telling myself what I have always known.... I do know my body and its alarm

system better than any doc on this planet. I listened to my intuition and did

not have the revision and I did follow my knees plea to call the old ortho.

Medicine is a science and it is just that that it not always a given nor is it

always correct but I believe the intuition the resides in us all is sometimes

the best alert system we have, so follow that and precede, which is what I am

doing.

Although, I am still a bit confused by it all, I have a sense of satisfaction

and on February 16 I will start my bodies repair work by having a new right knee

put in which I know will put me back in the malls and back on my walks in the

park. I know the road will be long because I also know eventually?the left knee

will need replaced? along with the hip revisions but at least for now I feel I

am on the right road.....

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

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i was glued to this post because i've wanted so badly

to write about the same thing. you did an awesome job

of writing the whole long story...and kept it readable.

thank you so much for stepping up to the soapbox and

spreading this info. that so many people need to know

and understand in order to be their own advocates and

guardians.

kudos.

~osh

>

>

> eenie meenie minee mo....which joint is next to go? I wish I may I

wish I might know the answer that will be right!

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Thank you Osh! as hard as it is to know whats right vs what the docs say?vs

what?your own body says I believe it is so important to hear the doc, step back

a minute, listen to your heart, your head and of course your achy joints and

then make the most informed decision you can and always, always educate yourself

by talking to others who have been there and done that.

Donna

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