Re: Reconstruction now or later? Dangerous to wait?

[Guest guest]

Hi,

I'm not sure what to say about the issues of the surgeon not doing a second look unless he does reconstruction and about the spot...it sounds weird and I think he SHOULD look. I'm sure others will have more to say on that point.

However, I can say that our 7-yr old just got a hearing aid for his deaf, ctoma right ear and, while we haven't had it long enough to see all the down sides, we are just totally jazzed. He LOVES it! He thinks stereo sound is the coolest thing he's come across in some time. We love it, too. You won't realize how much energy you are spending raising your voice, repeating yourself, and wondering if he is ignoring you because he doesn't hear you or just taking advantage and pretending he doesn't hear you, etc... until you don't have to do it anymore. What a relief! I am amazed!

Also, very significantly, the minute he puts it on and can really hear what is going on, he becomes a calmer, quieter child. The whole noise and stress level in our family goes down a big notch with the hearing aid. Totally worth it. I never would have guessed that the difference would be so big for all of us.

Re: the classroom, my son is doing fine, too, but when I sat in on the class and really watched him, it was obvious, especially in group activity, bustling, noisy type situations, that he couldn't hear instructions from the teacher and was faking it by following what the rest of the kids were doing. So, I would say you may think he's doing fine, but you could probably make things a lot easier for him with either a hearing aid or reconstruction. And he would then do even better. Why have him working to hear when it could be almost effortless and he could be spending his energy on more important things?

So, whatever else you do, do be sure to get your son's hearing back to optimum as quickly as you can. We still have a second-look and possible reconstruction out there in June '05 but we went ahead with the hearing aid in the meanwhile for school and quality of life and I'm really, really, glad we did. Partly due to encouragement from this group, too, so thanks to all of you. You really have made a difference to Curtis!

Love to you all,

Marie

[Guest guest]

I'd go back to the surgeon. When my son's prosthesis slipped, it was because the ctoma was growing again and pushing them out of position. The hearing loss was the first symptom but I didn't know it at the time.

Not to worry you... there could be other reasons, too. But, judging from what I've read on this list, even ENTs don't always get the ctoma thing. Our regular doc was clueless and never diagnosed Curtis for a year. We didn't get a diagnosis until we went in for standard ear tube surgery, then they realized that the "fluid" was something solid.

Marie

[Guest guest]

One more comment from Marie, because I saw somebody else say waiting 2 to 4 years is probably okay... with my son, 1 year after his first removal, he had a second removal. The surgeon came out of the OR after the 2nd removal and said in that one year the ctoma had grown into the biggest ctoma she had ever seen, filling every nook and cranny of his ear and going down the eustachian tube as well. We were blessed in that there was no additional bone loss. This may not be the normal course of things, but I wouldn't wait 2 years, personally.

Marie

[Guest guest]

It was not too long ago that the Docs perfered to wait

2 years before reconstuction, in my case I waited 4

years. This gives the ear time to totaly heal and if

the c-toma was to come back it would do it in that

time frame. There is no reason why you have to have

it now, it might be cheaper to do it now verse all the

expences you would have to pay for again. Never the

less, I'm in the crowd that would say it would not

hurt to wait to do it...

tom hansen

--- Dee <scrapidee@...> wrote:

>

> Hi everyone! Haven't posted in awhile. My son had

> a congental

> cholesteatoma removed last February. His surgeon

> attempted to

> reconstruct at the same time but the bone slipped

> and didn't take.

> He saw his surgeon again in September, 7 months

> after his surgery.

> Was just suppose to be a follow up appointment but I

> pushed for a CAT

> scan because Brody had a very bad ear infection and

> I was worried.

> Although his surgeon said everything looked fine,

> the CAT scan showed

> a little spot that could just be fluid. Or of

> course, could be a

> regrowth. His surgeon will scheduled Brody for

> reconstruction in

> Feb. or March 2005 but said it is up to us if we

> want to wait until

> Brody is older. I am afraid to wait because of the

> " spot " but don't

> know if reconstruction at this point is a good idea

> either. He has

> mild hearing loss and is not affecting him a whole

> lot. We do have

> to repeat things quite a bit but he is doing alright

> in school. He

> is a very active 6 year old and after reconstruction

> will not be able

> to jump around and play. This is my main concern of

> having

> reconstruction. If the surgery doesn't take, his

> surgeon won't

> attempt another operation until he is older,

> probably in his teens.

> So does he go through another surgery and hope that

> it heals well and

> works, or does he wait until he is older, and

> possibly give

> the " spot " more time to grow. The surgeon didn't

> mention a second

> look. Just that when he does reconstruction, if

> there is a regrowth,

> he will remove it then. He only had the one ear

> infection after the

> C'toma removal but often complains that he feels his

> bad ear is

> leaking, but nothing is there. I would appreciate

> any suggestions or

> experiences. BTW, the children's hospital where his

> surgeon is, is a

> 4 1/2 hour drive away, which makes it difficult to

> see him.

>

>

>

>

__________________________________________________

[Guest guest]

In a message dated 11/10/2004 11:26:26 AM Pacific Standard Time, scrapidee@... writes:

Were there any signs or symptoms that the C'toma grew

back? I spoke with the ENT clinic earlier today about having a

second look if we don't have the reconstruction and she told me that

the surgeon was happy with Brody's CAT scan and probably won't need

another look for a couple of years. I don't agree with this. Seems

to me that if he operated on Brody earlier the first time (instead of

putting off the surgery for 8 months) the hearing bones would not

have been eroded in the first place. - Dee

Eventually, a retraction pocket showed up. So, if you do wait, you should take him in every 6 months just to have the surgeon look at the ear drum. Also, I have since recognized more early symptoms... my son gets car sick and we start having increased problems with this as the very first symptom.

If your surgeon put off the surgery for 8 months the first time and now wants to wait several years, maybe he just has a ctoma approach that doesn't suit you. Or maybe he is not used to ctoma in children. I know that the Otologist we talked to said that in children the ctomas can come back much faster than in adults. They "come roaring back like a train" was the exact phrase she used.

Maybe a 2nd opinion would be a good thing, especially if you can find an Otologist with a lot of experience dealing with children.

Marie

[Guest guest]

Interested in the “slipping”…Myson’s follow ups all went very smoothly. Not long after though, (within a week),I thought I noticed a relapse, of sorts, of the hearing difficulties. I’m wondering if we can take him toa regular physician to look in his ear to see if all is well…or would weneed to trek back to the surgeon? Of course, I’m willing to do that but I just don’t want tofill his busy schedule with an appointment that’s bogus, you know? So, I guess my question is…would aregular doc be able to spot a “slipped” bone reconstruction? Thanks! -----Original Message-----From: Dee[mailto:scrapidee@...] Sent: Wednesday, November 10, 20049:12 AMcholesteatoma Subject: Reconstruction now or later? Dangerous to wait? Hi everyone! Haven't posted in awhile. My son had a congental cholesteatoma removed last February. Hissurgeon attempted to reconstruct at the same time but the bone slippedand didn't take. He saw his surgeon again in September, 7 monthsafter his surgery. Was just suppose to be a follow up appointment butI pushed for a CAT scan because Brody had a very bad ear infectionand I was worried. Although his surgeon said everything looked fine,the CAT scan showed a little spot that could just be fluid. Or ofcourse, could be a regrowth. His surgeon will scheduled Brodyfor reconstruction in Feb. or March 2005 but said it is up to us if wewant to wait until Brody is older. I am afraid to wait becauseof the " spot " but don't know if reconstruction at this point is a goodidea either. He has mild hearing loss and is not affecting him a wholelot. We do have to repeat things quite a bit but he is doingalright in school. He is a very active 6 year old and afterreconstruction will not be able to jump around and play. This is my mainconcern of having reconstruction. If the surgery doesn'ttake, his surgeon won't attempt another operation until he is older,probably in his teens. So does he go through another surgery and hopethat it heals well and works, or does he wait until he is older, andpossibly give the " spot " more time to grow. Thesurgeon didn't mention a second look. Just that when he does reconstruction,if there is a regrowth, he will remove it then. He only had the oneear infection after the C'toma removal but often complains that he feelshis bad ear is leaking, but nothing is there. I wouldappreciate any suggestions or experiences. BTW, the children's hospitalwhere his surgeon is, is a 4 1/2 hour drive away, which makes it difficult tosee him.This Cholesteatoma support group offers and provides information of a general natureabout cholesteatoma as well as members personal experiences with this disease.The information provided is not intended to replace surgical or medical adviceor recommendations. Any information in the messages, postings or articles onthe web site should not be considered a substitute for consultation with amedical professional to address individual medical needs. Individuals'particular facts and circumstances will determine the treatment which is mostappropriate.

[Guest guest]

I think it was the audio test that determined the slipped bone. My

son had that done about 6 weeks after his surgery.

> Interested in the " slipping " .My son's follow ups all went very

smoothly.

> Not long after though, (within a week), I thought I noticed a

relapse,

> of sorts, of the hearing difficulties. I'm wondering if we can

take him

> to a regular physician to look in his ear to see if all is well.or

would

> we need to trek back to the surgeon? Of course, I'm willing to do

that

> but I just don't want to fill his busy schedule with an appointment

> that's bogus, you know? So, I guess my question is.would a regular

doc

> be able to spot a " slipped " bone reconstruction? Thanks!

>

> Reconstruction now or later? Dangerous to

wait?

>

>

> Hi everyone! Haven't posted in awhile. My son had a congental

> cholesteatoma removed last February. His surgeon attempted to

> reconstruct at the same time but the bone slipped and didn't take.

> He saw his surgeon again in September, 7 months after his surgery.

> Was just suppose to be a follow up appointment but I pushed for a

CAT

> scan because Brody had a very bad ear infection and I was worried.

> Although his surgeon said everything looked fine, the CAT scan

showed

> a little spot that could just be fluid. Or of course, could be a

> regrowth. His surgeon will scheduled Brody for reconstruction in

> Feb. or March 2005 but said it is up to us if we want to wait until

> Brody is older. I am afraid to wait because of the " spot " but

don't

> know if reconstruction at this point is a good idea either. He has

> mild hearing loss and is not affecting him a whole lot. We do have

> to repeat things quite a bit but he is doing alright in school. He

> is a very active 6 year old and after reconstruction will not be

able

> to jump around and play. This is my main concern of having

> reconstruction. If the surgery doesn't take, his surgeon won't

> attempt another operation until he is older, probably in his

teens.

> So does he go through another surgery and hope that it heals well

and

> works, or does he wait until he is older, and possibly give

> the " spot " more time to grow. The surgeon didn't mention a second

> look. Just that when he does reconstruction, if there is a

regrowth,

> he will remove it then. He only had the one ear infection after

the

> C'toma removal but often complains that he feels his bad ear is

> leaking, but nothing is there. I would appreciate any suggestions

or

> experiences. BTW, the children's hospital where his surgeon is, is

a

> 4 1/2 hour drive away, which makes it difficult to see him.

>

>

>

>

>

>

[Guest guest]

Marie,I’m so glad to hear this good news about your family and Curtis! Curtis is lucky to have you looking outfor his best interests! JTara -----Original Message-----From: we4counts@...[mailto:we4counts@...] Sent: Wednesday, November 10, 20041:57 PMcholesteatoma Subject: Re: Reconstruction now or later? Dangerous to wait? Hi,I'm not sure what to say about the issues of the surgeon not doing a secondlook unless he does reconstruction and about the spot...it sounds weird and Ithink he SHOULD look. I'm sure others will have more to say on that point. However, I can say that our 7-yr old just got a hearing aid for his deaf, ctomaright ear and, while we haven't had it long enough to see all the down sides,we are just totally jazzed. He LOVES it! He thinks stereo sound is the coolestthing he's come across in some time. We love it, too. You won't realize howmuch energy you are spending raising your voice, repeating yourself, andwondering if he is ignoring you because he doesn't hear you or just takingadvantage and pretending he doesn't hear you, etc... until you don't have to doit anymore. What a relief! I am amazed! Also, very significantly, the minute he puts it on and can really hear what isgoing on, he becomes a calmer, quieter child. The whole noise and stress levelin our family goes down a big notch with the hearing aid. Totally worth it. Inever would have guessed that the difference would be so big for all of us.Re: the classroom, my son is doing fine, too, but when I sat in on the classand really watched him, it was obvious, especially in group activity, bustling,noisy type situations, that he couldn't hear instructions from the teacher andwas faking it by following what the rest of the kids were doing. So, I wouldsay you may think he's doing fine, but you could probably make things a loteasier for him with either a hearing aid or reconstruction. And he would thendo even better. Why have him working to hear when it could be almost effortlessand he could be spending his energy on more important things?So, whatever else you do, do be sure to get your son's hearing back to optimumas quickly as you can. We still have a second-look and possible reconstructionout there in June '05 but we went ahead with the hearing aid in the meanwhilefor school and quality of life and I'm really, really, glad we did. Partly dueto encouragement from this group, too, so thanks to all of you. You really havemade a difference to Curtis!Love to you all,Marie This Cholesteatoma support group offers and provides information of a generalnature about cholesteatoma as well as members personal experiences with thisdisease. The information provided is not intended to replace surgical ormedical advice or recommendations. Any information in the messages, postings orarticles on the web site should not be considered a substitute for consultationwith a medical professional to address individual medical needs. Individuals'particular facts and circumstances will determine the treatment which is mostappropriate.

[Guest guest]

Hi Marie - Were there any signs or symptoms that the C'toma grew

back? I spoke with the ENT clinic earlier today about having a

second look if we don't have the reconstruction and she told me that

the surgeon was happy with Brody's CAT scan and probably won't need

another look for a couple of years. I don't agree with this. Seems

to me that if he operated on Brody earlier the first time (instead of

putting off the surgery for 8 months) the hearing bones would not

have been eroded in the first place. - Dee

> One more comment from Marie, because I saw somebody else say

waiting 2 to 4

> years is probably okay... with my son, 1 year after his first

removal, he had a

> second removal. The surgeon came out of the OR after the 2nd

removal and said

> in that one year the ctoma had grown into the biggest ctoma she had

ever

> seen, filling every nook and cranny of his ear and going down the

eustachian tube

> as well. We were blessed in that there was no additional bone loss.

This may

> not be the normal course of things, but I wouldn't wait 2 years,

personally.

>

> Marie