Re: panicked Mom with questions about wall-down surgery...

[Guest guest]

Hello Marie -

My 5 yr. old son just had a congenital C'toma removed last Wednesday

and although his surgeon didn't use the term " wall-down " , I think it

is the same procedure as " open cavity " where they go in behind the

ear. The surgeon did both procedures to remove the C'toma and I am

happy to tell you that he is doing very well with very little pain.

My husband and I worried like crazy as I am sure you are right now,

but for us it was just a waste of time. He did better than we ever

imagined without asking for pain killers until the third day! Kids

have a higher pain tolerance than we adults do and they bounce back

amazingly.

It has been 5 days since his surgery and all he is complaining about

is a little itching inside the canal where the cotton packing is.

And the fact that he is not allowed to play outside in the snow with

his sister . The surgeon didn't mention that he wouldn't ever be

able to go swimming again but did tell me I could wash his hair the

next day; that is something I will have to find out. Fortunately, we

were referred to a pediatric otologist who is wonderful at what he

does. From what he told me, an open-cavity surgery gives a better

chance at getting to all the C'toma so no cells are left to grow into

another one. I'm surprised that at 6 years old your son went through

3 surgeries before they thought of doing this. Unfortunately, he

will have to go for this one. Hope all goes well for him. Try not

to worry yourself too much; I know it is difficult to see your little

boy having to go through this but remember how fast they bounce

back. Take care.

- Dee

> Hi,

>

> My son, 6 years old, has a congenital cholesteatoma. A very

> aggressive one. He has had 3 surgeries so far, and now they are

> saying it's time to do the wall-down. We are very scared of this

and

> desperately trying to get more information.

>

> I'd like to hear from people who've had the wall-down and what it

> was like.

>

> What kind of complications or discomforts have you experienced

> afterwards? In the short-term? What about the long-term?

>

> Is it true that he will NEVER be able to get his ear wet or go

> swimming?

>

> Are there any alternative options? Has anybody tried Macrobiotics,

> acupuncture, homeopathy, anything?

>

> How in the world does one go about choosing a surgeon for this? We

> had a highly recommended guy at UCSF for the first two surgeries,

> then he went to NY. We struggled, sweated, and agonized to find a

> woman with a 2-yr Otology fellowship (with the Otology Group out of

> Nashville) for the 3rd and now she is out until July on maternity

> leave. We have Kaiser insurance now and would have to borrow the

> money to go outside of their system (the surgeon on the maternity

> leave was the best that we could find within)... are the results

> very variable based on the skill of the surgeon? (assuming you

don't

> get a quack, of course)

>

> Is the wall-down procedure a common operation or rare? How hard is

> it to find somebody who is experienced and used to doing these?

>

> Well, that's a lot of questions but this is the first post from

this

> panic-stricken Mom. I don't know why I never discovered the

> cholesteatoma.org site earlier or this group, despite many, many

> searches on the subject. But I'm happy to have found it at last.

Any

> and all help would be most appreciated.

>

> Yours,

> Marie

[Guest guest]

Dear Dee,

I've never really heard the term " open cavity " used by our doctors,

so I'm not really sure either if it means the same thing. But the

three surgeries my son had were all tympanomastoidectomies where

they go in behind the ear, taking the ear off (almost), and entering

through the mastoid bone. Each time the doctors thought they had got

it all, but it has grown back every time. The " wall-down " version is

different in that they still go in behind the ear, but they

take " down " the ear canal wall, enlarging the entire middle ear

cavity so that from now on, he will go into the doc's office every 3

to 6 months to get the ctoma removed right there in the doc's

office. This is what they do when they get to the point of realizing

that they never will get it all. Or, I gather, the ctoma can do some

things that will cause them to do this; for example, our surgeon

said that if the ctoma goes into the inner ear, they do the wall-

down because they don't want to remove it all and expose the inner

ear (if they do the auditory nerve dies). So they leave a matrix of

the ctoma covering the inner ear, take down the canal wall, and keep

the ctoma under control by cleaning it out in the doc's office on a

regular basis. Luckily, my son doesn't have THIS problem.

I understand that they reconstruct some kind of ear drum, but waaay,

waay back in the middle ear behind the area where the ctoma is

likely to be. With this procedure, they cannot reconstruct the

hearing and the ear is no longer self-cleaning (even if the ctoma

should dwindle away someday). Also, as I mentioned, I heard the

patient isn't supposed to get water in the ear anymore.

Does your little boy still have an ear drum in the usual place? If

so, he probably didn't have this same procedure. Please let me know

though if you still think he did, as I would be more than thrilled

to get such a good report on it.

You are also lucky it was so pain-free for him. The docs told us it

was very painless and did not bother to prescribe painkillers.

Unfortunately, my son experienced his first surgery as very, very

painful. Now, as a matter of course, I make sure they are giving him

morphine as he first comes out of the surgery, then switch to

codeine-tylenol for a day or two, then he is fine.

Yours,

Marie

[Guest guest]

Hi Marie,

You asked a lot of good questions. First of all, my son, Dan has struggled with Ctoma since he was six. He had his fourth surgery in Feb 2003. They did a CWD procedure and then in Dec 2003, he had reconstruction. As far as the pain goes, he was in no more or less pain than from the other three surgeries. He had tylenol with codiene for a few days after and then he was feeling fine.

As far as doctors, I would look to have only an otologist perform this surgery. It is a specialized operation and reconstruction demands an experienced ear doctor. Good luck with that.

My son's otologist has always been pretty clear that no water should get in the ear. For the summer of 2003, I got him molded ear plugs for swimming. He however is VERY careful. He rarely goes under water and certainly does not swim under water, definetely no diving. I'm lucky, he is very diligent about this. But, he can play in the water with his brother and friends just fine. We expect this to be the case for the rest of his life and it really is ok with him. He plays many other sports, loves music, etc so life goes on. It was sad at first but he's learned to compensate. We always go to the beach every summer and ride the waves. For the summer of 2003, we passed on the beach vacation since he had the CWD and no reconstruction which meant no eardrum. Now, he has an eardrum so we're going back to the beach this summer. My otologist said that he has seen promising statistics for keeping the ear as dry as possible and putting antibiotic drops in the ear at bedtime after a day of swimming. So, we're going to use the plugs again, ear drops and see what happens.

The CWD procedure was the right thing for my son. His ctoma was also very aggressive so they had to finally make sure they got it. I know how you feel, I too felt that it was an 'drastic' procedure. I'm a statistician and examined the data with reoccurence for CWD versed notCWD and chances of reoccurrance was much lower with CWD. It was getting to the point where it was surgery every winter to either remove or reconstruct so it was time. It sounds like your son is at that point too.

Best of luck to you, your son and family. You seem very knowledgable and should be commended on your pursuit of knowledge on your son's behalf. Please keep us posted.

Gus

panicked Mom with questions about "wall-down" surgery...

Hi,My son, 6 years old, has a congenital cholesteatoma. A very aggressive one. He has had 3 surgeries so far, and now they are saying it's time to do the wall-down. We are very scared of this and desperately trying to get more information.I'd like to hear from people who've had the wall-down and what it was like. What kind of complications or discomforts have you experienced afterwards? In the short-term? What about the long-term? Is it true that he will NEVER be able to get his ear wet or go swimming?Are there any alternative options? Has anybody tried Macrobiotics, acupuncture, homeopathy, anything?How in the world does one go about choosing a surgeon for this? We had a highly recommended guy at UCSF for the first two surgeries, then he went to NY. We struggled, sweated, and agonized to find a woman with a 2-yr Otology fellowship (with the Otology Group out of Nashville) for the 3rd and now she is out until July on maternity leave. We have Kaiser insurance now and would have to borrow the money to go outside of their system (the surgeon on the maternity leave was the best that we could find within)... are the results very variable based on the skill of the surgeon? (assuming you don't get a quack, of course)Is the wall-down procedure a common operation or rare? How hard is it to find somebody who is experienced and used to doing these?Well, that's a lot of questions but this is the first post from this panic-stricken Mom. I don't know why I never discovered the cholesteatoma.org site earlier or this group, despite many, many searches on the subject. But I'm happy to have found it at last. Any and all help would be most appreciated.Yours,Marie