Re: second look surgery

[Guest guest]

Hi, everyone,

I haven't posted in a while, as we have so many people who are much more

knowledgeable that I am that I've just read their responses. I need your

advice now.

I had my four month post op appointment today and my otologist says the

eardrum graft has healed beautifully ( he really seemed delighted). Of

course, as he told me in my first post op, he wants to do a second look

surgery in the next few months. He said that the original cholesteatoma was

more than he expected and it had grown to the windows (oval and round). He

did not seem particularly optimistic about reconstruction. He said he would

go in through the original incision, as he had done the drilling through the

bone before and that would take less time than the original surgery. In the

initial surgery last May, he repositioned the ossicles and put a piece of

cartilage in as a bridge between the eardrum and the stapes (I think). He

said, if he thought it would work, he would do an implant, but his goal is

to make sure all c-toma is removed, yada -yada.( I know that is the real

point of all of this, but my hearing is so much worse than before and, as

you know, it can be pretty tough in a lot of settings. Anyway, he said that

some people decide not to do a second look, and just wait for symptoms of

c-tome recurrance. He said that was foolish, in his opinion. My question is

, how could I tell it if is recurring, when my original symptom was loss of

hearing and my hearing is now practically zero in that ear? Of course, I

didn't think of that question when I was in the doctor's office this

afternoon. Particularly since he primed me and all the postings here

reinforced the idea of second look. I don't think I have a choice about

the second look. He said if there were just a few pearls, he would remove

them and, if there was a lot of c-toma he would remove the back of the canal

wall, etc (I am not sure if that is CWup or down) and the mastoid. Of

course, there may not be anything to remove ( I keep trying to be

optimistic).

Does all this sound right to you? Should I be in a rush to do this? Is

there something I am not asking? Thanks for listening. I really wanted him

to be more optimistic about reconstruction and am just disappointed now.

My best to all of you.

le

[Guest guest]

From my son's experiences (6 surgeries), they do not feel much pain

post op. If your son is experiencing pain, it sounds like the 2nd

surgery is certainly needed. He will probably (hopefully) feel a lot

better after the surgery and prosthesis correction. I'd certainly make

the doctor aware of the current pain ASAP. He doesn't need to suffer.

Good Luck

[Guest guest]

Save your self some pain and money, go get a cwd. Find a Otologist, not a ENT if your not using one. If you have had more than one 2nd look then the c-toma is still in there hidden to where the 2nd looks or CWU's are useless...been there done that....

Tom Hansen

From: annadilynn <annadilynn@...>cholesteatoma Sent: Tuesday, March 31, 2009 10:01:15 PMSubject: second look surgery

i am on my third round for cholesteatomas. .. in 9 months they will go back in again, this one is a second look surgery, when they went in recently they had to take out the first two bones, just leaving the stapes....there was toma on the other two... i also had it on my facial nerve...luckily i did not have any paralization from it...i dont know that i want them to put in prostetic bones when they go back in...they have already had to take out a prostesis that was covered with cholesteatoma. ...what is your opinion on this...am i being silly?

[Guest guest]

Hi!

Chloe has had the prosthesis removed twice because it became involved with new ctoma. It didn't cause the new growth, but of course you don't want to leave it in there with traces of ctoma on it! I can tell you that she really enjoyed the hearing she had with the prosthesis, and she is definitely willing to try again when her ctoma is eradicated. Hers has been particularly aggressive, so we will likely have a CWD if it returns, but I think that doesn't limit the ability to place a prosthesis.

 

Right now, she has a hearing aid, and it is very helpful, but is not as convenient as a working prosthesis.

 

You should talk withyour Dr. about your concerns, and he will help you make the best decision for you. There are many people out there who now enjoy a " safe, dry ear " and good hearing, and they have had a variety of procedures: CWU, CWD, prosthesis (from a variety of different materials), hearing aids,... so get all the information, and then make the decision that you can live with!

 

Blessings,

 

On 3/31/09, annadilynn <annadilynn@...> wrote:

i am on my third round for cholesteatomas... in 9 months they will go back in again, this one is a second look surgery, when they went in recently they had to take out the first two bones, just leaving the stapes....there was toma on the other two... i also had it on my facial nerve...luckily i did not have any paralization from it...i dont know that i want them to put in prostetic bones when they go back in...they have already had to take out a prostesis that was covered with cholesteatoma....what is your opinion on this...am i being silly?

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

[Guest guest]

There are many successful cases of Canal Wall Up even on this listserv.

I believe this is a decision that should be left in the hands of medical

professionals. Even doctor's have come on the listserv and pointed out

that statistically there isn't a whole lot of difference. Just because

CWD was the best choice for Tom, doesn't necessarily mean that it's the

best choice for all cholesteatoma patients.

So far so good with my prosthesis - it's been in since January of 2001.

I've been thankful to have it in the situations where I wasn't able to

use my hearing aid. I can't imagine being without it.

Matt

Tom Hansen wrote:

> Save your self some pain and money, go get a cwd. Find a Otologist,

> not a ENT if your not using one. If you have had more than one 2nd

> look then the c-toma is still in there hidden to where the 2nd looks

> or CWU's are useless...been there done that....

>

> Tom Hansen

>

> ------------------------------------------------------------------------

> *From:* annadilynn <annadilynn@...>

> *To:* cholesteatoma

> *Sent:* Tuesday, March 31, 2009 10:01:15 PM

> *Subject:* second look surgery

>

> i am on my third round for cholesteatomas. .. in 9 months they will go

> back in again, this one is a second look surgery, when they went in

> recently they had to take out the first two bones, just leaving the

> stapes....there was toma on the other two... i also had it on my

> facial nerve...luckily i did not have any paralization from it...i

> dont know that i want them to put in prostetic bones when they go back

> in...they have already had to take out a prostesis that was covered

> with cholesteatoma. ...what is your opinion on this...am i being silly?

>

>

>

--

[Guest guest]

Your situation sounds very similar to my son’s. Our

current doctor is fairly confident that the c-toma returned because the

remaining one-third of his ear bones were left in there. He has since had

not only that last ear bone removed, but also his entire ear drum. He put

in a prosthetic ear drum in January, and we go back at the end of the summer for

the second look. If all is well, then at that time he will put in the

prosthetic ear bones.

Do your research. From what our doctor tells us, a CWD is a

pretty drastic measure if you are not yet up in years.

e

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of annadilynn

Sent: Tuesday, March 31, 2009 8:01 PM

cholesteatoma

Subject: second look surgery

i am on my third round for cholesteatomas... in

9 months they will go back in again, this one is a second look surgery, when

they went in recently they had to take out the first two bones, just leaving

the stapes....there was toma on the other two... i also had it on my facial

nerve...luckily i did not have any paralization from it...i dont know that i

want them to put in prostetic bones when they go back in...they have already

had to take out a prostesis that was covered with cholesteatoma....what is your

opinion on this...am i being silly?

[Guest guest]

Just to confirm, , what you’re saying: the CWD does not

preclude the implant of a prosthesis; I had a CWD back in 1999 and had a

prosthesis implanted – mine was made of cadaver bone, I believe.  It lasted a

good 3½  years or so before the worst infection I ever had (laid me up

literally for 4 days!) caused a series of perforations and I lost the head of

the incus (literally, again).  After that infection (one of many), I was

offered the BAHA and accepted gratefully.  It is with that that I now hear.

Kazzy

xx

From: cholesteatoma

[mailto:cholesteatoma ] On Behalf Of s

Sent: 01 April 2009 15:49

cholesteatoma

Subject: Re: second look surgery

Hi!

Chloe has had the prosthesis removed twice because it became

involved with new ctoma. It didn't cause the new growth, but of course you don't

want to leave it in there with traces of ctoma on it! I can tell you that she

really enjoyed the hearing she had with the prosthesis, and she is definitely

willing to try again when her ctoma is eradicated. Hers has been particularly

aggressive, so we will likely have a CWD if it returns, but I think that

doesn't limit the ability to place a prosthesis.

Right now, she has a hearing aid, and it is very helpful,

but is not as convenient as a working prosthesis.

You should talk withyour Dr. about your concerns, and he

will help you make the best decision for you. There are many people out there

who now enjoy a " safe, dry ear " and good hearing, and they have had a

variety of procedures: CWU, CWD, prosthesis (from a variety of different materials),

hearing aids,... so get all the information, and then make the decision that

you can live with!

Blessings,

On 3/31/09, annadilynn <annadilynn@...> wrote:

i am on my third round for cholesteatomas... in 9 months they will go back in

again, this one is a second look surgery, when they went in recently they had

to take out the first two bones, just leaving the stapes....there was toma on

the other two... i also had it on my facial nerve...luckily i did not have any

paralization from it...i dont know that i want them to put in prostetic bones

when they go back in...they have already had to take out a prostesis that was

covered with cholesteatoma....what is your opinion on this...am i being silly?

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

[Guest guest]

So what your saying then if you still have to have second looks and they keep having to clean up c-toma's because they have to go beyond a CWU but the Doc doesn't want to, then that's OK? Humm....Wonder why most Otologist's that know their business say 2 CWU's then a CWD if C-toma's keeps coming back. Humm must have worked for me then Matt. No, wait, it did. And then we keep hearing about those who have a dozen CWU's with all that pain. We see more of these patients than you think in here...Your right it must have just worked out for me and I was a odd ball.......Well that's fine, I am almost 30 years without this nasty stuff. I must have been lucky, or my Doc's where....thanks for pointing that out to me....

Tom Hansen

From:

[Guest guest]

My reconstruction was done with the tip cartilage outside the ear canal. I have not had any problems with it. I think the key there was it was from my body, at least that's the opinion of the Doc...

Tom Hansen

From: Kazzy <kazzy@...>cholesteatoma Sent: Wednesday, April 1, 2009 11:29:59 AMSubject: RE: second look surgery

Just to confirm, , what you’re saying: the CWD does not preclude the implant of a prosthesis; I had a CWD back in 1999 and had a prosthesis implanted – mine was made of cadaver bone, I believe. It lasted a good 3½ years or so before the worst infection I ever had (laid me up literally for 4 days!) caused a series of perforations and I lost the head of the incus (literally, again). After that infection (one of many), I was offered the BAHA and accepted gratefully. It is with that that I now hear.

Kazzy

xx

From: cholesteatoma [mailto:cholesteato magroups (DOT) com] On Behalf Of sSent: 01 April 2009 15:49cholesteatomaSubject: Re: second look surgery

Hi!

Chloe has had the prosthesis removed twice because it became involved with new ctoma. It didn't cause the new growth, but of course you don't want to leave it in there with traces of ctoma on it! I can tell you that she really enjoyed the hearing she had with the prosthesis, and she is definitely willing to try again when her ctoma is eradicated. Hers has been particularly aggressive, so we will likely have a CWD if it returns, but I think that doesn't limit the ability to place a prosthesis.

Right now, she has a hearing aid, and it is very helpful, but is not as convenient as a working prosthesis.

You should talk withyour Dr. about your concerns, and he will help you make the best decision for you. There are many people out there who now enjoy a "safe, dry ear" and good hearing, and they have had a variety of procedures: CWU, CWD, prosthesis (from a variety of different materials), hearing aids,... so get all the information, and then make the decision that you can live with!

Blessings,

On 3/31/09, annadilynn <annadilynn (DOT) com> wrote:

i am on my third round for cholesteatomas. .. in 9 months they will go back in again, this one is a second look surgery, when they went in recently they had to take out the first two bones, just leaving the stapes....there was toma on the other two... i also had it on my facial nerve...luckily i did not have any paralization from it...i dont know that i want them to put in prostetic bones when they go back in...they have already had to take out a prostesis that was covered with cholesteatoma. ...what is your opinion on this...am i being silly?------------ --------- --------- ------