update

July 10, 2002

great news, paul! how about posting some photographs for us to see too!!!!!

Update

It has been quite a while since I have written. For those who do not know me

or my son, here's some info:

is 6. He has bilateral microtia/atresia. He started surgeries last

July with Dr Romo. We have one more to go at the end of this month. The

results are incredible. He has one BAHA now, and will soon have a 2nd BAHA.

His ears look so good, strangers are surprised when they learn he wasn't

born

with them. If anyone would like to know more about , feel free to

respond.

Sincerely,

One proud dad,

July 10, 2002

Surgery #1 was inserting the polythelene to form the right ear. Surgery #2

consisted of creating a lobe and trachis on right side, attaching titanium

anchor behind right ear, and inserting polythelene to form left ear. Surgery

#3 was creating lobe & trachis on left side and exteriorizing screw on right

side, and inserting titanium anchor behind left ear.

July 10, 2002

Hi ,

I see you decided to go with two BAHAs. I know that is Romo's advice. We actually met with Dr Romo this week and I was surprised at how negative he was about doing canalplasties after reconstruction. At this point, I am pleased with his expertise in the field of plastic surgery/facial reconstruction and the implant method; but I am not sure that he is the one that should decide about restoring hearing. I was just curious how you came to your decision. Thanks for your valuable imput.

Hillary

Update

It has been quite a while since I have written. For those who do not know me or my son, here's some info: is 6. He has bilateral microtia/atresia. He started surgeries last July with Dr Romo. We have one more to go at the end of this month. The results are incredible. He has one BAHA now, and will soon have a 2nd BAHA. His ears look so good, strangers are surprised when they learn he wasn't born with them. If anyone would like to know more about , feel free to respond. Sincerely, One proud dad,

July 10, 2002

Hillary,

I know it is surprising to find out that Dr. Romo isn't very " hip " on

the idea of doing canalplasties. I can explain to you why.

The reason is because he simply cannot recommend any other doctor that

is qualified to do this surgery OTHER than Dr. Jahrsdoerfer!!! He knows

that Dr. J. is the best in the country (if not the world) but he also

knows that he won't be around forever. When he has parents of

little children come in for consultations and they are quite a few years

away from surgery, there is a very good chance that Dr. J. will have

retired by the time they are ready for a canalplasty. Add that to the

fact that I have recently found out and informed him that Dr. J. will

NOT operate on a child with a polyethylene implant...well, he feels he

has little choice but to push for hearing to be improved by a BAHA.

I myself, have been on a crusade to find a doctor that has opened the

canal of a child who has had an implant. None of Dr. Romo's patients

have had a canal opened yet (that he is aware of, quite a few do not

keep in touch after surgery!). Yes, there are at least a dozen that are

willing but are they able is my question?. I do know of a doctor in the

midwest that did 6 or 7 but 3 of the implants failed after his surgery.

Dr. Romo suspects the doctor that did the original implant surgery

wasn't as knowledgeable as he should have been. This same doctor is

also not authorized to be doing polyethylene implant by Medpor. So who

really knows why these ears failed?. Evan has one canal opened (by Dr.

J.) but that was done BEFORE the outer reconstruction (which we just

switched from this month to Sept.). If we didn't do everything

backwards and have the canal done before the outer ear, he never would

have had a canal opened at all! For once, I am thankful that I made a

mistake! LOL

Anyway, I hope this info helped you to understand his position.

Lynne

P.S. Steve, about and his BAHA's (in case doesn't see your

message)...He had one ear (both stages) reconstructed first and when

they started the second ear, they also did his first BAHA on the first

ear. (was that too confusing? LOL) I suspect that 's last

surgery may be to do a stage two reconstruction and his second BAHA at

the same time. It still is reconstruction BEFORE BAHA!!

July 10, 2002

None of Dr. Romo's patients

have had a canal opened yet (that he is aware of, quite a few do not

keep in touch after surgery!). Yes, there are at least a dozen that are

willing but are they able is my question?. I do know of a doctor in the

midwest that did 6 or 7 but 3 of the implants failed after his surgery.

Dr. Romo suspects the doctor that did the original implant surgery

wasn't as knowledgeable as he should have been.

This same doctor is

also not authorized to be doing polyethylene implant by Medpor. So who

really knows why these ears failed?. Evan has one canal opened (by Dr.

J.) but that was done BEFORE the outer reconstruction (which we just

switched from this month to Sept.). If we didn't do everything

backwards and have the canal done before the outer ear, he never would

have had a canal opened at all! For once, I am thankful that I made a

mistake! LOL

Anyway, I hope this info helped you to understand his position.

Lynne

anna lynne

you are thankful that you made a "mistake" because evan thankfully has normal hearing, even though he has a dr romo implant. what you are suggesting is that evan might be the first and last kid to win hearing with this ear.

i wonder that if parents knew (or adult patients as well, for that matter) that the hype about horrid ugly scars as a result of the rib graft is only...hype, and that much of it seems to be generated by professional jealousy over differing ear replacement techniques, people wouldn't opt to have BOTH, nice ears AND hearing.

if romo's surgery precludes canalplasties (dr j is alive and well and practicing medicine and coming to nyc to discuss his surgeries, and yes (of course) there are people training to do his work) and patients learn (too late) that they can NOT have canalplasties...i think that would be the "mistake" .

an unrectifiable one, perhaps a lifelong one.

a whopper.

and thank god you spared evan!

jack

July 12, 2002

> P.S. Steve, about and his BAHA's (in case doesn't see your

> message)...He had one ear (both stages) reconstructed first and when

> they started the second ear, they also did his first BAHA on the first

> ear. (was that too confusing? LOL) I suspect that 's last

> surgery may be to do a stage two reconstruction and his second BAHA at

> the same time. It still is reconstruction BEFORE BAHA!!

Well I guess we are going against the flow. 's ears are

underdeveloped, but people don't really notice because they are there. You

only really notice if you look a little closer. In any case, we have

decided not to opt for the reconstruction surgery at this time, but we are

scheduled for a BAHA in August.

At this point, we don't see a need for the reconstruction, but wanted to

keep the options open if we could. Sounds like we can't really keep them

open. I suspect the possibility of reconstruction after BAHA, depends on

the location of the BAHA. If it is far enough away, it is still a

possibility, but that may not be the best placement for a BAHA. Anyway, we

are confident in our decision for a BAHA, and also confident that

reconstruction isn't for us at this time. It is unfortunate that the BAHA

may limit the reconstruction later.

I actually suspect that the outer ear reconstruction may not be an issue for

us. 's ears are small, but present grade II) so people don't usually

notice, unless they look right at his ears. is quite comfortable with

his ears, and doesn't really spend any time thinking about them.

Steve

July 13, 2002

Jack,

I wouldn't say that Evan has " normal hearing " as he hears only out of

one ear. It will remain this way until: 1. Evan makes his own decision

that he wants a BAHA. 2. Dr. J. finds out that a canalplasty CAN be

done on a kid with a polyethylene implant (I'm not holding out much hope

for this! LOL). 3. I find and thoroughly check out another surgeon

that has done this operation. 4. Time passes and there is a new way to

give Evan hearing in that ear. As for Evan being the first and last kid

to have a canalplasty with a " Dr. Romo ear " ...the ear Dr. J. opened was

not a Dr. Romo ear, it was his other ear that was reconstructed. The

ear that Dr. J opened was one that had previously been opened by a

doctor in Philadelphia and had become horribly infected (and it would

have been swell if he had told us that outer comes BEFORE inner!!!!).

We had no choice but to delay reconstruction on this ear and have Dr. J.

remove the infection and redo the entire canal. We just now scheduled

Evan for reconstruction on this ear. Also, Dr. J. WAS willing to

operate on Evan's Dr. Romo ear (I kinda like that term ya know! LOL),

even calling him one of the best candidates he had ever seen. It wasn't

until we went to schedule with him and he checked with the doctor in

Iowa that he decided at this stage in his life and career, he just

didn't want to take the chance, he just wasn't sure about it since he

had never done it before. I respect him for that, even if I am more

disappointed than words could ever express.

I wouldn't say that Dr. Romo's way of reconstruction precludes

canalplasty either. HOWEVER, if you are the parent of a bilaterally

affected child AND want to have the ear canals opened, then no, this is

not the way to go at this time. Like I said, until there is another

doctor who is willing and more than able to do this kind of surgery OR

there eventually is another way, you are out of luck! Then again, since

most people are affected unilaterally, it is usually recommended that no

canalplasty be done in the first place. These are the people that would

benefit from a Dr. Romo ear. BTW...almost all of Dr. Romo's patients

ARE unilateral cases which is why he hasn't been all that involved in

the canalplasty issue. Seems I have been the one that brought all this

to his attention, the " Dr. J. is the best in the world " thing and the

" Ut oh, Dr. J. won't operate on implant kids " thing. You should have

seen the two of us scrambling to call Porex and inform them of this new

development! It will definitely have an effect, I can tell you that.

But, you're right, it IS possible to have great hearing and great

looking ears. How one chooses to go about that comes down to that " very

personal decision " we have all spoken about so many times. I will say

this, if you want to have great looking ears AND have them opened up, go

see Dr. Brent and Dr. J. If you want to have great looking ears and are

not interested in a canalplasty, go see Dr. Romo. I'm just glad I was

able to put this information out there so that anyone seeking a Dr. Romo

ear now knows not to count on Dr. J. to open them up for you! Let's

hope there are no unrectifiable mistakes out there!

And she rambles on again! LOL

Have a great day all!

Lynne

July 13, 2002