RE: Re: Dr. in Oregon for 6 yr old with Cholesteatoma

[Guest guest]

Hi Jenn,

We have narrowed our search down to Dr.

Darius Kohan and Dr. Selesnick. Both have been

highly recommended and seem to be at the top of the cholosteatoma

game but in different ways. Selesnick is at Cornell

and is seems academic in terms of researching new ways to improve

reconstruction while Kohan is a Park Ave solo doc who has a very nice demeaner as well but more business. Selesnick

is our preference but does not take insurance. Kohan will take our insurance. We

just have no idea what it may cost. Zack has a very aggressive and large cholesteatoma that will most likely require several

operations/reconstructions and monitoring for the rest of his life. We will

talk to Dr. Selesnicks office to see if it is

possible to swing it and will go with him if we can. Otherwise we will go with

Dr. Kohan.

Do you know anything about either of these

guys?

Thanks, Annie

Re: Dr.

in Oregon for 6 yr old with Cholesteatoma

Hi Annie- Good luck! Who are you seeing in

mahatten? It turned out

that the hearing I had, was through the

cholesteatoma. Meaning, I was

actually hearing through the thing, but once it

was out, the docto

thought the hearing would be compromised. So yest.

when I went, he

did that little hearing thingy and was AMAZED at

how come I could

hear so fast. Don't get nervous, because nothing

with this disease is

set in any type of stone. Risks, etc. The outcome when

removed

is " Soo " different from the text books,

as well as other patients.

For instance too, I went to see a dozen surgeaons

in NJ, even though

the diagnosing MD suggested I go OUT of state and

to NY to a

specialty hospital who does this type of surgery

thousands of times a

month, and thank god I listened, but back to my

point.

The surgeons all here, even one good one, were

like, oh, you'll need

two surgeries as per my cat scans, you'll need

reconstruction, yhada,

yhada, yhada, and low and behold, with it turning

out to be worse

than thought, the surgeon was able to take 6 hours

in operating room

to eradicate all, put back nicely, and now there's

no need for second

surgery OR reconstruction. They really, and

doctor's shouldn't say

what type of surgery will be performed, because

NONE of them know,

until.........they open it up.

So it's " Wonderful " your taking all w/

grain of salt, because again,

all will be determined once surgery begins. Keep

us posted and good

luck ;-) Let us know who you opted to see. I sent

you an email

regarding the infirmary in manhatten, but not sure

if you recieved.

The hospital Bettie here went to, as well as The

infirmary were both

voted number one for Otology/Nerotology, (but

let's not forget

michigan ;-) as being " TOP " for ear

diseases. Keep us posted.

Jenn

This

Cholesteatoma support group offers and provides information of a general nature

about cholesteatoma as well as members personal experiences with this disease.

The information provided is not intended to replace surgical or medical advice

or recommendations. Any information in the messages, postings or articles on

the web site should not be considered a substitute for consultation with a

medical professional to address individual medical needs. Individuals'

particular facts and circumstances will determine the treatment which is most

appropriate.

[Guest guest]

Hi Shelli,

Yes, my husband sees Dr. McMenomey however we haven't seen him in a long time because everything has been going well since the last surgery. We see an ENT here in Klamath and go to Dr. McMenomey for surgery. We even drove home the same day he had surgery last time. It's an almost 6 hour trip (my brother always drives to keep me company and to do the driving so I can do the worrying).

He's a really great doctor. If you have anymore questions, please feel free to contact me.

Michele, Group ModeratorROBERT SHELLI PETERS <scott_sh> wrote:

Michele:

Thank you for the information regarding the Dr. at OHSU. I will look him up. Do you or one of your family members see Dr. McMenomey?

I am finding this group to be a wealth of knowledge.

Take good care,

Shelli

Re: Dr. in Oregon for 6 yr old with Cholesteatoma

Hi Shelli,I'm Michele, group moderator for cholesteatoma, and I'm from Klamath Falls, Oregon. We travel to Portland to see Dr. O. McMenomey at Oregon Health Sciences University. Here is a link for his bio: http://www.ohsu.edu/ent/ear/mcmenomey.html. I have nothing but praise for Dr. McMenomey. If he is not able to take on your daughters case, he would be able to refer you to a qualified surgeon.I am sure some of the parents will chime in about what to expect and how the children do regarding the surgery, but from all accounts I have read here, the children recover very quickly, usually ready to resume normal activities in a day or two. I think the hardest part is getting your child to rest!Check out the links section of the website for some very good

article regarding cholesteatoma. I think there is one specifically for pediatric c-toma. Good luck to you. Please keep us posted. You will find that this group is very caring and helpful.Michele, Group Moderator> > > Hello! I am really impressed with all of the information posted for > this group regarding Cholesteatoma. My 6 yr old daughter was recently > diagnosed with Cholesteatoma. We are waiting for the results of the CT > scan and audiogram. She did not have her first ear infection until the > age of three. She does not experience any pain or pressure, just an > odor from her ear. It was first diagnosed as "swimmer's ear" by a > Pediatrician and was treated with Antibiotics and ear drops. Just this >

month we were finally referred to an ENT. We are now looking for a > surgeon in Oregon to perform the removal of the Cholesteatoma. Can > anyone give us any advice on finding a surgeon? Advice on what to > expect from surgery? I am new to this and am trying to find all the > information I can. Thank you!