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

[Guest guest]

Dr. mcmenamy(sp?) in Portland is a good Dr. for that. He is at the Oregon Health and Science University. GOd Bless you and have a nice day.__________________________________________________

[Guest guest]

Hi Shelli,

I can’t help since my son was just

diagnosed too. He also didn’t have ear infections until last summer which

was also first diagnosed as swimmers ear. I did hear, however, that what you

are looking for is a ototologist/neurotologist

(please forgive the spelling) not just a ped ENT.

Good luck, Annie

Dr. in

Oregon for 6 yr old with Cholesteatoma

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!

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]

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!

[Guest guest]

Hi,

They say that it is congenital but he didn’t

get ear infections until last summer. He only complains when he has an

infection but doesn’t seem to have a lot of pain even then. The whole

congenital part opens up a can of worms because he is adopted and has two full

siblings that I feel should know but don’t want the parents to know who

we are (ugh). I am taking him to a surgeon in Manhattan today as soon as I get my other kids off to school, I’ll let

you know what he says. Zack does not have an odor coming from his ear or

drainage but the first pediatric ENT said that odor and leakage may be signs of

hearing bones being eaten away. But I take everything with a grain of salt

because they seem to think that Zack’s hearing bones have been

compromised yet he has no odor or drainage. The doc also wants to take out his adenoids,

put tubes in both ears and maybe take his tonsils out. Have you heard anything

like that?

Good luck, Annie

Dr. in

Oregon for 6 yr old with Cholesteatoma

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!

[Guest guest]

Annie:

I am anxious to hear what the surgeon in Manhattan said. I pray some of your questions were answered and you now have a better grasp on where to go from here.

The Dr.'s suspect her condition may be congenital but are not sure. The Dr. told us she may have been born or acquired this when she could not communicate so her body adapted to the pressure and pain making it normal for her. She only has the cholesteatoma in the left ear. She did not have ear infections as an infant and only was sick a few times with cold type symptoms. Her first "swimmer's ear infection" was diagnosed and treated with antibiotics in 2003. At that time she did not complain of pain, only an odor-no drainage. However, it did take several months and two different types of antibiotics to clear up the infection. The Pediatrician tried to irrigate her ear at that time because she had low visibility of the ear drum. I was told my daughter produced an excess amount of ear wax and that blocked water in her ear causing bacteria to grow and infection. A hearing test was performed after the infection was cleared with antibiotics. She had no hearing problems at all. Mikaela is in kindergarten and her teachers have not noticed any type of hearing impairment. I have not noticed anything either. My husband and I joke it is because we already have an 11 year old that suffers from "selective hearing" that we do not notice a problem with Mikaela. The only other ear incident was the end of March 2005. Mikaela had a cold and complained of pain in her right ear and had an odor coming out of her left ear again. I took her to a Pediatrician who could not see the ear drum and irrigation did not help. She referred me on to an ENT to have her ear vacuumed. The ENT vacuumed out both ears. The left took quite some time and he still could not remove all of the debris. He prescribed antibiotics and ear drops and told me to come back in two weeks. When we returned in two weeks he again had to vacuum out her left ear. He could see her ear drum had recessed and could see the cholesteatoma. He sent us to have a CT scan and scheduled an audiogram. I was told to flush Mikaela's left ear twice a day with vinegar until the appt on the 19th. We do not know the extent of the damage at this juncture. The ENT has not mentioned anything about adenoids, tonsils, or tubes in her ears.

I am encouraged that our little ones are not feeling pain. I hope your appt with the surgeon went well. Have a nice evening!

Shelli

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

Hi Shelli,

I can’t help since my son was just diagnosed too. He also didn’t have ear infections until last summer which was also first diagnosed as swimmers ear. I did hear, however, that what you are looking for is a ototologist/neurotologist (please forgive the spelling) not just a ped ENT.

Good luck, Annie

-----Original Message-----From: Shelli [mailto:scott_sh] Sent: Saturday, April 09, 2005 12:31 AMcholesteatoma Subject: Dr. in Oregon for 6 yr old with Cholesteatoma

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!

[Guest guest]

Hi Annie-

I'm not sure if I do, but I know about the whole insurance bit, but I

looked at mine in such a way as if it were a sign of some sort,

because had I gone to the one that didn't take my insurance and opted

to pay, I don't think I would have came out of it with such a great

outcome as i have now.

So after much a long research myself, and believe you me, I emailed

every doctor ;-) and asked lots of questions, when it came down to

it, and when all my research was done, the last thing I did was went

and bought that " Top Doc " book, there were only two hospitals for

Cholesteatoma's listed in the NY, metro area, and they were, Mount

Sinah (Selsnick) and The New York Eye & Ear Infirmary.

www.nyee.edu

When I personally did my research for myself, I didn't look so much

for a doctor who specialized in strictly " Cholesteatoma " , but

searched out the " Best " Otologist, Neurotologist (ear disease

specialist, which is what a cholesteatoma is) and - " Skull Based

Sergeons " -! So I did my reasearch on a Otologist/Neurotologist Skull

Base Surgeon.

Those 3 main characteristics, (Not C-Toma) was what I focused on

primarily. I read about Selsnick, and also about Bettie's doctor on

here, (He sounded great as well)can't remeber his name.

Just go with who you feel more comfortable with. I'm sure you did all

your research. Just go to google.com as well, and type in the surgeons

name. that right there reveals a lot as well. But I opted for Dr.

Linstrom at NYEE.

http://www.nyee.edu/bios/c_linstr.htm

I hope this helps and good luck

-Jenn

[Guest guest]

Hi Jenie,

We did our research and met with three

surgeons. We have decided to go with Dr. Selesnick

and now it’s time to wait. He is going to perform the surgery on May 12th

(eek). Both docs were great but Selesnick just gave

me a better feel and he reminds me of Adam Arkin on

that hospital show many years back.

Keep in touch, Annie

Re: Dr.

in Oregon for 6 yr old with Cholesteatoma

Hi Annie-

I'm not sure if I do, but I know about the whole

insurance bit, but I

looked at mine in such a way as if it were a sign

of some sort,

because had I gone to the one that didn't take my

insurance and opted

to pay, I don't think I would have came out of it

with such a great

outcome as i have now.

So after much a long research myself, and believe

you me, I emailed

every doctor ;-) and asked lots of questions, when

it came down to

it, and when all my research was done, the last

thing I did was went

and bought that " Top Doc " book, there

were only two hospitals for

Cholesteatoma's listed in the NY, metro

area, and they were, Mount

Sinah (Selsnick) and The New York Eye & Ear

Infirmary.

www.nyee.edu

When I personally did my research for myself, I

didn't look so much

for a doctor who specialized in strictly

" Cholesteatoma " , but

searched out the " Best " Otologist,

Neurotologist (ear disease

specialist, which is what a cholesteatoma is) and

- " Skull Based

Sergeons " -! So I did my reasearch on a

Otologist/Neurotologist Skull

Base Surgeon.

Those 3 main characteristics, (Not C-Toma) was

what I focused on

primarily. I read about Selsnick, and also about

Bettie's doctor on

here, (He sounded great as well)can't remeber his

name.

Just go with who you feel more comfortable with.

I'm sure you did all

your research. Just go to google.com as well, and

type in the surgeons

name. that right there reveals a lot as well. But

I opted for Dr.

Linstrom at NYEE.

http://www.nyee.edu/bios/c_linstr.htm

I hope this helps and good luck

-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,

I took my little guy to see two otologist/neurotologist’s in Manhattan by the names of Dr’s Kohan and Selesnick.

Both docs agree that Zack’s cholesteatoma is

large, aggressive and has already most likely damaged all three hearing bones

also exposing the facial nerve. They believe that it is congenital due to the

size of it. It is extensive and is just everywhere including the mastoid area but

did not travel any further than the there. Both docs agree that a CWD procedure

may be best due to the size and location but would make the final assessment once

they go in. Neither doc holds much hope in retaining any of the hearing bones

but hold out hope for reconstruction. Zack is only three so all of his hearing

tests are questionable. The two docs differ in there procedure, however. Kohan

wants another Ped ENT to remove Zacks

adenoids and place a tube in the good ear because of the fluid retention. Upon

healing for 3 to 4 weeks Dr. Kohan would then go in and remove the cholesteatoma. Selesnick believes

in tackling the cholosteatoma first then in a

subsequent procedure, perhaps 6 months later remove the adnoids

while taking a look to check for more growth.

Both docs seemed very knowledgeable so it

was a very hard decision but we decided to go with Dr. Selesnick.

Zack is now scheduled for surgery on May 12th. I still wonder how

the pediatricians could have missed this because it was sooooooo

evident by looking in his hear to the first ENT I took Zack to. I hear that the

surgery takes about 3 to 4 hours and is done on an out patient basis. Recovery they

say is not so bad but I’d like to hear what others have to say about

that.

How is Mikaela

doing? Have you had a ct scan yet? Hope that all is going well.

Annie

Dr. in

Oregon for 6 yr old with Cholesteatoma

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!

[Guest guest]

Annie- Good for you, glad it's coming up soon. The sooner the better!

As for a CWD, the surgeon seems right on in doing so, especially when

it's traveling, and as per the article I posted, chances are much

greater than all of the c-toma will get removed. I was told surgery was

2-3, turned out to be 6 and ahlf, so if you little guy has an extensive

c-toma, like I did, could be much longer, so don't get " Nervous " if the

wait goes beyond the time told. It made my fiance NUTS, but I told

him, " Hey, better to take longer and ensure a good outcome, than to

rush me along " . Keep that in mind as your waiting for him to come out

I also stayed the night, but was told at first I would go home, but

again, they didn't realize how big it was. I remember sitting in the

hospital attire, next to 2 little baby boys in same uniform, all of us

waiting for our surgeons to come out and take us in, and we were

compairing our X's (marks on ear for surgery), they were such little

trooper's! He will be be fine and so will you! Good luck!