Re: great ENT surgeouns for congenital cholesteatoma

[Guest guest]

We see Dr. Lambert at MUSC. He did my daughter at 3 and 10.

Melinda W. Lindberg

Ray Trucking

864-277-5234

great ENT surgeouns for congenital

cholesteatoma

Our 3 year old daughter was diagnosed with congenital cholesteatoma. We

are fortunate to have good health insurance and can go any where to have

the surgery done. Any ideas on what doctor you would go see if you could

go anywhere east of the mississippi? Also when you are interviewing

surgeons given the rare nature of the condition what's a common number

of these surgeries for an expert in the area to do in a month. Many

thanks!

[Guest guest]

My daughter is nine now and has had several surgeries on both ears for cholesteatoma, tubes, prosthetic hearing bone, reconstruction, eardrum patched, etc. The first was done by an ENT, but after the first operation we were referred to a specialist (Otologist/Neurotologist) Dr. Cunningham at Carolina Ear and Hearing Clinic. My daughter has been a patient of Dr. Cunningham's for about 4 years and we have been happy with his care. So far he has been able to avoid doing a canal wall down procedure and she has never experienced any nerve damage after surgery. He takes pictures during surgery -- super magnified screenshots from a computer monitor. The quality and detail is amazing. After surgery he comes out to the waiting room and shows us the pictures and explains exactly what he found, what was done, etc. The pictures make it much easier to follow and understand. My pediatrician often marvels at my daughter's eardrum, saying if she didn't know it and had not seen it before the surgery, she would not believe it had been patched. The incisions behind her ears have healed really well, too. I don't have anyone to compare him to, since we have been happy with her care we have not seen anyone else. I don't know how many of each kind of surgery he has performed (although I am sure we asked him that in our first visit), but I am sure he has done many because he is a specialist in that area of practice and his office is always busy.

Good luck on finding a doctor for your daughter.

Lorie

On Tue, 12 Jan 2010 18:43 +0000, " sethnu " <sethnu@...> wrote:

Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are fortunate to have good health insurance and can go any where to have the surgery done. Any ideas on what doctor you would go see if you could go anywhere east of the mississippi? Also when you are interviewing surgeons given the rare nature of the condition what's a common number of these surgeries for an expert in the area to do in a month. Many thanks!

[Guest guest]

My son's surgeon is Tunkel, MD at s Hopkins in Baltimore, land.

His initial surgery was at 4yo. Dr. Tunkel does many of these surgeries per

month/year and follows his patients as they get older. He is chief of Pediatric

Otolaryngology / Head and Neck Surgery.

Best of luck,

Nina

>

> Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are

fortunate to have good health insurance and can go any where to have the surgery

done. Any ideas on what doctor you would go see if you could go anywhere east

of the mississippi? Also when you are interviewing surgeons given the rare

nature of the condition what's a common number of these surgeries for an expert

in the area to do in a month. Many thanks!

>

[Guest guest]

I would look for a neurotologist that is extremely good with kids as

patients or a very experienced pediatric otologist with ready access to

a neurotologist if one needs to be called in. I think these doctors have

one or two surgery days each week If we were to assume one surgery day

per week, and then consider that this is just one type of problem that

they face, I'd say if they faced this more than once a month I'd be

impressed. When I had the surgery done the first time, it was an all day

affair - so I was the doctor's only surgery that day. Here is a web site

for you to use to look for a doctor. Although it's not absolutely

comprehensive, if I were an ENT of any sort I'd want to be in it. You

can look geographically and by specialty. See:

http://www.entnet.org/

Look for the search box in the middle of the page prefaced by " Find an

ENT By: "

There's a similar list in Canada that I found ... if you sift through

the archives of the listserv, you'll see it. If you happen to live up

there and can't locate it, let me know. I hope that this helps.

If you give us your state or city, the collective wisdom of the list can

make some specific suggestions.

Matt

sethnu wrote:

>

> Our 3 year old daughter was diagnosed with congenital cholesteatoma.

> We are fortunate to have good health insurance and can go any where to

> have the surgery done. Any ideas on what doctor you would go see if

> you could go anywhere east of the mississippi? Also when you are

> interviewing surgeons given the rare nature of the condition what's a

> common number of these surgeries for an expert in the area to do in a

> month. Many thanks!

>

>

--

[Guest guest]

If you like Tennessee, an amazing surgeon moved from Boston down to

Vanderbuilt recently, Dr. Roland Eavey. He was great when our daughter

came in during a holiday weekend with a life threatening complication

from her ctoma. Her regular surgeon was off for the long weekend and

he took great care of her, even contacting our regular doc to keep him

up to date.

On 1/12/10, Lorie Byrd <lorie@...> wrote:

> My daughter is nine now and has had several surgeries on both

> ears for cholesteatoma, tubes, prosthetic hearing bone,

> reconstruction, eardrum patched, etc. The first was done by an

> ENT, but after the first operation we were referred to a

> specialist (Otologist/Neurotologist) [1]Dr. Cunningham at

> [2]Carolina Ear and Hearing Clinic. My daughter has been a

> patient of Dr. Cunningham's for about 4 years and we have been

> happy with his care. So far he has been able to avoid doing a

> canal wall down procedure and she has never experienced any nerve

> damage after surgery. He takes pictures during surgery -- super

> magnified screenshots from a computer monitor. The quality and

> detail is amazing. After surgery he comes out to the waiting

> room and shows us the pictures and explains exactly what he

> found, what was done, etc. The pictures make it much easier to

> follow and understand. My pediatrician often marvels at my

> daughter's eardrum, saying if she didn't know it and had not seen

> it before the surgery, she would not believe it had been

> patched. The incisions behind her ears have healed really well,

> too. I don't have anyone to compare him to, since we have been

> happy with her care we have not seen anyone else. I don't know

> how many of each kind of surgery he has performed (although I am

> sure we asked him that in our first visit), but I am sure he has

> done many because he is a specialist in that area of practice and

> his office is always busy.

>

> Good luck on finding a doctor for your daughter.

>

> Lorie

>

> On Tue, 12 Jan 2010 18:43 +0000, " sethnu " <sethnu@...>

> wrote:

>

>

> Our 3 year old daughter was diagnosed with congenital

> cholesteatoma. We are fortunate to have good health insurance and

> can go any where to have the surgery done. Any ideas on what

> doctor you would go see if you could go anywhere east of the

> mississippi? Also when you are interviewing surgeons given the

> rare nature of the condition what's a common number of these

> surgeries for an expert in the area to do in a month. Many

> thanks!

>

>

> References

>

> 1. http://www.carolinaear.com/cunningham.shtml

> 2. http://www.carolinaear.com/index.shtml

> 3.

> mailto:?subject=great%20ENT%20surgeouns%20for%20congenital%20cholesteatoma

> 4.

>

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> 9.

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nts./green/

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[Guest guest]

Our son, Marc, a year and a half ago was diagnosed with massive bilateral

congenital cholesteatomas with significant destruction of the ossicles as well

as several other complications. He was three at the time. His surgeon is Dr.

ph Dohar out of Children's Hospital of Pittsburgh. Marc had two very lengthy

single stage procedures with phenomenal results. No recurrance has been detected

thus far, and he has had a very good hearing result as well. I would highly

recommend Dr. Dohar for his experience and expertise in this condition, and our

Children's Hospital of UPMC is very highly regarded throughout the country for

ear procedures. There was a neuro present in the OR as well. Dr. Dohar has

simply been terrific with Marc as well as being a great communicator with us

through this scary situation. He has answered endless questions from us, and

continues to do so! I wish you the very best in your search. Marc's situation

was a little different in that it was somewhat of an urgent matter when he was

first diagnosed, and although we had the resources to search out the best

possible docs, there simply wasn't enough time. However we could not have chosen

better than Dr. Dohar, and we got to him by chance.

>

> Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are

fortunate to have good health insurance and can go any where to have the surgery

done. Any ideas on what doctor you would go see if you could go anywhere east

of the mississippi? Also when you are interviewing surgeons given the rare

nature of the condition what's a common number of these surgeries for an expert

in the area to do in a month. Many thanks!

>

[Guest guest]

Hi, I highly recommend Dr. Hullar at Childrens Hosp in St. Louis, Missouri. My 2 year old daughter was diagnosed with a large c-toma last Aug. She also has a rare heart disease that's associated with not being able to handle anesthesia. So, we researched pediatric otologists all over. We flew to Phillie, since CHOP is ranked #1. Had appts with otologist ( Dr. Germiller) and cardiologist and I didn't feel comfortable with either of them as I did with Dr. Hullar. We decided Dr. Hullar was the Dr. I was literally putting my babies life in his hands. After a 10.5 hour surgery (from my delicate 2 year old) and the biggest C-toma they have ever seen, I could not ask for anything more!!! The c-toma had eaten through everything. She had facial paralysis, and it wrapped around her facial nerve a couple of times! You can imagine how many questions, phone calls, emotional break downs, etc. I had before the surgery, and he answered and handled everything like she was his own. He is a phenomenal Dr!!! I have posted other comments about him before if you would like to read them. I honestly can't say enough about this man!!! He came out of the O.R. After the 10.5 hour surgery with an enormous smile on his face and arms open wide for my husband and I to hug him! He was still as chipper as he was before the surgery. He excels at his job and loves doing it! My daughter looks forward to his appts! He still hugs us when we see him!I hope this may help you. I prayed and prayed about which Dr. and hospital I should take my angel to. Just make sure you feel VERY comfortable with whoever you choose. Its a very hard decision, but I believe you will know on the inside when you have spoken to the right Dr. for your little girl. Please, if you have any other question or concerns e-mail me back, or don't hesitate to call me 618-530-6427. I know how scary this is, but everything will be ok. And soon, you will be posting, helping other parents out!Sincerely, NimmonsSent from my Verizon Wireless BlackBerryFrom: "dr_lori" <lpisciottano@...>Date: Wed, 13 Jan 2010 14:39:46 -0000<cholesteatoma >Subject: Re: great ENT surgeouns for congenital cholesteatoma Our son, Marc, a year and a half ago was diagnosed with massive bilateral congenital cholesteatomas with significant destruction of the ossicles as well as several other complications. He was three at the time. His surgeon is Dr. ph Dohar out of Children's Hospital of Pittsburgh. Marc had two very lengthy single stage procedures with phenomenal results. No recurrance has been detected thus far, and he has had a very good hearing result as well. I would highly recommend Dr. Dohar for his experience and expertise in this condition, and our Children's Hospital of UPMC is very highly regarded throughout the country for ear procedures. There was a neuro present in the OR as well. Dr. Dohar has simply been terrific with Marc as well as being a great communicator with us through this scary situation. He has answered endless questions from us, and continues to do so! I wish you the very best in your search. Marc's situation was a little different in that it was somewhat of an urgent matter when he was first diagnosed, and although we had the resources to search out the best possible docs, there simply wasn't enough time. However we could not have chosen better than Dr. Dohar, and we got to him by chance.>> Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are fortunate to have good health insurance and can go any where to have the surgery done. Any ideas on what doctor you would go see if you could go anywhere east of the mississippi? Also when you are interviewing surgeons given the rare nature of the condition what's a common number of these surgeries for an expert in the area to do in a month. Many thanks!>

[Guest guest]

I don't know anything about your doctor...but I live in Gainesville, FL and I

had my surgery in November by Dr. Antonelli who is one of the top

surgeons for Cholesteatoma in the country. He is the head of the

Otology/Neurotology/Otolarngology department at University of Florida. He does

up 5-10 of these surgeries weekly since people travel from all over for him. You

aren't that far away. I was sooo lucky to live here.

He preformed my surgery at Shands Surgical Center and also used the latest laser

technology to help remove the cholesteatoma. It is a teaching hospital so it has

all the latest. There was a resident present but Dr. Antonelli did the surgery.

I also had my reconstruction done at the same time (he does that for most cases)

so it eliminates a 2nd surgery.

google him...

Joanne

>

> From: sethnu <sethnu@...>

> Subject: great ENT surgeouns for congenital cholesteatoma

> cholesteatoma

> Date: Tuesday, January 12, 2010, 12:43 PM

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> Our 3 year old daughter was diagnosed with congenital cholesteatoma. We

are fortunate to have good health insurance and can go any where to have the

surgery done. Any ideas on what doctor you would go see if you could go

anywhere east of the mississippi? Also when you are interviewing surgeons given

the rare nature of the condition what's a common number of these surgeries for

an expert in the area to do in a month. Many thanks!

>

[Guest guest]

Not sure if Dr. E. Mattox in GA works on children's ears but cholesteatomas is one of his interest and he also has attended top rated schools.

From: Janet Munro <janetmunro3@...>cholesteatoma Sent: Wed, January 13, 2010 10:25:37 AMSubject: great ENT surgeouns for congenital cholesteatoma

Hi,

My name is Janet and my 3 year old son Bradley was also just dx with congenital cholesteatoma. We live in the Atlanta area and have to stay in Georgia to have surgery. Our story: Bradley does not have a history of chronic ear infections, drainage or hearing loss. If anything, he used to get strep throat a lot and reactive airway disease (asthma). So when he gets an upper respiratory infection, he is usually on a nebulizer. He has been really healthy this past year. A month ago- he started to get a cold so I took him into see his Dr to make sure he wasn't wheezing and that's when his Dr saw something behind his right ear drum. I made an apt with the first ENT that I could see - not realizing that he might have to have surgery. So now I have another apt in Feb with Dr Thomsen of Pediatric Ear Nose and Throat of Atlanta. I haven't heard that he is an awesome Dr for cholesteatoma surgery, but just a good ENT in general.

I am very nervous about the whole situation- waiting to see how far advance the disease has spread. I personally had chronic ear infections, tubes and typmanaplastys as a child. So I was very disappointed to hear that he would have to go through this.

So- if anyone out there has heard any good/bad things about Pediatric Ear Nose and Throat of Atlanta, please let me know.

Janet

From: sethnu <sethnu (DOT) com>Subject: great ENT surgeouns for congenital cholesteatomacholesteatomaDate: Tuesday, January 12, 2010, 12:43 PM

Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are fortunate to have good health insurance and can go any where to have the surgery done. Any ideas on what doctor you would go see if you could go anywhere east of the mississippi? Also when you are interviewing surgeons given the rare nature of the condition what's a common number of these surgeries for an expert in the area to do in a month. Many thanks!

[Guest guest]

Hi Janet,

My son has also seen Dr. Mattox with Emory and he really is great and should be very convenient for you. I wish you and little Bradley the best.

Audrey

great ENT surgeouns for congenital cholesteatoma

cholesteatoma

Date: Tuesday, January 12, 2010, 12:43 PM

Our 3 year old daughter was diagnosed with congenital cholesteatoma. We are fortunate to have good health insurance and can go any where to have the surgery done. Any ideas on what doctor you would go see if you could go anywhere east of the mississippi? Also when you are interviewing surgeons given the rare nature of the condition what's a common number of these surgeries for an expert in the area to do in a month. Many thanks!