RE: 4 year old son just dx

[Guest guest]

Faith

Please let us know what part of the country you are in and someone can surely help to refer you to an Otologist (ear doc only). I had a similar ordeal with my son, now 7, before finding this group and a great Otologist. My son had surgery a week ago today. Please feel free to ask us any questions you may have. Someone in this group should be able to give some good advice or point you in the right direction.

Sincerely

Carla in Kentucky

4 year old son just dx

Hello,I am kind of in shock after finding out my otherwise healthy 4 year old son will undergo a tympanoplasty with mastoidectomy in a few weeks. It all started with a bad ear infection in March that was resistant to antibiotics, his eardrum perforated and drained pus for a month. He was horribly sick, high fever, crabby, clingy and lethargic. I was told by my family dr that this amt of drainage was normal for a perforated eardrum, eventually my son got better and the family doctor referred me to an ENT to look at the hole left in my sons' eardrum. I went to this ENT for an entire summer, who told me my son's hole was getting smaller but was not closing entirely. He said he felt that the eardrum would need patching and that he was not comfortable treating 'such a small ear' and referred me to another ENT Dr. out of town. On our first visit to this new ENT last week, he put a camera in my son's ear. We could see that there was practically NO eardrum left, and that the malleus was damaged. This new ENT said that this type of severe damage was most likely from an infection or Cholesteatoma in the mastoid, not a simple ear infection. I am confused and angry in who to trust - the ENTs seem to contradict each other, yet each recommends the other one to treat my son! And why had we never heard about the cholesteatoma or mastoid infection possiblity from the first ENT? When I have tried to raise these questions (without offending the current ENT), my questions are not given a direct answer. Both ENTs have good credentials and recommendations, and I don't want to poison the relationship with either Doctor because I want the best care for my son. I am now looking to get a 3rd opinion before surgery in 2 weeks. Any suggestions? Been there?ThanksFaith

[Guest guest]

Hi Faith,

My son Dan, now 11, had a similar experience. C-tomas are not often identified by pediatricians and even some ENT's. I can't stress to you enough to find an Otologist. Your son will probably need a few surgeries. At least one to eradicate the c-toma and then another to reconstruct his hearing. He needs a specialist and in my opinion, an ENT is not enough. Please let us know where you are from and someone in here will know an otologist for you. Unfortunately, your experience is the norm. Let us help,

Dorothy

4 year old son just dx

Hello,I am kind of in shock after finding out my otherwise healthy 4 year old son will undergo a tympanoplasty with mastoidectomy in a few weeks. It all started with a bad ear infection in March that was resistant to antibiotics, his eardrum perforated and drained pus for a month. He was horribly sick, high fever, crabby, clingy and lethargic. I was told by my family dr that this amt of drainage was normal for a perforated eardrum, eventually my son got better and the family doctor referred me to an ENT to look at the hole left in my sons' eardrum. I went to this ENT for an entire summer, who told me my son's hole was getting smaller but was not closing entirely. He said he felt that the eardrum would need patching and that he was not comfortable treating 'such a small ear' and referred me to another ENT Dr. out of town. On our first visit to this new ENT last week, he put a camera in my son's ear. We could see that there was practically NO eardrum left, and that the malleus was damaged. This new ENT said that this type of severe damage was most likely from an infection or Cholesteatoma in the mastoid, not a simple ear infection. I am confused and angry in who to trust - the ENTs seem to contradict each other, yet each recommends the other one to treat my son! And why had we never heard about the cholesteatoma or mastoid infection possiblity from the first ENT? When I have tried to raise these questions (without offending the current ENT), my questions are not given a direct answer. Both ENTs have good credentials and recommendations, and I don't want to poison the relationship with either Doctor because I want the best care for my son. I am now looking to get a 3rd opinion before surgery in 2 weeks. Any suggestions? Been there?ThanksFaith

[Guest guest]

Faith,

I'm sorry to say that many of us here had similar problems in getting a diagnosis for our kids. Our daughter saw an ENT for a year who never caught it. Now you're at the point of finding the best person to take care of it, though, so ask here for recommendations of otologists in your area, and ask your pediatrician to help refer you also (who would he have do this surgery on his child?). If surgery is already scheduled, I'd ask how many surgeries like this your doctor has performed on children and the expected outcomes. Someone here put together a good list of questions for the surgeon, (is it on the Cholesteatoma website?). This part is the hardest for you, evaluating surgeons and waiting, but doing some homework on the surgeon's qualifications, and feeling that you can trust them is worth it. Personally, I'd stay away from having the first guy operate if he was uncomfortable working on such a small ear. Best wishes,

4 year old son just dx

Hello,I am kind of in shock after finding out my otherwise healthy 4 year old son will undergo a tympanoplasty with mastoidectomy in a few weeks. It all started with a bad ear infection in March that was resistant to antibiotics, his eardrum perforated and drained pus for a month. He was horribly sick, high fever, crabby, clingy and lethargic. I was told by my family dr that this amt of drainage was normal for a perforated eardrum, eventually my son got better and the family doctor referred me to an ENT to look at the hole left in my sons' eardrum. I went to this ENT for an entire summer, who told me my son's hole was getting smaller but was not closing entirely. He said he felt that the eardrum would need patching and that he was not comfortable treating 'such a small ear' and referred me to another ENT Dr. out of town. On our first visit to this new ENT last week, he put a camera in my son's ear. We could see that there was practically NO eardrum left, and that the malleus was damaged. This new ENT said that this type of severe damage was most likely from an infection or Cholesteatoma in the mastoid, not a simple ear infection. I am confused and angry in who to trust - the ENTs seem to contradict each other, yet each recommends the other one to treat my son! And why had we never heard about the cholesteatoma or mastoid infection possiblity from the first ENT? When I have tried to raise these questions (without offending the current ENT), my questions are not given a direct answer. Both ENTs have good credentials and recommendations, and I don't want to poison the relationship with either Doctor because I want the best care for my son. I am now looking to get a 3rd opinion before surgery in 2 weeks. Any suggestions? Been there?ThanksFaith

[Guest guest]

Has anyone done a cat scan of your son's ear?? Your story sounds so similiar to our son's. When they finally did a cat scan of 's ear, the diagnosis was clear.

You are in our prayers,

-----Original Message-----From: for_ebay_email [mailto:for_ebay_email@...]Sent: Tuesday, July 20, 2004 5:17 PMcholesteatoma Subject: 4 year old son just dxHello,I am kind of in shock after finding out my otherwise healthy 4 year old son will undergo a tympanoplasty with mastoidectomy in a few weeks. It all started with a bad ear infection in March that was resistant to antibiotics, his eardrum perforated and drained pus for a month. He was horribly sick, high fever, crabby, clingy and lethargic. I was told by my family dr that this amt of drainage was normal for a perforated eardrum, eventually my son got better and the family doctor referred me to an ENT to look at the hole left in my sons' eardrum. I went to this ENT for an entire summer, who told me my son's hole was getting smaller but was not closing entirely. He said he felt that the eardrum would need patching and that he was not comfortable treating 'such a small ear' and referred me to another ENT Dr. out of town. On our first visit to this new ENT last week, he put a camera in my son's ear. We could see that there was practically NO eardrum left, and that the malleus was damaged. This new ENT said that this type of severe damage was most likely from an infection or Cholesteatoma in the mastoid, not a simple ear infection. I am confused and angry in who to trust - the ENTs seem to contradict each other, yet each recommends the other one to treat my son! And why had we never heard about the cholesteatoma or mastoid infection possiblity from the first ENT? When I have tried to raise these questions (without offending the current ENT), my questions are not given a direct answer. Both ENTs have good credentials and recommendations, and I don't want to poison the relationship with either Doctor because I want the best care for my son. I am now looking to get a 3rd opinion before surgery in 2 weeks. Any suggestions? Been there?ThanksFaith

[Guest guest]

Faith,

It is shocking at first. My 5 year old son just had a c-toma surgery a month ago. They were able to do the reconstruction

right away. This is not the case

for everyone, but if you find an experienced otologist…you

will likely have a better case scenario.

If it’s any comfort to you, he came

through with flying colors and it was all we could do to keep him from running

with his brother and sister half a day later. Think about it this way, the most perilous

part of having a cholesteatoma is having it and not

knowing yet. You are past that part

and can now do everything that you can to help your son get great care for this

problem. Try to let that empower

you to overcome the anger and shock.

You’ve found a great place in this

board…it’s gotten me through the last few months with all of my

questions and I can finally rest easy knowing that I’ve done everything

that I can do and that, in all likelihood…it’s going to be alright.

Smiles, Tara

4 year

old son just dx

Hello,

I am kind of in shock after finding out my

otherwise healthy 4 year

old son will undergo a tympanoplasty with

mastoidectomy in a few

weeks. It all started with a bad ear

infection in March that was

resistant to antibiotics, his eardrum perforated

and drained pus for

a month. He was horribly sick, high fever,

crabby, clingy and

lethargic. I was told by my family dr that

this amt of drainage was

normal for a perforated eardrum, eventually my son

got better and the

family doctor referred me to an ENT to look at the

hole left in my

sons' eardrum. I went to this ENT for an

entire summer, who told me

my son's hole was getting smaller but was not

closing entirely. He

said he felt that the eardrum would need patching

and that he was not

comfortable treating 'such a small ear' and

referred me to another

ENT Dr. out of town. On our first visit to

this new ENT last week,

he put a camera in my son's ear. We could

see that there was

practically NO eardrum left, and that the malleus

was damaged. This

new ENT said that this type of severe damage was

most likely from an

infection or Cholesteatoma in the mastoid, not a

simple ear

infection. I am confused and angry in who to

trust - the ENTs seem

to contradict each other, yet each recommends the

other one to treat

my son! And why had we never heard about the

cholesteatoma or

mastoid infection possiblity from the first

ENT? When I have tried

to raise these questions (without offending the

current ENT), my

questions are not given a direct answer.

Both ENTs have good

credentials and recommendations, and I don't want

to poison the

relationship with either Doctor because I want the

best care for my

son. I am now looking to get a 3rd opinion

before surgery in 2

weeks.

Any suggestions? Been there?

Thanks

Faith

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 Faith. My name is and I am currently 24 years old. I was first diagnosed with C-toma at age 13. I had battled ear infection after ear infection since about the age of 2. Each time my mother would take me to the doctor (several by the time we found my current ENT) and each said the same thing: "We could put a tube in her ear (only my right ear was affected) but we think she'll grow out of it. Just give it time." Needless to say I never did. Throughout the next 10 years I had constant drainage from my right ear - no pain, just drainage. Shortly before my 13th b-day I had a really bad infection and my doc referred me to Dr. Dushay (Tulsa, Oklahoma). He diagnosed me immediately and set me up for surgery in the next few weeks. The first surgery was through the ear canal which seemed to work for a few months but then the drainage came back. We did another CT scan and the C-toma had actually progressed further into my ear and was actually eating away at my skull

behind my inner ear. I had surgery again the next summer; this time an incision was made behind my ear to fully expose the C-toma and see exactly how bad the damage was. I still had an ear drum but the bones of hearing in my middle ear were completely destroyed. Doc actually had to drill into my skull to completely remove the mass before it made its way into my brain cavity. I now have around 40% hearing in my right ear. That doesn't seem like much but you'd be suprised at how little I actually can hear even though my left ear is 100% OK. I was very lucky in the fact that the first ENT I had seen correctly diagnosed me and fixed the problem. So far I have not had a return of the C-toma and I am actually scheduled to have reconstruction surgery on August 26, 2004. I'm nervous because the possibility is there that a C-toma could be formed behind my eardrum (which now has a hole in it) but we won't know until Doc gets in there and prods around.

Please do not waste any time in getting your son's ear(s) fixed. Life without hearing is not fun and it may take several surgeries to completely heal his ear. Even then the possiblity of another C-toma forming is there. Do NOT go back to the first ENT since he has let your son suffer for so long with misdiagnosis. The second ENT seems to know what he is talking about but by all means if you feel the need to get a 3rd opinion - DO IT! C-toma's are not something to be taken lightly. If untreated they can deteriorate not only the ear cavity but they will grow consistently into your son's skull (as in my case). If nothing is done before this happens, the infection could actually reach your son's brain and cause meningitis or even death. Please do some extensive research on the internet - there is a lot of information out there that doctors don't always let you know about. I wish the best for you and your son as I have been there and will always see an ENT. It's not something I would

wish on anyone but remember there is hope out there. You just have to find it.

for_ebay_email <for_ebay_email@...> wrote:

Hello,I am kind of in shock after finding out my otherwise healthy 4 year old son will undergo a tympanoplasty with mastoidectomy in a few weeks. It all started with a bad ear infection in March that was resistant to antibiotics, his eardrum perforated and drained pus for a month. He was horribly sick, high fever, crabby, clingy and lethargic. I was told by my family dr that this amt of drainage was normal for a perforated eardrum, eventually my son got better and the family doctor referred me to an ENT to look at the hole left in my sons' eardrum. I went to this ENT for an entire summer, who told me my son's hole was getting smaller but was not closing entirely. He said he felt that the eardrum would need patching and that he was not comfortable treating 'such a small ear' and referred me to another

ENT Dr. out of town. On our first visit to this new ENT last week, he put a camera in my son's ear. We could see that there was practically NO eardrum left, and that the malleus was damaged. This new ENT said that this type of severe damage was most likely from an infection or Cholesteatoma in the mastoid, not a simple ear infection. I am confused and angry in who to trust - the ENTs seem to contradict each other, yet each recommends the other one to treat my son! And why had we never heard about the cholesteatoma or mastoid infection possiblity from the first ENT? When I have tried to raise these questions (without offending the current ENT), my questions are not given a direct answer. Both ENTs have good credentials and recommendations, and I don't want to poison the relationship with either Doctor because I want the best care for my son. I am now looking to get a 3rd opinion

before surgery in 2 weeks. Any suggestions? Been there?ThanksFaith

[Guest guest]

Faith,

My son was 4 when he had the cat scan and was told to sit still and he was not put under

anesthesia for it.  The first place we

called talked about it being this ½ hour procedure and that he’d need to

be put under…so we called the next place who said that was ridiculous.  Apparently, different places do it different

ways so my advice to you is to call around and find out who will scoff at

having a child put under for this reason, and have it done there.  Unless, of course, you don’t think your

child will be able to actually sit still for a length of less than 5

minutes.  Anyway, it is actually

considered unnecessary except to confirm the diagnosis.  They won’t be able to see the extent so

many docs consider it a waste if your planning to have the surgery anyway.

My son began taking Zyrtec

and his allergies have responded well to that.  In fact, we now are wondering, as well, if

that was the root of some of this problem. 

Although, he never presented with ear infections and the docs guess his c-toma was congenital…I wonder.  Can you look into medication as an option,

even if just for the worst of the allergy season?

Sincerely, Tara

4 year

old son just dx

Hello everyone,

Thanks for all the input and advice, I really

needed it. We are in

the Austin/San TX area. Our current

ENT is Dr. and his

specialization is in otolaryngology and

neurotology. He said that a

CT scan is unneccessary and would require my son

being put under

anesthesia twice, once for the ct scan and once

for the mastoidectomy

& tympanoplasty. Is the CT scan a

must? Anyone have an opinion on

this?

I wish that we could do more for my son's

allergies while he is in

there, because I feel that his allergies are at

the root of all these

problems. The doctor said that we should

explore other means to help

his allergies after the operation. I am

hesitant to put him on

antibiotics continually to treat his allergies, I

think that can't be

good for him. I hope that we can figure

something out.

Surgery is 2 weeks away, I'll be sure and post

what happens.

Thanks again,

Faith

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]

To all,

Please do not underestimate the value of a cat scan. In our situation, we did not get any firm diagnosis or treatment until one was done. By that time, the damage was severe and all hearing bones were destroyed.

Our son, had been seen by several ENT's who misdiagnosed him for years. I agree that a cat scan does not reveal the full extent of the damage but what it does do is clearly identify what is going on. It wasn't until this was done that we began aggressive surgical treatment that probably should have begun months or years prior.

Keep in mind that an untreated cholesteatoma can be fatal. He has been through 6 surgeries and countless office visits. I cannot help but wonder how different my son's treatment might have been had a cat scan been ordered sooner.

-----Original Message-----From: Tara Glosenger [mailto:stjng@...]Sent: Thursday, July 22, 2004 9:09 AMcholesteatoma Subject: RE: 4 year old son just dx

Faith,

My son was 4 when he had the cat scan and was told to sit still and he was not put under anesthesia for it. The first place we called talked about it being this ½ hour procedure and that he’d need to be put under…so we called the next place who said that was ridiculous. Apparently, different places do it different ways so my advice to you is to call around and find out who will scoff at having a child put under for this reason, and have it done there. Unless, of course, you don’t think your child will be able to actually sit still for a length of less than 5 minutes. Anyway, it is actually considered unnecessary except to confirm the diagnosis. They won’t be able to see the extent so many docs consider it a waste if your planning to have the surgery anyway.

My son began taking Zyrtec and his allergies have responded well to that. In fact, we now are wondering, as well, if that was the root of some of this problem. Although, he never presented with ear infections and the docs guess his c-toma was congenital…I wonder. Can you look into medication as an option, even if just for the worst of the allergy season?

Sincerely, Tara

-----Original Message-----From: for_ebay_email [mailto:for_ebay_email@...] Sent: Wednesday, July 21, 2004 10:54 AMcholesteatoma Subject: 4 year old son just dx

Hello everyone,Thanks for all the input and advice, I really needed it. We are in the Austin/San TX area. Our current ENT is Dr. and his specialization is in otolaryngology and neurotology. He said that a CT scan is unneccessary and would require my son being put under anesthesia twice, once for the ct scan and once for the mastoidectomy & tympanoplasty. Is the CT scan a must? Anyone have an opinion on this?I wish that we could do more for my son's allergies while he is in there, because I feel that his allergies are at the root of all these problems. The doctor said that we should explore other means to help his allergies after the operation. I am hesitant to put him on antibiotics continually to treat his allergies, I think that can't be good for him. I hope that we can figure something out.Surgery is 2 weeks away, I'll be sure and post what happens.Thanks again,Faith