new here--have questions

[Guest guest]

Hi. my name is Jonna and I am new here. I am 34 years old and here

is my story:

For the past 4 years I have been getting frequent sinus infections

(5xs per year)--usually on my right side about 3-4 times a year these

would turn into an ear infection--again on my right side.

I knew I had a deviated septum making it hard for my right side to

drain so I had surgery a year ago to repair it. Since then, things

have actually been worse--more sinus infections and about 4 ear

infections.

As far back as I can remember, anytime a dr. would look into my right

ear they would say--'wow, I sees a good bit of scar tissue' but would

never explain more. I have also had drs. ask if I had ever ruptured

my eardrum (which, to my knowledg, I have not).I also never had tubes

in my ears; although I did have frequent ear infections as a young

child.

The past month has been the worst. I have been on 5 antibiotics

antibiotic to clear up a sinus infection and two weeks ago I blew my

nose really hard and it totally clogged up my right ear.

I then went to an ENT on Monday (up until then I had been treated by

my PCP) The ENT said I have a 'terrible buldging' ear infection and

it looks to him like I may also have a c-toma. he kept saying how

rare they are and how they are not common in adults and he has only

seen 2 ion his 20 years of practice and on and on.

Anyway, I come how and read about c-tomas and am almost convinced

that is what I have.

And I am beginning to wonder if I have had a c-toma for a few years

now---and the PCPs who have looked in my ear did not recognize it.

FOr the past few years,I have frequently had ringing in my right ear

but ignored it and I have also noticed when pictures are taken of me

when I am very tired my right eye is almost closed --(again, this is

the same side as the suspected c-toma). also when I have traveled via

an airplane in the past few years I have had an unbearable pain in my

right ear.

so for the past 10 days I have had constant ringing in my right ear

and it feels totally clogged up and I cannot hear out of it. the ENT

did a hearing test that said I do have a significant amount of

hearing loss, but my eardrum is doing okay. the ent said if I am

still having symptoms in 3 weeks he will do a cat scan. Is this how

you find out if it is a c-toma for sure? he said it can't tell me for

sure, but will tell me if there is air trapped in my ear. either way,

I do not know if I can comfortably wait for three weeks. the right

side of my face just 'feels' weak if that makes any sense and the

ringing is getting to me. I also fear that if I have had this for a

while, that the longer I wait to remove it, the more damage it will

do.

SO my questions are::Are any of the symptoms I have experienced are

indicative of a c-toma based on your experiences? Also, was your c-

toma confirmed with a CAT scan? Do ear infections seem to exacerbate

your c-toma symptoms? has anyone ever pursued a naturopath to help

with treatment? what kind of dr. do I need to be seeing? Has anyone

had especially good experiences with any drs. in Texas?

thank you so much for your time!!

-jonna

[Guest guest]

Hi Jonna,

Your story sounds all too familiar to me. A long history of ear

problems, periodic bouts of hearing loss, and a lack of a definitive

answer from a series of well meaning ENT doctors.

Clearly, I can't tell whether or not you have a Cholesteatoma, but

the symptoms you describe indicate that you may be in an " at risk "

category.

I think the most important next step for you is to schedule an

appointment with a Neuro-Otologist (not just a regular ENT doc). Try

and find one with a superb reputation. With an expert examining you

(and probably a cat scan), he or she should be able to determine

quickly whether or not you have a Cholesteatoma.

Hopefully you get the all clear, but either way, I think that the

next step for you is to schedule a visit with the best Neuro-

Otologist in Texas. I am sure that if you ask on this board that you

will get some recommendations in this regard.

Good luck!!!

>

> Hi. my name is Jonna and I am new here. I am 34 years old and here

> is my story:

> For the past 4 years I have been getting frequent sinus infections

> (5xs per year)--usually on my right side about 3-4 times a year

these

> would turn into an ear infection--again on my right side.

> I knew I had a deviated septum making it hard for my right side to

> drain so I had surgery a year ago to repair it. Since then, things

> have actually been worse--more sinus infections and about 4 ear

> infections.

> As far back as I can remember, anytime a dr. would look into my

right

> ear they would say--'wow, I sees a good bit of scar tissue' but

would

> never explain more. I have also had drs. ask if I had ever ruptured

> my eardrum (which, to my knowledg, I have not).I also never had

tubes

> in my ears; although I did have frequent ear infections as a young

> child.

> The past month has been the worst. I have been on 5 antibiotics

> antibiotic to clear up a sinus infection and two weeks ago I blew

my

> nose really hard and it totally clogged up my right ear.

> I then went to an ENT on Monday (up until then I had been treated

by

> my PCP) The ENT said I have a 'terrible buldging' ear infection and

> it looks to him like I may also have a c-toma. he kept saying how

> rare they are and how they are not common in adults and he has only

> seen 2 ion his 20 years of practice and on and on.

> Anyway, I come how and read about c-tomas and am almost convinced

> that is what I have.

> And I am beginning to wonder if I have had a c-toma for a few years

> now---and the PCPs who have looked in my ear did not recognize it.

> FOr the past few years,I have frequently had ringing in my right

ear

> but ignored it and I have also noticed when pictures are taken of

me

> when I am very tired my right eye is almost closed --(again, this

is

> the same side as the suspected c-toma). also when I have traveled

via

> an airplane in the past few years I have had an unbearable pain in

my

> right ear.

> so for the past 10 days I have had constant ringing in my right ear

> and it feels totally clogged up and I cannot hear out of it. the

ENT

> did a hearing test that said I do have a significant amount of

> hearing loss, but my eardrum is doing okay. the ent said if I am

> still having symptoms in 3 weeks he will do a cat scan. Is this how

> you find out if it is a c-toma for sure? he said it can't tell me

for

> sure, but will tell me if there is air trapped in my ear. either

way,

> I do not know if I can comfortably wait for three weeks. the right

> side of my face just 'feels' weak if that makes any sense and the

> ringing is getting to me. I also fear that if I have had this for a

> while, that the longer I wait to remove it, the more damage it will

> do.

> SO my questions are::Are any of the symptoms I have experienced are

> indicative of a c-toma based on your experiences? Also, was your c-

> toma confirmed with a CAT scan? Do ear infections seem to

exacerbate

> your c-toma symptoms? has anyone ever pursued a naturopath to help

> with treatment? what kind of dr. do I need to be seeing? Has

anyone

> had especially good experiences with any drs. in Texas?

> thank you so much for your time!!

> -jonna

>

[Guest guest]

Hi Jonna,

I'm fairly new here too and I'm sure there are others with more

experience that will answer some of your questions.

I just want to stress the importance of going to someone who is

experienced, not someone who only sees one or two in 20 years.

From what I understand, the more experienced your doctor/surgeon is the

better the results will be when treated.

Look through the files for this group and find the one that describes

the best type of doctor to see.

My doctor could actually see my c-toma through a hole in my ear drum,

using his super-duper high powered microscope.

So, yesterday I scheduled surgery for March 3rd.

It was a sad day to have it confirmed, but after reading all of the

posts here for the past couple of months, I came to realize

that " it is what it is. " The posts on this group have been, for the

most part, encouraging and helpful.

Jan

> Hi. my name is Jonna and I am new here. I am 34 years old and here

> is my story:

> For the past 4 years I have been getting frequent sinus infections

> (5xs per year)--usually on my right side about 3-4 times a year these

> would turn into an ear infection--again on my right side.

> I knew I had a deviated septum making it hard for my right side to

> drain so I had surgery a year ago to repair it. Since then, things

> have actually been worse--more sinus infections and about 4 ear

> infections.

> As far back as I can remember, anytime a dr. would look into my right

> ear they would say--'wow, I sees a good bit of scar tissue' but would

> never explain more. I have also had drs. ask if I had ever ruptured

> my eardrum (which, to my knowledg, I have not).I also never had tubes

> in my ears; although I did have frequent ear infections as a young

> child.

> The past month has been the worst. I have been on 5 antibiotics

> antibiotic to clear up a sinus infection and two weeks ago I blew my

> nose really hard and it totally clogged up my right ear.

> I then went to an ENT on Monday (up until then I had been treated by

> my PCP) The ENT said I have a 'terrible buldging' ear infection and

> it looks to him like I may also have a c-toma. he kept saying how

> rare they are and how they are not common in adults and he has only

> seen 2 ion his 20 years of practice and on and on.

> Anyway, I come how and read about c-tomas and am almost convinced

> that is what I have.

> And I am beginning to wonder if I have had a c-toma for a few years

> now---and the PCPs who have looked in my ear did not recognize it.

> FOr the past few years,I have frequently had ringing in my right ear

> but ignored it and I have also noticed when pictures are taken of me

> when I am very tired my right eye is almost closed --(again, this is

> the same side as the suspected c-toma). also when I have traveled via

> an airplane in the past few years I have had an unbearable pain in my

> right ear.

> so for the past 10 days I have had constant ringing in my right ear

> and it feels totally clogged up and I cannot hear out of it. the ENT

> did a hearing test that said I do have a significant amount of

> hearing loss, but my eardrum is doing okay. the ent said if I am

> still having symptoms in 3 weeks he will do a cat scan. Is this how

> you find out if it is a c-toma for sure? he said it can't tell me for

> sure, but will tell me if there is air trapped in my ear. either way,

> I do not know if I can comfortably wait for three weeks. the right

> side of my face just 'feels' weak if that makes any sense and the

> ringing is getting to me. I also fear that if I have had this for a

> while, that the longer I wait to remove it, the more damage it will

> do.

> SO my questions are::Are any of the symptoms I have experienced are

> indicative of a c-toma based on your experiences? Also, was your c-

> toma confirmed with a CAT scan? Do ear infections seem to exacerbate

> your c-toma symptoms? has anyone ever pursued a naturopath to help

> with treatment? what kind of dr. do I need to be seeing? Has anyone

> had especially good experiences with any drs. in Texas?

> thank you so much for your time!!

> -jonna