New Member

Posted September 30, 2008 · September 30, 2008

--

HI, I had one removed about 9 months ago and much of my hearing was

restored, but the clarity of sound in that ear is very bad. Doc said

he had hoped to restore hearing, but that " leakage into my inner ear "

occured and caused the problem. But hearing in stereo was fabulous and

allowed me to once again enjoy music.

About 6 weeks ago I started to re-experience dizziness. I used Otic

Floxin ear drops for 15 days, and most of the dizziness went away. My

doc also had me do some positional exercises, alternating laying on

one ear, waiting for the dizziness to subside, and then the other ear.

I would repeat this twice daily. After two days..no more dizziness.

And a follow up MRI, not CAT scan, is set up for Nov. I don't know if

this will show anything. Right now I feel good.

I would always have Floxin drops in my bag wherever I travel, and

start administering 5 drops, twice a day for 15 days whenever

dizziness recurs.

Hope this helps

-

In cholesteatoma , " Rusnak " <jrflyfish@...> wrote:

>

> Hi! I've just had me second cholesteatoma removed. My first surgery

> was April 21, 2003. My surgeon did a fabulous job in rebuilding my

> ear the first time. I had lost two of the small bones, one smallest

> gone completely and the middle bone damaged beyond function. A

> single titanium prosthesis was installed and took the place of both

> bones. An eardrum was created for me using the cartilage from behind

> my ear. Coool. Three weeks after the surgery (and after the packing

> removed), I heard in stereo for the first time in my memory. I was

> 35. Well, needless to say over the past year I did notice a drop in

> my hearing and that I had been getting dizzy from time to time. By

> June, I was dizzy every single day. An infection, I, along with

> everyone , thought. I had been very sick with a super bad sinus

> infection that would not go away in the Spring. It was leftover was

> the belief, and went to my ear. Surgery on August 18 showed the

> cholesteatoma back with a vengence. The bony covering over the facial

> nerve was gone. Two cells remain stuck to the facial nerve. My

> mastoid is intact. Facial nerve monitoring was used during my

> surgery. I was left with a huge case of TMJ. My face swelled days

> later. One week ago today, I had to have half of the packing remove -

> I could no longer tolerate the pain and numbness in my face.

> Yesterday was a good day - not dizzy at all. Today, another story,

> dizzy! I have another visit Wednesday with my surgeon. I m worried I

> won't be able to return to work full time and that my face will be

> paralized. I do not want this in my brain. I've been prepared for

> this since I was 15 years old when I was first diagnosed with a

> potential for cholesteatoma. The wait is over, and fear has really

> set in.

>

Posted September 30, 2008 · September 30, 2008

Sorry but can you just explain how you can be diagnosed as a potential

for a c'toma? Surely this means that they know what causes it and

there is then a chance they can stop it before it starts or am I

getting this totally wrong.

Louise

> >

> > Hi! I've just had me second cholesteatoma removed. My first surgery

> > was April 21, 2003. My surgeon did a fabulous job in rebuilding my

> > ear the first time. I had lost two of the small bones, one smallest

> > gone completely and the middle bone damaged beyond function. A

> > single titanium prosthesis was installed and took the place of both

> > bones. An eardrum was created for me using the cartilage from behind

> > my ear. Coool. Three weeks after the surgery (and after the packing

> > removed), I heard in stereo for the first time in my memory. I was

> > 35. Well, needless to say over the past year I did notice a drop in

> > my hearing and that I had been getting dizzy from time to time. By

> > June, I was dizzy every single day. An infection, I, along with

> > everyone , thought. I had been very sick with a super bad sinus

> > infection that would not go away in the Spring. It was leftover was

> > the belief, and went to my ear. Surgery on August 18 showed the

> > cholesteatoma back with a vengence. The bony covering over the facial

> > nerve was gone. Two cells remain stuck to the facial nerve. My

> > mastoid is intact. Facial nerve monitoring was used during my

> > surgery. I was left with a huge case of TMJ. My face swelled days

> > later. One week ago today, I had to have half of the packing remove -

> > I could no longer tolerate the pain and numbness in my face.

> > Yesterday was a good day - not dizzy at all. Today, another story,

> > dizzy! I have another visit Wednesday with my surgeon. I m worried I

> > won't be able to return to work full time and that my face will be

> > paralized. I do not want this in my brain. I've been prepared for

> > this since I was 15 years old when I was first diagnosed with a

> > potential for cholesteatoma. The wait is over, and fear has really

> > set in.

> >

>

Posted September 30, 2008 · September 30, 2008

Louise,

Acquired cholesteatoma is usually attributed to a poorly functioning

eustachian tube. There's simply not a lot that they can do about that

at this point in time. It make us more prone to ear infections, which

often yields negative pressure in the middle ear, leading to a cyst

sometimes forming. My doctor told me that I could blame my parents for

giving me the overall shape of my head, jaw, etc. resulting in the

eustachian tube malfunction, but they were such nice people. Instead

I'll put the blame on a certain politician, who shall remain nameless,

because it makes me feel better to do so!

Once you've had it, you need to always have a doctor on the lookout for it.

From what I understand, congenital cholesteatoma is a little different,

but recurrences for kids can often be attributed to that same

politician. :-)

Matt

louise_and_james wrote:

>

> Sorry but can you just explain how you can be diagnosed as a potential

> for a c'toma? Surely this means that they know what causes it and

> there is then a chance they can stop it before it starts or am I

> getting this totally wrong.

>

> Louise

>

> > >

> > > Hi! I've just had me second cholesteatoma removed. My first surgery

> > > was April 21, 2003. My surgeon did a fabulous job in rebuilding my

> > > ear the first time. I had lost two of the small bones, one smallest

> > > gone completely and the middle bone damaged beyond function. A

> > > single titanium prosthesis was installed and took the place of both

> > > bones. An eardrum was created for me using the cartilage from behind

> > > my ear. Coool. Three weeks after the surgery (and after the packing

> > > removed), I heard in stereo for the first time in my memory. I was

> > > 35. Well, needless to say over the past year I did notice a drop in

> > > my hearing and that I had been getting dizzy from time to time. By

> > > June, I was dizzy every single day. An infection, I, along with

> > > everyone , thought. I had been very sick with a super bad sinus

> > > infection that would not go away in the Spring. It was leftover was

> > > the belief, and went to my ear. Surgery on August 18 showed the

> > > cholesteatoma back with a vengence. The bony covering over the facial

> > > nerve was gone. Two cells remain stuck to the facial nerve. My

> > > mastoid is intact. Facial nerve monitoring was used during my

> > > surgery. I was left with a huge case of TMJ. My face swelled days

> > > later. One week ago today, I had to have half of the packing remove -

> > > I could no longer tolerate the pain and numbness in my face.

> > > Yesterday was a good day - not dizzy at all. Today, another story,

> > > dizzy! I have another visit Wednesday with my surgeon. I m worried I

> > > won't be able to return to work full time and that my face will be

> > > paralized. I do not want this in my brain. I've been prepared for

> > > this since I was 15 years old when I was first diagnosed with a

> > > potential for cholesteatoma. The wait is over, and fear has really

> > > set in.

> > >

> >

>

--

Posted September 30, 2008 · September 30, 2008

Will have to ask my consultant what I have. Thanks for clearing that up.

Louise

--- In cholesteatoma , "

Posted September 30, 2008 · September 30, 2008

Congenital would mean you were born with it. I hope this is discovered

and removed in childhood. Adults typically struggle with acquired.

Matt

louise_and_james wrote:

>

> Will have to ask my consultant what I have. Thanks for clearing that up.

>

> Louise

>

> --- In cholesteatoma

> <mailto:cholesteatoma%40>, "

Posted September 30, 2008 · September 30, 2008

Welcome , grady

Posted December 24, 2008 · December 24, 2008

Welcome to the group. What are your symptoms that make you think you have a cholesteatoma like your daughter?

From: emsguy5449 <emsguy54@...>cholesteatoma Sent: Tuesday, December 23, 2008 3:24:49 PMSubject: New Member

I am a new member to the group and glad to have found something like this. I have a 9 yr old girl that suffers from c-toma we have had 3 surgeries to date and was just refered to a new doctor for continued care. We have had the c-toma come back 2 times and have damaged the surgeries that have been done in the past. We have put 2 grafts in place and the last is still holding as this surgery was during Thanksgiving this year. I have just learned that I may be suffering from the same condition and will be having surgery the first of the year to make that finding. I look forward to reading what is in the forum.

Posted December 24, 2008 · December 24, 2008

I have had several infections lots of hearing lose. had tubes put im

place several times and still have infections and no relief from the

tubes.

Posted December 26, 2008 · December 26, 2008

Althought it is possible, but that does not mean you have ctoma.

You may have to talk to your surgeon to arrange for a CT scan.

Unnecassry surgery just make thing worse.

What your surgeon is going to do in the surgery?

>

> I have had several infections lots of hearing lose. had tubes put

im

> place several times and still have infections and no relief from

the

> tubes.

>

Posted December 27, 2008 · December 27, 2008

He is wanting to put in permanent PE tubes. One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now.

Posted December 27, 2008 · December 27, 2008

yesOne site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now.

Posted December 27, 2008 · December 27, 2008

Why do they have to do the permanent tubes in surgery instead of in office like my other ones. One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now.

Posted December 27, 2008 · December 27, 2008

Chloe has the long term tubes, and they have been great. It only takes a few minutes to pop them in, and it's better than having a series of tubes. Good luck!

On Sat, Dec 27, 2008 at 2:56 PM, <emsguy54@...> wrote:

He is wanting to put in permanent PE tubes.

One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now.

Posted January 19, 2009 · January 19, 2009

Not dumb! Always research and double, triple research when it comes to your eyes! Not dumb at all. Very smart, even if it has no affect. Smart to research and smart to ask. ï»¿ ï»¿ ï»¿ ï»¿ ï»¿ ï»¿ ï»¿ ï»¿Best Selling Author of Son of My Soul - The Adoption of , A Very Special Child - An Adoption Story - co-author Jesus Gandhi Oma Mae "; scribe for Bullfrog Catcher http://www.DebraShiveleyWelch.netI firmly believe that I have received the same child I was meant to receive whether I gave birth or adopted. The same soul, the same entity was meant to be mine from the beginning of time. Debra Shiveley Welch "A Very Special Child"

-- New member

Wow i was surprised to find this group. I did not know so many people had this same trait! I use to not even think about my eye color until just recently when i started to research Lasik eye surgery. I was doing all my research and ended up looking for silly questions like can lasik be done on people with 2 different colored eyes. I wasnt sure if me having 2 eye colors someone would effect my surgery..dumb i knowBut anyways cool group i have found BTW anyone happen to have my same color combination?Left eye is solid green Right eye is split 50/50 perfectly splitting my pupil Brown on bottom green on top. Thanks!!

Posted February 28, 2009 · February 28, 2009

I will attach my letter which will tell you all I can about the MGB. I lost

about 100 pounds, but after 3 years, I've gained back about 30. I went back to

sipping Pepsi (a serious no-no) which causes the stomach to stretch back out.

So, NO carbonated beverages for you!

Marilyn Morin

Colchester, Vermont

From: jackoccie@...

Date: Tue, 24 Feb 2009 21:22:48 +0000

Subject: new member

this is step one in the 12 steps for me. like to visit with people

as

they ask you to do instep one. i am morbidlty obease and it is time to

get help. i am 57 year widower working to change my life. love be able

to talk to people about what is ahead. pray they will take me.

jack

Posted November 12, 2009 · November 12, 2009

I know there was a great surgeon here at Mass Eye and Ear that

specialized in both microtia and ctoma surgeries. He was a great

resource and is now at Vanderbuilt in Tennessee. I think he is the

kind of guy who would answer an email. It's Dr. Roland Eavey. He was

wonderful when Chloe had some emergency complications last year and

our surgeon was on vacation.

That's a unique situation, and I hope you get good answers soon.

On 11/11/09, LYNN MARIE <dimpiedoo@...> wrote:

> Hi am a new member to this group. My son Jake is 3 years 3 months old.

> Last October he was diagnosed by an Atresia Surgeon in CA with a

> cholesteatoma after reviewing a CT scan to determine whether he would be a

> suitable candidate for canalplasty surgery. Jake has Atresia and Microtia,

> and ear canal stenosis. I haven't read any posts yet and am writing blindly

> to the group after reading a disturbing post on the Atresia Microtia website

> just tonight.

>

> I was told that the cholesteatoma did need to be removed in time but was not

> made to feel in ANY way that there was any urgency. We had planned for his

> Atresia repair surgery to be in August of 2009 but he is so very small for

> his age and we were told we should wait until he is at least 30 pounds.

> After reading another parents' post, I feel neglectful and afraid. It is a

> year later and I feel as if there is something in there eating away at him

> and I am so worried.

>

> Has anyone had a very young child have one of these removed during atresia

> surgery and what should I prepare for? I am scheduling a new CT scan in the

> morning but I am not educated at all on cholesteatoma.

>

> Any help is greatly appreciated

> Lynn Whitenight

>

> ------------------------------------

>

Posted November 30, 2009 · November 30, 2009

You are welcomed, u will get lot of medical information here

Dr. Gupta Arun

On 12/1/09, 's Parents <sarahsabal@...> wrote:

I wish to join this group.

Posted December 1, 2009 · December 1, 2009

Hello I am glad you found this site! It has been a life saver to my sanity! Everyone on here are truly concerned and very helpful I have learned so much about this condition and don't feel like I am alone with it anymore. You will love it! Malerie Ace

From: 's Parents <sarahsabal@...>cholesteatoma Sent: Mon, November 30, 2009 6:35:55 PMSubject: New member

I wish to join this group.

Posted December 11, 2009 · December 11, 2009

Hi, I also live in stl. My 2 year old daughter le had a VERY large c toma removed last month by Dr. Hullar. I love him. We even flew to Childrens hosp in Philadelphia bc they are ranked #1. No one compared to him. My daughter also has a very rare heart disease that's associated with not being able to handle anesthesia. With A LOT of prayers (including from this wonderful group) she had a 10 hour surgery and has recovered remarkably well. It was the largest c toma he has ever seen. And it was in my 25 lbs 2 year old with heart disease. We were so happy about the surgery, and couldn't ask for anything more. Dr. Hullar spent a lot of time with us at appts and an the phone. He even talked to the Dr.s in Phillie that we saw. I now this is very scary. But I trusted Dr. Hullar with my daughters life and wouldn't change a thing. if I can help you in any way I will. My # 618-530-6427. Sincerely, NimmonsSent from my Verizon Wireless BlackBerryFrom: "dot245" <bjustjoni@...>Date: Fri, 11 Dec 2009 18:21:47 -0000<cholesteatoma >Subject: New member Hello,I have a son 11 who will need cholesteatoma surgery. We are in the St. Louis, Mo area. We are scheduled for Feb with Dr. Huller at Childrens hospital. I am scared to death! I have been doing lots of reading--it seems you never just have one surgery--Any advice would be appreciated.Thank you,dot245

Posted December 15, 2009 · December 15, 2009

HI,

My son Nath has had two surgeries one in 2007 for the left ear and another last

month for the right ear. Here in the UK it is quite common for the surgeon to

remove everything within the ear, whether it is diseased or not. This means a

better chance of it not returning but a hole double the size of normal in the

entry to the ear and no hearing bones left. Nath has so far been fine and not

needed any more surgery on the left, he has is cleaned regularly and all seems

well.

You will be back and forth the doctors office regularly but it's a small price

to pay for his health being fine.

I am sure once you get it over with you will realise that even though it will be

part of his life forever it will be ok. x

Posted February 15, 2010 · February 15, 2010

Thanks ,

Thank you for sharing your doctor's advice. I like that and I will remember it.

I'll let you know how it goes.

Sincerely,

Teri

________________________________

From: Nucleus24 <nucleus24@...>

Sent: Mon, February 15, 2010 3:40:42 PM

Subject: Re:new member

Hi Teri,

Welcome to the group. If dizziness prevented people from getting CIs,

lots of us wouldn't have them. Myself included.

Teaching young children is especially difficult with a hearing loss,

because their voices are so high pitched, and those are the ferquencies

you lose first. Even with " normal age related " hearing loss.

When you back for your evaluation in March, remember what MY first

implant surgeon told me. " this is not a test you want to try to hard to

pass " NOT that you should cheat. BUT if you think you hear something,

but are not absolutely, positvely 100% sure you did hear it, then don't

respond to it. We deafies tend to fill in the blanks and become quite

good at guessing, even when we don't hear something. Or we've taken the

tests so often that we know what word comes after " baseball, hotdog and

airplane "

So, do not guess if you didn't hear something.

Good luck,

HI , my name is Teri and I am 48 years old. I started losing my hearing

when I was about 35, but didn't notice it much. That's when I first

noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and

wear a hearing aid in my right ear. The last two years I have experienced

profound hearing loss in my right ear and I keep noticing that I can no

longer hear things I could hear six months ago.I am getting more and more

frustrated all the time. I really have trouble on the phone now and I am

picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI

but did not qualify. I am going back for another evaluation in March. I

try to stay positive by appreciating all the technology that is available

to people with hearing loss and my family and friends are very

supportive. I'm going to my first HOH support group next week, so that

should be helpful. I've been looking for people with a similar experience

to mine... hearing loss in middle age. It's very scary. I " m also a

kindergarten teacher, so my hearing loss presents challenges at work.

Anyways, I have lots to say, but I would love to hear from anyone having

a similar experience. Also one question I have is that I also started

experiencing some dizziness the last few months. could this prevent me

from getting a CI?

____________ _________ _________ _________ _________ _________ _

Love Spell

Click here to light up your life with a love spell!

http://thirdpartyof fers.juno. com/TGL2141/ c?cp=k2EQKY37z5O oya30wQ4phAAAJ1C

AYQG2fnZWBLacCwl pBoaTAAYAAAAAAAA AAAAAAAAAAADNAAA AAAAAAAAAAAAAAAA ARwAAAAA=

Posted February 16, 2010 · February 16, 2010

Just to add a thought... my audiologist told me to make my best guess at words,

that it was helpful to them. I don't know which is better, but there is a

difference in opinion.

Â

My hearing loss is also due toÂ Menieres disease- I lost the low frequencies

first..

From: Regina Marulli <rmarulli@...>

Subject: Re: Re:new member

Date: Tuesday, February 16, 2010, 1:12 AM

Â

With Meniere's disease it is the low pitch sounds thatÂ start Â the normal

hearing lossÂ progression. .I continue to hear high pitch sounds in my left ear

non implant ear even though my hearing loss is considered severe. So as I

mentioned before in my post to you, youÂ might want to check whether your

symptoms indicate Meniere's Not all hearing loss starts with loss to high pitch

sounds.Â

Regina

____________ _________ _________ __

From: Nucleus24 <nucleus24juno (DOT) com>

groups (DOT) com

Sent: Mon, February 15, 2010 6:40:42 PM