Hi Everyone-- Questions

[Guest guest]

Hi there everyone! I just found this group, and I'm hoping that there

might be some answers to some questions I have. My husband is

scheduled for cholesteatoma surgery on January 14th, after about 6

months waiting for a decent diagnosis. Any help on any of these

questions would be so much appreciated. I know there are a lot of

questions-- please be patient with me!

1) The MRI he had in November showed that the Cholesteatoma had eroded

part of his skull base, exposing at a minimum a small part of his

dura.. looks like a big gap to me.. but the surgeon, (Dr Mark

Levenson) says that it's impossible to really tell the damage until

they are in there. For that reason, they have included a Dr. Bolous a

Neurologist with Albany Medical Center, to be in the surgery. Has

anyone had an experience similar?

2) Dr Levenson has told us that his hearing is secondary to the c-toma

removal. We understand that. His hearing in the ear with the c-toma is

just below normal -- the dr says that it is due to the c-toma

conducting the sound, and he will likely lose most of that. Anyone

with similar experiences?

3) We have pre-op appts with the Ear Surgeon and Neurologist next

week. Does anyone have any particular questions that I should ask at

those appointments? I have a basic understanding of what will happen

and have done my internet research, but I feel like this is much more

serious that the Drs have let on to this point. I don't want to alarm

my husband (he's already understandably freaking out) but I do better

with lots of information.

4) Obviously I'm the wife of a patient, does anyone have any advice

for me regarding the surgery and recovery? Fortunately we are both

very healthy and this is a new experience for both of us. I want to be

helpful to him, but I just am at a loss..

I'd appreciate any experiences you all would be willing to share.

Thanks in advance.

[Guest guest]

Hi there,

Sorry to hear about your current situation, but look on the bright

side, at least a lot of the mystery of your husbands ear problems has

been removed, and you now have a resolution strategy.

I can't speak to point number 1, since it sounds a little different

to my own experience.

Point number 2 was exactly what happened with my left ear. A large

Cholesteatoma had developed, and had essentially consumed the bones

in that ear, so the hearing I did have was basically through the

Cholesteatoma. After my surgeon took out the Cholesteatoma, he

inserted a prosthesis called a TORP, that basically replaced the

inner ear bones. Fortunately in my case, the hearing in my left ear

is now reasonable, not great, but not bad either.

Point 3, I am always of the opinion that the more information you can

get the better. Keep in mind though that you really have to trust the

experience and judgement of your surgeons, but a good surgeon will

have no problem with taking the time to answer your questions.

Recovery time will vary by each case. I was ready to take on light

duties within a week, but I think if your husband has an active or

physically demanding job it may take quite a bit longer to recover.

I'm scheduled for a CToma removal in my right ear, and I plan not to

travel for the first 10 days after surgery or fly for the first 30

days after surgery (clearly, recovery time is something you should

definitely check with your surgeon).

Good luck!

>

> Hi there everyone! I just found this group, and I'm hoping that

there

> might be some answers to some questions I have. My husband is

> scheduled for cholesteatoma surgery on January 14th, after about 6

> months waiting for a decent diagnosis. Any help on any of these

> questions would be so much appreciated. I know there are a lot of

> questions-- please be patient with me!

>

> 1) The MRI he had in November showed that the Cholesteatoma had

eroded

> part of his skull base, exposing at a minimum a small part of his

> dura.. looks like a big gap to me.. but the surgeon, (Dr Mark

> Levenson) says that it's impossible to really tell the damage until

> they are in there. For that reason, they have included a Dr. Bolous

a

> Neurologist with Albany Medical Center, to be in the surgery. Has

> anyone had an experience similar?

>

> 2) Dr Levenson has told us that his hearing is secondary to the c-

toma

> removal. We understand that. His hearing in the ear with the c-toma

is

> just below normal -- the dr says that it is due to the c-toma

> conducting the sound, and he will likely lose most of that. Anyone

> with similar experiences?

>

> 3) We have pre-op appts with the Ear Surgeon and Neurologist next

> week. Does anyone have any particular questions that I should ask at

> those appointments? I have a basic understanding of what will happen

> and have done my internet research, but I feel like this is much

more

> serious that the Drs have let on to this point. I don't want to

alarm

> my husband (he's already understandably freaking out) but I do

better

> with lots of information.

>

> 4) Obviously I'm the wife of a patient, does anyone have any advice

> for me regarding the surgery and recovery? Fortunately we are both

> very healthy and this is a new experience for both of us. I want to

be

> helpful to him, but I just am at a loss..

>

> I'd appreciate any experiences you all would be willing to share.

> Thanks in advance.

>

[Guest guest]

Hi

I've had surgery twice now for my c'tomas, one in each ear.

I would just say that if the hearing is bad, push for a hearing aid as

soon as you can, it makes life a lot easier.

I can't wear regular hearing aids as they cause infections so am

waiting to have a Bone Anchored Hearing Aid which sits on the skull.

Definately worth asking about as it can make you very depressed not

being able to hear. Be prepared for this. Whenever I had ear

infections I would close in on myself and get very low. This isn't

like losing a limb, nobody can see hearing loss and just don't think

about it.

With the surgery your husband may be advised not to move after

surgery, even moving his head can cause problems. After my last

surgery I reacted to the drugs and suddenly had this burst of energy,

I felt fantastic, rearing to go, couldn't wait to get out of bed and

leave, 2 hours down the line and I was sick as a dog, and my ear

wouldn't stop bleeding. The nurses did tell me to rest but I just

couldn't. I now have a lump behind my ear which is where it wouldn't

stop bleeding and it was very frightening for my children to see me in

that state.

Good luck.

Louise

> >

> > Hi there everyone! I just found this group, and I'm hoping that

> there

> > might be some answers to some questions I have. My husband is

> > scheduled for cholesteatoma surgery on January 14th, after about 6

> > months waiting for a decent diagnosis. Any help on any of these

> > questions would be so much appreciated. I know there are a lot of

> > questions-- please be patient with me!

> >

> > 1) The MRI he had in November showed that the Cholesteatoma had

> eroded

> > part of his skull base, exposing at a minimum a small part of his

> > dura.. looks like a big gap to me.. but the surgeon, (Dr Mark

> > Levenson) says that it's impossible to really tell the damage until

> > they are in there. For that reason, they have included a Dr. Bolous

> a

> > Neurologist with Albany Medical Center, to be in the surgery. Has

> > anyone had an experience similar?

> >

> > 2) Dr Levenson has told us that his hearing is secondary to the c-

> toma

> > removal. We understand that. His hearing in the ear with the c-toma

> is

> > just below normal -- the dr says that it is due to the c-toma

> > conducting the sound, and he will likely lose most of that. Anyone

> > with similar experiences?

> >

> > 3) We have pre-op appts with the Ear Surgeon and Neurologist next

> > week. Does anyone have any particular questions that I should ask at

> > those appointments? I have a basic understanding of what will happen

> > and have done my internet research, but I feel like this is much

> more

> > serious that the Drs have let on to this point. I don't want to

> alarm

> > my husband (he's already understandably freaking out) but I do

> better

> > with lots of information.

> >

> > 4) Obviously I'm the wife of a patient, does anyone have any advice

> > for me regarding the surgery and recovery? Fortunately we are both

> > very healthy and this is a new experience for both of us. I want to

> be

> > helpful to him, but I just am at a loss..

> >

> > I'd appreciate any experiences you all would be willing to share.

> > Thanks in advance.

> >

>

[Guest guest]

Hi Lynn, I am here because my 3yr old niece (who I care for) just had a c-toma removed in December. the only advice I really have for you is to prepare for the unexpected. The reason I say this is because of what my husband went through with his 1st ever surgery......a very long time in recovery before going home. The short version of the story is that he was allergic to the demeral. So, to me given your history of both being healthy is to be prepared for the unexpected. Make sure he does drink plenty of water prior to his liquid cutoff prior to surgery. The more hydrated you are going into surgery the better it is. My niece was scheduled for a 4 hr surgery. I has happy that the surgical nurse told me that her surgeon was known for going 5-6 hrs when he has scheduled 4 hrs. So, I wasn't worried

when the 4 hr mark came and went. She took a long time in recovery this time, and instead of going home, she was admitted and stayed over night. I was perfectly fine with this. Try to have something to occupy your time during his surgery, a book to read, newspaper, magazine, crossword puzzles etc. I hope all goes well with his surgery and that you get the additional information that you are looking for. Connie Lynn <lynnl716@...> wrote: Hi there everyone! I just found this group, and I'm hoping that theremight be some answers to some questions I have. My husband isscheduled for cholesteatoma surgery on January 14th, after about 6months waiting for a decent diagnosis. Any help on any of thesequestions would be so much appreciated. I know there are a lot ofquestions-- please be patient with me!1) The MRI he had in November showed that the Cholesteatoma had erodedpart of his skull base, exposing at a minimum a small part of hisdura.. looks like a big gap to me.. but the surgeon, (Dr MarkLevenson) says that it's impossible to really tell the damage untilthey are in there. For that reason, they have included a Dr. Bolous aNeurologist with Albany Medical Center, to be in the surgery. Hasanyone had an experience similar?2) Dr Levenson has told us that his hearing is secondary to the

c-tomaremoval. We understand that. His hearing in the ear with the c-toma isjust below normal -- the dr says that it is due to the c-tomaconducting the sound, and he will likely lose most of that. Anyonewith similar experiences?3) We have pre-op appts with the Ear Surgeon and Neurologist nextweek. Does anyone have any particular questions that I should ask atthose appointments? I have a basic understanding of what will happenand have done my internet research, but I feel like this is much moreserious that the Drs have let on to this point. I don't want to alarmmy husband (he's already understandably freaking out) but I do betterwith lots of information. 4) Obviously I'm the wife of a patient, does anyone have any advicefor me regarding the surgery and recovery? Fortunately we are bothvery healthy and this is a new experience for both of us. I want to behelpful to him, but I just am at a loss.. I'd

appreciate any experiences you all would be willing to share.Thanks in advance.