post-op questions

[Guest guest]

Hi Colleen,

In my experience it is never good to have a retracted eardrum. Last month I had a tube put in because my eastachian tube would not and doesn't stay open. Alot of pain was relieved. I am still being monitored. I had my last surgery in Feb.

If it were me I would see the Dr ASAP.

Ingrid

Post-op questions

Hello,I had CWU surgery in March. I'm still feeling a little bit of pain and discomfort. There has been a lot of wax build up and I can feel my ear drum is retracted. Every time I equalize my ear, it's pulled back in immediately. I'm concerned it may be infected.Before I go rushing off to the doctor(s) (whom I've had difficulty dealing with), I was just wondering if this is just a normal part of the healing process?Colleen

[Guest guest]

Ingrid,

I had CWD procedure done at the beginning of April, my first experience with c-toma. I am pretty confident in my specialist I see at s Hopkins. My last visit, at the 5 week mark, he noticed that there was a build up of fluid. He wasn't too concerned at this point during post op, but he said this is something that should be monitored cause it could mean that the U-tube is not functioning properly. During the visit he had me try to clear (pop) my ears by pinching the nose. I am one of those that cannot do this unless I'm in a plane or changing altitude in the car. He used a special bulb to assist in clearing my ears. It worked, and now need to do this 10 times a day, but have been unsuccessful in finding this bulb, know as a Politizer bulb. Believe me I've searched the Internet over and can only find a company outside the US that sells these

things.

Anyways, in your response below you mentioned you had tubes put in to keep the U-tube open. How long after your c-toma was removed did you have this done? During my operation, the doctor also performed the reconstruction to fuse the hearing bones back as only a portion was removed. Therefore I don't have a followup surgery scheduled or need, but.....I'm feeling I may have to since the U-tube may not be functioning properly.

Thanks,

Nate....

Post-op questions

Hello,I had CWU surgery in March. I'm still feeling a little bit of pain and discomfort. There has been a lot of wax build up and I can feel my ear drum is retracted. Every time I equalize my ear, it's pulled back in immediately. I'm concerned it may be infected.Before I go rushing off to the doctor(s) (whom I've had difficulty dealing with), I was just wondering if this is just a normal part of the healing process?Colleen

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[Guest guest]

In mid-October, I found out I had cholesteatomas in both ears, Nov. 3rd

I had my surgery in my left ear. My doctor wants to do the right ear

as soon as possible, maybe in two more weeks. However, I can't hear

anything now in my left ear, but ringing in my head. The itching and

the ringing and the awful taste in my mouth is making me crazy. My

doctor isn't the most compassionate, I've tried to ask questions but

he's not answering. This process has happened so quick, so I ask; when

or will I ever get some hearing back in my left ear and is the ringing

and itching normal 3 weeks post-op? At this point, I am feeling very

insecure and I not sure I want to have the other surgery so soon

after. My doctor said I should be doing great with no complaints at

all and this would be a simple process. Is it that easy?

[Guest guest]

When in doubt get a 2nd opinion. Everyone is different on all the outcomes.....

Tom Hansen

From: amc_lawson <amc_lawson@...>Subject: post-op questionscholesteatoma Date: Saturday, November 29, 2008, 10:40 PM

In mid-October, I found out I had cholesteatomas in both ears, Nov. 3rd I had my surgery in my left ear. My doctor wants to do the right ear as soon as possible, maybe in two more weeks. However, I can't hear anything now in my left ear, but ringing in my head. The itching and the ringing and the awful taste in my mouth is making me crazy. My doctor isn't the most compassionate, I've tried to ask questions but he's not answering. This process has happened so quick, so I ask; when or will I ever get some hearing back in my left ear and is the ringing and itching normal 3 weeks post-op? At this point, I am feeling very insecure and I not sure I want to have the other surgery so soon after. My doctor said I should be doing great with no complaints at all and this would be a simple process. Is it that easy?

[Guest guest]

sorry you have to have both ears at one time - that in itself would would be tuff. did the doctor have to remove any of your hearing bones? the ringing and itching are very normal. you need to ask your doctor what his hearing is like in his ears - it is easy to give people advice but if you haven't personally experienced something before you really have no idea what it is like to deal with (such as the lose of hearing out of your ear). i personally would gain some hearing back in my operated ear before the doctor made me totally deaf. not sure how advanced your cholesteatomas are? i know you are not having an easy time but things will get better so hang in there. take care and keep us posted to your outcome.

From: amc_lawson <amc_lawson@...>cholesteatoma Sent: Saturday, November 29, 2008 10:40:53 PMSubject: post-op questions

In mid-October, I found out I had cholesteatomas in both ears, Nov. 3rd I had my surgery in my left ear. My doctor wants to do the right ear as soon as possible, maybe in two more weeks. However, I can't hear anything now in my left ear, but ringing in my head. The itching and the ringing and the awful taste in my mouth is making me crazy. My doctor isn't the most compassionate, I've tried to ask questions but he's not answering. This process has happened so quick, so I ask; when or will I ever get some hearing back in my left ear and is the ringing and itching normal 3 weeks post-op? At this point, I am feeling very insecure and I not sure I want to have the other surgery so soon after. My doctor said I should be doing great with no complaints at all and this would be a simple process. Is it that easy?

[Guest guest]

Thank you for your support. The doctor said the cyst in the left ear,

the ear just operated on, had eroded some of the hearing bones, it

had eroded a hole in the ear canal and through the mastoid bone and

was eroding away the bone protecting my brain. However, he said the

cyst was unusal because it was only beside my facial nerve and had

not weaken it any. I had a wall canal down and he also cut behind my

ear. He also reconstructed the ear canal and some hearing bones. This

is all so strange to me, I had never heard of cholesteatomas. The

doctor said that we had no time to wait for that ear. I guess I am

frustrated because he did not let me know what expect after surgery.

I woke up from surgery with alot of head pain and 2 days later I

could not handle the head pain any longer, and so the doctor told me

that I was just an anxious person and the pain was not caused by the

surgery. He gave me valium and sent me on my way. His attitude is the

same when I ask questions about any of the other things like hearing

loss, numbness, or itching. He did call a prescription for the

itching however I am allergic to Cypro and the pencillins. That was

the last time I tried to communicate with him and his office. I am

reluctant to call now, the miscommunication is obvious, that was the

second time he prescribed medication I am allergic to and no one

bothered to call me back, and still no answers.Do I need to be very

assertive with the doctor on my concerns even if it causes conflict?

-- In cholesteatoma , Captain Definder

<captaindefinder@...> wrote:

>

> sorry you have to have both ears at one time - that in itself would

would be tuff.  did the doctor have to remove any of your hearing

bones?  the ringing and itching are very normal.  you need to ask

your doctor what his hearing is like in his ears - it is easy to give

people advice but if you haven't personally experienced something

before you really have no idea what it is like to deal with (such as

the lose of hearing out of your ear).  i personally would gain some

hearing back in my operated ear before the doctor made me totally

deaf.  not sure how advanced your cholesteatomas are?  i know you are

not having an easy time but things will get better so hang in there. 

take care and keep us posted to your outcome.

>

>

>

>

> ________________________________

> From: amc_lawson <amc_lawson@...>

> cholesteatoma

> Sent: Saturday, November 29, 2008 10:40:53 PM

> Subject: post-op questions

>

>

> In mid-October, I found out I had cholesteatomas in both ears, Nov.

3rd

> I had my surgery in my left ear. My doctor wants to do the right

ear

> as soon as possible, maybe in two more weeks. However, I can't hear

> anything now in my left ear, but ringing in my head. The itching

and

> the ringing and the awful taste in my mouth is making me crazy. My

> doctor isn't the most compassionate, I've tried to ask questions

but

> he's not answering. This process has happened so quick, so I ask;

when

> or will I ever get some hearing back in my left ear and is the

ringing

> and itching normal 3 weeks post-op? At this point, I am feeling

very

> insecure and I not sure I want to have the other surgery so soon

> after. My doctor said I should be doing great with no complaints at

> all and this would be a simple process.. Is it that easy?

>

[Guest guest]

Hi -

Sorry to hear that you have to have surgery on both ears!! Surgery is

traumatic to the body and it needs time to heal. If your not feeling

like your ready for another surgery you should have the choice to wait

if it is medically feasible. You know your body best! It would also

give you time to see how your ear heals and if you have any problems.

It also sounds like your not comfortable with the surgeons

communication, maybe consider getting a second opinion?? Over the past

3 years we have seen 13 doctors for our son because of his many

ongoing medical concerns. They have all been well meaning, but we have

to do what's in the best interest of him and doctors have encouraged us

to get second and third opinions. Do not be afraid to do that!

I'm curious how the reconstruction was done on your ear canal - do you

know what the procedure was called? Can you get your ear wet or do you

have water precautions? Best wishes!!

amc_lawson wrote:

>

> Thank you for your support. The doctor said the cyst in the left ear,

> the ear just operated on, had eroded some of the hearing bones, it

> had eroded a hole in the ear canal and through the mastoid bone and

> was eroding away the bone protecting my brain. However, he said the

> cyst was unusal because it was only beside my facial nerve and had

> not weaken it any. I had a wall canal down and he also cut behind my

> ear. He also reconstructed the ear canal and some hearing bones. This

> is all so strange to me, I had never heard of cholesteatomas. The

> doctor said that we had no time to wait for that ear. I guess I am

> frustrated because he did not let me know what expect after surgery.

> I woke up from surgery with alot of head pain and 2 days later I

> could not handle the head pain any longer, and so the doctor told me

> that I was just an anxious person and the pain was not caused by the

> surgery. He gave me valium and sent me on my way. His attitude is the

> same when I ask questions about any of the other things like hearing

> loss, numbness, or itching. He did call a prescription for the

> itching however I am allergic to Cypro and the pencillins. That was

> the last time I tried to communicate with him and his office. I am

> reluctant to call now, the miscommunication is obvious, that was the

> second time he prescribed medication I am allergic to and no one

> bothered to call me back, and still no answers.Do I need to be very

> assertive with the doctor on my concerns even if it causes conflict?

>

> -- In cholesteatoma

> <mailto:cholesteatoma%40>, Captain Definder

> <captaindefinder@...> wrote:

> >

> > sorry you have to have both ears at one time - that in itself would

> would be tuff. did the doctor have to remove any of your hearing

> bones? the ringing and itching are very normal. you need to ask

> your doctor what his hearing is like in his ears - it is easy to give

> people advice but if you haven't personally experienced something

> before you really have no idea what it is like to deal with (such as

> the lose of hearing out of your ear). i personally would gain some

> hearing back in my operated ear before the doctor made me totally

> deaf. not sure how advanced your cholesteatomas are? i know you are

> not having an easy time but things will get better so hang in there.

> take care and keep us posted to your outcome.

> >

> >

> >

> >

> > ________________________________

> > From: amc_lawson <amc_lawson@...>

> > cholesteatoma

> <mailto:cholesteatoma%40>

> > Sent: Saturday, November 29, 2008 10:40:53 PM

> > Subject: post-op questions

> >

> >

> > In mid-October, I found out I had cholesteatomas in both ears, Nov.

> 3rd

> > I had my surgery in my left ear. My doctor wants to do the right

> ear

> > as soon as possible, maybe in two more weeks. However, I can't hear

> > anything now in my left ear, but ringing in my head. The itching

> and

> > the ringing and the awful taste in my mouth is making me crazy. My

> > doctor isn't the most compassionate, I've tried to ask questions

> but

> > he's not answering. This process has happened so quick, so I ask;

> when

> > or will I ever get some hearing back in my left ear and is the

> ringing

> > and itching normal 3 weeks post-op? At this point, I am feeling

> very

> > insecure and I not sure I want to have the other surgery so soon

> > after. My doctor said I should be doing great with no complaints at

> > all and this would be a simple process.. Is it that easy?

> >

>

>

[Guest guest]

1. I don't believe there's a recommended way to sleep. This will

likely be soreness driven. You'll be using sterile cotton balls to

absorb any seepage, but they can fall out so I'd recommend you use

pillowcases that you don't care about. Even if you start off on

your non-operated ear, you can easily roll over in your sleep. The

first night you're likely to be a little wacked and won't really

care which way you sleep.

2. On day two start taking long slow walks. Drink lots of water

unless some other ailment prevents you from doing drinking lots of

fluids.

3. This one depends. If you have any kind of ossicular (hearing

bone) reconstruction done in the first operation (I did), then there

will be restrictions on sneezing and nose blowing. The doctor won't

want you to stifle your sneezes, so warn the family/coworkers/etc.

and do your best to turn your back. They'll also say no nose

blowing - most annoying - and both of these last for six weeks. I

don't remember anything about coughs, but I suppose they'd tell you

not to stifle them either. However, if they hold off on

reconstruction there may not be any - anyone know?

4. Fluids are really really really really important. Don't be dumb

and get dehydrated like I did. See what your doc says about 8

ounces an hour for each hour you're awake. My GP suggested that and

my surgeon thought that was great/funny - and yes, that conversation

rapidly decayed into bathroom humor.

5. I found that the more that I tried to chew the less sore I was,

but yes, steak is a bit much the first two days. BRAT = Bananas,

Rice, Applesauce, Toast ought to get you by to day two or three.

Efficiency nuts can put the applesauce ON the toast, eh?! I would

easily tackle an orange roughy fillet on day three though.

Honestly, the anxiety is the worst thing. Best advice = stock up on

some movies you've been wanting to see. I found reading to be too

exhausting for the better part of a week.

All the best,

Matt

On 10/1/2010 2:02 PM, mproulx0917@... wrote:

Hi all.

I was a member of the site last year when I was first

diagnosed with a c-tome in my right ear. I dropped off, as

I found the horror and worse case stories were freaking me

out. I have since realized that my surgery (6 days from

now at Sunnybrook with Dr. Lin) will be what it will be

and I just need to prepare. With that in mind, here are my

specific questions:

1. Is there a recommended way to sleep? Operated ear down,

neutral or up? THinking of drainage here.

2. Any tips on how gradually keep your energy

(spirits)improving? I find the more you sit around, the

more lethargic and worse you feel. Maybe try some light

acitivity 2 days post depending on pain etc?

3. Any tips on protecting the ear when coughing, sneezing

etc?

4. Are fluids the key? water, g-ade, popsicles etc?

5. Assuming chomping down on steak and other big mouth

meals will be a challenge, any tips on nutrient rich

'small' food?

Thoughts and prayers to all who are suffering and facing

an uphill climb. Special prayers to our children who must

endure what is surely an unfair deal!

--

[Guest guest]

Excellent and quick response Matt...much appreciated.

My c-toma has only been there about 1.5 years so hopefully the amount of damage

and invasiveness has been minimal.

THanks

--- In cholesteatoma , "

[Guest guest]

I can only say what has worked best for me. I usually sleep with my head propped

up the first 4 days after surgery (like a sitting position). I drink tons of

water and always have saltines and peppermint candies on hand for nausea. This

last surgery (2 wks ago) the pain lasted 3 days the first being the worst for

me. I bought an infant bean pillow because my head fits into it perfectly and my

ear fits the hole so that my operated ear was elevated from my pillow some...I

didnt lay directly on that side because of the pain and achy feeling it left in

the mornings. I slowly started doing things around the house...opening all the

blinds, sweeping, light things until my strength was up. It took me almost 2 wks

to gain my strength back. I cannot say that surgery was a horrible experience

for me. I felt worse prior to surgery. I was relieved after my surgeries because

the pain was gone as was most of the infection. I believe everyone is different

and will recover different. This last surgery I mowed our yard just 6 days post

op. I have never felt better in my life. Hope your surgery goes well and you

have a quick recovery.

Post-Op Questions

Hi all.

I was a member of the site last year when I was first diagnosed with a c-tome in

my right ear. I dropped off, as I found the horror and worse case stories were

freaking me out. I have since realized that my surgery (6 days from now at

Sunnybrook with Dr. Lin) will be what it will be and I just need to prepare.

With that in mind, here are my specific questions:

1. Is there a recommended way to sleep? Operated ear down, neutral or up?

THinking of drainage here.

2. Any tips on how gradually keep your energy (spirits)improving? I find the

more you sit around, the more lethargic and worse you feel. Maybe try some

light acitivity 2 days post depending on pain etc?

3. Any tips on protecting the ear when coughing, sneezing etc?

4. Are fluids the key? water, g-ade, popsicles etc?

5. Assuming chomping down on steak and other big mouth meals will be a

challenge, any tips on nutrient rich 'small' food?

Thoughts and prayers to all who are suffering and facing an uphill climb.

Special prayers to our children who must endure what is surely an unfair deal!

[Guest guest]

Wow Matt!! You said it all!!

-----Original Message-----

Date: Friday, October 01, 2010 11:44:12 am

cholesteatoma

From: "

[Guest guest]

Many thanks for the info and best wishes. I will be asking for an anti-emetic in

my anesthetic as I always vomit after being under. With a wife who is much

tougher than me and two small kids, I suspect I had better expedite my return to

regular duty sooner than later :-)

>

> I can only say what has worked best for me. I usually sleep with my head

propped up the first 4 days after surgery (like a sitting position). I drink

tons of water and always have saltines and peppermint candies on hand for

nausea. This last surgery (2 wks ago) the pain lasted 3 days the first being the

worst for me. I bought an infant bean pillow because my head fits into it

perfectly and my ear fits the hole so that my operated ear was elevated from my

pillow some...I didnt lay directly on that side because of the pain and achy

feeling it left in the mornings. I slowly started doing things around the

house...opening all the blinds, sweeping, light things until my strength was up.

It took me almost 2 wks to gain my strength back. I cannot say that surgery was

a horrible experience for me. I felt worse prior to surgery. I was relieved

after my surgeries because the pain was gone as was most of the infection. I

believe everyone is different and will recover different. This last surgery I

mowed our yard just 6 days post op. I have never felt better in my life. Hope

your surgery goes well and you have a quick recovery.

> Post-Op Questions

>

> Hi all.

>

> I was a member of the site last year when I was first diagnosed with a c-tome

in my right ear. I dropped off, as I found the horror and worse case stories

were freaking me out. I have since realized that my surgery (6 days from now at

Sunnybrook with Dr. Lin) will be what it will be and I just need to prepare.

With that in mind, here are my specific questions:

>

> 1. Is there a recommended way to sleep? Operated ear down, neutral or up?

THinking of drainage here.

>

> 2. Any tips on how gradually keep your energy (spirits)improving? I find the

more you sit around, the more lethargic and worse you feel. Maybe try some

light acitivity 2 days post depending on pain etc?

>

> 3. Any tips on protecting the ear when coughing, sneezing etc?

>

> 4. Are fluids the key? water, g-ade, popsicles etc?

>

> 5. Assuming chomping down on steak and other big mouth meals will be a

challenge, any tips on nutrient rich 'small' food?

>

> Thoughts and prayers to all who are suffering and facing an uphill climb.

Special prayers to our children who must endure what is surely an unfair deal!

>