post op

[Guest guest]

-

I agree with the other that this is the place to complain. We're here

to listen as well as boost each other up. What your ENT says sounds

pretty in line to me. I've had similar things said to me, although

over a period of time.

I'm now at the point where I have no stapes so the only hearing I will

ever have is via a hearing aid which is still down the road a ways.

We have to get the ear under control and also save the money. I can

understand being frustrated with the possibility of not being able to

hear. It was hard for me at first, but I'm used to it now. The

hardest thing is when I'm in a place with lots of background noise,

that really makes it hard to hear what people are saying.

Please keep us posted on how you are doing. We really do care.

-

> Hello all. Audrey, I hope it all went well for you and that you have

> a great recovery.

>

> I had my post-op appt this morning. No suctioning, by the way. He

> says it's still too delicate for that & that he'll suction when I go

> back in a month. He said a lot of it would just dissolve. I did ask

> him where it would drain when it dissolves, which someone was asking

> about not long ago. He said it will drain in 2 places, out of your

> ear and into your throat, and that while this internal drainage might

> irritate the throat a little bit (like post-nasal drip) it has to be

> so thin in order to pass out through the eustachian tube that it is

> generally not a problem.

>

> It wasn't the greatest ENT appt I've ever had. He described the c-

> toma again as massive & said that as soon as he made his incision he

> found the mastoid full of cholesteatoma. He tells me the mastoid was

> destroyed but didn't think this would have any practical implications

> for me. Also destroyed were the malleus/hammer & incus/anvil (my last

> ENT told me the anvil was destroyed in my last op, this one says the

> old ENT never wrote that on my op report & that the incus was there,

> just eaten up with c-toma). The stapes is okay, but he said he was

> unable to get all the c-toma off of it because it is already damaged

> from previous ops & it is backing up onto the inner ear. He does not

> want any trouble there, so he wants to go back in again in 4 - 6

> months, when the remaining c-toma cells will have gathered themselves

> up into a little ball, & just " pop it out " .

>

> He will also probably put in a tube to deal with the faulty

> eustachian tube & try to restore some hearing into that ear. Because

> it is gone now, he tells me. I could only hear before because the c-

> toma was acting as some sort of bridge. It will make no difference

> when the packing comes out, it's gone. He is optimistic that he will

> be able to get some hearing back, since I still have a stapes

> (without it he said you are basically looking at a dead ear as far as

> hearing goes).

>

> I'm sorry, guys, to be going on like this but until last week I could

> still hear out of that ear. I had some loss in the high & low ranges

> & trouble localizing sound but I could hear. I don't mean to whine, I

> have a perfectly good left ear after all & the prospect of

> restoration, but this is depressing the hell out of me. I don't like

> to post too negatively about the whole c-toma thing, because I don't

> want to scare anyone or over-hype it or anything, but it really is a

> nasty, ugly disease sometimes. I feel like every time I go under that

> knife I lose something more but if I don't go back under it I will

> lose everything.

>

> Please let me know if you have any thoughts on how my ENT's

> explanation sounds to you. He sounds reasonable to me, but I know

> there's a lot of cholesteatoma experience & knowledge out there on

> this list so if something strikes you please share. Thanks for

> listening.

>

>

[Guest guest]

In a message dated 05/30/2002 8:12:47 PM Pacific Daylight Time, rlockw1092@... writes:

I'm sorry, guys, to be going on like this but until last week I could still hear out of that ear. I had some loss in the high & low ranges & trouble localizing sound but I could hear. I don't mean to whine, I have a perfectly good left ear after all & the prospect of restoration, but this is depressing the hell out of me

{{{{}}]} Sending big hugs your way. I'm so sorry you aren't hearing the way you were hoping to after your surgery. Sometimes it takes a while.I'll say prayers that this is temporary and that it will gradually come back. Thanks for letting us know how it went.

(Alyssa's mom)

[Guest guest]

In a message dated 06/01/2002 2:57:32 PM Eastern Daylight Time, psmorris@... writes:

Even with thorough conductive deafness any sound coming from within you, like your own voice or eating, will be quite audible and take precedence over any sound that has to come to you via the air.

Thanks for sharing that, Phil. I have heard sounds (i.e., moving packing) inside the ear & was wondering about it.

As to the memory loss question, I haven't heard of that happening but as Phil said, it could be related to one of the meds in the anesthesia cocktail. It could also be related to any prescription painkillers you were on, making you a little fuzzy. It is also a common symptom associated with stress - i.e., maybe you were distracted/preoccupied by the whole surgery deal.

Audrey, I hope all went well and you are just lying low and resting up after surgery. God Bless.

[Guest guest]

,

I am sorry to hear that you cannot hear. My main symptom that led to the discovery of c-toma in my rt ear, was my severely decreased hearing loss in that ear. If I had not investigated it, I would still be unaware of its presence. Unlike many here though, I seem to have gotten some hearing back. I have not had an audiogram yet since my surgery in early May, but I can now hear a very faint dial tone. I could not hear anything at all before even amplified sounds, except for the tests done by the audiologist. I had in the range of 70 dB loss. It will be interesting to see what it is now. The strange thing is that I have no ossicles left. I can't understand why I am able to hear a bit.

Perhaps after a few weeks as the swelling goes down, and healing occurs you may get some of your hearing back. But from the posts that I have read, it is really not unusual for hearing loss after removal of a c-toma.

Lynn

Re: Post Op

In a message dated 05/30/2002 8:12:47 PM Pacific Daylight Time, rlockw1092@... writes:

I'm sorry, guys, to be going on like this but until last week I could still hear out of that ear. I had some loss in the high & low ranges & trouble localizing sound but I could hear. I don't mean to whine, I have a perfectly good left ear after all & the prospect of restoration, but this is depressing the hell out of me{{{{}}]} Sending big hugs your way. I'm so sorry you aren't hearing the way you were hoping to after your surgery. Sometimes it takes a while.I'll say prayers that this is temporary and that it will gradually come back. Thanks for letting us know how it went. (Alyssa's mom)

[Guest guest]

Lynn

If all the ossicles are completely destroyed and the cochlea is working you may still hear something. That's because the the skull itself conducts sound. This sound may be indistinct and distorted but over time you can become attuned to it. Even with thorough conductive deafness any sound coming from within you, like your own voice or eating, will be quite audible and take precedence over any sound that has to come to you via the air.

I haven't heard of memory loss before but, as a remote possibility, I wondered if you may have been given some kind of strong post-operative anti-inflammatory drug. A lot of those have lots of weird side effects

Regards

Phil

[Guest guest]

Thank you for your reply Phil,

I think my hearing is at least 2x better than before, I set up my stereo headset on the computer and tested it, by lowering the volume on my good ear side and raising it on my affected ear side, and there is a noticeable difference. I can actually hear pretty well. The dial tone on the phone is very faint, almost imperceptible, but I am amazed at what I do hear. I guess that is one of the benifits of having this growth out.

As far as my memory loss, it has been an annoyance. I had surgery unrelated to my ear, 2 1/2 years ago, and then had surgery on my ear in Feb and again in May. I think this has affected my memory somewhat. I did not receive any anti inflammatory drugs post surgery as far as I know. I do have increased tinitus though since the feb surgery. It is constant, but only mildly irritating. If there is other noise, I don't notice it as much.

Thanks for you input.

Lynn

Re: Post Op

Lynn

If all the ossicles are completely destroyed and the cochlea is working you may still hear something. That's because the the skull itself conducts sound. This sound may be indistinct and distorted but over time you can become attuned to it. Even with thorough conductive deafness any sound coming from within you, like your own voice or eating, will be quite audible and take precedence over any sound that has to come to you via the air.

I haven't heard of memory loss before but, as a remote possibility, I wondered if you may have been given some kind of strong post-operative anti-inflammatory drug. A lot of those have lots of weird side effects

Regards

Phil

[Guest guest]

Awww, Ingrid, I understand what you mean - I am suffering at the moment,

from a perforation to my right ear, and have recently had the implant

surgery for BAHA, again on my right side. Ideally, to allow my ear to

drain, I should like on my right, but the tenderness from the surgery

prevents this.

Ohhh well, hope time soon passes, I hope it all heals and we can soon find

that painfree state we naturally all take for granted.

Kazz

xx

> Post OP

>

> I am about 16 hours post op for surgery on my left ear again (3rd time

> this year). I am in alot of pain. I have a full cast on my right arm from

> surgery 2 weeks ago. Between the right arm and the left ear, I cannot seem

> to find a comfortable position to sleep in. Maybe I'll get my husband to

> put up a hammock in the family room. (LOL). Actually, I just took a pain

> pill and am waiting for it to kick in.

[Guest guest]

I agree!!!!

Ingrid

> Post OP

>

> I am about 16 hours post op for surgery on my left ear again (3rd

> time this year). I am in alot of pain. I have a full cast on my right arm

> from surgery 2 weeks ago. Between the right arm and the left ear, I cannot

> seem to find a comfortable position to sleep in. Maybe I'll get my husband

> to put up a hammock in the family room. (LOL). Actually, I just took a

> pain pill and am waiting for it to kick in.

[Guest guest]

no way to stop ctoma coming back.........if it happens, surg is most likely the result.

pain pills......codeine, percoset......will cause constipation......so in a way you have to pick your poison.......constipation or ear pain........

take care

post op

I had my surgery last Wednesday. I feel ok. The ctoma was a little worse than they thought. It was wrapped around part of my bone and that had to be removed. I now have a prosthisis. I don't know what it is made of. They also were able to see my brain after removal so I consider myself very lucky. My post-op concerns are simple but I know that everyone experiences different post-op conditions and I do not know exactly what I should be looking for. My doctor said not to be concerned unless there is a strange discharge (yellow-greenish) and there is an odor. I thankfully do not have anything like that. I do have some pain (like an earache), dizziness, fatigue, and, not that this is related, but constipation. I have two young children and feel somewhat helpless because my doctor said not to pick them or any heavy objects up for about a month. My 2 year old understands somewhat, but my 14 month old is having a little bit of a problem. My husband is wonderful but worried. I worry about another surgery because, as I read the group, it seems like more surgery is likely. My doctor said that as long as I keep up with having my ears checked regularly, that I will not need surgery if a ctoma was to return. I was just wondering if anyone had some feedback. Thank you so much

[Guest guest]

My son always had a hard time after each surgery. He barely woke up

for the first week after each surgery. His surgeries were long- the

first 9 hours and the other 2 7 hours each. He tried to go back to

school after 10 days for a whole day which I advised against. But

since parents aren't basically stupid he didn't listen. The teachers

noticed that he was not keeping up--very fatigued and sent him home.

He missed the next day and then went back for a 1/2 day after thatfor

the rest of the week. He knew better after the next 2 surgeries and

went back for 1/2 days after the first 10 days. Everyone is different

and handles the anesthesia differently which is a big part of the

after affects. Constipation could be part of that as well as not

enough water. I imagine it doesn't feel real great to drink alot of

water but give it a try. I can't remember if he had problems with

constipation but then he didn't eat anything for quiet some time

after each surgery. He did become dehydrated after the third surgery

and spent several hours in the ER with IV's. Dehydration can make

you dizzy but I would guess that's just your ear trying to recover.

It can also make you constipated and cause severe muscle cramps.

It's got to be really hard with the young kids. Maybe you could the

youngest to crawl up on your lap while you're sitting up in bed and

be satisfied with that.

Based on what you say the doctor said about more surgery I assume you

had a canal wall down procedure. I believe my son's doctor said

after his cwd that if the c-toma returned it would be an in office

procedure but I think others on the website said it is not--it's

still major surgery. I haven't asked our doc about it since I'm

hoping we never have to cross that bridge again.

I wish you much luck and a speedier recovery!

> I had my surgery last Wednesday. I feel ok. The ctoma was a

little

> worse than they thought. It was wrapped around part of my bone and

> that had to be removed. I now have a prosthisis. I don't know

what

> it is made of. They also were able to see my brain after removal

so I

> consider myself very lucky. My post-op concerns are simple but I

know

> that everyone experiences different post-op conditions and I do not

> know exactly what I should be looking for. My doctor said not to

be

> concerned unless there is a strange discharge (yellow-greenish) and

> there is an odor. I thankfully do not have anything like that. I

do

> have some pain (like an earache), dizziness, fatigue, and, not that

> this is related, but constipation. I have two young children and

feel

> somewhat helpless because my doctor said not to pick them or any

heavy

> objects up for about a month. My 2 year old understands somewhat,

but

> my 14 month old is having a little bit of a problem. My husband is

> wonderful but worried. I worry about another surgery because, as I

> read the group, it seems like more surgery is likely. My doctor

said

> that as long as I keep up with having my ears checked regularly,

that

> I will not need surgery if a ctoma was to return. I was just

> wondering if anyone had some feedback. Thank you so much

[Guest guest]

glad u are feeling so great! yes constipation from pain meds is common,

lots of water, roughage and walking will help. do not let it go to long, as

u can increase pressure in your ear from straining. if c-toma comes back

the only way to get rid of it is surg, so i do not know what your doc was

talking about.

>From: " meseney " <meseney@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: post op

>Date: Wed, 05 Oct 2005 02:48:57 -0000

>

>I had my surgery last Wednesday. I feel ok. The ctoma was a little

>worse than they thought. It was wrapped around part of my bone and

>that had to be removed. I now have a prosthisis. I don't know what

>it is made of. They also were able to see my brain after removal so I

>consider myself very lucky. My post-op concerns are simple but I know

>that everyone experiences different post-op conditions and I do not

>know exactly what I should be looking for. My doctor said not to be

>concerned unless there is a strange discharge (yellow-greenish) and

>there is an odor. I thankfully do not have anything like that. I do

>have some pain (like an earache), dizziness, fatigue, and, not that

>this is related, but constipation. I have two young children and feel

>somewhat helpless because my doctor said not to pick them or any heavy

>objects up for about a month. My 2 year old understands somewhat, but

>my 14 month old is having a little bit of a problem. My husband is

>wonderful but worried. I worry about another surgery because, as I

>read the group, it seems like more surgery is likely. My doctor said

>that as long as I keep up with having my ears checked regularly, that

>I will not need surgery if a ctoma was to return. I was just

>wondering if anyone had some feedback. Thank you so much

>

>

>

>

>

>

[Guest guest]

The constipation may be related. Somtimes the pain medication, especially if it contains codene, will cause it. I have had several surgieries for various problems, not just the ear, and everytime I come out of it, I am constipated for days.

If you had a wall down your chances of having to have another surgery are slim to nil. My first surgery was a wall up and 18 months later they did a wall down because the nasty little thing came back with a vengeance. Visits for the last 2 years to the doctor have been frequent because of the time it takes to heal once they rip everything out of ear. It took about 2 years for the healing to complete after my wall down.

I would try to disregard most of the horror stories you read here, people panic, get upset and scared and what seems like a no biggie to some, is a major catastrophe to others. Try not to panic and if you have concerns, talk to your doctor and insist on answers. Most of all, know that you are not the only one with this and most go on living a happy life once they make a few adjustments.

Dave L.meseney <meseney@...> wrote:

I had my surgery last Wednesday. I feel ok. The ctoma was a little worse than they thought. It was wrapped around part of my bone and that had to be removed. I now have a prosthisis. I don't know what it is made of. They also were able to see my brain after removal so I consider myself very lucky. My post-op concerns are simple but I know that everyone experiences different post-op conditions and I do not know exactly what I should be looking for. My doctor said not to be concerned unless there is a strange discharge (yellow-greenish) and there is an odor. I thankfully do not have anything like that. I do have some pain (like an earache), dizziness, fatigue, and, not that this is related, but constipation. I have two young children and feel somewhat helpless because my

doctor said not to pick them or any heavy objects up for about a month. My 2 year old understands somewhat, but my 14 month old is having a little bit of a problem. My husband is wonderful but worried. I worry about another surgery because, as I read the group, it seems like more surgery is likely. My doctor said that as long as I keep up with having my ears checked regularly, that I will not need surgery if a ctoma was to return. I was just wondering if anyone had some feedback. Thank you so much

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Thanks for the reassurance. I see my doctor on Saturday and will

insist on answers. I've been feeling down, probably just self-

pity. I need to rise above that. Two questions. I'm 39, had ear

problems mostly when I was little. I'm sure this is aquired.

Should I be concerned about my children? So far, my daughter, 2 1/2

has not had a single ear infection. My son, 14months, has had one.

My doctor couldn't tell me when this all began with me. Is it

related to my childhood ear problems or not? Any feedback would be

greatly appreciated.

> I had my surgery last Wednesday. I feel ok. The ctoma was a

little

> worse than they thought. It was wrapped around part of my bone

and

> that had to be removed. I now have a prosthisis. I don't know

what

> it is made of. They also were able to see my brain after removal

so I

> consider myself very lucky. My post-op concerns are simple but I

know

> that everyone experiences different post-op conditions and I do

not

> know exactly what I should be looking for. My doctor said not to

be

> concerned unless there is a strange discharge (yellow-greenish)

and

> there is an odor. I thankfully do not have anything like that. I

do

> have some pain (like an earache), dizziness, fatigue, and, not

that

> this is related, but constipation. I have two young children and

feel

> somewhat helpless because my doctor said not to pick them or any

heavy

> objects up for about a month. My 2 year old understands somewhat,

but

> my 14 month old is having a little bit of a problem. My husband

is

> wonderful but worried. I worry about another surgery because, as

I

> read the group, it seems like more surgery is likely. My doctor

said

> that as long as I keep up with having my ears checked regularly,

that

> I will not need surgery if a ctoma was to return. I was just

> wondering if anyone had some feedback. Thank you so much

>

>

>

>

>

>

>

>

>

[Guest guest]

I am 52, they found the c-toma when I was 49. My hearing was always exceptional and I remember only a few times that I had ear infections when little. However, I do remember having dizzy spells in my late 30s and an ear infection when I was in my lower 40s and blowing off the medication before it really healed. I have never heard of it being genetic. My kids didn't have too many problems when they were young.

I know the feeling about being down, I was there a few times myself after the first surgery, and really down after they found out that it came back. After the second surgery I was less down and more happy that I could be certain that I wouldn't have to go through another one. At least not in my right ear. There will always be the slight worry that I could get one in my good ear but I can't worry about something that I have no control over and if that should happen, I know I will probably go through the same feelings all over again.

Cheer up, if all else fails, try my method, "fake it till you make it" count your blessings, hum a happy tune and smile. It won't be long until you will have convinced yourself that things will be just fine or at least they are not worth the effort it takes to worry about them.

meseney <meseney@...> wrote:

Thanks for the reassurance. I see my doctor on Saturday and will insist on answers. I've been feeling down, probably just self-pity. I need to rise above that. Two questions. I'm 39, had ear problems mostly when I was little. I'm sure this is aquired. Should I be concerned about my children? So far, my daughter, 2 1/2 has not had a single ear infection. My son, 14months, has had one. My doctor couldn't tell me when this all began with me. Is it related to my childhood ear problems or not? Any feedback would be greatly appreciated.> I had my surgery last Wednesday. I feel ok. The ctoma was a little > worse than they thought. It was wrapped around part of my bone and > that had to be removed. I now have a prosthisis. I don't know what > it is made of. They also were able to see my brain after removal so I > consider myself very lucky. My post-op concerns are simple but I know > that everyone experiences different post-op conditions and I do not > know exactly what I should be looking for. My doctor said not to be > concerned unless there is a strange discharge (yellow-greenish) and > there is an odor. I thankfully do not have anything like that. I do > have some pain (like an earache), dizziness, fatigue, and, not that > this is related, but

constipation. I have two young children and feel > somewhat helpless because my doctor said not to pick them or any heavy > objects up for about a month. My 2 year old understands somewhat, but > my 14 month old is having a little bit of a problem. My husband is > wonderful but worried. I worry about another surgery because, as I > read the group, it seems like more surgery is likely. My doctor said > that as long as I keep up with having my ears checked regularly, that > I will not need surgery if a ctoma was to return. I was just > wondering if anyone had some feedback. Thank you so much> > > > > > > > >

[Guest guest]

had my op on thu back home aparently quite invasive growth and had to

have a bone removed he managed to just do the atticotomy feel

emotional is that bacause i'm a girl though! tinnitus still there and

my face swollen a bit on that side and of course crap hearing, the

after care in the hospital is not good they want the beds and sent

home quickly this is exeter in england. now pain and tired .