Re: 's Surgery ... Thanks all

[Guest guest]

Good morning Diane. I found that the healing process for my daughter Chelsy took about two weeks - but remember Chels was 4 1/2 when she had the surgery. She was quiet for about 3-4 days and slept a lot (she normally was a chatter box). Her pre-surgery days were worse. She chewed her finger nails until they bled - her way of dealing with the stuff. (In the weeks post-surgery, at the age of 5, she started kindergarten adjusting to her hearing loss and having to wear a hearing aid. She was no longer a chatterbox all the time - in school she rarely talked but finally opened up in first grade when she became a chatterbox plus!) Her doctor talked reconstruction surgery at all of Chelsy's yearly check-ups - her last one this past May, he put off reconstructive surgery for another year and a half. So may not have the reconstructive surgery right away.

God Bless.

Caryn L. Gleixner Tabet DiVito & Rothstein LLC (312) 762-9473

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

-----Original Message-----From: Dianne McAllister [mailto:diannemcal@...]Sent: Thursday, September 05, 2002 9:05 AMcholesteatoma Subject: 's Surgery ... Thanks all

Hello Again,

I pray this finds everybody doing well this morning ...

Well, we're a couple of days out and still doing fine all in all. I wanted to thank Phil, Lynn, Caryn, & Michele for their kind words ... I read some of your messages to . I think she is finally getting it that I have been a part of this group for a while and it has been a great source of information and comfort for me. She may end up jumping on line before too long! I keep telling her that if she has any questions she is welcome to get on and ask and that you all will be more than happy to talk to her ... She is starting to have some questions, now. She keeps saying it feels like her ear "is falling apart". Any thoughts on this? Is it just the healing process? She is afraid to move her face to smile or change her facial expressions because when she does she says it makes her feel like her ear is just going to crumble. (That has to be a very scary feeling.) She is feeling "drunk" so I guess her equilibrium is being thrown a bit and in general felt pretty "icky" most of the night last night. She did end up needing pain medication three times and I woke up to her crawling in bed with me. It's been a LONG time since that happened! She had a lot on her mind last night ...

We talked about the fact that reconstruction had not been done. I thought she understood that, she didn't. She was a bit rattled by the thought of having to go through another procedure next year but I didn't want to keep it from her that her hearing wasn't necessarily going to improve. When she heard us say that the eardrum had been repaired, she assumed the reconstruction had been handled as well. She did ask if next year's surgery would be the same deal, if they had to open everything back up and I really didn't know. When they go back in for another look ... do they have to cut again or can it be done through the ear canal?

Also, she says the inside of her ear is itching like crazy and it is driving her nuts ... is this common? It particularly bothers her after I put the drops in. I wouldn't imagine there isn't a thing she can do about this one except tough it out (kind of like everything else associated with this), just curious if everybody has this and if it lasts a long time.

So, it's another day! She's still doing pretty well, just a little overwhelmed. Very emotional, which is highly unusual for . Any comments are appreciated!

Blessings!

Dianne

[Guest guest]

Hi Caryn,

I can't even imagine going through this with such a small child ... it was hard enough going through it with a teen ... and she looked pretty damned small being wheeled into surgery! seems pretty restless, not sleeping enough, a bit pensive, when we first took the bandages off her ear was pretty flat, but it is sticking out more now and it seems to be hurting more now. She was expecting to be up and running in a day or two, just would not hear of anything else. This is the down side of her not wanting any more information than she absolutely had to have prior to the surgery. As for reconstruction, barring a regrowth of the c-toma, her doctor sounded pretty definite that we would be doing reconstruction next summer. is fully grown, so we're not needing to wait for her ears to "mature". I know she has virtually no hearing in that right ear and nobody has discussed any kind of a hearing aid with us, so I am assuming it is fairly high on the priority list to get her hearing back up to snuff ... or at least improved. I'm kind of hoping all of this can be taken care of while she is still living at home, on our insurance ... because as soon as she is able, she's going to "fly the coop" (she is my wild child!) and we won't be able to keep her on our insurance if she doesn't stay in school once she turns 18. So, I for one pray that they can do the reconstruction next summer, because unless my girl changes a whole lot ... she's going to want to try her wings after her 18th Birthday and I don't know how long we'll be able to float her on our insurance. Hopefully we can keep her in school for a long time and keep her on our insurance throughout, but right now, she has other things in mind ... she's a little too much like I was at that age! (My mom got her wish!!!)

Thanks for writing. I pray that things continue to go well for you and Chelsy. I'll bet she's a really amazing little girl ...

God Bless,

Dianne

Caryn Gleixner wrote:

Good morning Diane. I found that the healing process for my daughter Chelsy took about two weeks - but remember Chels was 4 1/2 when she had the surgery. She was quiet for about 3-4 days and slept a lot (she normally was a chatter box). Her pre-surgery days were worse. She chewed her finger nails until they bled - her way of dealing with the stuff. (In the weeks post-surgery, at the age of 5, she started kindergarten adjusting to her hearing loss and having to wear a hearing aid. She was no longer a chatterbox all the time - in school she rarely talked but finally opened up in first grade when she became a chatterbox plus!) Her doctor talked reconstruction surgery at all of Chelsy's yearly check-ups - her last one this past May, he put off reconstructive surgery for another year and a half. So may not have the reconstructive surgery right away.

God Bless.

Caryn L. Gleixner Tabet DiVito & Rothstein LLC (312) 762-9473

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

-----Original Message-----From: Dianne McAllister [mailto:diannemcal@...]Sent: Thursday, September 05, 2002 9:05 AMcholesteatoma Subject: 's Surgery ... Thanks all

Hello Again,

I pray this finds everybody doing well this morning ...

Well, we're a couple of days out and still doing fine all in all. I wanted to thank Phil, Lynn, Caryn, & Michele for their kind words ... I read some of your messages to . I think she is finally getting it that I have been a part of this group for a while and it has been a great source of information and comfort for me. She may end up jumping on line before too long! I keep telling her that if she has any questions she is welcome to get on and ask and that you all will be more than happy to talk to her ... She is starting to have some questions, now. She keeps saying it feels like her ear "is falling apart". Any thoughts on this? Is it just the healing process? She is afraid to move her face to smile or change her facial expressions because when she does she says it makes her feel like her ear is just going to crumble. (That has to be a very scary feeling.) She is feeling "drunk" so I guess her equilibrium is being thrown a bit and in general felt pretty "icky" most of the night last night. She did end up needing pain medication three times and I woke up to her crawling in bed with me. It's been a LONG time since that happened! She had a lot on her mind last night ...

We talked about the fact that reconstruction had not been done. I thought she understood that, she didn't. She was a bit rattled by the thought of having to go through another procedure next year but I didn't want to keep it from her that her hearing wasn't necessarily going to improve. When she heard us say that the eardrum had been repaired, she assumed the reconstruction had been handled as well. She did ask if next year's surgery would be the same deal, if they had to open everything back up and I really didn't know. When they go back in for another look ... do they have to cut again or can it be done through the ear canal?

Also, she says the inside of her ear is itching like crazy and it is driving her nuts ... is this common? It particularly bothers her after I put the drops in. I wouldn't imagine there isn't a thing she can do about this one except tough it out (kind of like everything else associated with this), just curious if everybody has this and if it lasts a long time.

So, it's another day! She's still doing pretty well, just a little overwhelmed. Very emotional, which is highly unusual for . Any comments are appreciated!

Blessings!

Dianne

[Guest guest]

Hi Diane (and , if you come online),

I was happy to read of 's progress. At least she is talking about it and hopefully we'll get her to participate here soon. Her ear won't fall apart! even it it feels that way. Sometimes it can feel stiff or full, but it won't crumble. She still has packing in there, so she may be hearing sounds etc... Lots of people experience wooziness after surgery, hopefully that will go away soon. I found the post op period uncomfortable (but not exceedingly so, and not extremely painful), and I used the meds I was given for discomfort mostly at nite, cause that is when I noticed it most... I took gravol too, cause it helped me sleep.

>and I woke up to her crawling in bed with me. It's been a LONG time since that happened! She had a lot on her mind last night ...... there are some plusses :-)

>When they go back in for another look ... do they have to cut again or can it be done through the ear canal?

It sounds like had a Canal Wall Up, I am not sure if they go in through the back of the ear or if they do it transcanal. I am sure your doctor can tell you that. They may even start by going transcanal, but end up going through the back of the ear if any c-toma is found.

I get itching in my ear occasionally... It would be nice to use a "bottle brush" to relieve it, but I think that is normal and should decrease. Emotions can change I think after a general anaesthetic. Everyone is different and reactions are different, but that should settle down after a while. Someone told me it takes 1 month for every hour of anasthetic to get back to normal.

Diane, I hope you are also taking time for yourself. You probably had a tougher time through all this than had. Stay in touch.

Lynn

[Guest guest]

test.

[Guest guest]

Hi Dianne,

When I had my surgery my ear felt like it was sliding down or worse yet,

like it didn't belong to me. After quite a while it only felt like that

occasionally. And now only once in a very long while. It will get better.

The second look is usually done through the ear canal and for me after the

BIG surgery it was a piece of cake. It was done on a Friday and I was back

at work on Monday - not even tired!

Yep, itching. Been there, suffered that. Not much you can do, it's part of

the healing process.

I'm glad she's doing well enough to ask questions!

God bless,

Jane

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

> > When I had my surgery my ear felt like it was sliding down or worse yet, > like it didn't belong to me. After quite a while it only felt like that

My ear still feels like that... It feels so different than before the surg...

Lynn

[Guest guest]

Oh my, I don't know if I'll tell her that your ear still feels like that! How long has it been since your surgery?? I hate to think this feeling won't go away. She says the outside of her ear feels pretty numb, but I guess it hurts inside (she's still asking for pain meds). She says it just doesn't feel like it's connected or part of her ... ??? I can't really imagine how that feels.

Dianne

Lynn Witkowski wrote:

> > When I had my surgery my ear felt like it was sliding down or worse yet, > like it didn't belong to me. After quite a while it only felt like that

My ear still feels like that... It feels so different than before the surg...

Lynn

[Guest guest]

Hi Lynn,

Thanks for responding to all my questions. I am no reading all of your e-mails to her. I think eventually she will get on here herself, but right now, she is content for me to do the talking, funny kid! What exactly is gravol? I've never heard of that. She has a perscription for Darvocet and she is using that on average three times a day. I am concerned that she using it more to "numb out" from feeling strange, than to deal with pain. I know there are times when her pain seems to escalate, but when I ask her to "rate" her pain level, she usually can't.

We will be seeing her doctor again on Wednesday afternoon (September 11th!) to have her packing taken out and stitches removed. I will ask more about her follow-up care and what we are looking at next summer. I know she is really hoping that the next time will be much easier than this, of course, so are we all! She's pretty tough though and I know she will handle whatever she needs to handle.

As for me ... I have had a few medical things come up right in the midst of all this and have been doing the best I can to take care of myself. I think once is on her feet I will be just fine. I really appreciate your concern and I will most definitely be staying in touch. You guys are a lifeline for me! Don't know what I'd do without you!

God Bless!

Dianne

Lynn Witkowski wrote:

Hi Diane (and , if you come online),

I was happy to read of 's progress. At least she is talking about it and hopefully we'll get her to participate here soon. Her ear won't fall apart! even it it feels that way. Sometimes it can feel stiff or full, but it won't crumble. She still has packing in there, so she may be hearing sounds etc... Lots of people experience wooziness after surgery, hopefully that will go away soon. I found the post op period uncomfortable (but not exceedingly so, and not extremely painful), and I used the meds I was given for discomfort mostly at nite, cause that is when I noticed it most... I took gravol too, cause it helped me sleep.

>and I woke up to her crawling in bed with me. It's been a LONG time since that happened! She had a lot on her mind last night ...... there are some plusses :-)

>When they go back in for another look ... do they have to cut again or can it be done through the ear canal?

It sounds like had a Canal Wall Up, I am not sure if they go in through the back of the ear or if they do it transcanal. I am sure your doctor can tell you that. They may even start by going transcanal, but end up going through the back of the ear if any c-toma is found.

I get itching in my ear occasionally... It would be nice to use a "bottle brush" to relieve it, but I think that is normal and should decrease. Emotions can change I think after a general anaesthetic. Everyone is different and reactions are different, but that should settle down after a while. Someone told me it takes 1 month for every hour of anasthetic to get back to normal.

Diane, I hope you are also taking time for yourself. You probably had a tougher time through all this than had. Stay in touch.

Lynn

[Guest guest]

Hi Jane,

Well, I'm getting the feeling that this sensation in the ear is a pretty common occurence ... but it sure sounds scary to me! The itch apparently is too. I'm sorry ALL of you have had to go through all of this! Thanks for taking the time to answer. It is helpful to know that these things are a normal part of the process and that "this too shall pass!" Take care!

Dianne

Jane Blanchard wrote:

Hi Dianne,When I had my surgery my ear felt like it was sliding down or worse yet, like it didn't belong to me. After quite a while it only felt like that occasionally. And now only once in a very long while. It will get better.The second look is usually done through the ear canal and for me after the BIG surgery it was a piece of cake. It was done on a Friday and I was back at work on Monday - not even tired!Yep, itching. Been there, suffered that. Not much you can do, it's part of the healing process.I'm glad she's doing well enough to ask questions!God bless,Jane_________________________________________________________________Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com

[Guest guest]

Hi Diane,

That quote about the ear sliding down isn't mine, I just quoted it. My ear

feels numb and I was responding to the part that said " it doesn't feel like it

belongs to me " ... It just feels different than before. I had my surgery in May

this year. Sorry if I scared or upset you.. The good part is that is doesn't

look very much different.. unless you use a surgical microscope :-) And you

mentioned that 's ear is sticking out a bit, but that will go back into

place, it is just due to the swelling. Don't worry about that.

Lynn

>

> From: Dianne McAllister <diannemcal@...>

> Date: 2002/09/06 Fri PM 06:16:00 EST

> cholesteatoma

> Subject: Re: 's Surgery ... Thanks all

>

>

> Oh my, I don't know if I'll tell her that your ear still feels like that! How

long has it been since your surgery?? I hate to think this feeling won't go

away. She says the outside of her ear feels pretty numb, but I guess it hurts

inside (she's still asking for pain meds). She says it just doesn't feel like

it's connected or part of her ... ??? I can't really imagine how that feels.

> Dianne

> Lynn Witkowski wrote:>

> > When I had my surgery my ear felt like it was sliding down or worse yet,

> > like it didn't belong to me. After quite a while it only felt like that My

ear still feels like that... It feels so different than before the surg... Lynn

>

[Guest guest]

Hi Diane

I am glad if my emails help. Gravol is an " anti emetic " ... a big word for anti

nausea and vomiting medicine. It can be purchased over the counter at the

pharmacy. Dont' get a name brand though cause it is much more expensive.

Gravol's generic name is " dimenhydrinate " and it is used extensively in all age

groups for nausea and vomiting. It is actually an antihistamine, and it will

make you a little sleepy. But it is not habit forming. I used to use it when I

worked night shift and needed to sleep during the day... it really helped. I

also used it like I said post surgery. It is good if you are dizzy. Ask your

doctor about it when you see him.

Lynn

PS say hi to

>

> From: Dianne McAllister <diannemcal@...>

> Date: 2002/09/06 Fri PM 06:53:30 EST

> cholesteatoma

> Subject: Re: 's Surgery ... Thanks all

>

>

> Hi Lynn,

> Thanks for responding to all my questions. I am no reading all of your

e-mails to her. I think eventually she will get on here herself, but right now,

she is content for me to do the talking, funny kid! What exactly is gravol?

I've never heard of that. She has a perscription for Darvocet and she is using

that on average three times a day. I am concerned that she using it more to

" numb out " from feeling strange, than to deal with pain. I know there are times

when her pain seems to escalate, but when I ask her to " rate " her pain level,

she usually can't.

> We will be seeing her doctor again on Wednesday afternoon (September 11th!) to

have her packing taken out and stitches removed. I will ask more about her

follow-up care and what we are looking at next summer. I know she is really

hoping that the next time will be much easier than this, of course, so are we

all! She's pretty tough though and I know she will handle whatever she needs to

handle.

> As for me ... I have had a few medical things come up right in the midst of

all this and have been doing the best I can to take care of myself. I think

once is on her feet I will be just fine. I really appreciate your concern

and I will most definitely be staying in touch. You guys are a lifeline for me!

Don't know what I'd do without you!

> God Bless!

> Dianne

> Lynn Witkowski wrote:Hi Diane (and , if you come online), I was happy to

read of 's progress. At least she is talking about it and hopefully we'll

get her to participate here soon. Her ear won't fall apart! even it it feels

that way. Sometimes it can feel stiff or full, but it won't crumble. She still

has packing in there, so she may be hearing sounds etc... Lots of people

experience wooziness after surgery, hopefully that will go away soon. I found

the post op period uncomfortable (but not exceedingly so, and not extremely

painful), and I used the meds I was given for discomfort mostly at nite, cause

that is when I noticed it most... I took gravol too, cause it helped me sleep.

>and I woke up to her crawling in bed with me. It's been a LONG time since that

happened! She had a lot on her mind last night ...... there are some plusses

:-)>When they go back in for another look ... do they have to cut again or can

it be done through the ear canal? It sounds like had a Canal Wall Up, I am

not sure if they go in through the back of the ear or if they do it transcanal.

I am sure your doctor can tell you that. They may even start by going

transcanal, but end up going through the back of the ear if any c-toma is found.

I get itching in my ear occasionally... It would be nice to use a " bottle brush "

to relieve it, but I think that is normal and should decrease. Emotions can

change I think after a general anaesthetic. Everyone is different and reactions

are different, but that should settle down after a while. Someone told me it

takes 1 month for every hour of anasthetic to get back to normal. Diane, I

hope you are also taking time for yourself. You probably had a tougher time

through all this than had. Stay in touch.Lynn

>

[Guest guest]

Hi Dianne,

Here are a few more comments to add to the kind responses you've already received from others in the group:

She keeps saying it feels like her ear "is falling apart". Any thoughts on this? Is it just the healing process? Yes, this sounds like a normal part of the healing process.

She is afraid to move her face to smile or change her facial expressions because when she does she says it makes her feel like her ear is just going to crumble. I remember feeling the same way. I was afraid to wear earrings for the longest time.

When they go back in for another look ... do they have to cut again or can it be done through the ear canal? They did mine through the ear canal! We didn't know if they would be able to or not. When they prepped me for surgery, they had to go ahead and shave around my ear - but when my doctor got started, he was able to do everything through the ear canal without cutting again. He checked for recurrence, put in prosthetic hearing bones and rebuilt my eardrum. (my first surgery was canal wall up)

Also, she says the inside of her ear is itching like crazy and it is driving her nuts ... is this common? It particularly bothers her after I put the drops in. I wouldn't imagine there isn't a thing she can do about this one except tough it out you're right, this is all normal and there isn't much she can do except tough it out. The itching does eventually stop... but now I've noticed that cool air from the air conditioner blowing on my ear can give me a brain freeze like eating ice cream too fast. (The only time this happens is in the car.)

Tell to hang in there. It sounds like her healing is progressing just as it should be and it will all be behind her before she knows it.

[Guest guest]

Thanks for clarifying! I was a little concerned about the thought of this feeling not going away! She seems a bit worse today than she has been. She says she is having some pain down from the ear down her neck (where the eustacion tube would empty I presume). She is not running any fever and otherwise seems fine so I'm just going to continue the antibiotics and the drops and watch. Thanks again Lynn, I do tend to be a bit of a "worryer!!"

Dianne

lynnwit@... wrote:

Hi Diane,That quote about the ear sliding down isn't mine, I just quoted it. My ear feels numb and I was responding to the part that said "it doesn't feel like it belongs to me"... It just feels different than before. I had my surgery in May this year. Sorry if I scared or upset you.. The good part is that is doesn't look very much different.. unless you use a surgical microscope :-) And you mentioned that 's ear is sticking out a bit, but that will go back into place, it is just due to the swelling. Don't worry about that.Lynn> > From: Dianne McAllister <diannemcal@...>> Date: 2002/09/06 Fri PM 06:16:00 EST> cholesteatoma > Subject: Re: 's Surgery ... Thanks all> > > Oh my, I don't know if I'll tell her that your ear still feels like that! How long has it been since your surgery?? I hate to think this feeling won't go away. She says the outside of her ear feels pretty numb, but I guess it hurts inside (she's still asking for pain meds). She says it just doesn't feel like it's connected or part of her ... ??? I can't really imagine how that feels.> Dianne> Lynn Witkowski wrote:> > > When I had my surgery my ear felt like it was sliding down or worse yet, > > like it didn't belong to me. After quite a while it only felt like that My ear still feels like that... It feels so different than before the surg... Lynn >

[Guest guest]

Thank you so much !

I will have to be sure and mention the A/C thing to her if it comes up, how very strange that must be! There just seems to be an endless list of adjustments that come along with this "little" surgery! I know it has caused some pretty enormous changes in her life already ... I'm sure things will start to go back to normal before too long now. I do appreciate the reassurance. It is good to know that most of these things will pass given enough time. Sometimes just hearing that what is happening is NORMAL is all you need ... thanks for taking the time to respond and making it that much easier for her (and me) to get through all this!

Dianne

wrote:

Hi Dianne,

Here are a few more comments to add to the kind responses you've already received from others in the group:

She keeps saying it feels like her ear "is falling apart". Any thoughts on this? Is it just the healing process? Yes, this sounds like a normal part of the healing process.

She is afraid to move her face to smile or change her facial expressions because when she does she says it makes her feel like her ear is just going to crumble. I remember feeling the same way. I was afraid to wear earrings for the longest time.

When they go back in for another look ... do they have to cut again or can it be done through the ear canal? They did mine through the ear canal! We didn't know if they would be able to or not. When they prepped me for surgery, they had to go ahead and shave around my ear - but when my doctor got started, he was able to do everything through the ear canal without cutting again. He checked for recurrence, put in prosthetic hearing bones and rebuilt my eardrum. (my first surgery was canal wall up)

Also, she says the inside of her ear is itching like crazy and it is driving her nuts ... is this common? It particularly bothers her after I put the drops in. I wouldn't imagine there isn't a thing she can do about this one except tough it out you're right, this is all normal and there isn't much she can do except tough it out. The itching does eventually stop... but now I've noticed that cool air from the air conditioner blowing on my ear can give me a brain freeze like eating ice cream too fast. (The only time this happens is in the car.)

Tell to hang in there. It sounds like her healing is progressing just as it should be and it will all be behind her before she knows it.

[Guest guest]

Hi Dianne,

Although it was only May when I had my surgery, it seems as though it was so long ago... I have a hard time remembering the discomfort, so that is a good thing. I do remember that I did have soreness deep inside and down my neck, and it was also uncomfortable to chew at first. But that all got better. There are shooting pains through the ear on occasion, but they last only moments... I think the symptom that sticks the most with me is the Tinnitus... that never goes away...

Hope is having a better day.

Lynn

Re: 's Surgery ... Thanks all> > > Oh my, I don't know if I'll tell her that your ear still feels like that! How long has it been since your surgery?? I hate to think this feeling won't go away. She says the outside of her ear feels pretty numb, but I guess it hurts inside (she's still asking for pain meds). She says it just doesn't feel like it's connected or part of her ... ??? I can't really imagine how that feels.> Dianne> Lynn Witkowski wrote:> > > When I had my surgery my ear felt like it was sliding down or worse yet, > > like it didn't belong to me. After quite a while it only felt like that My ear still feels like that... It feels so different than before the surg... Lynn >

[Guest guest]

Hi Lynn,

Well, seems to be getting MUCH better. She's starting to push me to let her go out and run with her friends. She has one of her friends staying the night tonight ... and "the beat goes on". She's not complaining near as much and insisted on me washing her hair again tonight (they told her not to wash it herself ... so I have to wash it in the sink and put a plastic cup over the right ear). Looks like we're on the road to things going back to normal around here. She hasn't complained about her neck today. She had a "rough patch" last night, but it didn't last long and she slept for 12 hours last night, so it couldn't have been too bad!! Thanks for all your kind responses to all my "panic attacks". It is so helpful to know that what we are going through is OK, just part of the process. did ask me to as if it was normal for there to be occasional "chunks" (sorry, just can't come up with a better word), that come out on the cotton ball when you change it? I'm assuming it is dried blood, or perhaps part of the packing ... they are small pieces, covered in blood that adhere to the cotton. Doesn't look like much of anything to me but she is very concerned about it. Another question for the experts!!!

Dianne

Lynn Witkowski wrote:

Hi Dianne,

Although it was only May when I had my surgery, it seems as though it was so long ago... I have a hard time remembering the discomfort, so that is a good thing. I do remember that I did have soreness deep inside and down my neck, and it was also uncomfortable to chew at first. But that all got better. There are shooting pains through the ear on occasion, but they last only moments... I think the symptom that sticks the most with me is the Tinnitus... that never goes away...

Hope is having a better day.

Lynn

Re: 's Surgery ... Thanks all> > > Oh my, I don't know if I'll tell her that your ear still feels like that! How long has it been since your surgery?? I hate to think this feeling won't go away. She says the outside of her ear feels pretty numb, but I guess it hurts inside (she's still asking for pain meds). She says it just doesn't feel like it's connected or part of her ... ??? I can't really imagine how that feels.> Dianne> Lynn Witkowski wrote:> > > When I had my surgery my ear felt like it was sliding down or worse yet, > > like it didn't belong to me. After quite a while it only felt like that My ear still feels like that... It feels so different than before the surg... Lynn >

[Guest guest]

Dianne McAllister wrote:

Thanks for all your kind responses to all my "panic attacks".

Hang in there Dianne, I have panic attacks as well as anxiety attacks. I think I have had them for years, I just didn't know what they were until Larry got diagnosed the first time. Larry's ENT pretty much told me what was happening to me and I have been on medicine ever since. It helps alot, but I hate the fact that I have to be on medicine just to, well, control myself.

did ask me to as if it was normal for there to be occasional "chunks" (sorry, just can't come up with a better word), that come out on the cotton ball when you change it? You can tell that this is normal. If she will let you, you can get a cotton swab and some alcohol and clean up around the opening of her ear. If the alcohol runs, it will evaporate before it gets anywhere and is a great remover of stuck blood.

Tell hello for me and to take care. You take care of yourself too.

Michele

[Guest guest]

Hi Dianne,

As the ear heals in one place, soreness in another place may become more

apparent. It's not new, it was just camouflaged by the other aches. My

whole side of the head from just above my ear all the way down my neck was

sore at one time or another till it all healed. How she fells may go up and

down for a little while - overall they will be up hill. Most if not all of

the strange feelings will go away in time. Some sooner than others. My ear

feels normal 99% of the time. Even when it doesn't feel normal it looks

normal to everyone else. No one can SEE what you FEEL.

God Bless,

Jane

>From: Dianne McAllister <diannemcal@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Re: 's Surgery ... Thanks all

>Date: Sat, 7 Sep 2002 18:31:35 -0700 (PDT)

>

>

>Thanks for clarifying! I was a little concerned about the thought of this

>feeling not going away! She seems a bit worse today than she has been.

>She says she is having some pain down from the ear down her neck (where the

>eustacion tube would empty I presume). She is not running any fever and

>otherwise seems fine so I'm just going to continue the antibiotics and the

>drops and watch. Thanks again Lynn, I do tend to be a bit of a " worryer!! "

>Dianne

> lynnwit@... wrote:Hi Diane,

>That quote about the ear sliding down isn't mine, I just quoted it. My ear

>feels numb and I was responding to the part that said " it doesn't feel like

>it belongs to me " ... It just feels different than before. I had my surgery

>in May this year. Sorry if I scared or upset you.. The good part is that

>is doesn't look very much different.. unless you use a surgical microscope

>:-) And you mentioned that 's ear is sticking out a bit, but that

>will go back into place, it is just due to the swelling. Don't worry about

>that.

>Lynn

> >

> > From: Dianne McAllister <diannemcal@...>

> > Date: 2002/09/06 Fri PM 06:16:00 EST

> > cholesteatoma

> > Subject: Re: 's Surgery ... Thanks all

> >

> >

> > Oh my, I don't know if I'll tell her that your ear still feels like

>that! How long has it been since your surgery?? I hate to think this

>feeling won't go away. She says the outside of her ear feels pretty numb,

>but I guess it hurts inside (she's still asking for pain meds). She says

>it just doesn't feel like it's connected or part of her ... ??? I can't

>really imagine how that feels.

> > Dianne

> > Lynn Witkowski wrote:>

> > > When I had my surgery my ear felt like it was sliding down or worse

>yet,

> > > like it didn't belong to me. After quite a while it only felt like

>that My ear still feels like that... It feels so different than before the

>surg... Lynn

> >

[Guest guest]

In a message dated 09/09/2002 2:12:39 PM Eastern Daylight Time, diannemcal@... writes:

it seems like every once in a while when we change out the cotton ball, there is more than just some blood on the cotton.

Hi - if she had the dissolving packing (which is pretty likely, it seems to be becoming standard) then you will get not only blood & ear drop residue, but also the dissolving packing. Packing dissolves into a fluid & drains both out of the ear & down through the eustachian tube. I had some upper respiratory wheeziness in the weeks after my last op that my regular doctor & ENT both attributed to the packing irritating my airways as it drained out of the tube. I don't think it's very common, you may want to share that with on a "need to know" basis.

I never saw my packing when the dissolving type was used. I did come across nasty lumps of it with my 1st op, but that was the non-dissolving kind.

[Guest guest]

Hi Jane,

I am now reading all of these responses to and they really do help both of us! I think it is very encouraging to her to know that all of this is OK. I'm really glad you mentioned this: As the ear heals in one place, soreness in another place may become more apparent. It's not new, it was just camouflaged by the other aches. My whole side of the head from just above my ear all the way down my neck was sore at one time or another till it all healed. Last night was upset because above her ear was extremely sore -- a new development and I didn't know why she was hurting up there -- so before I got to ask the question, you answered it. Thanks!

My ear feels normal 99% of the time. Even when it doesn't feel normal it looks normal to everyone else. No one can SEE what you FEEL. We can never hear this too much!!!!God Bless,

Dianne

[Guest guest]

Hello --

You can tell that this is normal. If she will let you, you can get a cotton swab and some alcohol and clean up around the opening of her ear. If the alcohol runs, it will evaporate before it gets anywhere and is a great remover of stuck blood.

We actually did this last night with some diluted hydrogen peroxide (that's what the aftercare instructions said), but there really wasn't much of anything to clean up ... and there doesn't appear to be much of anything in the ear canal. We have to do the fioxin drops 2x a day (which she absolutely HATES) and it seems like every once in a while when we change out the cotton ball, there is more than just some blood on the cotton. The ear canal itself looks clear ... the packing must be way down in there -- I don't see it. Kind of makes me wonder.

Tell hello for me and to take care. You take care of yourself too. I told you said hello and take care ... and she said for me to say "wuzzup Michele"! Well, what can I say, it's a start!!

Take care,

Dianne

[Guest guest]

Thanks ,

I don't know what this was, but at this point we're not seeing much of anything. Not really even much blood on the cotton. I am really amazed at how good and clear inside her ear looks. I have to admit, I didn't get real into "examining" these particles to figure out what they were, I'm a bit of chicken (I'm putting that mildly!). Funny, I used to be a midewife's assistant at births, so I've assisted at probably 40 or more births ... but blood in any other situation that is not my own just about makes me pass out, especially if it is my children's!! That has come in real handy over the years ...

Take care!

Dianne

rlockw1092@... wrote:

In a message dated 09/09/2002 2:12:39 PM Eastern Daylight Time, diannemcal@... writes:

it seems like every once in a while when we change out the cotton ball, there is more than just some blood on the cotton.

Hi - if she had the dissolving packing (which is pretty likely, it seems to be becoming standard) then you will get not only blood & ear drop residue, but also the dissolving packing. Packing dissolves into a fluid & drains both out of the ear & down through the eustachian tube. I had some upper respiratory wheeziness in the weeks after my last op that my regular doctor & ENT both attributed to the packing irritating my airways as it drained out of the tube. I don't think it's very common, you may want to share that with on a "need to know" basis. ;)I never saw my packing when the dissolving type was used. I did come across nasty lumps of it with my 1st op, but that was the non-dissolving kind.

[Guest guest]

Hi Lynn & Phil ...

doesn't have anything that sounds like what either of you had. Both of you had CWD right? When there is a tympanoplasty, does that always mean it is a CWU? I'm still trying to figure all this out. The doctor and I talked about it before the surgery and he said we were going to do a canal wall up barring that there were no complications that would not allow it. Her ear looks almost normal to me. There is no visible packing ... very little blood. We put drops in and just put a half a cotton ball in after we put the drops in. ???

Take Care ...

Dianne

- We Remember

9-11: A tribute to the more than 3,000 lives lost

[Guest guest]

Hi Dianne!

I'm not sure when my surgery is since I'm being a big

baby about the whole thing. I guess I can have it

whenever I want but I'm waiting for a second opinion.

If I go with the second opinion doc I have to wait

till my insurance can be switched in January. I'm sure

my HMO doc is competent and I am waiting around

needlessly. My ear is starting to hurt again. For

awhile, it was like I didn't have the ctoma.

__________________________________________________

- We Remember

9-11: A tribute to the more than 3,000 lives lost

http://dir.remember./tribute

[Guest guest]

Hi Diane,

Yes I had a CWD, and I believe that is what Phil had as well. Phil's case is much more extensive than mine though. I think that pretty much any surgery that involves the ear includes a tympanoplasty. When I had the original surgery in February for a "stapedotomy", I had a tympanoplasty. I think if the eardrum is touched, you end up with a tympanoplasty.

Lynn

Re: Re: 's Surgery ... Thanks all

Hi Lynn & Phil ... doesn't have anything that sounds like what either of you had. Both of you had CWD right? When there is a tympanoplasty, does that always mean it is a CWU? I'm still trying to figure all this out. The doctor and I talked about it before the surgery and he said we were going to do a canal wall up barring that there were no complications that would not allow it. Her ear looks almost normal to me. There is no visible packing ... very little blood. We put drops in and just put a half a cotton ball in after we put the drops in. ??? Take Care ... Dianne

- We Remember9-11: A tribute to the more than 3,000 lives lost