just diagnosed yesterday

[Guest guest]

Angel,

I had a cholesteatoma removed in September - in a weeks time I felt much better - I never had to take any kind of pain meds (everyone is different) it was not painful for me. The doctor had told me that people normally have little to no pain on head surgeries. My doctor prepared me for the worst (not sure how advanced your is?) and then when I had the actual surgery it was not as bad as expected. I wish I could tell you to not be scared but I was totally mortified before my surgery because I had never had any kind of surgery before and was scared to be put out and then the unknown of how you would feel when you woke up. It was much better than I anticipated. I did loose hearing in my operated ear which was a strange feeling for me but I am getting use to it. My only suggestion is make sure you have a good doctor "Otologist" who specializes in the ear and your outcome will suprise you. I am glad you

have joined the group - it is interesting to read all the different post - take care and good luck you will survive like the rest of us - it will get better!

From: dj4oldies <dj4oldies@...>cholesteatoma Sent: Saturday, December 13, 2008 7:29:43 AMSubject: Just diagnosed yesterday

Hello all, I am new to all this. I have had ear issues for over 35 years but the c-toma was diagnosed yesterday. I have to have surgery of course. My ENT wants to do it but has sent me to a EAR specialist for a second opinion. Can anyone give me any advice, how long will the recovery take, how long the surgery takes, how to get rid of the terrifying feeling of how painful this has to be? Or anything else I should know or maybe ask my dr. I go back to my ENT on the 26th and see the EAR specialist on the 22. thank you so muchangel

[Guest guest]

Angel,

Like , I've never had much in the way of pain in three operations

to remove cholesteatoma. No, not three ears - I've had one recurrence. :-)

You'll likely be a bit sore from having having your mouth wide open for

a long time - and I know my jaw didn't really close right until the deep

plug came out (about week two or three).

One thing I'd recommend is a heart to heart talk with your ENT. This

particular surgery is best done by an otologist that is also a

neurotologist with a good amount of surgical experience. If your ENT

doesn't have a lot of surgical experience for cholesteatoma removal, I'd

be a bit reluctant to let him do it. If your ENT has done a lot of

these successfully, well, then maybe it would be okay. I'm just saying

that I personally don't think this is a surgery for the doctor that

thinks they can do it. They should go through more training under other

specialists that have honed their skills.

I was pretty scared myself, but the doctors and nurses were quite

careful. Once they gave me a shot of something to relax a bit the

morning of surgery. Don't be surprised if you have some nausea upon

waking up. That's kind of normal, but it will go away after a good you

know what or two. One important thing will be to stay hydrated after

surgery. It will take a good four days for the anesthetic to wear off.

Go on the " BRAT " diet for a couple of days and slowly get back to normal

food. Don't be afraid to do a little walking after you remove the big

head bandage on the morning after surgery. That and plenty of water

will get rid of the foggy feeling of the anesthetic. I've always had a

little trouble concentrating for about the first week, so don't push

things. I was able to enjoy some good movies - I could focus enough to

do that. By day four I could usually drive. When the doctor put in the

hearing prosthesis, I couldn't lift over 10 pounds for about six weeks

and flying was restricted. Jarring contact sports have to go on hiatus

for about the same amount of time.

The surgery itself can vary quite a bit with respect to time. It will

all depend on what the doctor finds when they get in there. I don't

think the CT scan are much good except for confirming the diagnosis. My

doctor originally said two or three hours for my first surgery and it

wound up being closer to 8. Half way through he took a break and told

my wife everything was okay but that things would take a little while.

It was much larger than what he thought.

Oh, don't wear anything that you have to pull over your head on the day

of surgery - wear button down stuff only.

So, I hope this helps somewhat. Try your best not to get too worked

up. All the best,

Matt

Captain Definder wrote:

> Angel,

>

> I had a cholesteatoma removed in September - in a weeks time I felt

> much better - I never had to take any kind of pain meds (everyone is

> different) it was not painful for me. The doctor had told me that

> people normally have little to no pain on head surgeries. My doctor

> prepared me for the worst (not sure how advanced your is?) and then

> when I had the actual surgery it was not as bad as expected. I wish I

> could tell you to not be scared but I was totally mortified before my

> surgery because I had never had any kind of surgery before and was

> scared to be put out and then the unknown of how you would feel when

> you woke up. It was much better than I anticipated. I did loose

> hearing in my operated ear which was a strange feeling for me but I am

> getting use to it. My only suggestion is make sure you have a good

> doctor " Otologist " who specializes in the ear and your outcome will

> suprise you. I am glad you have joined the group - it is interesting

> to read all the different post - take care and good luck you will

> survive like the rest of us - it will get better!

>

>

>

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

> *From:* dj4oldies <dj4oldies@...>

> *To:* cholesteatoma

> *Sent:* Saturday, December 13, 2008 7:29:43 AM

> *Subject:* Just diagnosed yesterday

>

> Hello all, I am new to all this. I have had ear issues for over 35

> years but the c-toma was diagnosed yesterday. I have to have surgery

> of course. My ENT wants to do it but has sent me to a EAR specialist

> for a second opinion. Can anyone give me any advice, how long will

> the recovery take, how long the surgery takes, how to get rid of the

> terrifying feeling of how painful this has to be? Or anything else I

> should know or maybe ask my dr. I go back to my ENT on the 26th and

> see the EAR specialist on the 22.

>

> thank you so much

>

> angel

>

>

>

--

[Guest guest]

Angel,

Matt reminded me in his write up about my jaw - I have already forgotten about not being able to open my mouth very wide to get my fork or spoon in my mouth - it seemed like 2 or 3 weeks before it got better - the first few bites every meal my jaw hurt but I just took my time and ate anyway because I am thin and can't afford to loose weight. I remember brushing my teeth and trying to brush my tongue and couldn't understand why my mouth wasn't opening as wide as normal - but I guess it was from my jaw - it's back to normal now.

From:

[Guest guest]

I had my ctoma removed 5 days ago, and now i can replied you.The surgery took 2 hours, and i wake up with some vomitting feeling due to the side effect of anaesthetic drugs. I kept vomitting and could not take any food and cant even drink much water till the 3rd day. I lost 8 pounds in 3 days!I dont feel any pain, only till today i can feel some minor pain and itchy.Im glad that i dont experience any facial paralysis.Good luck to u.

[Guest guest]

Angel, Others have mentioned sore jaws, but not all surgeries are done

that way. Mine had to be done by cutting my ear along the back side,

folding it forward and drilling thru my skull to get to it. I did not

have any facial nerve damage, but at the site, I have marked numbness

(not total) and this has been a year now (as of Dec 18th). My second

surgery was able to be done by going in thru the ear canal and he did

not have to reopen my head. I was HUGELY upset before my first

surgery. Shaken, upset, agitated, nervous, emotional, headaches, etc.

I know that part of it was because once I finally had an MRI done, I

got the results 2 weeks later and was told we needed to operate right

away. 2 weeks later, I had it done and even then, the dr was astounded

at how much it had grown since the MRI a month prior. Post op, I was

sore for a good two weeks, but the actual pain level was not horrible.

My body did not handle the pain pills all that well. For most people,

they tend to constipate you. If you have your surgery done thru your

mouth, maybe the protocol is to be on a semi or total liquid diet. Not

the case with going thru the skull. This is something you might want

to be prepared for... go get a generic herbal softener and take it as

soon as you take your first pain pill. You will be grateful! Talk to

your Dr about the pain meds he/she will prescribe and ask which

softener they might recommend. Personally, I took the pain meds on the

surgery day only. I have 3 small children and a husband who does not

deal with " drugged " situations well (bad memories of his mom being

intoxicated), so I chose to ditch the RX and used good old Tylenol. I

was sore and at a tolerable pain level. I also had severe Vertigo.

The valium that the Dr gave me did not help that situation at all. I

found that using an essential oil blend called " Vertigo Support " worked

amazingly well. It is sold by www.naturesinventory.com and the regular

price for their oils is $15 per bottle. I am a distributor now, but I

want people to try it because it works, so I'll not pass along my

distributor info to gain credit. Just go straight to the company

itself and order from them. They are wonderful and will give you your

$ back if you are not happy with it. My 2nd surgery thru the ear canal

was much easier on the pain level. I'm sure because it was not as

invasive as the first. My hearing did not come back after the repair

surgery last August. However, just last week, it did. I have had a

good amount of infectious looking " goo " coming from the ear for 2 days

accompanied by stabbing pains (about a level 4) all day/night. That

has now stopped (the goo and the pains). I have called my ENT's office

a few times, but can't seem to get a call back, to see if I need to

come in. Not too thrilled that my Dr just wants to do a recheck in a

year. (That's what my mother-in-laws first oncologist told her after

her double mastectomy and when she finally came back, she was too far

gone.) A Ctoma is nothing to take lightly. Granted, it's benign, but

the damage it can do is deadly, so be proactive. I would like to

encourage you (AND EVERYONE) to take control of this situation. For

me, that has been finding out why it's happening and addressing it

nutritionally. So far, it's working. You will find that many choose

to have surgery after surgery bc it keeps coming back. Everyone has

their own reasons for doing or not doing things, mostly, bc other

options are unknown. Now that I've had mine surgically removed, I am

chosing to be my own guinnea pig with natural options, not RX options.

If you think about it, we're all guinnea's no matter which choice we

make. I don't mean to offend anyone, just want to let people know that

there are other things to consider. And i'm not some extremist

either. As i write this, I'm eating leftover Domino's pizza!

Have a beautiful day and I hope all of our replies offer you some peace

of mind. Sincerely, Angel in Kansas

>

> Hello all, I am new to all this. I have had ear issues for over 35

> years but the c-toma was diagnosed yesterday. I have to have surgery

> of course. My ENT wants to do it but has sent me to a EAR specialist

> for a second opinion. Can anyone give me any advice, how long will

> the recovery take, how long the surgery takes, how to get rid of the

> terrifying feeling of how painful this has to be? Or anything else I

> should know or maybe ask my dr. I go back to my ENT on the 26th and

> see the EAR specialist on the 22.

>

> thank you so much

>

> angel

>

[Guest guest]

Angel,

The jaw is sore because they must insert dams and drains while they do

the surgery. They insert the dams and drains in your mouth - they

don't do the surgery through the mouth. My doctor cut behind my ear

each time. It's hard to believe that doesn't hurt much, but it

doesn't. The jaw is sore because it's been held wide open for so long.

Matt

ksboheem wrote:

>

> Angel, Others have mentioned sore jaws, but not all surgeries are done

> that way. Mine had to be done by cutting my ear along the back side,

> folding it forward and drilling thru my skull to get to it. I did not

> have any facial nerve damage, but at the site, I have marked numbness

> (not total) and this has been a year now (as of Dec 18th). My second

> surgery was able to be done by going in thru the ear canal and he did

> not have to reopen my head. I was HUGELY upset before my first

> surgery. Shaken, upset, agitated, nervous, emotional, headaches, etc.

> I know that part of it was because once I finally had an MRI done, I

> got the results 2 weeks later and was told we needed to operate right

> away. 2 weeks later, I had it done and even then, the dr was astounded

> at how much it had grown since the MRI a month prior. Post op, I was

> sore for a good two weeks, but the actual pain level was not horrible.

> My body did not handle the pain pills all that well. For most people,

> they tend to constipate you. If you have your surgery done thru your

> mouth, maybe the protocol is to be on a semi or total liquid diet. Not

> the case with going thru the skull. This is something you might want

> to be prepared for... go get a generic herbal softener and take it as

> soon as you take your first pain pill. You will be grateful! Talk to

> your Dr about the pain meds he/she will prescribe and ask which

> softener they might recommend. Personally, I took the pain meds on the

> surgery day only. I have 3 small children and a husband who does not

> deal with " drugged " situations well (bad memories of his mom being

> intoxicated), so I chose to ditch the RX and used good old Tylenol. I

> was sore and at a tolerable pain level. I also had severe Vertigo.

> The valium that the Dr gave me did not help that situation at all. I

> found that using an essential oil blend called " Vertigo Support " worked

> amazingly well. It is sold by www.naturesinventory.com and the regular

> price for their oils is $15 per bottle. I am a distributor now, but I

> want people to try it because it works, so I'll not pass along my

> distributor info to gain credit. Just go straight to the company

> itself and order from them. They are wonderful and will give you your

> $ back if you are not happy with it. My 2nd surgery thru the ear canal

> was much easier on the pain level. I'm sure because it was not as

> invasive as the first. My hearing did not come back after the repair

> surgery last August. However, just last week, it did. I have had a

> good amount of infectious looking " goo " coming from the ear for 2 days

> accompanied by stabbing pains (about a level 4) all day/night. That

> has now stopped (the goo and the pains). I have called my ENT's office

> a few times, but can't seem to get a call back, to see if I need to

> come in. Not too thrilled that my Dr just wants to do a recheck in a

> year. (That's what my mother-in-laws first oncologist told her after

> her double mastectomy and when she finally came back, she was too far

> gone.) A Ctoma is nothing to take lightly. Granted, it's benign, but

> the damage it can do is deadly, so be proactive. I would like to

> encourage you (AND EVERYONE) to take control of this situation. For

> me, that has been finding out why it's happening and addressing it

> nutritionally. So far, it's working. You will find that many choose

> to have surgery after surgery bc it keeps coming back. Everyone has

> their own reasons for doing or not doing things, mostly, bc other

> options are unknown. Now that I've had mine surgically removed, I am

> chosing to be my own guinnea pig with natural options, not RX options.

> If you think about it, we're all guinnea's no matter which choice we

> make. I don't mean to offend anyone, just want to let people know that

> there are other things to consider. And i'm not some extremist

> either. As i write this, I'm eating leftover Domino's pizza!

> Have a beautiful day and I hope all of our replies offer you some peace

> of mind. Sincerely, Angel in Kansas

>

>

> >

> > Hello all, I am new to all this. I have had ear issues for over 35

> > years but the c-toma was diagnosed yesterday. I have to have surgery

> > of course. My ENT wants to do it but has sent me to a EAR specialist

> > for a second opinion. Can anyone give me any advice, how long will

> > the recovery take, how long the surgery takes, how to get rid of the

> > terrifying feeling of how painful this has to be? Or anything else I

> > should know or maybe ask my dr. I go back to my ENT on the 26th and

> > see the EAR specialist on the 22.

> >

> > thank you so much

> >

> > angel

> >

>

>

--

[Guest guest]

I had my c-toma removed one week ago.At first, i presumed the discharged from my ear is blood. But recently, i dont think so because the liquid is getting brown in color and smelly. Im thinking of shall i rush back to my ent before the appointment date 3 days later.

[Guest guest]

it is better to be safe than sorry - but it sounds normal - take care

From: WW Chew <ww_chew@...>cholesteatoma Sent: Monday, December 15, 2008 9:54:07 PMSubject: Re: Just diagnosed yesterday

I had my c-toma removed one week ago.At first, i presumed the discharged from my ear is blood. But recently, i dont think so because the liquid is getting brown in color and smelly.Im thinking of shall i rush back to my ent before the appointment date 3 days later.

[Guest guest]

interesting. I never had an ounce of pain, soreness or trouble of

any kind with my mouth/jaw. My dr never mentioned anything about it

either. I would have to assume this type of proceedure was not done

on me.

--- In cholesteatoma , "

[Guest guest]

My ds is 6 1/2 and has already been hospitalized for aggressive behavior last

summer and we've been told he's got what looks like ADHD, could be bipolar, the

hospital discharged him with " mood disorder NOS " and others have said he's got

OCD behaviors. I'm sick of people throwing darts into the air... I want to know

what's going on with my son! Our pediatrician sent us to the ER two weeks ago

because his behavior was out of control in the office with his 2 yr old brother

(smothering-like, wanting to " tickle " which is more like aggressive tickling,

laughing hysterically, and squiriming about). We got a triag eval done and were

told to meet with the Dept of Mental Health the following day for an eval. They

determined no need for hospitalization but referred us for a psych eval with a

doctor who is supposed to be top notch. We saw him yesterday.

I gave him the whole history... has smeared feces 6 times in 2-3 yrs, very

moody, has history of aggression (mostly with me), is very in your face, has

little concept of social cues, flicks his fingers & hands, seems to have some

sensory issues, had in the past done OCD like behaviors... tapping, hitting

things as he walked past them, smacking or punching his food as he ate it,

trouble with animals... can't read their cues or " get " how to behave with them

no matter how many times I teach him. Stuff like that. And I told him how now

about 6 adults (a former therapist, a current therapist, a nurse practicioner, a

pediatrician, a babysitter, a teacher, and a psychiatrist) have all mentioned

Aspergers' but nothing had been done. I said I was sick of people making

guesses and wanted to know if there really was something to this Aspergers

thing. The psych we saw yesterday said he'd bet the farm that is what it was

developing into and looks like, even though DS is so young and that it usually

doesnt' show until age 8-12.

I tried to explain this to my husband (DS's stepdad) yesterday and it was like

trying to sell a used car. He thinks that I'm just getting docs to pump him

with meds, why not just add more? And he was also updset that this seems like

the " diagnosis of the week " and it'll be something else next month. I can't get

him to understand that with all this documentation I have & that the

professionals all see something so it's not just something fabricated to make

the doctors money.

My husband also wants to know more importantly how to discipline him. Do we

treat him different? Do we let things slide now and just chalk it up to " he's

different " ? Do we keep the same routine, strict structure we've been using that

seems to work for the most part? (Note, it works for my husband, I can't get DS

to respond to me. It's like he walks all over me and even I can see that. I

know I'm lenient and I wonder if it's cuz I know something is wrong?)

So today I feel empty. I now have an unofficial (I have nothing in writing yet)

diagnosis of Aspergers which I have so much to learn about. It does seem to fit

him though.... and it feels like I'm married to an unsupportive close minded

Archie Bunker type person!!!!

Thanks for listening....