RE: I'm back - success but some questions ????

November 12, 2003

Hi Ann

I'm glad the surgery is over for you now. I had Canal Wall Down surgery three years ago and so far, no recurrence of the ctoma. As for feeling like a freak, I had half my head shaved (but leaving a layer on top) on 4 November (Tuesday last week), for more surgery and yes, it looks strange, but keep in the front of your mind firstly that soon you'll be right as rain and secondly, your hair will very soon have grown back.

"Don't worry, be happy" as they say.

Take care, be well.

Kazz

xx

-----Original Message-----From: ann_stargazer [mailto:ann_stargazer@...]Sent: 13 November 2003 01:23cholesteatoma Subject: I'm back - success but some questions ????Hi all,I'm back - went in last week for my second surgery this year (failed attempt in October). Went in Tuesday last (eventually got a bed) - usual blood tests on Tuesday. On Wednesday had a cerebral angiogram (quite an experience but facinating because I could see all the blood vessels in my head on the monitor) - also had a ct scan - very sick that evening - they told me it was the dye they used to show up the vessals on the monitors. Quick talk with surgeon (and yes he was an ear doc only !!) - he said all my scans looked normal (previous surgery was halted because they hit a vein and too much blood loss). Went down on Thursday for surgery at 12:45 - lasted just under five hours. Don't remember waking up in the recovery room. Spent the night been sick - room would not stop spining. But Friday morning came and i stopped been sick. Surgeon came in and told me that op was a success. C-toma was extensive - it had exposed the dura (brain) and that is what caused the bleeding in my first surgery. But said the surgery was a success because all the c-toma was removed. Said i had an open cavity. Still been out of it (and totally freaked when the brain exposure subject came up !!), i forgot all my questions - so any help with what an open cavity means ? I go back in three weeks time for the checkup and i assume removal of the packaging. I don't know yet, how my hearing is effected.I got home on Sunday but recovery is not as quick this time. Feeling very fragile and totally reliant on pain killers - when does the pain stop. I have clips and stitches - which i get out tomorrow (by my local gp - hospital is over 3 hours away so they said my gp could remove the stitches). It's lucky i have long hair - well over an inch shaved this time - so some times feeling down - do any of you ever feel like a freak when you look in the mirror - i know it's vanity but ....Also wishing i could taste food - horrible taste in my mouth - metallic coating is the best way i can describe it. I'm eating cause i know i have to but wish i could tasteAnyway - sorry for moaning - i know it takes time and i am happy that the c-toma was removed completely. Each day things gets betteri haven't caught up yet on the last weeks posts but hope every one who was due surgery had happy storieslove to all ann.

November 12, 2003

Quoting ann_stargazer <ann_stargazer@...>: (snipped)

> C-toma was extensive - it had exposed the dura

> (brain) and that is what caused the bleeding in my first surgery.

> But said the surgery was a success because all the c-toma was

> removed. Said i had an open cavity. Still been out of it (and

> totally freaked when the brain exposure subject came up !!), i forgot

> all my questions - so any help with what an open cavity means ?

Canal wall down? I think. It means your mastoid cavity is open and you'll

have to have regular cleanings.

> I go

> back in three weeks time for the checkup and i assume removal of the

> packaging. I don't know yet, how my hearing is effected.

You probably don't have any ossicles left :-( But you still may be a

candidate for reconstruction with a TORP (Total Ossicular Replacement

Prosthesis) The most important thing is getting rid of the c-toma. THEN

fix the hearing.

> I got home on Sunday but recovery is not as quick this time. Feeling

> very fragile and totally reliant on pain killers - when does the pain

> stop. I have clips and stitches - which i get out tomorrow (by my

> local gp - hospital is over 3 hours away so they said my gp could

> remove the stitches). It's lucky i have long hair - well over an

> inch shaved this time - so some times feeling down - do any of you

> ever feel like a freak when you look in the mirror - i know it's

> vanity but ....

Good heavens! You've only been home a few days. Take your drugs like a

good girl and don't worry about needing them. That's what they're for.

Nobody gets awards for NOT taking them :-D You won't get addicted.

Feeling fragile is OK. You just had major surgery, so get lots of rest and

take care of yourself. You may not be able to see what's going on, but

your body is working hard to heal itself.

> Also wishing i could taste food - horrible taste in my mouth -

> metallic coating is the best way i can describe it. I'm eating cause

> i know i have to but wish i could taste

> Anyway - sorry for moaning - i know it takes time and i am happy that

> the c-toma was removed completely. Each day things gets better

> i haven't caught up yet on the last weeks posts but hope every one

> who was due surgery had happy stories

Moan away! That's what we're here for. Hopefully, the nasty taste will go

away soon. Part of the appetite loss is from anesthesia and probably IV

antibiotics. Your taste nerve may have been stretched or rearranged

during surgery. Someone mentioned that lemon made the nasty taste go

away. It may be worth a try.

Glad to here you're new, improved and c-toma free! We all wish you the

best.

Diane Brunet

http://www.sassysuds.com

November 13, 2003

Ann,

Im glad to hear that the surgery was a success and its behind you now. Get lots of rest and take care of yourself. Best wishes for a speedy recovery...!!!

Sincerely,

Renonda

November 13, 2003

Hi Ann

I very glad you made and they got rid of the ctoma this time.

Open cavity usually refrers to a full radical mastoidectomy where the ear canal is widened and the ossicles and eardrum are removed (if they were ever present). Basically it leaves an open space wider open space between the mastoid, middle ear and ear canal which needs to be suctioned out on a regular basis. That used to be it but it's possible now to reverse an open cavity and close up the ear again. I had that procedure done last month.

Good luck with the recovery

Phil

I'm back - success but some questions ????

Hi all,I'm back - went in last week for my second surgery this year (failed attempt in October). Went in Tuesday last (eventually got a bed) - usual blood tests on Tuesday. On Wednesday had a cerebral angiogram (quite an experience but facinating because I could see all the blood vessels in my head on the monitor) - also had a ct scan - very sick that evening - they told me it was the dye they used to show up the vessals on the monitors. Quick talk with surgeon (and yes he was an ear doc only !!) - he said all my scans looked normal (previous surgery was halted because they hit a vein and too much blood loss). Went down on Thursday for surgery at 12:45 - lasted just under five hours. Don't remember waking up in the recovery room. Spent the night been sick - room would not stop spining. But Friday morning came and i stopped been sick. Surgeon came in and told me that op was a success. C-toma was extensive - it had exposed the dura (brain) and that is what caused the bleeding in my first surgery. But said the surgery was a success because all the c-toma was removed. Said i had an open cavity. Still been out of it (and totally freaked when the brain exposure subject came up !!), i forgot all my questions - so any help with what an open cavity means ? I go back in three weeks time for the checkup and i assume removal of the packaging. I don't know yet, how my hearing is effected.I got home on Sunday but recovery is not as quick this time. Feeling very fragile and totally reliant on pain killers - when does the pain stop. I have clips and stitches - which i get out tomorrow (by my local gp - hospital is over 3 hours away so they said my gp could remove the stitches). It's lucky i have long hair - well over an inch shaved this time - so some times feeling down - do any of you ever feel like a freak when you look in the mirror - i know it's vanity but ....Also wishing i could taste food - horrible taste in my mouth - metallic coating is the best way i can describe it. I'm eating cause i know i have to but wish i could tasteAnyway - sorry for moaning - i know it takes time and i am happy that the c-toma was removed completely. Each day things gets betteri haven't caught up yet on the last weeks posts but hope every one who was due surgery had happy storieslove to all ann.

November 13, 2003

Hi Ann..well done this time!!

I just had the packing removed last week and also had cwd..wasn't

prepared for the bigger ear'ole..it's like a cave down there and my

husband thinks he's seen some bats flying around!!(anyone..does this

get smaller or stay soo big!?)

Just to let you know....have my hearing test next week and I know I

have decreased hearing. I was really lucky with the shaved head bit

as the surgeon braided my hair before hand and only shaved the wispy

bits..I really do think she is a great, thoughtful consultant!!

Anyway Ann..here's wishing you a good recovery, plenty of rest and

stargate programmes!!!

love melanie

- In cholesteatoma , " ann_stargazer "

<ann_stargazer@y...> wrote:

> Hi all,

>

> I'm back - went in last week for my second surgery this year

(failed

> attempt in October). Went in Tuesday last (eventually got a bed) -

> usual blood tests on Tuesday. On Wednesday had a cerebral

angiogram

> (quite an experience but facinating because I could see all the

blood

> vessels in my head on the monitor) - also had a ct scan - very sick

> that evening - they told me it was the dye they used to show up the

> vessals on the monitors. Quick talk with surgeon (and yes he was

an

> ear doc only !!) - he said all my scans looked normal (previous

> surgery was halted because they hit a vein and too much blood

loss).

> Went down on Thursday for surgery at 12:45 - lasted just under five

> hours. Don't remember waking up in the recovery room. Spent the

> night been sick - room would not stop spining. But Friday morning

> came and i stopped been sick. Surgeon came in and told me that op

> was a success. C-toma was extensive - it had exposed the dura

> (brain) and that is what caused the bleeding in my first surgery.

> But said the surgery was a success because all the c-toma was

> removed. Said i had an open cavity. Still been out of it (and

> totally freaked when the brain exposure subject came up !!), i

forgot

> all my questions - so any help with what an open cavity means ? I

go

> back in three weeks time for the checkup and i assume removal of

the

> packaging. I don't know yet, how my hearing is effected.

> I got home on Sunday but recovery is not as quick this time.

Feeling

> very fragile and totally reliant on pain killers - when does the

pain

> stop. I have clips and stitches - which i get out tomorrow (by my

> local gp - hospital is over 3 hours away so they said my gp could

> remove the stitches). It's lucky i have long hair - well over an

> inch shaved this time - so some times feeling down - do any of you

> ever feel like a freak when you look in the mirror - i know it's

> vanity but ....

> Also wishing i could taste food - horrible taste in my mouth -

> metallic coating is the best way i can describe it. I'm eating

cause

> i know i have to but wish i could taste

> Anyway - sorry for moaning - i know it takes time and i am happy

that

> the c-toma was removed completely. Each day things gets better

> i haven't caught up yet on the last weeks posts but hope every one

> who was due surgery had happy stories

>

> love to all

>

> ann.

November 13, 2003

Hi,

thanks for all the replies. feeling much better tonight. i actually got of my butt today and went to a tax seminar (one of those things that my work had arranged months ago). it was great to get out (tax talk was quite boring !!!)but no one noticed - used a head scarf as a hair band - real trendy (one advantage to been female - sorry guys !!!). went to my local gp this evening to get out the clips and stitches but she didn't have the gadget to remove the clips - sent me up to my the a & e section of my local hospital - got them all removed. feeling much more human tonight. wee bit tired so going to rest for the week end and may be go into work on monday for a while. - what was it like getting out the packaging - do they just pull ?

thanks again and best wishes to everyone

annmelanie <melanie_haves@...> wrote:

Hi Ann..well done this time!! I just had the packing removed last week and also had cwd..wasn't prepared for the bigger ear'ole..it's like a cave down there and my husband thinks he's seen some bats flying around!!(anyone..does this get smaller or stay soo big!?) Just to let you know....have my hearing test next week and I know I have decreased hearing. I was really lucky with the shaved head bit as the surgeon braided my hair before hand and only shaved the wispy bits..I really do think she is a great, thoughtful consultant!!Anyway Ann..here's wishing you a good recovery, plenty of rest and stargate programmes!!!love melanie- In cholesteatoma , "ann_stargazer" <ann_stargazer@y...> wrote:> Hi all,> > I'm back - went in last week for my second surgery this year (failed >

attempt in October). Went in Tuesday last (eventually got a bed) - > usual blood tests on Tuesday. On Wednesday had a cerebral angiogram > (quite an experience but facinating because I could see all the blood > vessels in my head on the monitor) - also had a ct scan - very sick > that evening - they told me it was the dye they used to show up the > vessals on the monitors. Quick talk with surgeon (and yes he was an > ear doc only !!) - he said all my scans looked normal (previous > surgery was halted because they hit a vein and too much blood loss). > Went down on Thursday for surgery at 12:45 - lasted just under five > hours. Don't remember waking up in the recovery room. Spent the > night been sick - room would not stop spining. But Friday morning > came and i stopped been sick. Surgeon came in and told me that op > was a

success. C-toma was extensive - it had exposed the dura > (brain) and that is what caused the bleeding in my first surgery. > But said the surgery was a success because all the c-toma was > removed. Said i had an open cavity. Still been out of it (and > totally freaked when the brain exposure subject came up !!), i forgot > all my questions - so any help with what an open cavity means ? I go > back in three weeks time for the checkup and i assume removal of the > packaging. I don't know yet, how my hearing is effected.> I got home on Sunday but recovery is not as quick this time. Feeling > very fragile and totally reliant on pain killers - when does the pain > stop. I have clips and stitches - which i get out tomorrow (by my > local gp - hospital is over 3 hours away so they said my gp could > remove the stitches). It's lucky i have long

hair - well over an > inch shaved this time - so some times feeling down - do any of you > ever feel like a freak when you look in the mirror - i know it's > vanity but ....> Also wishing i could taste food - horrible taste in my mouth - > metallic coating is the best way i can describe it. I'm eating cause > i know i have to but wish i could taste> Anyway - sorry for moaning - i know it takes time and i am happy that > the c-toma was removed completely. Each day things gets better> i haven't caught up yet on the last weeks posts but hope every one > who was due surgery had happy stories> > love to all > > ann.

November 13, 2003

Hi Ann

Congratulations on coming through thus far and well done on getting out! :-)

I remember when I had my packing out (three years ago), my surgeon told me he was going to remove it and barely had he started, when I said 'Ouch' and he stopped immediately. He asked if it had really hurt, and I told him (honestly) that it hadn't hurt at all, but I had been told it would, so I was prepared for it to hurt. LOL! He told me, if it hurt, he would stop immediately I told him to. I don't recall it hurting - there was some discomfort because it had dried in my ear, but I honestly don't recall it actually hurting; we didn't have to stop. One option I was given was to have it removed under anaesthetic, but that wasn't necessary; all this, and I'm allergic to pain: I break out in tears and start shaking! ;-)

All the best

Kazz

xx

-----Original Message-----From: ann [mailto:ann_stargazer@...]Sent: 13 November 2003 23:19cholesteatoma Subject: Re: Re: I'm back - success but some questions ????

Hi,

thanks for all the replies. feeling much better tonight. i actually got of my butt today and went to a tax seminar (one of those things that my work had arranged months ago). it was great to get out (tax talk was quite boring !!!)but no one noticed - used a head scarf as a hair band - real trendy (one advantage to been female - sorry guys !!!). went to my local gp this evening to get out the clips and stitches but she didn't have the gadget to remove the clips - sent me up to my the a & e section of my local hospital - got them all removed. feeling much more human tonight. wee bit tired so going to rest for the week end and may be go into work on monday for a while. - what was it like getting out the packaging - do they just pull ?

thanks again and best wishes to everyone

annmelanie <melanie_haves@...> wrote:

Hi Ann..well done this time!! I just had the packing removed last week and also had cwd..wasn't prepared for the bigger ear'ole..it's like a cave down there and my husband thinks he's seen some bats flying around!!(anyone..does this get smaller or stay soo big!?) Just to let you know....have my hearing test next week and I know I have decreased hearing. I was really lucky with the shaved head bit as the surgeon braided my hair before hand and only shaved the wispy bits..I really do think she is a great, thoughtful consultant!!Anyway Ann..here's wishing you a good recovery, plenty of rest and stargate programmes!!!love melanie- In cholesteatoma , "ann_stargazer" <ann_stargazer@y...> wrote:> Hi all,> > I'm back - went in last week for my second surgery this year (failed > attempt in October). Went in Tuesday last (eventually got a bed) - > usual blood tests on Tuesday. On Wednesday had a cerebral angiogram > (quite an experience but facinating because I could see all the blood > vessels in my head on the monitor) - also had a ct scan - very sick > that evening - they told me it was the dye they used to show up the > vessals on the monitors. Quick talk with surgeon (and yes he was an > ear doc only !!) - he said all my scans looked normal (previous > surgery was halted because they hit a vein and too much blood loss). > Went down on Thursday for surgery at 12:45 - lasted just under five > hours. Don't remember waking up in the recovery room. Spent the > night been sick - room would not stop spining. But Friday morning > came and i stopped been sick. Surgeon came in and told me that op > was a success. C-toma was extensive - it had exposed the dura > (brain) and that is what caused the bleeding in my first surgery. > But said the surgery was a success because all the c-toma was > removed. Said i had an open cavity. Still been out of it (and > totally freaked when the brain exposure subject came up !!), i forgot > all my questions - so any help with what an open cavity means ? I go > back in three weeks time for the checkup and i assume removal of the > packaging. I don't know yet, how my hearing is effected.> I got home on Sunday but recovery is not as quick this time. Feeling > very fragile and totally reliant on pain killers - when does the pain > stop. I have clips and stitches - which i get out tomorrow (by my > local gp - hospital is over 3 hours away so they said my gp could > remove the stitches). It's lucky i have long hair - well over an > inch shaved this time - so some times feeling down - do any of you > ever feel like a freak when you look in the mirror - i know it's > vanity but ....> Also wishing i could taste food - horrible taste in my mouth - > metallic coating is the best way i can describe it. I'm eating cause > i know i have to but wish i could taste> Anyway - sorry for moaning - i know it takes time and i am happy that > the c-toma was removed completely. Each day things gets better> i haven't caught up yet on the last weeks posts but hope every one > who was due surgery had happy stories> > love to all > > ann.

November 13, 2003

Ann, I know exactly how you feel. I'm still weaning myself off of the pain meds. And I do feel like a punk when I look in the mirror.

You know what I did? I went to AC and got some head scarves in all different colors and patterns. That way when I go out in public I just put one of those on. Of course the last time I was really in public was when I was discharged from the hospital. The nurses all loved the scarf I was wearing .

K

I'm back - success but some questions ????

Hi all,I'm back - went in last week for my second surgery this year (failed attempt in October). Went in Tuesday last (eventually got a bed) - usual blood tests on Tuesday. On Wednesday had a cerebral angiogram (quite an experience but facinating because I could see all the blood vessels in my head on the monitor) - also had a ct scan - very sick that evening - they told me it was the dye they used to show up the vessals on the monitors. Quick talk with surgeon (and yes he was an ear doc only !!) - he said all my scans looked normal (previous surgery was halted because they hit a vein and too much blood loss). Went down on Thursday for surgery at 12:45 - lasted just under five hours. Don't remember waking up in the recovery room. Spent the night been sick - room would not stop spining. But Friday morning came and i stopped been sick. Surgeon came in and told me that op was a success. C-toma was extensive - it had exposed the dura (brain) and that is what caused the bleeding in my first surgery. But said the surgery was a success because all the c-toma was removed. Said i had an open cavity. Still been out of it (and totally freaked when the brain exposure subject came up !!), i forgot all my questions - so any help with what an open cavity means ? I go back in three weeks time for the checkup and i assume removal of the packaging. I don't know yet, how my hearing is effected.I got home on Sunday but recovery is not as quick this time. Feeling very fragile and totally reliant on pain killers - when does the pain stop. I have clips and stitches - which i get out tomorrow (by my local gp - hospital is over 3 hours away so they said my gp could remove the stitches). It's lucky i have long hair - well over an inch shaved this time - so some times feeling down - do any of you ever feel like a freak when you look in the mirror - i know it's vanity but ....Also wishing i could taste food - horrible taste in my mouth - metallic coating is the best way i can describe it. I'm eating cause i know i have to but wish i could tasteAnyway - sorry for moaning - i know it takes time and i am happy that the c-toma was removed completely. Each day things gets betteri haven't caught up yet on the last weeks posts but hope every one who was due surgery had happy storieslove to all ann.

December 11, 2003

Ann, I am so glad you were OK. I was worried and just saw your

posting. It's been over a month by now, so I hope that you got over

the pain and those drugs (I have a love hate thing with them). Best

sleep but once your off, you wish that you could sleep like that.

Take care and glad you are OK. No info on the hole in the dura.

Haven't gotten that bad yet!

-- In cholesteatoma , " ann_stargazer "