Upcoming surgery

[Guest guest]

I am one that has experienced hair loss. I am still experiencing it. Last weekend I finally bought some Nutri-ox shampoo and leave in treatment from Sally's beauty supply. I think it is helping because I have noticed less loss. It stimulates the scalp and feels pretty good. Some say the loss is because you aren't getting enough protein, but from the beginning I have made sure I did. I think some people just react this way to the anesthesia or just plain having surgery. Of course some can have a lack of nutrients like zinc and it is always good to take your vitamins.

M.

Dr. Aceves Post Op Coordinator

D.O.B 3/1/05

280/192/155 -88lbs

http://www.tracyslapband.com

From: [mailto: ] On Behalf Of sweetlisa211Sent: Thursday, October 13, 2005 10:24 PM Subject: Upcoming surgery

Hi all - I have thought about this surgery for what seems like ever, and now that I made the decision and gathered up the funds, my date is next week and I can't believe how fast it's coming! I received an email today saying they received my deposit, and they have my forms and flight schedule, so I am good to go. I am very excited and I have no fears about the surgery (well, maybe a little after reading Robin's experience! haha) but now I am wondering about things like my hair and skin. Have any of you experienced hair loss due after the surgery? Or dry and itchy skin? I read somewhere that shea butter is great for the skin, but I've never used it. I guess I am more concerned with my hair!!Any info?

[Guest guest]

Hi all thankyou all for your messages of support I really appreciate them from all of you, its a great comfort to know I am not the only one and there are others going through this that can give support. Since my doctor writing to the surgeon to push my operation forward I received a phonecall from the hospital yesterday saying my surgery is booked for the 22nd november. Although I would like to get my surgery done and out of the way so I can hopefully recover from this horrible "thing" I am really nervous about the surgery. I couldnt sleep at all last night and have another 2 weeks to go yet!! I

live in south wales uk so my surgery will be in the university hospital of wales in cardiff. I have had other surgeries before including my tonsils being removed and exploratory ear surgeries but I am totaly dreading this operation. I was told it could take 4-6 hours depending on how extent the cholesteatoma is and told of all the risks that are terrifying me. If anyone has any "nice" or not horror experiences please could i hear from you.many thanks once againLeeah Davies

[Guest guest]

Hi Leeah,

I have been meaning to reply to this post for several days - sorry to take so

long !

I had my surgery about ten years ago. I was " out " for about three hours or so;

when I came round I had a bandage around my head and I was very sleepy, but NO

PAIN and thankfully no dizziness either. I stayed in the hospital overnight and

was discharged the following morning, after the bandage had been removed. My

ear was sticking out from the side of my head and I had three or four stitches

behind it, apart from that the only other sign was the BIPP dressing packed into

the ear (smelt strongly of ether so lots of after-shave needed to cover it up,

lol !) I felt well enough to go to the pub the same evening - after all, no-one

had told me not to.

The swelling behind my ear subsided after a few days, and the stitches were

removed in my GP's surgery about 10 days after the op - they were the

non-dissolving type. The dressing was removed at my post-op appointment which

was either two or three weeks after the operation, I really can't remember. The

only symptoms I had post-surgery were noises in the ear, there was never any

pain. Oh, and I couldn't taste properly on one side of my tongue for a few

months until (as my surgeon put it) my body had learned a way around the damaged

nerve!

I went back a year later for the " second look " operation and no further

cholesteatoma was discovered, so the surgeon took the opportunity to reconstruct

the ear to help my hearing. Sadly the reconstruction didn't make an awful lot of

difference, but I have been free of disease in that ear ever since so I'm not

complaining.

I guess what I'm really saying is " no worries! " Yes it is a lengthy procedure,

but many patients tolerate it very well. I will, though, come clean and admit

that I worked in a hospital for six or seven years after I left school, so the

actual environment didn't hold any terrors for me.

,

Milton Keynes, UK

>

> Hi all

> thankyou all for your messages of support I really appreciate them from all

of

> you, its a great comfort to know I am not the only one and there are others

> going through this that can give support. Since my doctor writing to the

surgeon

> to push my operation forward I received a phonecall from the hospital

yesterday

> saying my surgery is booked for the 22nd november. Although I would like to

get

> my surgery done and out of the way so I can hopefully recover from this

horrible

> " thing " I am really nervous about the surgery. I couldnt sleep at all last

> night and have another 2 weeks to go yet!! I live in south wales uk so my

> surgery will be in the university hospital of wales in cardiff. I have had

other

> surgeries before including my tonsils being removed and exploratory ear

> surgeries but I am totaly dreading this operation. I was told it could take

4-6

> hours depending on how extent the cholesteatoma is and told of all the risks

> that are terrifying me. If anyone has any " nice " or not horror experiences

> please could i hear from you.

> many thanks once again

> Leeah Davies

>

[Guest guest]

I am scheduled for C-Toma surgery a week from today. Anything in particular you

folks think I should be aware of? I have browsed through some posts in this

group and have found some helpful info. How about food post-op? Any

suggestions on what to buy at the grocery store. Should I plan on soft foods or

is that no big deal? The closer I get the more anxious I become. Not something

I'm really looking forward to.

Suffolk, VA.

[Guest guest]

I have had a total of 4 surgeries for cholesteatoma. 3 of those within the last year...the reason was because I had let mine go so long that I had a really bad infection so they had to do the surgeries in phases...as the infection healed they could go in and remove more. There was a little bit hiding behind my eardrum they didn't see so in March when I went for my follow up they told me I had to have another surgery. So April 20, 2011 was my last surgery. I pray that this is it but with this disease there is no 100% curable as my surgeon puts it. Right now my ear is 100% safe according to my last visit with him last week. 

There are some things that when I joined this group people helped and suggested things that worked for them and let me tell you how much these things helped. I wasn't able to lay down the first couple of days after surgery so what helped me was getting a wedge pillow. This kept me elevated but I was able to sleep. I also got a toddler neck pillow that fit perfectly around my ear so that if I had to lay on that side it didn't hurt. I am using it here after this last surgery too. Love that thing!! I stocked up on soft foods...stay away from chewy things as your jaw on that side might be tender the first few days. I also brought a pillow with me for the ride home. It was about an hour for me not sure how close you are so I wanted to be comfy...one of the biggest things that was suggested was wearing a button shirt...after surgery the last thing you want is to pull a t-shirt over your head and have to figure out how to go around your ear...I also stocked up on saltines and soups. 

Best of luck to you. I know how you feel...I wanted my first surgery at 15 to be my last for this...here I am 20 yrs later and still being treated...this disease has been hard for me to accept but my sister has brain cancer and is still fighting so I know if she can do it...so can I. We are all fighters.

JenniOn Wed, May 11, 2011 at 10:53 AM, Theresa <sydwee915@...> wrote:

 

I too am scheduled for surgery on June 15 and I'm very nervous . I'm not sure what to expect . It scares me when I read people asking, what number surgery is this for you. Does that mean this won't be it? I thought that once I got this surgery and recovered that would be it. Please any info anyone can give me, words of encouragment, suggestions, ANYTHING I'd love to hear from you. Is there something I should have prepared here at home for after my surgery? Will I be sleeping the day away?

[Guest guest]

My surgeon stitched my ear canal completely shut, since I'm deaf on that side anyway because my cochlea was removed 10 years ago. The benefit of this is that he says I probably won't need another surgery for 10-15 years. This is because the ctoma grows faster when exposed to water and bacteria from the outside. The downside is that now I need to have annual MRIs to monitor the growth, because now there is no other way to see in there!

[Guest guest]

My little girl is one of those that has had MANY ear surgeries, starting when

she was 8. Both ears have had Cholesteatomas & repeats of them plus on-going

reconstruction. She is now almost 9 & needs another as soon as they can get it

scheduled. She has an ear infection right now as one ear drum has retracted & is

more open for infections. However, that said, this Cholesteatoma stuff seems

very different for each person. She isn't even phased by surgery or it's

aftermath. Never a tear. Never a complaint. However, I try to brush her hair

any given day & she is screaming bloody murder. LOL Her biggest issue is the

hearing loss she suffers from. I'm sure this is more difficult for adults but

as a mom, I sure wish I could have this instead of her!

Best luck with this,

Donna DeBoer

>

>

> From: Theresa <sydwee915@...>

> Subject: upcoming surgery

> cholesteatoma

> Date: Wednesday, May 11, 2011, 5:53 PM

>

>

> I too am scheduled for surgery on June 15 and I'm very nervous . I'm not sure

what to expect . It scares me when I read people asking, what number surgery is

this for you.  Does that mean this won't be it?  I thought that once I got this

surgery and recovered that would be it.  Please any info anyone can give me,

words of encouragment, suggestions, ANYTHING  I'd love to hear from you.  Is

there something I should have prepared here at home for after my surgery?  Will

I be sleeping the day away? 

>

>

>

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

>

>

[Guest guest]

Most people require at least one " second look " surgery to make sure there is no residual cholesteatoma. If not, that is a good time to do any necessary rebuilding of hearing structure.

 

Our little girl, Chloe, is also one of those many surgeries kids. She is going for a second look which will actually be her 14th surgery--9th Tympanomastoidectomy. We are so hoping that there will be nothing there!!!

 

There was no visible mass on the MRI she just had, but with her history, since she has never had a cholesteatoma free ear, and because she needs some repair work anyway, the surgeon would like to get in there and make sure it really is all gone...to be honest, I will be more shocked if it is gone than if it was there in a huge mass--but that's just been our crazy little story!

 

As awful as that may sound, and I do remember my horror the first time I had heard of a little boy who had required 11 surgeries, I really can't complain. She is doing great! She is a normal 8yo girl (with a hearing aid), and takes the surgery in stride. She was actually way more worried about the MRI last month, since it was new waters for her. She has complete trust in our great surgeon and just jumps up on the table and goes to sleep when it is time for surgery. We would not have chosen this for her, but her experiences have made a huge difference in who she is.

 

Religion alert:) We thank God for what He has done in our lives through this journey. Just like Chloe trusts that surgeon to do the best thing for her in the OR, we are able to trust God to care for us in this difficult place.

 

Theresa, I hope you do only need the one suregery, and will be feeling great from then on!

Blessings,

On Wed, May 11, 2011 at 9:36 PM, Donna <Donna_is@...> wrote:

My little girl is one of those that has had MANY ear surgeries, starting when she was 8. Both ears have had Cholesteatomas & repeats of them plus on-going reconstruction. She is now almost 9 & needs another as soon as they can get it scheduled. She has an ear infection right now as one ear drum has retracted & is more open for infections. However, that said, this Cholesteatoma stuff seems very different for each person. She isn't even phased by surgery or it's aftermath.  Never a tear. Never a complaint. However, I try to brush her hair any given day & she is screaming bloody murder.  LOL Her biggest issue is the hearing loss she suffers from. I'm sure  this is more difficult for adults but as a mom, I sure wish I could have this instead of her!

Best luck with this,Donna DeBoer

>>> From: Theresa <sydwee915@...>

> Subject: upcoming surgery> cholesteatoma > Date: Wednesday, May 11, 2011, 5:53 PM>>

> I too am scheduled for surgery on June 15 and I'm very nervous . I'm not sure what to expect . It scares me when I read people asking, what number surgery is this for you.  Does that mean this won't be it?  I thought that once I got this surgery and recovered that would be it.  Please any info anyone can give me, words of encouragment, suggestions, ANYTHING  I'd love to hear from you.  Is there something I should have prepared here at home for after my surgery?  Will I be sleeping the day away? 

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

[Guest guest]

REad from the following link to knwo better about the disese

The first is from the university website:  http://www.entnet.org/HealthInformation/cholesteatoma.cfm. 

http://www.lhh.org/about_hearing_loss/living_with_hearing_loss.pdf. 

http://www.orlnews.org/links/picsnvideo/video/video_otology.php

http://www.emedicine.com/ENT/topic220.htm

 

Good luck

Dr. Arun Gupta, ENT Srugeon,India

On Wed, May 11, 2011 at 11:23 PM, Theresa <sydwee915@...> wrote:

 

I too am scheduled for surgery on June 15 and I'm very nervous . I'm not sure what to expect . It scares me when I read people asking, what number surgery is this for you. Does that mean this won't be it? I thought that once I got this surgery and recovered that would be it. Please any info anyone can give me, words of encouragment, suggestions, ANYTHING I'd love to hear from you. Is there something I should have prepared here at home for after my surgery? Will I be sleeping the day away?

[Guest guest]

for those of you who have had this surgery . . . what can i expect after the

surgery? will i be in pain for days? will i be all drugged out and pretty much

sleeping the rest of the day after surgery? I have two young boys, will loud

noises bother me? i just want to be prepared.

for those of you who have had multiple surgeries . . .why did you have them?

can i expect that i'll need more surgeries? how far apart were the surgeries?

I'm filled with questions!!! this is all so new to me!!!

>

[Guest guest]

,

Chloe sounds like my JinMei who has had about 20 surgeries. She isn't bothered

by surgery at all. She skips down the hall, jumps on the table, puts on the

mask, & goes with it. She has a cleft palate as well so that has counted for a

lot of her surgeries and she too seems to have everything go wrong that can. Yet

she doesn't seem to be phased by any of it. She uses 2 hearing aidesbut is a

VERY activie girl. Today she got back from a 2 day 14 mile hike/camp out with

her class. She was still running in circles around everyone when the rest looked

like they could hardly take even one more step.

By the way, I have a Zoe & a Cleo (who is ALWAYS getting called Chloe.) Where do

you get your medical care? We live in Alaska but go to Seattle Children's

Hospital.

Donna DeBoer

> > >

> > >

> > > From: Theresa <sydwee915@>

> > > Subject: upcoming surgery

> > > cholesteatoma

> > > Date: Wednesday, May 11, 2011, 5:53 PM

> > >

> > >

> > > I too am scheduled for surgery on June 15 and I'm very nervous . I'm not

> > sure what to expect . It scares me when I read people asking, what number

> > surgery is this for you. Does that mean this won't be it? I thought that

> > once I got this surgery and recovered that would be it. Please any info

> > anyone can give me, words of encouragment, suggestions, ANYTHING I'd love

> > to hear from you. Is there something I should have prepared here at home

> > for after my surgery? Will I be sleeping the day away?

> > >

> > >

> > >

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

> > >

> > >

[Guest guest]

Never seen people doing total obliteration like urs

On Thu, May 12, 2011 at 12:39 AM, Raphael Ya'akov Migdalim <shemaraphael@...> wrote:

 

My surgeon stitched my ear canal completely shut, since I'm deaf on that side anyway because my cochlea was removed 10 years ago.  The benefit of this is that he says I probably won't need another surgery for 10-15 years.  This is because the ctoma grows faster when exposed to water and bacteria from the outside.  The downside is that now I need to have annual MRIs to monitor the growth, because now there is no other way to see in there!

[Guest guest]

I'll let someone else address the how will I feel question as my 8 yr old feels

back to normal within hours. Adults deal with a very different outcome. She has

had many surgeries because generally a follow up second look is needed to make

sure all is well, the masses grow back & need to be removed, and to perform

reconstruction if needed. JinMei has had reoccurences of the cholesteatomas in

both ears, gotten ear drums grafted in & then had them fail & regrafted in a few

times, and had titanium grafted in to replace the bones but then lost them due

to Cholesteatomas growing back. I wonder if that is the flip side to not

suffering after surgery. That perhaps kids have the cholesteatomas grow back

more often? None of this means you will have any problems at all.

JinMei sometimes wants some regular Tylenol once or twice after surgery. Noises

don't bother her. We usually fly home to Alaska within a couple of days & she

immediately goes back to school with the only worry is to make sure she doesn't

get her ear hit. But again, I recommend you hear from other adults.

Best Wishes,

Donna DeBoer

>

> for those of you who have had this surgery . . . what can i expect after the

surgery? will i be in pain for days? will i be all drugged out and pretty much

sleeping the rest of the day after surgery? I have two young boys, will loud

noises bother me? i just want to be prepared.

>

> for those of you who have had multiple surgeries . . .why did you have them?

can i expect that i'll need more surgeries? how far apart were the surgeries?

I'm filled with questions!!! this is all so new to me!!!

> >

>

[Guest guest]

Donna,

I think you guys joined the group about the same time we did. We had been doing it alone for a couple of years, never having heard of anyone else having this, when Chloe got a horible infection about five weeks post op from her sixth surgery and ended up having several emergency surgeries, spending two weeks in the hospital and several months with a PICC line for crazy IV drugs at home. I was stuck at home and in hospitals, so finding this group was like a life line for us! Nothing terrible like that has happened since, yay!

 

Chloe is like that about surgery. She feels very much in control, and makes a lot of her own decisions. She doesn't love the mask, although she has always jumped on the table and taken it anyway. Last surgery, she asked the anesthesiologist to just give her an IV, and he agreed. She is hoping to get the same deal again. This is probably the first surgery where I am thinking, maybe this could be IT for a long while...maybe this is the one with NO cholesteatoma, but that would shock us all a lot more than hearing there is some still in there.

 

Chloe also had a bifid uvula, which I guess is considered a partial cleft palate. I am pretty sure that is all related in the delevopment in utero.

 

She is called " cleo " all the time:)

On Thu, May 12, 2011 at 11:36 PM, Donna <Donna_is@...> wrote:

,Chloe sounds like my JinMei who has had about 20 surgeries. She isn't bothered by surgery at all.  She skips down the hall, jumps on the table, puts on the mask, & goes with it.  She has a cleft palate as well so that has counted for a lot of her surgeries and she too seems to have everything go wrong that can. Yet she doesn't seem to be phased by any of it. She uses 2 hearing aidesbut is a VERY activie girl. Today she got back from a 2 day 14 mile hike/camp out with her class. She was still running in circles around everyone when the rest looked like they could hardly take even one more step.

By the way, I have a Zoe & a Cleo (who is ALWAYS getting called Chloe.) Where do you get your medical care? We live in Alaska but go to Seattle Children's Hospital.Donna DeBoer

> > >> > >> > > From: Theresa <sydwee915@>> >  > Subject: upcoming surgery> > > cholesteatoma

> > > Date: Wednesday, May 11, 2011, 5:53 PM> > >> > >> > > I too am scheduled for surgery on June 15 and I'm very nervous . I'm not> > sure what to expect . It scares me when I read people asking, what number

> > surgery is this for you.  Does that mean this won't be it?  I thought that> > once I got this surgery and recovered that would be it.  Please any info> > anyone can give me, words of encouragment, suggestions, ANYTHING  I'd love

> > to hear from you.  Is there something I should have prepared here at home> > for after my surgery?  Will I be sleeping the day away?> > >> > >> > >> > > ------------------------------------

> > >> > >

[Guest guest]

We've got a date now for JinMei's 10th ear surgery. June 2nd. She's got 2 more

cleft related surgeries due now as well. It feels like we'll never see the end

of all of this. I don't know what I would do if she fought it. I keep thinking

I'm doing something wrong.

Donna DeBoer

> > > > >

> > > > >

> > > > > From: Theresa <sydwee915@>

> > > > > Subject: upcoming surgery

> > > > > cholesteatoma

> > > > > Date: Wednesday, May 11, 2011, 5:53 PM

> > > > >

> > > > >

> > > > > I too am scheduled for surgery on June 15 and I'm very nervous . I'm

> > not

> > > > sure what to expect . It scares me when I read people asking, what

> > number

> > > > surgery is this for you. Does that mean this won't be it? I thought

> > that

> > > > once I got this surgery and recovered that would be it. Please any

> > info

> > > > anyone can give me, words of encouragment, suggestions, ANYTHING I'd

> > love

> > > > to hear from you. Is there something I should have prepared here at

> > home

> > > > for after my surgery? Will I be sleeping the day away?

> > > > >

> > > > >

> > > > >

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

> > > > >

> > > > >