post op questions

[Guest guest]

,

I would guess it is high because you are off medication-- it would

probably have been that high or higher before surgery. Much will

change in your physical health over the next many months, so you may

get to a point where you don't need BP medication. High blood

pressure is not just caused by being overweight, so there is a

possibility that you will need the medication no matter what you

weigh.

Hang in there.

> Hi everyone.. W here. I am 22 days post op, 10/16, and have

lost 16

> lbs. I quit taking my BP meds my day of sugery and my present BP is

running

> 180/100 which is very high. I called Dana today from my Drs office,

and she

> said I may have to go on some now and then as my weight drops,

then my BP

> may also. I was just wondering if anyone knew what is making my BP

rise. It

> was usually around 130/80 before surgery on meds. It just bothers

me that it

> is high enough to give me a stroke. I am 5'7 and present 267 down

from 283.

> Thanks for any input.

>

>

>

[Guest guest]

,

I am of course am NOT a doctor or a nurse but --- I am still on blood

pressure meds. Some people are simply hypertensive! I have a family

history of it and taking a pill for me is not a big problem. Check with

your PCP and follow his or her instructions PLEASE!

in GA

> post op questions

>

>

> Hi everyone.. W here. I am 22 days post op, 10/16, and

> have lost 16

> lbs. I quit taking my BP meds my day of sugery and my present

> BP is running

> 180/100 which is very high. I called Dana today from my Drs

> office, and she

> said I may have to go on some now and then as my weight

> drops, then my BP

> may also. I was just wondering if anyone knew what is making

> my BP rise. It

> was usually around 130/80 before surgery on meds. It just

> bothers me that it

> is high enough to give me a stroke. I am 5'7 and present 267

> down from 283.

> Thanks for any input.

>

>

>

[Guest guest]

I posted my whole story because it felt good to get it out, but it must

have been too long cause nobody read it. I asked some questions at the

end I was hoping to have answered. When will I get my sense of taste

back? I just took the tape off yesterday. Should the incision be a bit

sore today? What should I expect in the near future and for the

recronstructive surgery next year? I get my packing removed in mid

November, after six weeks. Will I get some of my hearing back when they

take it out? I can't really hear out of that ear at all now. I am

afraid of recurence. Does this happen often? My right ear has started

to throb now. How often does it happen in both ears? If you need more

info, refer to my earlier posting, my long story so far. Thanks, Beth

[Guest guest]

Thanks for your help! I thought I knew all I needed to know before,

but of course I come up with all these questions now, when my dr. is

being difficult to get a hold of. I will definately try washing with

peroxide. I kind of wondered if I should be cleaning it with

something better than soap and water. And its good to know that I'll

get my taste back eventually, though I'm a bit impatient - I'm not

eating very well because everything tastes like cardboard!

-Beth

--- In cholesteatoma , "

[Guest guest]

Beth,

Try Thai Curry Chicken. It has a creamier light brown to kind of

yellowish sauce. When my taster was off it was even good when most

everything tasted like metal. There is a curry chicken that you can get

in most Chinese restaurants, but it has a watery dark brown sauce that

is kind of nasty. Make sure it's Thai.

Matt

lyndikhajiit wrote:

>

> Thanks for your help! I thought I knew all I needed to know before,

> but of course I come up with all these questions now, when my dr. is

> being difficult to get a hold of. I will definately try washing with

> peroxide. I kind of wondered if I should be cleaning it with

> something better than soap and water. And its good to know that I'll

> get my taste back eventually, though I'm a bit impatient - I'm not

> eating very well because everything tastes like cardboard!

> -Beth

> --- In cholesteatoma

> <mailto:cholesteatoma%40>, "

[Guest guest]

Janelle, one thing that helped with my nausea was spearmint candy...it worked better for me than the RX for nausea. The pain for me was terrible the first 2 or 3 days as well. But I had tons of pain prior to surgery so the pain after the surgery wasn't anything I couldn't handle. I used a heating pad to help with the pain and it (believe it or not) did wonders for me. I am sure that is the only way I slept the first few nights post surgery. I have a high pain tolerance like you. Had 2 c-sections and never had pain meds with either of those surgeries, had wisdom teeth pulled (all 4 at once) didn't need pain meds, had surgery 4 yrs ago for endometriosis and again no pain meds needed but for my ear surgeries I have had to have pain meds for some reason especially those first few days after surgery. I have had 3 surgeries total. My 4th surgery is coming up on April 20th. I am no professional but there are some very sensitive areas up in that area and maybe something was ultra sensitive after the surgery. My surgeon told me most ctoma's are larger than they expected because it is just to difficult to know unless you go in and see the damage and how large one has grown. I only had that metal taste in my mouth for a couple weeks. I lost all the bones in my ear so cannot comment on that. :-(  Chewing I remember took me a little longer so I did eat softer foods for a few weeks. I got thrush bad from the antibiotics. They had me on strong ones for the MRSA prior to surgery then again after surgery. It was NOT fun. I ate tons of plain yogurt to help with the oral thrush. I know how you feel about going through this again. It is about 6 months for me and I am already having surgery again. I had one in August 2010, Septemeber 2010, and April 2011 now. My first surgery was over 20 yrs ago for this condition and I was just a kid then so don't remember much about it. Hope things get better for you but try that plain yogurt and the spearmint candy. Have you tried saltine crackers too?

Jenni  On Wed, Mar 30, 2011 at 2:18 PM, janelleschnulle <janelleschnulle@...> wrote:

 

hi everyone,

I am 5 days post op. My experience was really awful, and I have a high pain tolerance. It is really interesting to me how some people have few symptoms and others (like me) are quite severe. I could not manage the pain the first 3 days. I had 3 different pain killers called in for me, nothing seemed to touch the pain. I really thought I was prepared for this as I had obsessively researched this and worst case scenarios, etc.. I even had a pre op visit with my surgeon JUST to ask questions, which he mostly dismissed and told me what I was reading on the internet rarely happened, etc... This gave me a false sense of hope, and ironically I seemed to have most of the horrible symptoms he assured me I probably wouldnt. The ctoma ended up being bigger than he had thought so maybe this was why? The core of it was 10 mm in middle ear and also an additional 5 cm attached to the eardrum. I had the two hearing bones removed but he was able to save the stapes. Here are my questions: What is the likelihood the awful metallic taste and dry mouth will go away and when? I can't stand it. And the VERY loud tinnitus. It is so loud I can barely think/concentrate. I had tinnitus prior to surgery but it was quieter. Will the tinnitus most likely go away and how long does that take? My jaw is swollen and painful. How long before I can chew again? Did anyone have nausea and vomiting 4-5 days AFTER surgery? I threw up all day yesterday, which I wasn't expecting on day 4. Did any of you get thrush from the antibiotic? I've never had it before but I do dr said probably from the antibiotic. Is the second op any easier? I'm supposed to have op #2 to restore hearing/second look in 9 months. Which now I'm thinking I'd rather be deaf than go through this again. Sorry so many questions, just hoping for some answers from people who've actually gone through this. Thanks in advance

Janelle

[Guest guest]

I actually had the metallic taste before my first surgery and then it

was gone afterwards. Did anyone else experience that? My favorite

lunchtime food as I waited for the surgery was Thai Curry Chicken - the

creamy orange spicy curry sauce. I still love that stuff - the spices

overpowered everything.

Matt

Kymberlei Putz wrote:

>

> Hi Janelle,

> I am sorry to hear you are having so many diffculties. I I wish I had

> some suggestions for all your questions. I had my third surgery on

> January 12, 2011. The previous surgeries were unevenful. Recovery this

> time was a nightmare to say the least. I had symptoms of nausea,

> bloating and lethargy for 8 weeks. My surgeon was stumped. I had

> numerous lab tests, CT scans, xrays, primary doctor and ER visits. My

> primary doctor was about to send me to a psychiatrist. I knew I wasn't

> crazy so I called my gastro doctor crying in pain. Thankfully he

> firgured out I was experiencing a gallbladder attack. Turns out I had

> 3 gallstones the size of golfballs in my gallbladder. I am not saying

> this is your issue but you may want to have your primary doctor

> consider that something else may be going on with your body.

> As far as the metalic taste in your mouth we are all different. I

> found pepermints worked. Gum helped when I could chew again.

> Good luck,

> Kymberlei

>

>

--

[Guest guest]

Thanks Jenni. the peppermint candy does help me. Also a recliner chair.

actually don't know what I'd have done without it. I can't lie at all on my

good ear, or my bad ear throbs, so my back at an angle is the only way I can

sleep at all. I'm so sorry you are about to go under again. This disease

really sucks. I'm gonna be severely depressed if it comes back. I don't

understand why it still hurts so bad, at day 6 now. Everyone else seems to

bounce back so much quicker, or not have too much pain to begin with. Don't get

me wrong, it is BEARABLE now if I stay on top of the pain meds, but it was so

bad the first 3-4 days I nearly went to the ER many times, and I sat around and

sobbed like a baby. I only was able to sleep a total of about 6 hours in 3

days. I wonder what makes my experience so much worse than most others.... it

is hard not to worry, I keep asking my husband, " do you think I have an

infection? " blah blah blah

did you have tinnitus? mine is so loud I am putting a sound machine next to my

good ear while I sleep to help the ears " sound the same " otherwise the bad ear

is too loud. keep us posted on your upcoming surgery- hopefully it'll be your

last!

>

> >

> >

> > hi everyone,

> > I am 5 days post op. My experience was really awful, and I have a high pain

> > tolerance. It is really interesting to me how some people have few symptoms

> > and others (like me) are quite severe. I could not manage the pain the first

> > 3 days. I had 3 different pain killers called in for me, nothing seemed to

> > touch the pain. I really thought I was prepared for this as I had

> > obsessively researched this and worst case scenarios, etc.. I even had a pre

> > op visit with my surgeon JUST to ask questions, which he mostly dismissed

> > and told me what I was reading on the internet rarely happened, etc... This

> > gave me a false sense of hope, and ironically I seemed to have most of the

> > horrible symptoms he assured me I probably wouldnt. The ctoma ended up being

> > bigger than he had thought so maybe this was why? The core of it was 10 mm

> > in middle ear and also an additional 5 cm attached to the eardrum. I had the

> > two hearing bones removed but he was able to save the stapes. Here are my

> > questions: What is the likelihood the awful metallic taste and dry mouth

> > will go away and when? I can't stand it. And the VERY loud tinnitus. It is

> > so loud I can barely think/concentrate. I had tinnitus prior to surgery but

> > it was quieter. Will the tinnitus most likely go away and how long does that

> > take? My jaw is swollen and painful. How long before I can chew again? Did

> > anyone have nausea and vomiting 4-5 days AFTER surgery? I threw up all day

> > yesterday, which I wasn't expecting on day 4. Did any of you get thrush from

> > the antibiotic? I've never had it before but I do dr said probably from the

> > antibiotic. Is the second op any easier? I'm supposed to have op #2 to

> > restore hearing/second look in 9 months. Which now I'm thinking I'd rather

> > be deaf than go through this again. Sorry so many questions, just hoping for

> > some answers from people who've actually gone through this. Thanks in

> > advance

> > Janelle

> >

> >

> >

>

[Guest guest]

So sorry to hear about the pain still on day 6. I have had eight surgeries for cholesteatoma and the last one was almost 15 years ago. I can remember for me the most important

thing was to stay on top of the pain meds because if I went too long it seemed like the pain pills weren’t enough. I also remember that there was one particular surgery that hurt more than the others so I was given a much stronger pill and told to only take

half. Within minutes there was NO pain. Now granted, they may not always give a person vicodin…but if it’s necessary, it’s necessary…Continue to work with your doctor because sometimes some doctors just don’t understand what you mean when you try to explain

the pain level. Don’t give up!

Good luck!

IDQ Companies

[Guest guest]

Hi Jenni,

You are not alone having pain for a longer time. There is nothing wrong with you

compared to others. Each case of cholesteatoma surgery is different and the

recovery can be very different. It might be that in most cases the recovery is

fast, but it surtenly wasn´t for me. It is now 4 weeks and 4 days since my

reconstruction surgery. My surgery lasted 6 hours and 15 min. I was in really

bad pain the first week and I did the heavy duty painkillers. The second week

was a better, but still painful. In my third week the pain was not too bad but I

was as with the other weeks very exhausted. This last week has been a lot

better. I have more energy and mostly sleeps all night. I have an electric bed,

and I still sleep with my head rather high. It is uncomfortable laing flat. I

did have tinnitus after surgery but no it only comes now and then. Before

surgery I had tinnitus constantly for at least 7 months.

Hope you get better soon!

From Wenche

> >

> > >

> > >

> > > hi everyone,

> > > I am 5 days post op. My experience was really awful, and I have a high

pain

> > > tolerance. It is really interesting to me how some people have few

symptoms

> > > and others (like me) are quite severe. I could not manage the pain the

first

> > > 3 days. I had 3 different pain killers called in for me, nothing seemed to

> > > touch the pain. I really thought I was prepared for this as I had

> > > obsessively researched this and worst case scenarios, etc.. I even had a

pre

> > > op visit with my surgeon JUST to ask questions, which he mostly dismissed

> > > and told me what I was reading on the internet rarely happened, etc...

This

> > > gave me a false sense of hope, and ironically I seemed to have most of the

> > > horrible symptoms he assured me I probably wouldnt. The ctoma ended up

being

> > > bigger than he had thought so maybe this was why? The core of it was 10 mm

> > > in middle ear and also an additional 5 cm attached to the eardrum. I had

the

> > > two hearing bones removed but he was able to save the stapes. Here are my

> > > questions: What is the likelihood the awful metallic taste and dry mouth

> > > will go away and when? I can't stand it. And the VERY loud tinnitus. It is

> > > so loud I can barely think/concentrate. I had tinnitus prior to surgery

but

> > > it was quieter. Will the tinnitus most likely go away and how long does

that

> > > take? My jaw is swollen and painful. How long before I can chew again? Did

> > > anyone have nausea and vomiting 4-5 days AFTER surgery? I threw up all day

> > > yesterday, which I wasn't expecting on day 4. Did any of you get thrush

from

> > > the antibiotic? I've never had it before but I do dr said probably from

the

> > > antibiotic. Is the second op any easier? I'm supposed to have op #2 to

> > > restore hearing/second look in 9 months. Which now I'm thinking I'd rather

> > > be deaf than go through this again. Sorry so many questions, just hoping

for

> > > some answers from people who've actually gone through this. Thanks in

> > > advance

> > > Janelle

> > >

> > >

> > >

> >

>

[Guest guest]

I had pain after my first surgery for about 10 days. I also have a high

tolerance for pain and it sucked. I had abdominal surgery a couple month before

I stopped taking pain med before I got of the hospital I think it just depends.

The pain killers can make you nauseas, I am a fan ginger snaps to help withe

nausea. Stay on top of the pain and good luck.

Kathy

> >

> > >

> > >

> > > hi everyone,

> > > I am 5 days post op. My experience was really awful, and I have a high

pain

> > > tolerance. It is really interesting to me how some people have few

symptoms

> > > and others (like me) are quite severe. I could not manage the pain the

first

> > > 3 days. I had 3 different pain killers called in for me, nothing seemed to

> > > touch the pain. I really thought I was prepared for this as I had

> > > obsessively researched this and worst case scenarios, etc.. I even had a

pre

> > > op visit with my surgeon JUST to ask questions, which he mostly dismissed

> > > and told me what I was reading on the internet rarely happened, etc...

This

> > > gave me a false sense of hope, and ironically I seemed to have most of the

> > > horrible symptoms he assured me I probably wouldnt. The ctoma ended up

being

> > > bigger than he had thought so maybe this was why? The core of it was 10 mm

> > > in middle ear and also an additional 5 cm attached to the eardrum. I had

the

> > > two hearing bones removed but he was able to save the stapes. Here are my

> > > questions: What is the likelihood the awful metallic taste and dry mouth

> > > will go away and when? I can't stand it. And the VERY loud tinnitus. It is

> > > so loud I can barely think/concentrate. I had tinnitus prior to surgery

but

> > > it was quieter. Will the tinnitus most likely go away and how long does

that

> > > take? My jaw is swollen and painful. How long before I can chew again? Did

> > > anyone have nausea and vomiting 4-5 days AFTER surgery? I threw up all day

> > > yesterday, which I wasn't expecting on day 4. Did any of you get thrush

from

> > > the antibiotic? I've never had it before but I do dr said probably from

the

> > > antibiotic. Is the second op any easier? I'm supposed to have op #2 to

> > > restore hearing/second look in 9 months. Which now I'm thinking I'd rather

> > > be deaf than go through this again. Sorry so many questions, just hoping

for

> > > some answers from people who've actually gone through this. Thanks in

> > > advance

> > > Janelle

> > >

> > >

> > >

> >

>

[Guest guest]

So sorry you are having such a hard time! We all know, this is no fun! I did not have too much trouble with pain. I took percocet the first day and it made me sick so I couldn't take it anymore. I had trouble with nausea, and dizziness. Drinking ginger ale was the only thing I could drink for the first couple days. I had no taste right after surgery- everything tasted like cardboard. It took awhile (several months) but it did get better. I had tinitus in both ears before surgery. Unfortunately I now still have that, but I also have much louder tinitus in the surgery ear. This has not gotten any better and it has been 1 year and 8 months since surgery. Just something to learn to live with I guess because I have been told by at least 4 doctors that there is nothing that can be done.

Hang in there- it will get better....not back to "normal"....but better. From: janelleschnulle <janelleschnulle@...>Subject: Post Op questionscholesteatoma Date: Wednesday, March 30, 2011, 9:18 PM

hi everyone,

I am 5 days post op. My experience was really awful, and I have a high pain tolerance. It is really interesting to me how some people have few symptoms and others (like me) are quite severe. I could not manage the pain the first 3 days. I had 3 different pain killers called in for me, nothing seemed to touch the pain. I really thought I was prepared for this as I had obsessively researched this and worst case scenarios, etc.. I even had a pre op visit with my surgeon JUST to ask questions, which he mostly dismissed and told me what I was reading on the internet rarely happened, etc... This gave me a false sense of hope, and ironically I seemed to have most of the horrible symptoms he assured me I probably wouldnt. The ctoma ended up being bigger than he had thought so maybe this was why? The core of it was 10 mm in middle ear and also an additional 5 cm attached to the eardrum. I had the two hearing bones removed but he was able to save the

stapes. Here are my questions: What is the likelihood the awful metallic taste and dry mouth will go away and when? I can't stand it. And the VERY loud tinnitus. It is so loud I can barely think/concentrate. I had tinnitus prior to surgery but it was quieter. Will the tinnitus most likely go away and how long does that take? My jaw is swollen and painful. How long before I can chew again? Did anyone have nausea and vomiting 4-5 days AFTER surgery? I threw up all day yesterday, which I wasn't expecting on day 4. Did any of you get thrush from the antibiotic? I've never had it before but I do dr said probably from the antibiotic. Is the second op any easier? I'm supposed to have op #2 to restore hearing/second look in 9 months. Which now I'm thinking I'd rather be deaf than go through this again. Sorry so many questions, just hoping for some answers from people who've actually gone through this. Thanks in advance

Janelle