Unusual Question

[Guest guest]

Terri, you don't know for sure that it's just "a nuisance." Check it out, just in case it's not an allergy. This is not a good time to take chances.

Harper

[Guest guest]

In a message dated 8/8/01 3:01:00 PM Pacific Daylight Time, LDSMITH@... writes:

now that I think about it - my mom says that my tone of voice has changed -

and that it is hard for her to understand me - we thought it was her need

for a hearing aid - and when I talk on the phone - people are always asking

me to speak up - I have just noticed it the past 1/1/2 years that I have

been diagnosed and on pred.

maybe there is a connection

paula aih 4/00

I wonder if our voices deepen on Prednisone -- but surely that would make us easier to understand.

Harper

[Guest guest]

now that I think about it - my mom says that my tone of voice has changed -

and that it is hard for her to understand me - we thought it was her need

for a hearing aid - and when I talk on the phone - people are always asking

me to speak up - I have just noticed it the past 1/1/2 years that I have

been diagnosed and on pred.

maybe there is a connection

paula aih 4/00

[ ] Unusual Question

> I have an unusual question...has anyone who is

> taking prednisone noticed any changes in their

> voice?

>

> I'm currently on 10 mg of prednisone, started

> at 40 mg and decreased weekly and will stay

> at 10 for awhile. My voice sounds like it's

> trapped inside of me at times. Sometimes when

> I talk, I almost screech...and can't quite get

> the words out without really straining. Other

> times, it is okay. Usually, people ask me if

> I have a cold or sore throat. I've been saying

> that it's allergies...it could be, but has only

> started happening recently.

>

> This may have nothing at all to do with AIH or

> prednisone, but I didn't have this problem before

> I started taking medication. Just thought I would

> put this question out there in case some of you

> have experienced this.

>

> In the scheme of things, this is really insignificant,

> just more of a nuisance.

>

> Thanks.

>

> Terri

> NV

>

>

>

>

>

[Guest guest]

In a message dated 8/8/01 7:22:54 PM Pacific Daylight Time, nneW5@... writes:

I noticed some changes in my voice shortly after I began taking prednisone..kind of a hoarseness, and my voice would "catch".. Also that when I sang in the shower (which due to my love of fellow man is the only place I sing) that there was a new 'vibratto'...like how an elderly person's voice can be shaky. I wish the brain fog had not been so bad at that time...I have some vague memory of reading something about prednisone causing hoarseness.. but where I saw that and exactly what it said I can't recall. I have noticed some improvement as the dosage has gone down. Occasional raspiness, but really much better. Still just singing in the shower though!! LOL

nne

Hey, you're singing, AIH and all! That makes the changed voice pretty much irrelevant.

I began snoring with Prednisone. I assumed that was from sudden weight gain, but the snoring has decreased along with the dosage, even though I haven't lost any weight.

It seems reasonable that the voice would evidence change along with the rest of the body.

Harper

[Guest guest]

Terri,

I noticed some changes in my voice shortly after I began taking

prednisone..kind of a hoarseness, and my voice would " catch " .. Also

that when I sang in the shower (which due to my love of fellow man is

the only place I sing) that there was a new 'vibratto'...like how an

elderly person's voice can be shaky. I wish the brain fog had not been

so bad at that time...I have some vague memory of reading something

about prednisone causing hoarseness.. but where I saw that and exactly

what it said I can't recall. I have noticed some improvement as the

dosage has gone down. Occasional raspiness, but really much

better. Still just singing in the shower though!! LOL

nne

> I have an unusual question...has anyone who is

> taking prednisone noticed any changes in their

> voice?

>

> I'm currently on 10 mg of prednisone, started

> at 40 mg and decreased weekly and will stay

> at 10 for awhile. My voice sounds like it's

> trapped inside of me at times. Sometimes when

> I talk, I almost screech...and can't quite get

> the words out without really straining. Other

> times, it is okay. Usually, people ask me if

> I have a cold or sore throat. I've been saying

> that it's allergies...it could be, but has only

> started happening recently.

>

> This may have nothing at all to do with AIH or

> prednisone, but I didn't have this problem before

> I started taking medication. Just thought I would

> put this question out there in case some of you

> have experienced this.

>

> In the scheme of things, this is really insignificant,

> just more of a nuisance.

>

> Thanks.

>

> Terri

> NV

[Guest guest]

My daughter had never had mushrooms until relatively recently, the

past year or so. Sounds interesting!

Mindy

> Listmates,

>

> In doing some research on epilepsy regarding my daughter something

strange

> came up while discussing her case with a couple of researchers.

The

> question I have for the group is whether or not they have seen an

increase

> in seizure activity or irritation after eating mushrooms?

>

> I'll explain later why so as not to " pollute " the responses.

>

> Mark Schauss, M.B.A., D.B.

> President

> Carbon Based Corporation

> 5470 Louie Lane, Suite 101

> Reno, NV 89511

> T: 775.851.3337

> F: 775.851.3363

> www.carbonbased.com <http://www.carbonbased.com/>

>

>

>

>

[Guest guest]

-

Hi Mark,

Check out this link.

Zoe

-- In , " Mark Schauss " <schauss@c...>

wrote:

> Listmates,

>

> In doing some research on epilepsy regarding my daughter something

strange

> came up while discussing her case with a couple of researchers. The

> question I have for the group is whether or not they have seen an

increase

> in seizure activity or irritation after eating mushrooms?

>

> I'll explain later why so as not to " pollute " the responses.

>

> Mark Schauss, M.B.A., D.B.

> President

> Carbon Based Corporation

> 5470 Louie Lane, Suite 101

> Reno, NV 89511

> T: 775.851.3337

> F: 775.851.3363

> www.carbonbased.com <http://www.carbonbased.com/>

>

>

>

>

[Guest guest]

Hi there,

I have had 2 of these surgeries (one on each ear). Post operative

pain was not substantial in either case. After the first one, I would

say the general icky taste of the anaesthetic and the feeling of

groggyness was the worst part of it.

After the second one, I had major dizzyness for 2 to 3 weeks, and

that felt very strange. Also, the taste of the anaesthetic lingered

for at least a week.

The doctors prescribed very strong pain killers in both cases, but I

only used these for the first 2 days (not because I was in pain, but

I was being kinda proactive about addressing possible pain).

Clearly, every case is different, but I would say the pain should not

really go above a 3 on your 1-10 scale. For the first couple of days

let him relax in bed watching the TV, and make sure he drinks plenty

of fluids. Personally I found chewing difficult for the first couple

of days, so soups and fluid based food types will be best.

Hope this helps.

>

> Hello all,

>

> I have an unusual question for those of you who have had the C-toma

> surgery with a canal-wall down mastoidectomy. My son is 16

> years old. He has special needs and moderate mental retardation

and

> is totally non-verbal. We have never heard him speak.

>

> With that in mind, we would like to hear from those of you who have

> had this surgery, so we can get an idea of what he will be feeling

> and thinking. We will not have a clue what our son will be going

> through on June 12th. This is his first and only C-toma and it's

> fairly big and advanced. If he were able to talk to us post-

surgery,

> what would he say in your opinions as to his pain level (0-10) and

> what it feels like?

>

> How did you feel upon waking up in post-op? How did you feel

coming

> home? What was sleeping like the night after the surgery and the

> first week and so forth.

>

> Because our son doesn't talk at all, we're seeking your personal

> thoughts in the immediate post-surgical period. We know that there

> are probably a wide variety of experiences after this surgery and

> answers will vary.

>

> Trying to ascertain what our son is thinking and feeling has been a

> challenge for us for the last sixteen years. We're just trying to

> get some ideas on what he might tell us after the surgery if he

could

> actually speak to us.

>

> Managing his pain appropriately is important for us. How was your

> post-surgical pain on a scale of 1 to 10 and so forth? These are

> some of the answers we seek, that a doctor could not really

> accurately provide and cholesteatoma research could not really

> provide.

>

> Thanks a bunch!

> Marc and

>

[Guest guest]

Hi

Can I just add that I had a problem with my taste for a while as well,

so he may like certain foods. I wasn't sure if this was due to the

c'toma or a really bad ear infection beforehand. I still can't eat

shop brought pizza and I also went right off chocolate which is a sin!

I think he will just need to be pampered.

Take care

Louise

> >

> > Hello all,

> >

> > I have an unusual question for those of you who have had the C-toma

> > surgery with a canal-wall down mastoidectomy. My son is 16

> > years old. He has special needs and moderate mental retardation

> and

> > is totally non-verbal. We have never heard him speak.

> >

> > With that in mind, we would like to hear from those of you who have

> > had this surgery, so we can get an idea of what he will be feeling

> > and thinking. We will not have a clue what our son will be going

> > through on June 12th. This is his first and only C-toma and it's

> > fairly big and advanced. If he were able to talk to us post-

> surgery,

> > what would he say in your opinions as to his pain level (0-10) and

> > what it feels like?

> >

> > How did you feel upon waking up in post-op? How did you feel

> coming

> > home? What was sleeping like the night after the surgery and the

> > first week and so forth.

> >

> > Because our son doesn't talk at all, we're seeking your personal

> > thoughts in the immediate post-surgical period. We know that there

> > are probably a wide variety of experiences after this surgery and

> > answers will vary.

> >

> > Trying to ascertain what our son is thinking and feeling has been a

> > challenge for us for the last sixteen years. We're just trying to

> > get some ideas on what he might tell us after the surgery if he

> could

> > actually speak to us.

> >

> > Managing his pain appropriately is important for us. How was your

> > post-surgical pain on a scale of 1 to 10 and so forth? These are

> > some of the answers we seek, that a doctor could not really

> > accurately provide and cholesteatoma research could not really

> > provide.

> >

> > Thanks a bunch!

> > Marc and

> >

>

[Guest guest]

Hi,

I had two things that I grumbled about a lot. First, my first

cholesteatoma surgery was kind of long - close to eight hours. I really

had to go number one very badly in the recovery room. If there is a way

your son indicates that he needs to go, look for it. Second, for a

canal wall up surgery, the patient will have a bandage on their head

that has to stay on for just 24 hours. They always manage to pinch some

part of the outer ear with it - the lobe or the top of the ear or along

the front or back edge. That kind of smarts after a while and it was

honestly the only pain I remember. So, if this is a canal wall up

surgery - maybe the prescribed pain medication for the first 24 hours is

a good idea. I did fine with just Tylenol, but my wife insisted on

having the pain medication on hand. The pain medication might help to

curb the desire to rip the lousy bandage off early (something I ever so

much wanted to do).

I think the lighter diet is a good idea for the first few days. The

anesthetic will still be wearing off. Try to get your son to drink a

lot of fluids. This is something that I didn't realize - I was never

much of a water drinker, so I managed to get myself pretty dehydrated

each time. When I got dehydrated, I had a tough time with nausea. When

I started drinking 8 ounces of liquid (mostly water) for every hour that

I was awake, I felt better in just a few hours and stayed that way.

I was kind of clumsy while the anesthetic was wearing off. Slow walks

(strolls) and liquids take care of that. I had minor dizziness, but

that cleared up the more that I moved around.

Make sure to have a button down shirt for him to wear to and from the

hospital - you won't want to be trying to pull anything over the bandage.

Matt

louise_and_james wrote:

>

> Hi

>

> Can I just add that I had a problem with my taste for a while as well,

> so he may like certain foods. I wasn't sure if this was due to the

> c'toma or a really bad ear infection beforehand. I still can't eat

> shop brought pizza and I also went right off chocolate which is a sin!

>

> I think he will just need to be pampered.

>

> Take care

> Louise

>

>

> > >

> > > Hello all,

> > >

> > > I have an unusual question for those of you who have had the C-toma

> > > surgery with a canal-wall down mastoidectomy. My son is 16

> > > years old. He has special needs and moderate mental retardation

> > and

> > > is totally non-verbal. We have never heard him speak.

> > >

> > > With that in mind, we would like to hear from those of you who have

> > > had this surgery, so we can get an idea of what he will be feeling

> > > and thinking. We will not have a clue what our son will be going

> > > through on June 12th. This is his first and only C-toma and it's

> > > fairly big and advanced. If he were able to talk to us post-

> > surgery,

> > > what would he say in your opinions as to his pain level (0-10) and

> > > what it feels like?

> > >

> > > How did you feel upon waking up in post-op? How did you feel

> > coming

> > > home? What was sleeping like the night after the surgery and the

> > > first week and so forth.

> > >

> > > Because our son doesn't talk at all, we're seeking your personal

> > > thoughts in the immediate post-surgical period. We know that there

> > > are probably a wide variety of experiences after this surgery and

> > > answers will vary.

> > >

> > > Trying to ascertain what our son is thinking and feeling has been a

> > > challenge for us for the last sixteen years. We're just trying to

> > > get some ideas on what he might tell us after the surgery if he

> > could

> > > actually speak to us.

> > >

> > > Managing his pain appropriately is important for us. How was your

> > > post-surgical pain on a scale of 1 to 10 and so forth? These are

> > > some of the answers we seek, that a doctor could not really

> > > accurately provide and cholesteatoma research could not really

> > > provide.

> > >

> > > Thanks a bunch!

> > > Marc and

> > >

> >

>

>

--

[Guest guest]

On my CWD i didnt have a whole lot of pain at all, i took maybe like 4 tylenol the day after. The hard part is everyone deals with pain differently so what may have been fine for me may be the worst pain the the world for someone else. I tend to have a high tolerence for pain so in that way im lucky(ive dome some horrible things to myself and patched myself up with duct tape and bubble gum and driven myself to the hospital) when it comes to surgery. When i first woke up i was dizzy and just wanted to go to the bathroom( i was the same on my cwu on the other ear), i also wanted to go home and sleep in my own bed. Overall I would say the worst part of it was the packing. They packed the canal full of gauze and it became very hard from dried blood and was very uncomfortable. The bandage wasnt too bad since i pretty much slept the whole first day after and from there i took it off. I have to agree with Matt on the dehydration. On my CWD i ended up staying overnight and i was very dehydrated. They gave me plenty of liquid but it didnt help or seem to. I ended up having to stop to get some gatorade on the ride home and after one bottle of that i started feeling better. I recommend getting some of that in a flavor he likes so he will drink it. After about two days i started feeling somewhat normal with the exception of my appetite. I couldnt eat enough during the first week or so. I think my body was using everything i had to recover and i was constantly hungry. I ended up loosing like 15# after that deal and i was pretty much eating constantly when i was awake. Im normally a 3 meals a day kind of guy but during that recovery it was more like 8 and constant snacking.

I hope this helps some and best of luck on his surgery. Im sure this is not an easy thing for you to deal with.

On 4/26/08,

[Guest guest]

Yes i found that out too being untreated for a long time. And methotrexate

is cheap as well as prednisone too..

Jolene

In a message dated 5/23/2008 10:36:37 A.M. Eastern Daylight Time,

lfriedman5@... writes:

,

I think yes because it's progressive and one can have joint damage

without any pain. It will get worse and then it will be more

difficult to get under control. Mtx is cheap. At least he could

stay on that.

--- In _ @groRA-SUPP_ (mailto: ) ,

Whiteflower <nativefroglady@nat>

wrote:

>

> Hi all!

>

> I have a rather unusual question. I have a friend with RA who,

due to monitary issues and lack of health care insurance, does not

take medications of any kind outside of Advil and other OTC pain

meds. He has constant but mild pain, and now questions if he has RA

at all.

>

> He had, in past, taken methotrexate and Plaquenil. He was on

prednisone for awhile and said that was the only medication that

allowed him any pain relief at all. Even vicodins did little for

him.

>

> My question is, if anyone has an answer...could not taking

prescribed medication for RA make the disease more difficult to

treat later on? He says that once he has the money or insurance he

would go back to the doctor. I'm worried for him that when he does

go back to his doctor that the disease will be much worse and that

the typical medications won't work as well.

>

> Thanks for any input.

>

> Wishing you a pain-free day,

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Hi all!

I have a rather unusual question. I have a friend with RA who, due to

monitary issues and lack of health care insurance, does not take medications of

any kind outside of Advil and other OTC pain meds. He has constant but mild

pain, and now questions if he has RA at all.

He had, in past, taken methotrexate and Plaquenil. He was on prednisone for

awhile and said that was the only medication that allowed him any pain relief at

all. Even vicodins did little for him.

My question is, if anyone has an answer...could not taking prescribed

medication for RA make the disease more difficult to treat later on? He says

that once he has the money or insurance he would go back to the doctor. I'm

worried for him that when he does go back to his doctor that the disease will be

much worse and that the typical medications won't work as well.

Thanks for any input.

Wishing you a pain-free day,

[Guest guest]

,

I think yes because it's progressive and one can have joint damage

without any pain. It will get worse and then it will be more

difficult to get under control. Mtx is cheap. At least he could

stay on that.

--- In , Whiteflower <nativefroglady@...>

wrote:

>

> Hi all!

>

> I have a rather unusual question. I have a friend with RA who,

due to monitary issues and lack of health care insurance, does not

take medications of any kind outside of Advil and other OTC pain

meds. He has constant but mild pain, and now questions if he has RA

at all.

>

> He had, in past, taken methotrexate and Plaquenil. He was on

prednisone for awhile and said that was the only medication that

allowed him any pain relief at all. Even vicodins did little for

him.

>

> My question is, if anyone has an answer...could not taking

prescribed medication for RA make the disease more difficult to

treat later on? He says that once he has the money or insurance he

would go back to the doctor. I'm worried for him that when he does

go back to his doctor that the disease will be much worse and that

the typical medications won't work as well.

>

> Thanks for any input.

>

> Wishing you a pain-free day,

>

>

>

>

>

>

>

[Guest guest]

,

I would think it would vary on the person. I was told I have RA....but have

gone long periods of time with no meds for a variety of reasons: I am

forgetful, insurance issues, doc issues and money.

I am on no meds and its been so long now that I can not remember when I was

on meds....I did go for x-rays within the past year and was told in

comparision with all my xrays dating back to 2000 there has been no

changes....so as

long as there are no changes...I am opting for no meds and no wasting a bunch

of time or money with docs that treat me poorly.

My pain is mild to none most of the time. I take Lodine as needed(is the

only Rx med I kept filled) but never for anymore than a few days at a time.

Other than that I take tylenol. I don't us NSAIDS for a long period of time

because they cause GI problems.

I will also share that I have had long remissions...with the longest being 9

months of absolutely NO symptoms.

Toni

______________________________________________________________________

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**************Get trade secrets for amazing burgers. Watch " Cooking with

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