Good News!

[Guest guest]

That's GREAT Tawny!! I hope they come quickly and work well, so that

you can get some much deserved relief.

a

On Jun 22, 2005, at 6:19 PM, tdianaok wrote:

> I just found out that I'm approved on the patient's assistance program

> to get the Lidoderm patches. I'm so glad, if I could I would do the

> happy dance,lol  I'm having a rough time right now, just so much

> pain.  The Loratab that I take does not help at all.

> I just hope all the paper work goes through quickly, and I can get the

> patches like now. 

> I just pray that I will get some relief from the patches. If not, I am

> thinking about the surgery, I can't deal with this pain for much

> longer.  Just know that I'm still thinking of everyone, even though

> I'm not posting much, Tawny

>

>

>

>

>

[Guest guest]

Thanks so much a:)

>

> > I just found out that I'm approved on the patient's assistance

program

> > to get the Lidoderm patches. I'm so glad, if I could I would do

the

> > happy dance,lol  I'm having a rough time right now, just so much

> > pain.  The Loratab that I take does not help at all.

> > I just hope all the paper work goes through quickly, and I can

get the

> > patches like now. 

> > I just pray that I will get some relief from the patches. If

not, I am

> > thinking about the surgery, I can't deal with this pain for much

> > longer.  Just know that I'm still thinking of everyone, even

though

> > I'm not posting much, Tawny

> >

> >

> >

> >

> >

[Guest guest]

Tawny:

I am so happy to hear that you're going to get the meds you need! You

have had such a rotten time lately, and you truly do deserve this

break. Hang in there....things will only get better.

Is the Lidoderm patch similar to the Fentanyl patch??? Just curious.

Take care,

> I just found out that I'm approved on the patient's assistance program

> to get the Lidoderm patches. I'm so glad, if I could I would do the

> happy dance,lol I'm having a rough time right now, just so much

> pain. The Loratab that I take does not help at all.

> I just hope all the paper work goes through quickly, and I can get the

> patches like now.

> I just pray that I will get some relief from the patches. If not, I am

> thinking about the surgery, I can't deal with this pain for much

> longer. Just know that I'm still thinking of everyone, even though

> I'm not posting much, Tawny

[Guest guest]

,

This is the first patch I have used, so not sure if it's like

Fentanyl patch. It sure takes the edge off the pain, and that is sure

welcoming, Tawny

> > I just found out that I'm approved on the patient's assistance

program

> > to get the Lidoderm patches. I'm so glad, if I could I would do

the

> > happy dance,lol I'm having a rough time right now, just so much

> > pain. The Loratab that I take does not help at all.

> > I just hope all the paper work goes through quickly, and I can

get the

> > patches like now.

> > I just pray that I will get some relief from the patches. If not,

I am

> > thinking about the surgery, I can't deal with this pain for much

> > longer. Just know that I'm still thinking of everyone, even

though

> > I'm not posting much, Tawny

[Guest guest]

And that will be everyone who can afford to pay $5,000 (or so) for the upgrade,

is that correct? Does anyone know the cost of an upgrade?

Pam (in Alaska)

Good news!

They are testing a few folks that older Implants with the NEW Freedom

processor :-) Still no word on how long before it will be ready for

everyone but at least its a start.

Cheers,

Evel

[Guest guest]

Pam,

Right now the Freedom processor for older N24 users is just in

research stage.. we don't know when it will be available for the

general public. There's still a ways to go with research, FDA

approval and the like.

As far as it being available for only those who can afford it, many

insurances will cover upgrades after so many years. My mom has

Medicare and if something happens to her processor, they will pay

for an upgrade after 5 years I believe it is.

I've had my current processor for almost 4 years.. should it quit,

my insurance would cover the newest upgrade available.

I'm not sure if they pay for an upgrade if the present one is

working though. I'd have to do some checking into this.

I'm not sure of the cost of an upgrade, but if I remember right, the

3G processors were around $5000-$6000 wich is pretty comparable to

other processors.

I don't know if they will offer an exchange price or not, but this

has been the case in the past.

Anyhow.. it's still off in the future as to when we will actually be

able to get them.

Right now, I'm just thankful I've never had to pay for a replacement

or repairs and that I'm hearing as well as I do with my 3G.

Hugs,

Silly MI

In , coronacrone <coronacrone@g...> wrote:

> And that will be everyone who can afford to pay $5,000 (or so) for

the upgrade, is that correct? Does anyone know the cost of an

upgrade?

>

> Pam (in Alaska)

>

>

>

>

> Good news!

>

>

> They are testing a few folks that older Implants with the NEW

Freedom

> processor :-) Still no word on how long before it will be ready

for

> everyone but at least its a start.

>

> Cheers,

> Evel

>

>

>

>

[Guest guest]

Pam,

The processor is $6,000 but if you have an unopened 3G you can trade ut

in. Details will be forthcoming when the time nears.

*---* *---* *---* *---* *---*

The Best Way to get Back on your Feet - Miss a Car Payment.

--sign at a car dealership

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

[Guest guest]

There are ways to get your insurance co. to pay for it ;-)

Not sure what The cost is.

Evel

> And that will be everyone who can afford to pay $5,000 (or so) for

the upgrade, is that correct? Does anyone know the cost of an

upgrade?

>

> Pam (in Alaska)

>

>

>

>

> Good news!

>

>

> They are testing a few folks that older Implants with the NEW

Freedom

> processor :-) Still no word on how long before it will be ready

for

> everyone but at least its a start.

>

> Cheers,

> Evel

>

>

>

>

[Guest guest]

Thanks ,

However, I only got one processor since I am Medicare.. so I imagine it will be

a " cold day in New Orleans " before I am able to upgrade.

They came out with this new Freedom one month after my implant with N24 and

although I love my hearing that has been gained I would have also really loved

to have a choice offered of being able to wait a month for the new model.

Pam Savage

From:

Pam,

The processor is $6,000 but if you have an unopened 3G you can trade ut

in. Details will be forthcoming when the time nears.

[Guest guest]

Cindi, this is great news and a wonderful silver lining!

Hugs,

Maggie

[Guest guest]

Yaaaayyyy!mike in WI

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

WOW CINDI ....

Great News! I am thrilled for you, as I know it has been a rough

year! Doesn't that put your whole attitude on a different level?

OK ... the excellent Doctors Name? A GI? What Hospital ... SPIT IT OUT

GIRL ... remember, we share well.

Kathie in Pittsburgh

The great news is that there is no dilation at all of the esophagus

and everything went down!!

> It was a new doctor and he was EXCELLENT. He let me watch everything

& explained it all. He said, " You definitely have achalasia " , but he

was happy to see that it wasn't progressing at this point.

> Cindi in PA

[Guest guest]

Terrific news, Cindi

> Well, it has been 17 months since my surgery and I finally got up

the guts

> to go get a swallowing study (timed barium swallow) done that I

was supposed

> to have done in April. I have had some stickage and was concerned

that

> things might be progressing again...

>

> BUT! The great news is that there is no dilation at all of the

esophagus

> and everything went down!! He even gave me the really thick nasty

stuff

> (gag). He also laid me down, after drinking and showed me that I

am having

> some reverse peristalsis and how he could see that my peristalsis

is screwed

> up (well, duh). That is probably the reason for the occaisional

stickage.

>

> It was a new doctor and he was EXCELLENT. He let me watch

everything &

> explained it all. He said, " You definitely have achalasia " , but

he was

> happy to see that it wasn't progressing at this point, and so was

I!!!

>

> Vast improvement over the last barium swallow I had, pre-

surgery...where all

> the thin barium sat in my E with only a trickle going

through.......

>

> Cindi in PA

[Guest guest]

Cindi:

Such terrific news -- I am imagining the very same for me one year out when I

got back

for a barium -- just to make Sandy from So. Cal jealous because Dr. Fuller likes

me best!

Peg

P.S. Popsicles were the trick for spasms. Thanks tons for your email.

> Well, it has been 17 months since my surgery and I finally got up the guts

> to go get a swallowing study (timed barium swallow) done that I was supposed

> to have done in April. I have had some stickage and was concerned that

> things might be progressing again...

>

> BUT! The great news is that there is no dilation at all of the esophagus

> and everything went down!! He even gave me the really thick nasty stuff

> (gag). He also laid me down, after drinking and showed me that I am having

> some reverse peristalsis and how he could see that my peristalsis is screwed

> up (well, duh). That is probably the reason for the occaisional stickage.

>

> It was a new doctor and he was EXCELLENT. He let me watch everything &

> explained it all. He said, " You definitely have achalasia " , but he was

> happy to see that it wasn't progressing at this point, and so was I!!!

>

> Vast improvement over the last barium swallow I had, pre-surgery...where all

> the thin barium sat in my E with only a trickle going through.......

>

> Cindi in PA

[Guest guest]

Congrats on no polyps Billie! Have to figure out the secret now. I

am sorry about the CSS, I know how frustrating that can be. I take

so much medication for it all but it let's me live somewhat a normal

life. Did the ENT say why you stayed clear all this time? Trudy.

> Hi All,

> Thought I'd share some good news for a change! Went to the ENT

today and he said there is no sign of polyps... my last surgery was

in 1996 and I've been polyp-free since then!!

>

> On the other hand, the not so good news is a hearing loss of 27/28

%, probably from the CSS. " Marginally adequate " is what the dr said,

but that's OK for now. No polyps news trumps hearing loss news!

>

> Billie in Texas

>

>

[Guest guest]

What is CSS?On Sep 21, 2005, at 4:58 AM, Trudy wrote: Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy. > Hi All, > Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!! >  > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news! >  > Billie in Texas > > 

[Guest guest]

CSS is Churg Strauss Syndrome...a type of vasculitis that some of

Samter sufferers seem to get. There is a great website if you want more

info. It is a long and drawn out and very complicating disorder. I will

get a link for you if you like. Trudy.

> What is CSS?

[Guest guest]

Trudy,

He didn't say this time, but previously he and my PCP have attributed it to Singulair and an excellent job of cleaning everything out with the last surgery. Who knows?Trudy <iamthezookeeper@...> wrote:

Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy.> Hi All,> Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!!> > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news!> > Billie in Texas> >

__________________________________________________

[Guest guest]

Rex,

CSS is Churg-Strauss Syndrome, which seems to be a subset of Samters. It's a (rare) auto-immune vascular disease. It looks and acts a lot like Lupus, but is a separate disease. As with Samters, there is no cure, but treatment can get it somewhat under control. Treatment consists of immuno-supressents, usually combined at first with prednisone and some of the "chemo" drugs. Living on the Texas coast (and preparing for Hurricane Rita), my analogy is this:If asthma is Category 1, Samters is a Cat. 2, CSS a Cat 3-4. There's an excellent website on it, which I don't have handy right now, with the storm preparations having my desk in disarray!

Billie in TexasRex Young <rex@...> wrote:

What is CSS?

On Sep 21, 2005, at 4:58 AM, Trudy wrote:

Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy.> Hi All,> Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!!> > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news!> > Billie in Texas> >

[Guest guest]

Our website on Css is cssassociation.org. Carol

Re: Re: Good news!

Rex,

CSS is Churg-Strauss Syndrome, which seems to be a subset of Samters. It's a (rare) auto-immune vascular disease. It looks and acts a lot like Lupus, but is a separate disease. As with Samters, there is no cure, but treatment can get it somewhat under control. Treatment consists of immuno-supressents, usually combined at first with prednisone and some of the "chemo" drugs. Living on the Texas coast (and preparing for Hurricane Rita), my analogy is this:If asthma is Category 1, Samters is a Cat. 2, CSS a Cat 3-4. There's an excellent website on it, which I don't have handy right now, with the storm preparations having my desk in disarray!

Billie in TexasRex Young <rex@...> wrote:

What is CSS?

On Sep 21, 2005, at 4:58 AM, Trudy wrote:

Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy.> Hi All,> Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!!> > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news!> > Billie in Texas> >

[Guest guest]

Wow, thats sounds pretty bad! The way I feel, I thought that I was a category 5. Boy was I wrong. I'm 36 years old and have had 4 polyp surgeries in 3 years. I've been taking Prednisone for 2 years straight at 10-20 mg a day. Aspirin desensitization did not  work, and I want off of this drug. I'm in the process of researching alternative medicines. If anyone has had any luck with herbal remedies please share.Thanks-RexOn Sep 21, 2005, at 5:08 PM, billie ford wrote: Rex, CSS is Churg-Strauss Syndrome, which seems to be a subset of Samters. It's a (rare) auto-immune vascular disease. It looks and acts a lot like Lupus, but is a separate disease. As with Samters, there is no cure, but treatment can get it somewhat under control. Treatment consists of immuno-supressents, usually combined at first with prednisone and some of the "chemo" drugs. Living on the Texas coast (and preparing for Hurricane Rita), my analogy is this:If asthma is Category 1, Samters is a Cat. 2, CSS a Cat 3-4.   There's an excellent website on it, which I don't have handy right now, with the storm preparations having my desk in disarray!   Billie in TexasRex Young <rex@...> wrote: What is CSS? On Sep 21, 2005, at 4:58 AM, Trudy wrote: Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy.> Hi All,> Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!!>  > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news!>  > Billie in Texas> > 

[Guest guest]

Rex, I've been on various doses up to 60 mg of the prednisone for 32 years, so I can't complain too much. The only real side effect of it has been a 200 lb weight gain (with other factors as well, since the weight gain is only about 20 years). It's a bad drug alright, but it has made life possible and functional all these years. I haven't had the bad polyps after the first two surgeries, just enough to be miserable both times. Good luck ! I haven't heard anything positive about herbal medicines, so don't give up traditional treatments until you find something that really works. Rex Young <rex@...> wrote:

Wow, thats sounds pretty bad! The way I feel, I thought that I was a category 5. Boy was I wrong. I'm 36 years old and have had 4 polyp surgeries in 3 years. I've been taking Prednisone for 2 years straight at 10-20 mg a day. Aspirin desensitization did not work, and I want off of this drug. I'm in the process of researching alternative medicines. If anyone has had any luck with herbal remedies please share.

Thanks-

Rex

On Sep 21, 2005, at 5:08 PM, billie ford wrote:

Rex,

CSS is Churg-Strauss Syndrome, which seems to be a subset of Samters. It's a (rare) auto-immune vascular disease. It looks and acts a lot like Lupus, but is a separate disease. As with Samters, there is no cure, but treatment can get it somewhat under control. Treatment consists of immuno-supressents, usually combined at first with prednisone and some of the "chemo" drugs. Living on the Texas coast (and preparing for Hurricane Rita), my analogy is this:If asthma is Category 1, Samters is a Cat. 2, CSS a Cat 3-4. There's an excellent website on it, which I don't have handy right now, with the storm preparations having my desk in disarray!

Billie in TexasRex Young <rex@...> wrote:

What is CSS?

On Sep 21, 2005, at 4:58 AM, Trudy wrote:

Congrats on no polyps Billie! Have to figure out the secret now. I am sorry about the CSS, I know how frustrating that can be. I take so much medication for it all but it let's me live somewhat a normal life. Did the ENT say why you stayed clear all this time? Trudy.> Hi All,> Thought I'd share some good news for a change! Went to the ENT today and he said there is no sign of polyps... my last surgery was in 1996 and I've been polyp-free since then!!> > On the other hand, the not so good news is a hearing loss of 27/28 %, probably from the CSS. "Marginally adequate" is what the dr said, but that's OK for now. No polyps news trumps hearing loss news!> > Billie in Texas> >

[Guest guest]

Rex, I too have been on/off high doses of prednisone for 24 years. I

now take it daily for the past year and a half. Go back and read my

post about figuring out how much you take during bursts over the course

of the year verses daily maintenance. I fought this for so long it

wasn't funny. When I finally accepted the daily dose my quality of life

got so much better. I work hard at keeping the weight off, though there

are times you will hear me say " I want my body back " . Do you take

Singulair? It is one medication that helps some of us the most. Ask

your doctor about new treatments too. Hang in there. Knowing there are

others that feel exactly as I do has helped too though I wish nobody

had to go through this. Trudy.

> Rex, I've been on various doses up to 60 mg of the prednisone for 32

years, so I can't complain too much. The only real side effect of it

has been a 200 lb weight gain (with other factors as well, since the

weight gain is only about 20 years). It's a bad drug alright, but it

has made life possible and functional all these years. I haven't had

the bad polyps after the first two surgeries, just enough to be

miserable both times. Good luck ! I haven't heard anything positive

about herbal medicines, so don't give up traditional treatments until

you find something that really works.

[Guest guest]

> I just wanted to let you all know that my 3.11 yo son (Evan) with ASD

> *finally* pooped in the toilet!!!:-D

>>>>>Great news!!!! Glad to hear it.

> We have been working on it for about 2 months, so this may or may not

> be a coincidence; but, I did just start him on both Zyme Prime and AFP

> Peptizyde today (both with lunch and dinner...but he did sneak two

> Goldfish crackers at his daycare today...so I'm not sure if it has

> anything to do with it or not). He did seem a bit hyper and still not

> following directions as much as he used to...but yesterday he was not

> as hyper, and he had both enzymes (but only once). So, I wonder if

> maybe I just moved too fast with giving him too much AFP Peptizyde too

> quickly?

>>>>>>>>How much are you giving? We started out with one enzyme at a time

>>>>>>>>and worked into a second one. With the AFP Peptizyde there is an

>>>>>>>>adjustment period..... so don't be alarmed, but you may want to go

>>>>>>>>low and slow with it. We used about a 1/4 of a cap for one meal a

>>>>>>>>day for at least 5-7 days and worked up from there. You may want to

>>>>>>>>start with one at a time until he is adjusted to one. Remember, it

>>>>>>>>is the size of the meal and not his weight when giving it.

Jackie---

[Guest guest]

Congratulations!

There are probably many explanations... but my kids tend to respond

instantly to enzymes. I just doubled my daughter's dose because

we've run out of chewables, and I'm afraid she will spit out at

least some of the " mix " of enzyme powder and chocolate ice cream, so

I have been giving her 2 Pep AFP, 2 ZP and 2 NF capsules per meal

whereas before it was just 1-2 Pep and ZP chewables + 1/2-1 NF

capsule. (oh, I guess actually I kind of quadrupled it, didn't I?)

Anyway in the past 3 days since this began her expressive language

has about doubled, she doesn't seem to be having as much of a

problem with auditory processing, and she's taught herself to read.

But again there are other factors, such as her first 2 days in a new

preschool... but I think the enzymes allow her to take in the other

factors and utilize them to the fullest, as well as directly impact

the actual progress. My thoughts, anyway.

I hope you have many, many more of the same

Amy

>

> Hi group!

>

> I just wanted to let you all know that my 3.11 yo son (Evan) with

ASD

> *finally* pooped in the toilet!!!:-D He did it tonight and my 8

yo NT

> son and I of course made a HUGE deal about it. Evan was acting very

> excited too...jumping and clapping and squealing with delight

> (probably in response to my 8 yo and my excitement).

>

> We have been working on it for about 2 months, so this may or may

not

> be a coincidence; but, I did just start him on both Zyme Prime and

AFP

> Peptizyde today (both with lunch and dinner...but he did sneak two

> Goldfish crackers at his daycare today...so I'm not sure if it has

> anything to do with it or not). He did seem a bit hyper and still

not

> following directions as much as he used to...but yesterday he was

not

> as hyper, and he had both enzymes (but only once). So, I wonder if

> maybe I just moved too fast with giving him too much AFP Peptizyde

too

> quickly?

>

> Anyway...not sure if there is any connection between starting both

> enzymes (instead of just Zyme Prime) and this potty

> accomplishment...but I just thought I'd share the news. Whether

due

> to enzymes or not, it's still something to celebrate:-D!!!

>

> Laurel in NJ

>