decisions

[Guest guest]

In a message dated 2/25/03 8:11:05 PM Mountain Standard Time,

jazzzman@... writes:

> My virus' genotype is 1A, which is usually the most virulent and the

> hardest to treat. On the other hand, the liver damage is Stage 1, Grade

> 1; on a scale of 0-4, Stage 1 is minimal scar tissue and Grade 1 is

> minimal inflammation.

Good luck , it's a long road but worth it for many and worth a try.

I'm a 4a (whatever that really means) and at 0 on the 0 - 4 scale so I'm

waiting.

I get checked out once a year with bx's every 3-5 yrs( my last one was last

June) and if I ever get to a 1 I will be joining you - hugs, Kerry

Hey! are there any other 4a's out there?

AND I guess you ALL know this - DON " T DRINK ALCOHOL please

[Guest guest]

, I will be following your treatment with great interest. I'm changing

hepatologists once I can get my test results from Loyola - they are being really

recalcitrant. The doctor I want to change to is of the belief that treatment

while you are healthy and genotype 1 has better results for trying the

treatment. I would go for it if I knew that I would be re-evaluated after 12

weeks. The guy I had been going to wanted me on it for 18 months straight

through, no matter what the blood tests said. I just wasn't willing to go into

a treatment that was longer than anyone else I had ever heard of, and this guy

was my way or the highway.

Best of luck to you!

Marilyn

Decisions

I discussed treatment options with my doctor today.

My virus' genotype is 1A, which is usually the most virulent and the

hardest to treat. On the other hand, the liver damage is Stage 1, Grade

1; on a scale of 0-4, Stage 1 is minimal scar tissue and Grade 1 is

minimal inflammation. The prognosis is better if treated now, while I'm

still healthy, so we are going to go ahead and try the treatment.

With the new once a week shot, the side effects are usually greatly

reduced. They are normally at their worse in the first shot/week or two

and then the body begins to get used to the medications. I greatly

appreciate the opportunity to go to 4 ten hour days, but I'd like to

avoid that if I could; ten hour days can be very wearing. The doctor

says that usually, if the shot is taken on Friday night and there are

side effects they are gone or nearly gone by Monday morning.

The point that sold us on going ahead with the treatment was a 12 week

trial period. If the viral load does not decrease significantly at the

end of 12 weeks of treatment, the chances of treatment working at all is

very slim, so treatment would then be put on hold until there is

something new to use. Right now, there is really nothing new in

clinical trials, so there will not be any new medications on the market

for at least three years.

We're checking with the pharmaceutical company that Dr. Semon's office

usually works with- they'll check out the insurance details and deliver

the meds right to our home. It looks like we have very good insurance

(thanks, Art) which is a good thing as without insurance the medications

will cost about $3,000.00 a month! Being genotype 1A means the

treatment will last 48 weeks.

The plan right now is to start treatments on Friday, March 7.

[Guest guest]

That IS strange.... I've not heard of anyone on treatment for 18 months

straight.

Its ALWAYS appropriate to get a second opinion....

Re: Decisions

, I will be following your treatment with great interest. I'm

changing hepatologists once I can get my test results from Loyola - they

are being really recalcitrant. The doctor I want to change to is of the

belief that treatment while you are healthy and genotype 1 has better

results for trying the treatment. I would go for it if I knew that I

would be re-evaluated after 12 weeks. The guy I had been going to

wanted me on it for 18 months straight through, no matter what the blood

tests said. I just wasn't willing to go into a treatment that was

longer than anyone else I had ever heard of, and this guy was my way or

the highway.

Best of luck to you!

Marilyn

[Guest guest]

In a message dated 7/11/2003 4:14:43 PM Central Daylight Time,

mjs93311@... writes:

> I am surprised, but shouddn't be, when some of them pick the gastric

> bypass. Huh? Anyway, I have to remain neutral and support them in their

decision.

> Ditto with choice of surgeons.

>

> Marta

>

I know Marta, what seems like a no brainer to me is a " drastic " surgery to

another.... I asked her what was more drastic? Chopping your stomach in 1/2 and

then counstucting a pouch with no valve, or just reducing the natureal stomach

that is already there.....Argh!!! Maybe I just don't get it, seems to me like

the drastic surgery is the RNY.

in Bama

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

02/12-330.0 (minus 47.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

06/22- 290.8 (minus 86.7)BMI 46.

[Guest guest]

In a message dated 7/11/2003 4:38:17 PM Pacific Daylight Time,

MDL1031@... writes:

> Maybe I just don't get it, seems to me like

> the drastic surgery is the RNY.

Hi again Mel!

If all things are equal and surgery is surgery, why would someone still look

at the RNY? I would think the choice would be clear in the long-term out come

of excess weight lost and kept off! But, people will be people and

ultimately the decision is up to the individual.

Hugs and blessings, Ann

[Guest guest]

In a message dated 7/11/2003 7:09:17 PM Pacific Daylight Time,

ca_nurse_named_kat@... writes:

> I'd opt for an RNY if I had no alternative.

Hi Katharine!

Your point is well taken. I do understand that some people are pinned

against the wall by insurance (I hope that will be resolved VERY soon) but I was

really addressing the issue from the standpoint where insurance wasn't the

problem! I was looking at individuals who would be approved for the GR-DS and

opting instead for the RNY. I know my insurance wanted me to have the RNY and I

refused and battled with them. I am so glad they approved in the end -- you are

right, I could never have afforded the surgery had I had to pay it all out of

pocket!

Hugs and blessings, Ann

[Guest guest]

In a message dated 7/11/2003 7:30:19 PM Central Daylight Time,

positivelyann@... writes:

> Hi again Mel!

>

> If all things are equal and surgery is surgery, why would someone still look

>

> at the RNY? I would think the choice would be clear in the long-term out

> come

> of excess weight lost and kept off! But, people will be people and

> ultimately the decision is up to the individual.

>

> Hugs and blessings, Ann

>

>

I know here it is money and distance. With no docs doing nearby, and

insurance hating the Ds, it is hard to push something that will be a long battle

when

the results they see are right in their grasp. I cannot fathom though why

someone given he choice and all the correct facts picking the RNY. I guess I'm

kind of fact minded, and the fact is the DS to me is not the most drastic

surgery.

in Bama

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

02/12-330.0 (minus 47.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

06/22- 290.8 (minus 86.7)BMI 46.

[Guest guest]

In a message dated 7/11/2003 9:09:39 PM Central Daylight Time,

ca_nurse_named_kat@... writes:

> Can you imagine paying cash for every penny?

> Eeek. I'd opt for an RNY if I had no alternative.

> Katharine

>

That's why so many people go to Dr. Baltasar in Spain. He charges less than

12,000 for a DS and with travel most are out less than 15,000. A lady in MS

just got back from Spain, she loved it.

in Bama

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

02/12-330.0 (minus 47.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

06/22- 290.8 (minus 86.7)BMI 46.

[Guest guest]

I know some people are forced into the RNY because their insurances

will pay for that but not for the DS. Seems because the DS has only

been preformed for 15 yrs, LOL, that there is not enough evidence to

its efficiency and safety (this was per my friends insurnace

company). They would pay for an RNY for her but not a DS. She works

for an Eye doctor and there are only 2 employees that run that

office..she told the her boss about this problem and he dumped the

carrier and changed it to Blue Shield. After 3 yrs of fighting with

her previous carrier, she was approved by blue shield and had her

surgery 5 months later. She is 13 months out now, and has gone from

350 down to 192. So...I would see how people would just do that

rather then nothing or trying to come up with ALL the medical

expenses themselves. Can you imagine paying cash for every penny?

Eeek. I'd opt for an RNY if I had no alternative.

Katharine

> In a message dated 7/11/2003 4:38:17 PM Pacific Daylight Time,

> MDL1031@a... writes:

> > Maybe I just don't get it, seems to me like

> > the drastic surgery is the RNY.

>

> Hi again Mel!

>

> If all things are equal and surgery is surgery, why would someone

still look

> at the RNY? I would think the choice would be clear in the long-

term out come

> of excess weight lost and kept off! But, people will be people and

> ultimately the decision is up to the individual.

>

> Hugs and blessings, Ann

>

>

>

[Guest guest]

Different decisions? In my humble view, anyone who chooses the gastric

bypass can hardly be accused of having that decision being " informed. "

After all, quality of life, fewer long-term side effects and long-term

success at keeping weight off are pretty persuasive to me.

Surgeons are another matter, unless they happen to have lost operating

privileges in different hospitals and even one state . . . Ditto for

surgeons who learned how to do the DS but won't do it any more once they

have moved west and no longer have their mentor nearby. Anyone choosing

a surgeon who has only a few DS surgeries under their belt is likewise a

bit short in the " informed " department. At least we have good choices

for surgery here in California. Indeed, most DS surgeons who have been

around a bit and performed at least 100 surgeries on their own, are

pretty durn good!

Best -

Nick

[Guest guest]

Hi Nick!

I had a frustrating experience with some friends last weekend

regarding this subject. Two of three sisters had the RNY. Neither

of them knows if it was distal or not. (Sheesh!) One is doing very

well. The other is experiencing weight regain. The third sister is

also considering the RNY (she says it's because it's the only one

insurance will cover) and I was trying to talk her into the DS. She

understands that it has better long term results but she says there's

no way she can afford to self pay. (And I know that's true.) It's

so infuriating when someone you love makes a decision that you know

is the worst they could possibly choose. I don't know what else to

say to her. If I had the money to give her, I would. This is just

killing me.

Tracey

> Different decisions? In my humble view, anyone who chooses the

gastric

> bypass can hardly be accused of having that decision

being " informed. "

> After all, quality of life, fewer long-term side effects and long-

term

> success at keeping weight off are pretty persuasive to me.

>

> Best -

>

> Nick

>

>

>

>

>

[Guest guest]

I'm a 60 year old bilateral meniere's person who got a CI in my better ear in

1993 after my hearing took a plunge so as to become useless.? It was a miracle

but, for me, not a perfect miracle.? It does allow me to hear, to enjoy life and

to work in the proper environment(quiet).? Music is not better than ever and

rarely do I enjoy it.? I gave up my teaching job because I did not believe I

could as good a job as I wanted to be doing--there was too much extraneous noise

in the classroom that distracted me.? A big plus is that I have not had an

attack of vertigo since the operation except for one lalapalooza during

recovery.? My understanding is that everyone has different results but this has

been my experience.

Decisions

Hi. I am in the midst of my decision whether or not to have CI's. I am a 62 year

old bi-lateral meniere's person with a VNR in 1995. My discrimination is 4% at

100db and 24% at 105db. My audiologist recommended CI's. Naturally, I'm nervous.

I am an attorney and do use what hearing I have to the best of my ability. I am

leaning towards the CI and maybe bilateral CI's. I've read that improvement is

likely, that it takes about 4 months to fully realize the benefits of CI, that

music is better than ever, that some of my meniere's symptoms will remain and

some will dissappear. I would appreciate feedback to help me. thanks

[Guest guest]

Hi Bruce,

I know you from one of the Meniere's Forums. I have bilateral Meniere's and

bilateral cochlear implants (CIs). I had my worst ear implanted first and had

excellent results even though that ear was essentially unstimulated for over 30

years due to the inability to wear a hearing aid due to severe distortion,

hyperacusis and recruitment. I had my " better " ear implanted back in April.

While individual results with CIs vary tremendously I've had excellent results

in both ears. I am one of the fortunate ones who can enjoy music again and I'm

able to use a telephone or cell phone with either ear. Welcome to the forum and

best of luck with your CI decision/journey. It is one trip I'm very glad I

took.

Best regards,

Jim

>

> Hi. I am in the midst of my decision whether or not to have CI's. I am a 62

year old bi-lateral meniere's person with a VNR in 1995. My discrimination is

4% at 100db and 24% at 105db. My audiologist recommended CI's. Naturally, I'm

nervous. I am an attorney and do use what hearing I have to the best of my

ability. I am leaning towards the CI and maybe bilateral CI's. I've read that

improvement is likely, that it takes about 4 months to fully realize the

benefits of CI, that music is better than ever, that some of my meniere's

symptoms will remain and some will dissappear. I would appreciate feedback to

help me. thanks

>

[Guest guest]

We are going back to the doctors office today. He had recomended treatment for

my husband. I am extremely concerned about the treatment, especially with all

the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The

doctor said he had ten to fifteen years to live with out treatment. I am very

confused and very concerned about long term side affects. Thinking today that we

will ask if he can be monitored because he is geno type 1b. Any one else in this

situation?

Diane

[Guest guest]

i am a 1a but i feel i had to try treatment, even with all the scarey possibilities...but the fact that death is one day a surity from this disease, I felt trying to beat it was my only option. I know some people that have absolutely no side effects from tretments, I know some that have no affter affects, I know some that have beat it and some that didn't...I had to quit due to heart issues that arrose, but I am also considering trying again with the new treatment....

now this is just my thoughts, only you can decide what is best for your family

Blessigns to you all

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

From: dianedellicarpini <dellcar9@...>Subject: [ ] decisions Date: Thursday, February 3, 2011, 10:11 AM

We are going back to the doctors office today. He had recomended treatment for my husband. I am extremely concerned about the treatment, especially with all the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The doctor said he had ten to fifteen years to live with out treatment. I am very confused and very concerned about long term side affects. Thinking today that we will ask if he can be monitored because he is geno type 1b. Any one else in this situation?Diane