New to the group

[Guest guest]

I stopped taking Nasonex a month or 2 ago as i ran out and had to wait ages on an ENT appointment, eventually after a few days my nose was not much different although i´ve been taking some low doses of betamethazone tablets with lortadine. Helps a little but still not much smell but way cheaper than buying Nasonex every month. Actually saying that I stopped taking inhalers a long time ago as well but i think the tablets help there as well. Diet helps like staying off coke, Chinese food, dairy products and avoid crisps and dodgy junk food full of mysteries colours and drugs. From: samters [mailto:samters ] On Behalf Of rainchicka22Sent: Tuesday, November 09, 2010 11:46 PMsamters Subject: New to the group Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

[Guest guest]

Interesting enough most have the polyps removed then desense so whats that all about. Doctors are dodgy car salesmen but sell drugs for pharmaceutical companies, nothing more. From: samters [mailto:samters ] On Behalf Of BannisterSent: Friday, November 12, 2010 10:27 AMsamters Subject: Re: New to the group That is a dreadful excuse for your Dr to give you for not doing desens!!!!!!!!!!!!!!! Your polyps do not have to be bad....your asthma will greatly benefit from desens, and my experience with hives - they were awful pre-desensitisation and have been almost non-existant since. The hives were a really horrible isssue for me, and I was told it was nothing to do with AERD/Samters triad..yet they started when the asthma started and disappeared with desensitisation. I'm sure others have a similar story, so you need to be armed with this info and try again to push for desens. Good luck,Becky From: " aio_cps@... " <aio_cps@...> " samters " <samters >Sent: Fri, 12 November, 2010 13:14:57Subject: Re: New to the group HiI can totally relate!! Have gained from substantial weight as wellWent to dr today to see about desensitizationHe said my polyps aren't bad enough, my asthma not controlled enough and my chronic hives would get worseAlso when I asked him about perhaps needing a low salicylate diet he actually laughed said not aware of such a thing I'm bummed way out!!Sent from my iPhoneOn Nov 9, 2010, at 8:46 PM, " rainchicka22 " <janaeh@...> wrote: Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

[Guest guest]

Remember doctors can get struck off if they don´t provide you with the proper ¨drugs¨ from their little books or surgery. From: samters [mailto:samters ] On Behalf Of elizabeth lSent: Friday, November 12, 2010 10:31 AMsamters Subject: Re: New to the group Its funny how we think Doctors can cure and know everything. There was a comment the other day how a doctor was saying the person was self diagnosed . Hello Doctors of this century we are very well informed , thank you internet, perhaps more than they are just because we have the time.Lets remember these are human beings just like we are only they have a chip on their shoulder. Makes me so angry that you would see a doctor and be well informed and that doctor would just laugh not even considering the idea, Sorry just venting From: " aio_cps@... " <aio_cps@...> " samters " <samters >Sent: Fri, November 12, 2010 8:14:57 AMSubject: Re: New to the group HiI can totally relate!! Have gained from substantial weight as wellWent to dr today to see about desensitizationHe said my polyps aren't bad enough, my asthma not controlled enough and my chronic hives would get worseAlso when I asked him about perhaps needing a low salicylate diet he actually laughed said not aware of such a thing I'm bummed way out!!Sent from my iPhoneOn Nov 9, 2010, at 8:46 PM, " rainchicka22 " <janaeh@...> wrote: Hello All,I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products. I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief. Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?Sorry for the long post.Janae

[Guest guest]

You need a new doctor - the nasals should be free of polyps (or as clear as

possible) prior to aspirin desens.

I would drop your doctor like a hot potato.

>

>

>

> Hello All,

>

> I am new to this group and boy was I thrilled to find you! I have had Samter's

for the last five years and like many of you sometimes I feel like my little

bucket of hope has a big hole in the bottom of it. I do not have medical

insurance so trying to find something that works has become rather expensive. I

have tried everything from alternative therapies to drugs to diet only to

continue with the same old problems. It is wonderful to hear about the things

that are working for some of you. I'm wondering if it might also be good to post

all the things that haven't worked so we can save others from spending

unnecessary time and money on those products.

>

> I also have two questions: I ran out of Nasonex while on vacation last March

and for about a week I actually started feeling better. All of a sudden I could

smell and I sounded less stuffy. My mom even commented about it while talking to

me on the phone. Then I started getting stuffy again and tried going back on it.

Ever since then I seem to become MORE congested when I use it than when I don't.

Has anyone else ever become allergic to their nasal spray? I've tried using

several other brands with no relief.

>

> Also, in the course of the last two years I have gained 40 lbs from all of the

steroids I've been on. My face has become very puffy. When I mentioned this to

my doctor he didn't seem too alarmed by it. He just told me to start exercising

more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day

and am still unable to lose weight. Has anyone ever heard of steroid toxicity

and how it is treated?

>

> Sorry for the long post.

>

> Janae

>

> <http://www.bandoo.com/wp/ie.php?plg=ie & ad2=0 & subs= & elm=sign>

>

[Guest guest]

I was desensitized in San diego the problem was that i developed severe gastritis and that was the end of that the doctor in nyack ny is very good actually he was my allergist and is very well informedFrom: lynn b <itsrosie30@...>samters Sent: Mon, November 15, 2010 8:45:33 AMSubject: Re: New to the group

You need a new doctor - the nasals should be free of polyps (or as clear as possible) prior to aspirin desens.

I would drop your doctor like a hot potato.

>

>

>

> Hello All,

>

> I am new to this group and boy was I thrilled to find you! I have had Samter's for the last five years and like many of you sometimes I feel like my little bucket of hope has a big hole in the bottom of it. I do not have medical insurance so trying to find something that works has become rather expensive. I have tried everything from alternative therapies to drugs to diet only to continue with the same old problems. It is wonderful to hear about the things that are working for some of you. I'm wondering if it might also be good to post all the things that haven't worked so we can save others from spending unnecessary time and money on those products.

>

> I also have two questions: I ran out of Nasonex while on vacation last March and for about a week I actually started feeling better. All of a sudden I could smell and I sounded less stuffy. My mom even commented about it while talking to me on the phone. Then I started getting stuffy again and tried going back on it. Ever since then I seem to become MORE congested when I use it than when I don't. Has anyone else ever become allergic to their nasal spray? I've tried using several other brands with no relief.

>

> Also, in the course of the last two years I have gained 40 lbs from all of the steroids I've been on. My face has become very puffy. When I mentioned this to my doctor he didn't seem too alarmed by it. He just told me to start exercising more. Well, I am a runner and I try to exercise between 30 min to 1.5 hrs/day and am still unable to lose weight. Has anyone ever heard of steroid toxicity and how it is treated?

>

> Sorry for the long post.

>

> Janae

>

> <http://www.bandoo.com/wp/ie.php?plg=ie & ad2=0 & subs= & elm=sign>

>

[Guest guest]

Hi Judy,

I would first recommend you find a scoliosis specialist. I have some

websites that would be good for you to check out. Some of them list doctors in

your area that specialize.

http://www.scoliosis-assoc.org/

http://www.spinemd.com/about-us/

http://www.srs.org/

http://www.fixscoliosis.com/forum.php

http://www.scoliosis-support.org/

http://www.scoliosissystems.com/?gclid=CLfv_5z1l6YCFY9x5QodXUwFmw

http://www.spineuniverse.com/

http://www.bonati.com/discussion/

http://www.scoliosis.org/forum/

http://www.sdscoliosis.com/

http://www.iscoliosis.com/

http://www.scoliosisjournal.com/

http://livingtwisted.wordpress.com/

http://www.brainandspine.org.uk/helpline/neurology_in_the_news/chronic_back.html

http://www.mypainspecialist.com/index.html

I bet you didn't know there were so many sites. I was amazed when I started

researching. I was diagnosed in 1965. I've had over 10 operations and in 1999

I had to retire due to the back pain. There is no more surgical intervention at

this time but I did find a pain management doctor and start a series of

injections tomorrow.

I understand your frustration with dealing with pain. I've used a Duragesic

(Fentanyl) patch and started a new oral med called Nuycynta.

I wish you the best of luck and if you ever need to chat or something let me

know.

Janie

>

> I just found out friday I have scoliosis of the spine. I knew I had osterposis

I thought that way why i humped over. Plus I fell about 14 months ago and

fractured my back. The fracture is healing but arthritis set in.

>

> I am in pain all the time. I can take the strongest pain meds I will hurt in

about four hours. I don't know much about the disease. I am 51 does it get

worse? Is there anything good for comfort?

>

> any suggestions about the disease would be appreciated.

>

> Judy

>

[Guest guest]

Hi Doug:

Menieres finally finished off my hearing in 2003. Hearing aids had stopped

helping so I got a cochlear implant as fast as I could--I didn't like

communicating by notepad. It was a miracle to be able to have a conversation

with my wife and kids again.

For me it's like hearing through a microphone, but it's hearing. I haven't

worked at trying to make music sound musical and it doesn't sound like it did

when hearing aids where helping me. The decision for me was easy because both

ears had become useless.

Left me know if you have other questions.

Hal

New to the Group

Hello, All.

I lost the remainder of my hearing a few weeks ago (Meniere's). I read the

Wikipedia article on implants, but I don't think it's a reliable source. I'm

trying to decide if they're for me. How should I go about making the decision?

What does the world sound like through implants?

Regards,

Doug

[Guest guest]

Doug - Meniere's got most of my hearing too. My left ear has been completely

deaf for 4 years and the right ear has a little bit of hearing, but is very

poor. The only way I can understand anyone is if they are within 5 feet or so

and I can see their face.

I got a CI (activated May 16, 2011) and it is making a huge difference in my

life. Being deaf meant becoming invisible for me. I was getting left out of

most of my family life because it was very difficult to communicate me and much

easier to ignore me. I've only been activated for 20 days and the sound is

faint and robotic, but ti's already making a huge difference in being able to

comprehend what is being said.

I would think it would at least be worth a look.

Bob W

>

> Hello, All.

>

> I lost the remainder of my hearing a few weeks ago (Meniere's). I read the

Wikipedia article on implants, but I don't think it's a reliable source. I'm

trying to decide if they're for me. How should I go about making the decision?

What does the world sound like through implants?

>

> Regards,

> Doug

>

[Guest guest]

Doug,

I lost most of my right ear to Meniere's over 20 years ago but my left was 100%.

When my left ear went about 2-3 years ago it was very bad. I managed to cope

with some new high tech HA's which cost me $8000. Although I had residual

hearing in both ears, the left kept getting worse. a neighbor with a CI told me

I should get tested. Although all of the hearing professionals on my 'team' had

told me only bad things about CI's, she told me her they were completely wrong.

The short story is I was implanted about 6 months later in my left ear. It has

been nothing short of remarkable. I can hardly wait to get my right ear done as

well. My surgeon tells me that in the field of medical implants the CI is the

most successful of all.

My only advice to you would be to do your own research. Don't believe a word you

hear from all the professionals who neither wear a CI or work with CI patients.

I was amazed to find out a rare it is to have a CI. The only reason I can find

relates to the huge cost of the device. After 30+ years of CI's it is hard to

understand how they are still so expensive. There is no justification for the

processor to cost much more than a good digital HA. I cannot imagine why the

actual implant should cost $25-35,000.

If the price was much lower, the numbers would increase dramatically, just like

all other high tech devices. They need more competition.

Good luck.

Lawrence Levin

[Guest guest]

Many thanks to all who have taken to helping me out.  I truly appreciate it. 

I had no idea so many folks have Meniere's.  I was given to understand that it

was kind of a rare thing.

 

Would you say that the sound quality of a CI is like that of an AM transistor

radio?

 

Of what does the screening process consist?

 

What is the recovery time like? Painful?

 

Thanks, again, for all your help.

 

Doug

From: Lawrence Levin <lawrencerlevin@...>

Subject: Re: New to the Group

" CI Hear " < >

Date: Monday, June 6, 2011, 10:44 AM

 

Doug,

I lost most of my right ear to Meniere's over 20 years ago but my left was 100%.

When my left ear went about 2-3 years ago it was very bad. I managed to cope

with some new high tech HA's which cost me $8000. Although I had residual

hearing in both ears, the left kept getting worse. a neighbor with a CI told me

I should get tested. Although all of the hearing professionals on my 'team' had

told me only bad things about CI's, she told me her they were completely wrong.

The short story is I was implanted about 6 months later in my left ear. It has

been nothing short of remarkable. I can hardly wait to get my right ear done as

well. My surgeon tells me that in the field of medical implants the CI is the

most successful of all.

My only advice to you would be to do your own research. Don't believe a word you

hear from all the professionals who neither wear a CI or work with CI patients.

I was amazed to find out a rare it is to have a CI. The only reason I can find

relates to the huge cost of the device. After 30+ years of CI's it is hard to

understand how they are still so expensive. There is no justification for the

processor to cost much more than a good digital HA. I cannot imagine why the

actual implant should cost $25-35,000.

If the price was much lower, the numbers would increase dramatically, just like

all other high tech devices. They need more competition.

Good luck.

Lawrence Levin

[Guest guest]

AM transistor radio? How old are you?

Re: New to the Group

" CI Hear " < >

Date: Monday, June 6, 2011, 10:44 AM

Doug,

I lost most of my right ear to Meniere's over 20 years ago but my left was 100%.

When my left ear went about 2-3 years ago it was very bad. I managed to cope

with some new high tech HA's which cost me $8000. Although I had residual

hearing in both ears, the left kept getting worse. a neighbor with a CI told me

I should get tested. Although all of the hearing professionals on my 'team' had

told me only bad things about CI's, she told me her they were completely wrong.

The short story is I was implanted about 6 months later in my left ear. It has

been nothing short of remarkable. I can hardly wait to get my right ear done as

well. My surgeon tells me that in the field of medical implants the CI is the

most successful of all.

My only advice to you would be to do your own research. Don't believe a word you

hear from all the professionals who neither wear a CI or work with CI patients.

I was amazed to find out a rare it is to have a CI. The only reason I can find

relates to the huge cost of the device. After 30+ years of CI's it is hard to

understand how they are still so expensive. There is no justification for the

processor to cost much more than a good digital HA. I cannot imagine why the

actual implant should cost $25-35,000.

If the price was much lower, the numbers would increase dramatically, just like

all other high tech devices. They need more competition.

Good luck.

Lawrence Levin

[Guest guest]

The screening process is with a rehab audiologist to verify lack of voice

discrimination without lip-reading.  This is not a test that you want to do

well on!  Blue Cross and other insurance companies require less than 60% voice

discrimination;  Medicare requires less than 40%.

 

The recovery time is fast.  I had the implant in March of this year on a Friday

and went back to work as a teacher on Tuesday; no problems.  I had to sleep

sitting up for 2 nights to start with.  I don't remember pain being an issue

other than non-dissolved sutures poking through weeks later. Then approximately

4 weeks later you get the external processor/microphone with several trips to

following for programming adjustments, etc.  I am so excited about my progress

that I am pursuing having my other ear done asap.  About 2 weeks ago I had

another voice discrimination test and I understood 85% without lipreading!

 

My hospital/doctor statement list charges over $80,000 which I think is somewhat

egregious.  Thank God for insurance!  I was only there for less than 8 hours!

From: <doug_morgan05@...>

Sent: Monday, June 6, 2011 7:57 PM

Subject: Re: Re: New to the Group

 

Many thanks to all who have taken to helping me out.  I truly appreciate it. 

I had no idea so many folks have Meniere's.  I was given to understand that it

was kind of a rare thing.

 

Would you say that the sound quality of a CI is like that of an AM transistor

radio?

 

Of what does the screening process consist?

 

What is the recovery time like? Painful?

 

Thanks, again, for all your help.

 

Doug

From: Lawrence Levin <lawrencerlevin@...>

Subject: Re: New to the Group

" CI Hear " < >

Date: Monday, June 6, 2011, 10:44 AM

 

Doug,

I lost most of my right ear to Meniere's over 20 years ago but my left was 100%.

When my left ear went about 2-3 years ago it was very bad. I managed to cope

with some new high tech HA's which cost me $8000. Although I had residual

hearing in both ears, the left kept getting worse. a neighbor with a CI told me

I should get tested. Although all of the hearing professionals on my 'team' had

told me only bad things about CI's, she told me her they were completely wrong.

The short story is I was implanted about 6 months later in my left ear. It has

been nothing short of remarkable. I can hardly wait to get my right ear done as

well. My surgeon tells me that in the field of medical implants the CI is the

most successful of all.

My only advice to you would be to do your own research. Don't believe a word you

hear from all the professionals who neither wear a CI or work with CI patients.

I was amazed to find out a rare it is to have a CI. The only reason I can find

relates to the huge cost of the device. After 30+ years of CI's it is hard to

understand how they are still so expensive. There is no justification for the

processor to cost much more than a good digital HA. I cannot imagine why the

actual implant should cost $25-35,000.

If the price was much lower, the numbers would increase dramatically, just like

all other high tech devices. They need more competition.

Good luck.

Lawrence Levin

[Guest guest]

Sherry, I am a nurse too, and I KNOW what you mean about how knowing too

much can be really scary. I was an oncology nurse, and had to give extra

strong chemo to patients before their stem cell transplants. I loved my job,

and I loved my patients, but it was hard to give them the chemo knowing in

detail exactly what it was doing to them and what the consequences could be

down the road. I watched a lot of wonderful people die, too, and that is why

I practice and teach immunics.

It's important, if you want to learn this skill, that you gain access to the

cure college. That is at curedrive.org. You have total access to the

curedrive part where you get your basic training. When you are ready to go

on to the more advanced lessons, you will want to get a kit, which will get

you access to the rest of the web site. Part of the kit is a couple of books

which are very helpful in learning the skills. Off the top of my head I

can't tell you what else is in the kit because that has changed since I

first joined the cure drive. However the best thing is your password to the

rest of the site. There is a charge for the kit. This is needed to defray

the cost of maintaining the site and to pay living expenses for those who

take care of it. This is a non-profit organization, so no-one is getting

rich off it (in fact the staff are still unpaid and donate their own money

to maintain it.

Immunics is two things: 1) a skill set that enables people to cure things

and 2) a religious practice. No one has to give up their religion. It is

compatible with any and all religions. We call it a religion because when we

cure something, we do what I recognize as prayer that connects us to God and

to the realization that the skills are God-given and everyone can do them.

The total aim of the cure drive is to teach people to use their latent

abilities to cure things. The most amazing thing I have done is gain the

ability to stop cold or flu symptoms when they appear and prevent myself

from getting sick from those viruses. I have done it many times. Nip it in

the bud! So amazing every time I do it! Since doing immunics, I have not had

a viral disease since 2005, because one of the easiest things to do is kill

viruses. I have also cured depression, lost 70 pounds, and developed an

awesome God connection.

The first thing you learn is how to test. That is in lesson 1 on the cure

drive page. Go there (curedrive.org) and do the introductory lessons.

Knowing learn that right away so you can go to the " calm clear place " and

probably need less medication when you have your surgery.

Love,

Meredith

--

Meredith W. Nisbet

Arkadelphia Talent Education

Lessons on violin, viola, cello, piano

Member American Suzuki Association and ASTA

[Guest guest]

My doctor suggested that I try Orthovisc injections, one a week for 3 weeks. Did

anyone have luck with these? It seems like there is so much to learn if I end up

having TKR. I would like to believe that the injections will work but I think I

am headed for the surgery as my knee is almost bone on bone on the medial side

and the kneecap is also involved.

[Guest guest]

Welcome to our family. I am so sorry that you had a hard time. If you would

like to call me I can help answer your questions a little easier that way. I

have been sealing with this disease for over 20 years and have had all the

surgeries for it. My phone number is 478-919-8813. I live in Georgia but feel

free to call any time.

Sent from my iPhone

On Jan 24, 2012, at 23:50, " kgrumpy19 " <kgrumpy19@...> wrote:

> Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

>

>

[Guest guest]

Wow, ! That *was* a roller-coaster! Welcome. Lots of experience and

kindness in this place.

Hard to say what your future holds, because we are each of us so different. I

lost 60 pounds In three months and I thought *that* was bad (and it was). Also

ended up in a cardiac ward for five days for the same reason. But *my* docs

didn't see that as an emergency. . . .

I'm four weeks post Heller, and the thing that's most improved is the regurging.

There's still some, but not much. And really, only if I've been pushing it.

But I haven't been able to get off of soft, either, though I've been cleared to

try. As soon's I do, everything sticks again. But I've also regained about 10

pounds, so obviously stuff IS going down and being processed. Just going to be

a waiting game, I guess. Very important for those of us who had the huge weight

losses is regaining optimum health as quickly as possible. Do some reading on

nutrition, and start working on eating as healthily as possible even with the

limitations of a soft diet. I was so starved/malnourished that I've lost about

half my hair -- feel like after chemo, though I haven't cut it all off (yet).

Got a healthy crop coming in, but it's very short and is only an inch or two

long, dating back to post first hospitalization when I simply made nutrition

(staying alive til the operation!) my ONLY job. The old damaged hair, just

keeps coming out. My hair was to my waist, mostly worn in the Gibson Girl kinda

bun. Now, what's left of the longest hair is mid shoulder blade, and it getting

shorter by the day. Going to take close to five years to get my hair back to

where it was. . . . If ever.

Some have kept improving for two or three years after, and some are back to

where they were before. For *most,* the improvement is so great, they don't

need the group any more, and they're just gone. Some are going to need tune-ups

-- a dilation or maybe even a redo. Frustrating, because we all want an ANSWER,

and there just aren't any one size fits all answers! There do seem to be a set

of foods that causes problems even post-Heller: rice, salads, eggs for some,

meats, popcorn. . . . And that said: it's *absolutely* individual! Best to

just go slow, stay slow, don't push it. Try one new thing at a time so you know

if that one is the problem, if there is one. This disease is absolutely a

lesson in learning to be here now, and acceptance. Learning to adapt, learning

flexibility will help the most. Stay away from pity parties: they'll set you

back the most. If you feel one coming on, check out this site:

http://www.ebpatient.com/howtopuree.html

Some questions for *you* lol! Boy or girl? Who did the surgery? Besides not

being able to eat, what other symptoms? Spasms? Regurging? (Always helpful here

to distinguish between vomiting which involves stomach contents, and

regurgitating, which involves food which hasn't made it to the tummy yet.)

Heartburn, before/after?

Again, welcome! Read the archives, there's a wealth of information there. Try

" post Heller " in the search box above. " Recovery " and " post op " are also good

search terms.

, West Virginia

>

> Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

>

[Guest guest]

Hi kelly

I can't really add anything other than to say welcome and I am glad you have

found this group. You will learn that for each of us the sypmtoms can vary and

we all have different things that help/hinder. you will always find moral

support here though when you have down times and you need never feel alone. I

wish you the best whilst you get used to it and learn to live with it. Although

we all have times when we feel overwhelmed by it, it is possible to stay

positive by learning to manage it practically. Not always easy but practise

being positive and thankful for the good things in your life. Sending you lots

of love Kay UK

>

> Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

>

[Guest guest]

Hello I'm new to the group, I've been following everyone stories. I was

diagnosed in Sept. 2010 I had my HM in April 2010, It was unsuccessful I have a

appt at USC with a Dr Kline. This has been a great group to follow cause I know

I'm not going crazy lol, and that there's lot of people going through the same

thing as me. Its hard I'm 34 and a mother of five, and feel like crap most of

the day. Thanks from Tehachapi,CA

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

There seems to be many of us that have had failed HM's

> > >

> > > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > >

> >

>

>

>

>

>

>

[Guest guest]

,

 

Good luck with Dr. Kline and please let us know how it goes with them at USC,

sounds like you have also been given the run around like most of us......it's

frustrating....hang in there and arm yourself with knowledge....read all that

you can on this disease and ask these doctors lots of questions. 

 

Julee from Oregon

________________________________

From: " brandygarcia33@... " <brandygarcia33@...>

achalasia

Sent: Wednesday, January 25, 2012 8:17 PM

Subject: Re: Re: New to the group

 

Yes Dr Kline is a GI doctor there, I had a dilation in Nov. But no luck! I'm

going to him to see if he can help me. Since my Dr. didn't remember after being

seen by him 9 times. And having a HM he tried to diagnose me with the achalasia

again I about crap my pants. His nurse just put her head down with shame because

my dr (Dr Gupta in Bakersfield) didn't realize that he's been treating me with

this for a year!!

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Thanks for the advice!!

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Yep. If you read back a few years in this board, you'll notice lotsa peeps show

up shell shocked with the new diagnosis, stay till a few weeks past the

Heller's, and disappear. They're the 90%. The ones that keep coming back (with

a few exceptions) are the ones still having problems. We self sort, as it were.

And, alas, there's not a one size fits all " cure " ~~ in fact, no cure at all,

just amelioration. Could wish it were different, but it's not.

Love and comfort sent your way.

>

>

> There seems to be many of us that have had failed HM's

>

>

[Guest guest]

Thanks!!

Sent via BlackBerry by AT & T

Re: New to the group

Yep. If you read back a few years in this board, you'll notice lotsa peeps show

up shell shocked with the new diagnosis, stay till a few weeks past the

Heller's, and disappear. They're the 90%. The ones that keep coming back (with

a few exceptions) are the ones still having problems. We self sort, as it were.

And, alas, there's not a one size fits all " cure " ~~ in fact, no cure at all,

just amelioration. Could wish it were different, but it's not.

Love and comfort sent your way.

>

>

> There seems to be many of us that have had failed HM's

>

>

[Guest guest]

I think I might qualify as one of the few exceptions. My achalasia is

manageable, though annoying. I can eat in restaurants and people don't know. 

One thing I highly recommend for people with questions is that they search the

site and the message base. There is an amazing amount of information here.

Dan

Sent from my Samsung Galaxy Tabpuddleriver13 <puddleriver13@...>

wrote:Yep. If you read back a few years in this board, you'll notice lotsa peeps

show up shell shocked with the new diagnosis, stay till a few weeks past the

Heller's, and disappear. They're the 90%. The ones that keep coming back (with

a few exceptions) are the ones still having problems. We self sort, as it were.

And, alas, there's not a one size fits all " cure " ~~ in fact, no cure at all,

just amelioration. Could wish it were different, but it's not.

Love and comfort sent your way.

>

>

> There seems to be many of us that have had failed HM's

>

>

[Guest guest]

Yep, my husband too. Had the Heller in Nov 2008 -- & serious ups & downs since.

He'll be fine for a while, then he can't eat & will throw up for about a month

-- then he'll slowly work his way up to eating again -- then a few months later

back to not eating & throwing up. He was throwing up again over the holiday, now

he's eating soup -- soup for breakfast, soup for lunch, soup for dinner. But it

seems to stay down. And all he can drink is tea.

> >

> >

> > There seems to be many of us that have had failed HM's

> >

> >

>