ny

[Guest guest]

Dear Ann,

It is a matter of which opinion I want to follow. Dr. Altorki, the thoracic surgeon and Dr. Richter, the GI doctor, both highly regarded, said "Esophagectomy." Dr. Dempsey, the Temple Univ. surgeon, not as well known, but highly regarded, said, if you can live with it, then don't have the surgery yet. His first choice of operation is esophagoplasty, then esophagectomy.

As Notan said, "There are no right answers, just good guesses." I am "guessing" the least radical approach as the one to take for now.

After October 15th, when work is quieter, I will be contacting Dr. Rice for his opinion. Chances are he will agree with his former associate, Dr. Richter, but it can't hurt to find out, and one should never second guess a doctor before hearing what he has to say.

My "series" as you know was: "Doing Nothing is not an Option." I have chosen the path that will allow me future choices. Thanks Ann, for asking.

Love,

In a message dated 9/20/2006 9:25:40 A.M. Eastern Daylight Time, lilac_blossom_lady@... writes:

Dear ,

What is your situation now in practical terms? Is it up to you to arrange an appointment when you have come to a decision?

Best Wishes and love from Ann in England XXXX

[Guest guest]

,

I haven't put in my two cents lately because I also have been very

busy with work, but I have been reading everything. In regard to

contacting Dr. Rice at TCC, I am going to be trying to get an appt.

with him in October sometime hopefully (before we have to start

worrying about weather conditions) to discuss my options. You'll have

to let me know when you are going - wouldn't it be great to meet?!?!

On another note, I am trying to understand how exactly the

esophagoplasty will improve your condition for any worthwhile length

of time. Again, I have not done the research on this type of surgery,

and I know it is not very common. From an anatomical standpoint, even

if you " remove " the pouch that has formed at the base of the esophagus

due to it stretching out over the years, that may help in the sense

that food does not collect there. However, it does not restore

peristalsis or make the LES more functional. I would think that over a

period of time, you would be right back in the same situation, only

the esophagus would be weaker because it had already been " modified " .

So eventually you'd be exactly back where you are now, facing the same

decision and having to possibly undergo another major surgery.

Again, I have not done any research on this, but as someone who is

also facing the esophagectomy decision, and who is end stage Achalasia

with a mega-esophagus, this is not an option I have been presented

with by any of the surgeons I have contacted. Clearly I am interested

if this is a realistic option, but given the assorted issues we face,

I am just trying to understand how this procedure would be beneficial

over the long term, or if it is just a temporary fix. I don't see how

this is much less radical than the esophagectomy, and while you will

be able to keep part of your esophagus, it will still be a non-

functional esophagus at that, and I would think it would eventually

stretch out again and lead you down this same road.

Please don't take my comments wrong, you know my fears over the

esophagectomy as we have had many lengthy conversations. I'm just

trying to make sense of this as a viable option since I am looking at

my choices as well. Did Dr. Dempsey discuss the longevity of this

option? Being 33 years old, I have to look down the long road ahead

and wonder how long it would be until I was back in the same boat.

As always, I'm very interested to hear your thoughts on this.

Keep me posted on when you will see Dr. Rice. Maybe we could make it a

package deal and bombard him together....attack of the end-stagers.

Love, in NY

Re: NY

achalasia

>

> Dear Ann,

>

> It is a matter of which opinion I want to follow. Dr.

> Altorki, the

> thoracic surgeon and Dr. Richter, the GI doctor, both highly

> regarded, said

> " Esophagectomy. " Dr. Dempsey, the Temple Univ. surgeon, not as

> well known, but

> highly regarded, said, if you can live with it, then don't have

> the surgery

> yet. His first choice of operation is esophagoplasty, then

> esophagectomy.

>

> As Notan said, " There are no right answers, just good

> guesses. " I am

> " guessing " the least radical approach as the one to take for now.

>

> After October 15th, when work is quieter, I will be

> contacting Dr. Rice

> for his opinion. Chances are he will agree with his former

> associate, Dr.

> Richter, but it can't hurt to find out, and one should never

> second guess a

> doctor before hearing what he has to say.

>

> My " series " as you know was: " Doing Nothing is not an

> Option. " I have

> chosen the path that will allow me future choices. Thanks Ann,

> for asking.

>

> Love,

>

>

>

>

>

>

>

> In a message dated 9/20/2006 9:25:40 A.M. Eastern Daylight Time,

> lilac_blossom_lady@... writes:

>

>

>

>

> Dear ,

>

> What is your situation now in practical terms? Is it up to you

> to arrange

> an appointment when you have come to a decision?

>

> Best Wishes and love from Ann in England XXXX

>

> ____________________________________

>

>

>

>

>

>

>

>

[Guest guest]

,

Thank you for a really thought provoking post on a life choice we are both facing.

We are a generation apart in age and as you alluded to, might cause us to evaluate our own situations differently.

Right now I am planning on sending my records to Dr. Rice and to inquire whether he needs to see me in person. I am hoping he could read my medical history, see my X-rays and talk with me over the phone. He is more than entitled to his consultation fee, but the time and costs saved in not going has value to me. It is up to him to agree to this arrangement.

On another day I really would love to meet you.

You have raised a number of good questions regarding the esophagoplasty (plasty) and I must confess that I still do not know all that much about it. While I have read a number of articles about it, the use of the operation is not primarily for achalasia and thus the shortage of research materials. It is indeed a rare operation and I would have to suspend my usual criteria (at least 50 surgeries) for a surgeon performing this operation. That reason alone might be enough to go to a more experienced surgeon for an esophagectomy. (ectomy)

As I understand it , the plasty would be a reconstruction of the esophagus, removing the pouch and narrowing the walls to a certain extent. While it is very major surgery it leaves me with an esophagus. Yes, it is a non-functioning one, but its been hanging in there non-functioning for 24 years and I still want to have it. I don't have an answer for you as to how long it can remain in the shape it will be in immediately following surgery. I don't think any surgeon could, just like a similar question that would be asked about the myotomy. But yes, he could probably give you some kind of an idea.

I see the operation as a "new - start" putting the esophagus back to a certain extent to the way it was 15 years ago. With better techniques now, I am assuming (not knowing) that the periodic dilatations that others have had post-myotomy to maintain the integrity of the esophagus, might be done in order to prevent the re-occurrence of the pouch.

At my age it might be the best alternative if I must have surgery. I wish I could give you answers that contained a greater certainty. Its a "hope." I don't think Dr. Dempsey considered it at all for it to be a temporary fix. If it was just temporary, I think he would have said to me to just have the ectomy then and get it over with.

Contrary to what you said, with a plasty, most, if not all of the esophagus would still be there, far less radical than an ectomy, which would leave a little stub, be a far more serious surgery with a much longer recuperation period, and possibly more complications. Remember also, the plasty leaves your stomach the way it was, and does not "stretch" it into an "esophagus."

The only "small" detail we lack is a surgeon in this country who has performed many plasty's. I'm not about to run off to Brazil where there might be more experienced surgeons (though I did love being in Rio a couple of years ago).

, you've told me that you can still get by fairly well, and that if you choose to do the surgery you wanted it to be on your terms. Based upon that, unless Dr. Dempsey found something on your X-rays to the contrary, I am guessing that he might also tell you to hold off doing any surgery. One caveat though. From your description of your esophagus, it seems to me that you might be much more mega than I am, and that might swing him over to an ectomy. I think you should see him before going to Dr. Rice. Dr. Dempsey strikes me as the kind of person with a much more open mind than other surgeons.

, as the saying goes, "Surgeons cut." Any highly regarded surgeon who tells a patient that you don't need to be "cut" when others have said that you should be, is a surgeon worth listening to.

Love,

In a message dated 9/20/2006 12:29:15 P.M. Eastern Standard Time, tracylb@... writes:

,I haven't put in my two cents lately because I also have been very busy with work, but I have been reading everything. In regard to contacting Dr. Rice at TCC, I am going to be trying to get an appt. with him in October sometime hopefully (before we have to start worrying about weather conditions) to discuss my options. You'll have to let me know when you are going - wouldn't it be great to meet?!?! On another note, I am trying to understand how exactly the esophagoplasty will improve your condition for any worthwhile length of time. Again, I have not done the research on this type of surgery, and I know it is not very common. From an anatomical standpoint, even if you "remove" the pouch that has formed at the base of the esophagus due to it stretching out over the years, that may help in the sense that food does not collect there. However, it does not restore peristalsis or make the LES more functional. I would think that over a period of time, you would be right back in the same situation, only the esophagus would be weaker because it had already been "modified". So eventually you'd be exactly back where you are now, facing the same decision and having to possibly undergo another major surgery. Again, I have not done any research on this, but as someone who is also facing the esophagectomy decision, and who is end stage Achalasia with a mega-esophagus, this is not an option I have been presented with by any of the surgeons I have contacted. Clearly I am interested if this is a realistic option, but given the assorted issues we face, I am just trying to understand how this procedure would be beneficial over the long term, or if it is just a temporary fix. I don't see how this is much less radical than the esophagectomy, and while you will be able to keep part of your esophagus, it will still be a non-functional esophagus at that, and I would think it would eventually stretch out again and lead you down this same road. Please don't take my comments wrong, you know my fears over the esophagectomy as we have had many lengthy conversations. I'm just trying to make sense of this as a viable option since I am looking at my choices as well. Did Dr. Dempsey discuss the longevity of this option? Being 33 years old, I have to look down the long road ahead and wonder how long it would be until I was back in the same boat. As always, I'm very interested to hear your thoughts on this.Keep me posted on when you will see Dr. Rice. Maybe we could make it a package deal and bombard him together....attack of the end-stagers. Love, in NY Re: NYachalasia > > Dear Ann,> > It is a matter of which opinion I want to follow. Dr. > Altorki, the > thoracic surgeon and Dr. Richter, the GI doctor, both highly > regarded, said > "Esophagectomy." Dr. Dempsey, the Temple Univ. surgeon, not as > well known, but > highly regarded, said, if you can live with it, then don't have > the surgery > yet. His first choice of operation is esophagoplasty, then > esophagectomy. > > As Notan said, "There are no right answers, just good > guesses." I am > "guessing" the least radical approach as the one to take for now. > > After October 15th, when work is quieter, I will be > contacting Dr. Rice > for his opinion. Chances are he will agree with his former > associate, Dr. > Richter, but it can't hurt to find out, and one should never > second guess a > doctor before hearing what he has to say.> > My "series" as you know was: "Doing Nothing is not an > Option." I have > chosen the path that will allow me future choices. Thanks Ann, > for asking.> > Love,> > > > > > > > In a message dated 9/20/2006 9:25:40 A.M. Eastern Daylight Time, > lilac_blossom_lady (DOT) co.uk writes:> > > > > Dear ,> > What is your situation now in practical terms? Is it up to you > to arrange > an appointment when you have come to a decision?> > Best Wishes and love from Ann in England XXXX> > ____________________________________> > > > > > > >

[Guest guest]

Just got this on the _no-forced-vaccination_

(mailto:no-forced-vaccination ) GROUP

(mailto:no-forced-vaccination )

From: Krasner <_cfic@..._ (mailto:cfic@...) >

_cfic@..._ (mailto:cfic@...)

Subject: Updates and news on exemptions

Just to update you...

....on stopping Bill A10942---the one that would automatically make

mandatory for school all vaccines on the CDC's recommended schedule

for children.

The bill was not placed on the Health Committee agenda yet. It may not

be. But many are concerned that there might be an attempt to do so

during the last committee meeting before the session ends at the end

of June.

To prevent that from happening, activist Rudley

_lisarudley@..._ (mailto:lisarudley@...) , 914-944-7273) is

asking Albany residents and

members that are close enough to travel there, to contact her before

meeting in Albany on June 24 (Tuesday).

June 24th is the date of the last Health Committee meeting. It is

hoped that another showing of parents might discourage any committee

members from pushing A10942 out of committee. Contact for time

and place to meet in the capital.

reports one piece of good news: Our religious and medical

exemption bills are reported out of committee and you can inform your

Assembly members that they can vote for them.

Also www.a-champ.Also<_http://www.a-http://www_ (http://www.a-champ.org/)

is constantly putting

out alerts to notify us of what bills are being discussed. I would

strongly recommend getting on their email list. AChamp is revising

it & #146;s website and could use some volunteers to help review legislation

going on in NY state and nationally.

There are many people to thank, and will be thanked soon enough, for

making the trip for the Albany rally.

In the meantime, you can read what described what occurred that day:

QUOTE

A group of Westchester moms (including me) and one mom from NJ met up

with 250 parents in Albany on Tuesday. A large group from Long Island

and Albany were there. There was a lot of press covering the story. We

had a great chant going: My kids; my choice..Rita Palma from Long

Island did a superb job in organizing this rally and sent parents out

to talk to our legislators. There were hundreds of us combing the

halls of the legislative building. Mark Alessi, State Senator

who is sponsoring the Philosophical Exemption spoke to us and went on

public record opposing bill A10942 which would add 27 more mandatory

shots to the schedule. At 1PM we all met up on the 8th floor to join

the Health Committee meeting where bills are discussed. In turns out

that bill A10942 was not on the agenda to be discussed. We believe

from a source (which one I don & #146;t know) that the bill was taken off the

agenda. Even though the bill was not being discussed hundreds of

parents began taking their sits in the Health Committee meeting so

they could see our faces (it was great). UNQUOTE

A free people [claim] their rights as derived from the laws of nature, and

not as the gift of their chief magistrate.

Jefferson, Rights of British America, 1774

_VACCINE RISK AWARENESS NETWORK - " PERSONAL STORY LINKS " _

(http://www.vran.org/links/story-links.htm)

_The Great HPV Vaccine Hoax Exposed_

(http://www.newstarget.com/Report_HPV_Vaccine_0.html)

_Vaccination Information & Choice Network - _

(http://www.nccn.net/~wwithin/vaccine.htm)

_Vaccination Liberation Home Page_ (http://www.vaclib.org/index.htm)

_ThinkTwice Global Vaccine Institute: Avoid Vaccine Reactions_

(http://thinktwice.com/) _National Vaccine Information Center_

(http://909shot.com/)

In a message dated 6/18/2008 10:44:49 P.M. Eastern Daylight Time,

wyked_celt@... writes:

So what happened with the vote in NY last week? Did they make vaccines

mandatory or not?

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Hopefully the show of parents opposed to the bill will show those for the bill

that it won't

be an easy fight and parent's are not going to take this laying down. ~doris

>

> Just got this on the _no-forced-vaccination_

> (mailto:no-forced-vaccination ) GROUP

> (mailto:no-forced-vaccination )

> From: Krasner <_cfic@..._ (mailto:cfic@...) >

> _cfic@..._ (mailto:cfic@...)

> Subject: Updates and news on exemptions

>

> Just to update you...

>

> ...on stopping Bill A10942---the one that would automatically make

> mandatory for school all vaccines on the CDC's recommended schedule

> for children.

>

> The bill was not placed on the Health Committee agenda yet. It may not

> be. But many are concerned that there might be an attempt to do so

> during the last committee meeting before the session ends at the end

> of June.

>

> To prevent that from happening, activist Rudley

> _lisarudley@..._ (mailto:lisarudley@...) , 914-944-7273) is

> asking Albany residents and

> members that are close enough to travel there, to contact her before

> meeting in Albany on June 24 (Tuesday).

>

> June 24th is the date of the last Health Committee meeting. It is

> hoped that another showing of parents might discourage any committee

> members from pushing A10942 out of committee. Contact for time

> and place to meet in the capital.

>

> reports one piece of good news: Our religious and medical

> exemption bills are reported out of committee and you can inform your

> Assembly members that they can vote for them.

>

> Also www.a-champ.Also<_http://www.a-http://www_ (http://www.a-champ.org/)

> is constantly putting

> out alerts to notify us of what bills are being discussed. I would

> strongly recommend getting on their email list. AChamp is revising

> it & #146;s website and could use some volunteers to help review legislation

> going on in NY state and nationally.

>

> There are many people to thank, and will be thanked soon enough, for

> making the trip for the Albany rally.

>

> In the meantime, you can read what described what occurred that day:

>

> QUOTE

> A group of Westchester moms (including me) and one mom from NJ met up

> with 250 parents in Albany on Tuesday. A large group from Long Island

> and Albany were there. There was a lot of press covering the story. We

> had a great chant going: My kids; my choice..Rita Palma from Long

> Island did a superb job in organizing this rally and sent parents out

> to talk to our legislators. There were hundreds of us combing the

> halls of the legislative building. Mark Alessi, State Senator

> who is sponsoring the Philosophical Exemption spoke to us and went on

> public record opposing bill A10942 which would add 27 more mandatory

> shots to the schedule. At 1PM we all met up on the 8th floor to join

> the Health Committee meeting where bills are discussed. In turns out

> that bill A10942 was not on the agenda to be discussed. We believe

> from a source (which one I don & #146;t know) that the bill was taken off the

> agenda. Even though the bill was not being discussed hundreds of

> parents began taking their sits in the Health Committee meeting so

> they could see our faces (it was great). UNQUOTE

>

>

>

> A free people [claim] their rights as derived from the laws of nature, and

> not as the gift of their chief magistrate.

> Jefferson, Rights of British America, 1774

>

>

> _VACCINE RISK AWARENESS NETWORK - " PERSONAL STORY LINKS " _

> (http://www.vran.org/links/story-links.htm)

>

> _The Great HPV Vaccine Hoax Exposed_

> (http://www.newstarget.com/Report_HPV_Vaccine_0.html)

>

> _Vaccination Information & Choice Network - _

> (http://www.nccn.net/~wwithin/vaccine.htm)

>

>

> _Vaccination Liberation Home Page_ (http://www.vaclib.org/index.htm)

>

> _ThinkTwice Global Vaccine Institute: Avoid Vaccine Reactions_

> (http://thinktwice.com/) _National Vaccine Information Center_

(http://909shot.com/)

>

>

>

> In a message dated 6/18/2008 10:44:49 P.M. Eastern Daylight Time,

> wyked_celt@... writes:

>

> So what happened with the vote in NY last week? Did they make vaccines

> mandatory or not?

>

>

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

>

>

>

[Guest guest]

Dear Ann,

How I miss the lilac color of your posts here.  It was like a part of your warm

and loving personality!

You are probably more correct than you think regarding what you wrote below as

the " most relevant and significant " part of my post.  If the " sag " in my

esophagus was as great as it appeared to be in the 2 year old Xray, one would

think that I should be experiencing far more difficulty eating.  Food does not

just defy gravity and head upwards to the stomach.  Liquids would help a little,

but then the liquids would be sitting there also.  When I lie down flat to go to

sleep, even right after drinking liquids, I would probably regurg the liquid,

but I don't. 

    Love,

       

NY

Dear ,

 

I feel that this is the most relevant and significant part of your post:

 

 The original Xrays showed

my esophagus dipping way below my stomach and then coming back up

again. Several angles of view in the current film did not show

that " sag. " My upper esophagus is not dilated, while my lower is

like a basket or second stomach, but not in such bad shape as

originally stated, nor has it gotten any worse.

If anything, things have improved in there. If I was given this news, there

would be no way that I would be considering an 'ectomy. In fact, my only plan of

action would be to do a great deal of smiling!

 

It warms my heart to see that someone who has become dear to me is doing so

well.

All the best and lots of love from Ann XX

 

 

      __________________________________________________________

Not happy with your email address?.

Get the one you really want - millions of new email addresses available now at

http://uk.docs./ymail/new.html

[Guest guest]

Anyone hear from ny lately? He has been awful quite.

[Guest guest]

- it's great to hear about your method! Sounds to me like you have done a whole lot of research. Unfortunately, I did not have a great experience with naturopathic Dr. here. She just didn't seem to want to engage with me in the Hep C disease. However, I was trying to look into a more natural way of dealing with the illness.Then I got really scared when the biopsy showed that I was already had Stage 3 nudging Stage 4. I certainly did not want to be still doing research as my liver was dying. So, I did my 1st tx.

,

I was at Lloyd 's site a couple of days ago and I noticed a section about interfero treatment lawsuits. One of them caught my eye as the person ended up with so many things wrong including renal failure.

It is obvious to me that you were used as a guinea pig for some drug company's profits. If they cared about you at all, they would be following you like a hawk...treating every last symptom until you were as good as new. Anything else is unacceptable...THEY did this to you.

I lost my faith in conventional doctors' ability to help me early on in the Hepatitis C game. They basically told me that they only thing they had to help me with was 'treatment'. I had read a lot of what Lloyd said and did a lot of homework and decided that for many reasons, treatment wasn't an option for me

They disbelieved that my fatigue was caused by Hepatitis C and had no clue about alternative medicine other than to warn me against it mostly.

My naturopath, on the other hand, has taken many of his Hepatitis C patients from very very sick to health. I'm only talking about symptoms here....nothing can clear the virus at this point but a successful treatment. I've also found another naturopath who administers ALA IVs and that's helped me further.

At this point...unless you can find a conventional doctor who will admit that your problems were caused by treatment and is willing to fix them...you might do better with a skilled naturopathic or Integrative physician who will work their magic to get you back in good health.

Lloyd wright might be a good start for information...but he is not a physician and can not treat you as an individual the way a good naturopathic physician can. Plus he is too damn expensive for most things.

I've found that the best conventional doctors can do for chronic health problems at this point in history is to make guesses at diagnoses and then prescribe drugs with horrendous side effects. Then they often must prescribe new drugs to treat the side effects caused by the first drugs. Most of their recent medical knowledge has come from pharmaceutical reps. Their world is all about profit.

I once applied for a job as a pharmaceutical rep in the 80s. I found myself in a room with about three hundred applicants taking a test. The odds were stacked against me so, as a joke, I took the test and answered each question opposite the way I would if I had been serious.

An example: If a clerk gave you a twenty instead of a five in change would you return it? I answered that I would keep it. There were many questions like that. I answered each question to the opposite of my own moral code. To my surprise, I found myself among the three finalists for the job! The job was described to us three finalists: bribe doctors into prescribing drugs that their patients may or may not need. Fortunately, I did not get the job.

...I guarantee that if you found the right naturopathic physician..he or she would be able to get you healing in the right direction...without any dangerous drugs that will only make things worse. They can't kill your virus, but they can get you feeling healthier and happier than you thought possible.

Feel free to email me if you have any questions. I've made part of my life's work the study of alternative health in relation to my Hepatitis C and so I know a little about it. I'm far from a physician and can't treat anyone or anything..but I have some knowledge and I'm happy to share it.

By the way...I am not opposed to conventional medicine when it is called for. If I had a broken bone, was suffering a heart attack, or needed an operation I would call my PCP in a heartbeat. It's just that they are better at reactive medicine than preventative...and they prescribe too many damn drugs, lol!

That's my story and I'm sticking to it.

Peace,

PS....I have had good luck with the products from http://www.hepatitistechnologies.com/

They have a program whereby if you can send them proof of financial need..they will sell you their products at cost.