Re: Am I overreacting? Opinions welcome

[Guest guest]

Stephani

3 places seem to have the real experts in So. Cal. Cedars Sinai, UCLA and

USC. Dont go to anyone else!!!! We seem to have good results with these

experts. Do go see one of them NOW! Esophogectomy is a super last resort.

Get 2 opinions from them if needed. Dr at Cedars did mine. He was one

of the inventors of laparascopic surgery and says he does a lot of

corrective surgery on botched jobs. I am not perfect, but a lot better than I

was.

in Santa Barbara

In a message dated 5/5/2011 12:30:46 P.M. Pacific Daylight Time,

fattsolove@... writes:

Hello All,

I have only been part of the group since December and don't post much but

I love it and just wanted to thank everyone. I posted a few months back

about my experience with A and got some great feedback and was hoping to get a

few more opinions.

My quick story is this. I have had A for 21 years, since I was thirteen.

Have had two open myotomy's in the 90's and several balloon dilations. Did

great for a few years after my myotomy in 95' but it the problems have

returned. Have the same problems as most. Struggle to eat, spasms, vomit on

occasion and weight loss.

Here is my question more or less. I've recently had all the tests and have

some ulcers and eshopaghatis, some narrowing at the bottom and its a

little stretched out. I'm not a candidate for another myotomy or a balloon

dilation. I posted a few months back that my GI wanted to try botox. I know its

a no no mostly but be we tried it based on the fact that the only other

surgery option would be an esophectomy. The botox didn't work at all. I just

did a barium swallow this morning and the barium didn't drop into my stomach

at all. Just sat in my E. My GI is hesitant to do the esophectomy because

I'm relatively young but I don't see what other options there could be

since I'm not dropping liquids.

So the question is should I just try to live with it? Do you think an

esophectomy too severe. Or should I actively pursue it? Im pretty uncomfortable

and pretty skinny but am unsure what to do next. Any opinions would be

welcome.

Thanks,

Stefani SoCal

[Guest guest]

You are in good hands...they are a great team and care about patients.

in Santa Barbara

In a message dated 5/5/2011 3:51:00 P.M. Pacific Daylight Time,

fattsolove@... writes:

Thanks ,

I am working with docter ipolitti at ceders. I worked with him back in 95

as well. i'm pretty sure is one of the best at ceders. Docter joel richter

referred me to him I'm pretty sure a few other members have gone to him as

well. Thanks for the feedback.

>

> Stephani

> 3 places seem to have the real experts in So. Cal. Cedars Sinai, UCLA

and

> USC. Dont go to anyone else!!!! We seem to have good results with these

> experts. Do go see one of them NOW! Esophogectomy is a super last

resort.

> Get 2 opinions from them if needed. Dr at Cedars did mine. He

was one

> of the inventors of laparascopic surgery and says he does a lot of

> corrective surgery on botched jobs. I am not perfect, but a lot better

than I was.

>

> in Santa Barbara

>

>

>

>

> In a message dated 5/5/2011 12:30:46 P.M. Pacific Daylight Time,

> fattsolove@... writes:

>

>

>

>

> Hello All,

>

> I have only been part of the group since December and don't post much

but

> I love it and just wanted to thank everyone. I posted a few months back

> about my experience with A and got some great feedback and was hoping to

get a

> few more opinions.

>

> My quick story is this. I have had A for 21 years, since I was thirteen.

> Have had two open myotomy's in the 90's and several balloon dilations.

Did

> great for a few years after my myotomy in 95' but it the problems have

> returned. Have the same problems as most. Struggle to eat, spasms, vomit

on

> occasion and weight loss.

>

> Here is my question more or less. I've recently had all the tests and

have

> some ulcers and eshopaghatis, some narrowing at the bottom and its a

> little stretched out. I'm not a candidate for another myotomy or a

balloon

> dilation. I posted a few months back that my GI wanted to try botox. I

know its

> a no no mostly but be we tried it based on the fact that the only other

> surgery option would be an esophectomy. The botox didn't work at all. I

just

> did a barium swallow this morning and the barium didn't drop into my

stomach

> at all. Just sat in my E. My GI is hesitant to do the esophectomy

because

> I'm relatively young but I don't see what other options there could be

> since I'm not dropping liquids.

>

> So the question is should I just try to live with it? Do you think an

> esophectomy too severe. Or should I actively pursue it? Im pretty

uncomfortable

> and pretty skinny but am unsure what to do next. Any opinions would be

> welcome.

>

> Thanks,

> Stefani SoCal

>

>

>

>

>

>

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

>

[Guest guest]

Thanks ,

I am working with docter ipolitti at ceders. I worked with him back in 95 as

well. i'm pretty sure is one of the best at ceders. Docter joel richter referred

me to him I'm pretty sure a few other members have gone to him as well. Thanks

for the feedback.

>

> Stephani

> 3 places seem to have the real experts in So. Cal. Cedars Sinai, UCLA and

> USC. Dont go to anyone else!!!! We seem to have good results with these

> experts. Do go see one of them NOW! Esophogectomy is a super last resort.

> Get 2 opinions from them if needed. Dr at Cedars did mine. He was one

> of the inventors of laparascopic surgery and says he does a lot of

> corrective surgery on botched jobs. I am not perfect, but a lot better than I

was.

>

> in Santa Barbara

>

>

>

>

> In a message dated 5/5/2011 12:30:46 P.M. Pacific Daylight Time,

> fattsolove@... writes:

>

>

>

>

> Hello All,

>

> I have only been part of the group since December and don't post much but

> I love it and just wanted to thank everyone. I posted a few months back

> about my experience with A and got some great feedback and was hoping to get

a

> few more opinions.

>

> My quick story is this. I have had A for 21 years, since I was thirteen.

> Have had two open myotomy's in the 90's and several balloon dilations. Did

> great for a few years after my myotomy in 95' but it the problems have

> returned. Have the same problems as most. Struggle to eat, spasms, vomit on

> occasion and weight loss.

>

> Here is my question more or less. I've recently had all the tests and have

> some ulcers and eshopaghatis, some narrowing at the bottom and its a

> little stretched out. I'm not a candidate for another myotomy or a balloon

> dilation. I posted a few months back that my GI wanted to try botox. I know

its

> a no no mostly but be we tried it based on the fact that the only other

> surgery option would be an esophectomy. The botox didn't work at all. I just

> did a barium swallow this morning and the barium didn't drop into my stomach

> at all. Just sat in my E. My GI is hesitant to do the esophectomy because

> I'm relatively young but I don't see what other options there could be

> since I'm not dropping liquids.

>

> So the question is should I just try to live with it? Do you think an

> esophectomy too severe. Or should I actively pursue it? Im pretty

uncomfortable

> and pretty skinny but am unsure what to do next. Any opinions would be

> welcome.

>

> Thanks,

> Stefani SoCal

>

>

>

>

>

>

>

[Guest guest]

Hi Stefani

Have had A 5-6 years and no operations etc. At my age I am living with it, I

live on the computer looking for cures, much like notan does.

My solution is BUTTER on a toasted muffin (8 gms of fiber) with a slice of

cheese and Bushes brown beans (a lot of fiber) with water and a teaspoon of

BUTTER. Butter or any fat opens the LES and relaxes it. Medical report!

Don't worry about the BUTTER causing an increase in cholesterol; you can handle

that later if the BUTTER works.

And Magnesium 250 mg twice a day. Good for the bowel and in

my opinion opens the LES. I found this out after I used

Milk of Magnesia for the bowel.

And a COLD coke, the CO2 opens the LES.

I have macaroni and cheese ever night. It slips down easily and I add butter.

And a hot cup of real coffee. Then ice cream with a chocolate cake. Then before

bed an Ensure plus to clean out the e. I also add chocolate bars or a milk

shake.

I very rarely get spasms and only when food is in the e. A cold COKE washes it

away and the spasm goes away!

I have Oat cereal ( Kashi Oat Cereal warm cinnamon 5 gms, from Target) for

breakfast with Lactaid 4 % milk .

I am so much better now I have found out what works " FOR ME " , I have been

gaining weight.

Just because I am old as hell, I believe some of the items above may help.

" esophectomy too severe " Yes at your age hold off, I am sure a solution will be

found, I may not see it but you should and see what notan says about it.

Ray soCal age 80

>

> Hello All,

>

> I have only been part of the group since December and don't post much but I

love it and just wanted to thank everyone. I posted a few months back about my

experience with A and got some great feedback and was hoping to get a few more

opinions.

>

> My quick story is this. I have had A for 21 years, since I was thirteen. Have

had two open myotomy's in the 90's and several balloon dilations. Did great for

a few years after my myotomy in 95' but it the problems have returned. Have the

same problems as most. Struggle to eat, spasms, vomit on occasion and weight

loss.

>

> Here is my question more or less. I've recently had all the tests and have

some ulcers and eshopaghatis, some narrowing at the bottom and its a little

stretched out. I'm not a candidate for another myotomy or a balloon dilation. I

posted a few months back that my GI wanted to try botox. I know its a no no

mostly but be we tried it based on the fact that the only other surgery option

would be an esophectomy. The botox didn't work at all. I just did a barium

swallow this morning and the barium didn't drop into my stomach at all. Just sat

in my E. My GI is hesitant to do the esophectomy because I'm relatively young

but I don't see what other options there could be since I'm not dropping

liquids.

>

> So the question is should I just try to live with it? Do you think an

esophectomy too severe. Or should I actively pursue it? Im pretty uncomfortable

and pretty skinny but am unsure what to do next. Any opinions would be welcome.

>

> Thanks,

> Stefani SoCal

>

[Guest guest]

> >

> > Hello All,

> >

> > I have only been part of the group since December and don't post much but I

love it and just wanted to thank everyone. I posted a few months back about my

experience with A and got some great feedback and was hoping to get a few more

opinions.

> >

> > My quick story is this. I have had A for 21 years, since I was thirteen.

Have had two open myotomy's in the 90's and several balloon dilations. Did great

for a few years after my myotomy in 95' but it the problems have returned. Have

the same problems as most. Struggle to eat, spasms, vomit on occasion and weight

loss.

> >

> > Here is my question more or less. I've recently had all the tests and have

some ulcers and eshopaghatis, some narrowing at the bottom and its a little

stretched out. I'm not a candidate for another myotomy or a balloon dilation. I

posted a few months back that my GI wanted to try botox. I know its a no no

mostly but be we tried it based on the fact that the only other surgery option

would be an esophectomy. The botox didn't work at all. I just did a barium

swallow this morning and the barium didn't drop into my stomach at all. Just sat

in my E. My GI is hesitant to do the esophectomy because I'm relatively young

but I don't see what other options there could be since I'm not dropping

liquids.

> >

> > So the question is should I just try to live with it? Do you think an

esophectomy too severe. Or should I actively pursue it? Im pretty uncomfortable

and pretty skinny but am unsure what to do next. Any opinions would be welcome.

> >

> > Thanks,

> > Stefani SoCal

> >

>

+ Peppermint oil ( Altoids ) or fresh peppermint leaf

+ Hot Tea/Coffee with peppermint flavor

+ if you can tolerate - spicy food

+ Turmeric

+ Meditation

[Guest guest]

Stefani wrote:

>

> ... I've recently had all the tests and have some ulcers and

> eshopaghatis, some narrowing at the bottom and its a little stretched

> out. I'm not a candidate for another myotomy or a balloon dilation.

> ... The botox didn't work at all. ... Do you think an esophectomy

> too severe. Or should I actively pursue it?

>

If the ulcers and esophagitis can be gotten rid of that would make a

difference. If you can't get rid of them then you will have chronic

inflammation. Chronic inflammation is now believed to be a risk factor

for developing a number of other problems, such as type 2 diabetes.

Beyond that, an ulcer could become perforated. Very bad. You could also

develop Barrett's esophagus and be at a higher risk of cancer. But,

maybe the esophagitis and ulcers can be cured. You may want to try that

first.

You say that your esophagus is only a little stretched out. What about

sigmoid? Does it droop down below the stomach? If the main issue is the

narrowing at the LES then there may be some surgeons that are more

aggressive at treating this with yet another myotomy with some possible

straightening before esophagectomy. If the Botox had worked it would

have been an indication that another surgery may have helped. The fact

that it didn't work doesn't tell you anything. You may have an immunity

to Botox.

If there really is no other treatment option other than esophagectomy

then it is a matter of how much you want to risk to have some gain in

the way you live.

notan

[Guest guest]

Ray wrote:

>

> " esophectomy too severe " Yes at your age hold off, I am sure a

> solution will be found, I may not see it but you should and see what

> notan says about it.

>

Someday the solution will be right around the corner, but today I don't

know if that is true. It may be true but it could be far off.

Do you remember back in the 90s they were telling us that we were all

going to live to be 300 years old? One company had something that was

suppose to stop the damage to telomeres. Others had determined genes

that cause longevity in other animals and we would all benefit from that

research soon. Others were claiming that aging was a problem that could

be fixed with antioxidants. Life goes on but only about like it did in

the 90s.

What happened to fusion power plants? How many billions of dollars have

been spent on that over the decades. Where is my flying car? My

computer is still nothing like Hal. All these things seemed so doable.

I think 8 years ago was the first time in this support group that stem

cells were discussed as a possible way to fix the damaged nerve cells. I

am glad I didn't put off having my surgery to wait for that fix. I don't

know if they will be doing that even in another 8 years. Today the big

news is growing your own organs. Growing an esophagus in a lab is one

thing, being able to get one for yourself and have it work long-term

better than having a myotomy is another thing. I don't recommend

waiting. And do you want to be the first kid on your block with a lab

grown esophagus? You know what they say about cars, always skip the

first model and wait for the model with the bug fixes.

What solution is really just around the corner, close enough to wait for?

notan