discouraged

[Guest guest]

What I wanted to say, ~W, is that a different way of looking at it might be

that if you weren't on iodine, maybe things could be even worse? Don't stop

the iodine, we know we need it. best wishes, --

>>I started on this journey sort of by accident when researching how to get

>>rid of my skin cancer in a better way than cutting it off every time at

>>the doc -- about April 2009. I've been on 50 mg of Iodoral (as well as

>>companion supplements) for several months now. I've tried higher but

>>didn't do well on it, and since I'm small-framed and just over 100

>>pounds, I figured 50 was a good dose for me.

>>

>>Anyway, I just had a weird spot develop on my ankle a few weeks ago (I

>>assumed it was a bug bite or something). I started painting it with

>>iodine to no avail. Then, I decided to try Cansema on it just in case,

>>although I didn't initially suspect skin cancer. It just looked

>>different from the others I've had (and I've had all 3 types). It

>>reacted -- meaning it's cancerous according to how people interpret

>>Cansema. What's got me even more upset is that it seemed like it grew at

>>a faster rate than I've noticed before.

>>

>>Now, I'm beginning to doubt that iodine has done anything useful for

>>me. Intellectually I know that my body needs iodine, but emotionally, I

>>don't feel like I'm benefiting at all.

>>

>>Any words of encouragement would be appreciated. =(

>>

>>

>>

>>~W

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

[Guest guest]

Hi,

 

Yesterday I interviewed another OS.  I've heard  he is an excellent surgeon and

his patients have smooth recoveries.  He said he would not do my surgery

unless/until I lost 60lbs.  " shrugs "   I was not really surprised...though

disappointed.  What he said that does concern me is that if I don't lose this

weight and go ahead with the surgery then I would end up having multiple knee

replacements as years went on.  He said " you will probably be able to find a

doctor who is hungry enough to do the surgery..etc etc " .  Needless to say...I

left his office feeling defeated and hopeless. Out of the three doctors I have

spoken to...he is the first to say he would not do the surgery.  I guess I am

questioning how a knee replacement will last less time if, for my height, I am

obese.  Would not a person who is taller and perhaps weighs the same...have

multiple replacements as a result of their weight? 

 

I have decided to postpone my surgery in hopes of taking some weight off.  Not

an easy task when one cannot walk very much.  I know that carrying alot of extra

weight will make PT and recovery in general harder.  I feel I am in a catch 22. 

 

Just needed to vent..thanks for listening.

[Guest guest]

,

I am really sorry to hear this. Was a Dor wrap performed by Dr. Rice? Maybe

there is still some swelling that is making the les too tight? Did you contact

him to talk about it?

Since I have not had a myotomy, I can't comment on the healing process but I

certainly hope some others can chime in as to how they felt 10 days post op.

What was the condition of your esophagus before you had the myotomy? I can't

seem to find your history anywhere in the posts. Maybe you never wrote about it.

But did Dr. rice feel confident that a myotomy would help you?

I really hope that things will slowly get better each day for you. Keep us

posted.

Cara

>

> I'm now 10 days out from my HM and mushy food doesn't go down.  The liquid

diet

> was fine, but mashed potatoes get stuck even if I drink lots of water.  Lots

of

> foam comes up, which I think is a result of the food being stuck at the LES. 

I

> was swallowing better before the surgery.  Its a bummer.  Maybe I'm expecting

> too much too soon.  Any thoughts?

>

>

>

>

>

>

>

[Guest guest]

Cara,

Yes, it was a Dor wrap.  Do you have his e-mail address?  I think will contact

Rice first thing on Monday and see what he says.  In the mean time I'll go back

to ensure and juice.

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sat, July 10, 2010 10:42:12 PM

Subject: Re: Discouraged

 

,

I am really sorry to hear this. Was a Dor wrap performed by Dr. Rice? Maybe

there is still some swelling that is making the les too tight? Did you contact

him to talk about it?

Since I have not had a myotomy, I can't comment on the healing process but I

certainly hope some others can chime in as to how they felt 10 days post op.

What was the condition of your esophagus before you had the myotomy? I can't

seem to find your history anywhere in the posts. Maybe you never wrote about it.

But did Dr. rice feel confident that a myotomy would help you?

I really hope that things will slowly get better each day for you. Keep us

posted.

Cara

>

> I'm now 10 days out from my HM and mushy food doesn't go down.  The liquid

diet

>

> was fine, but mashed potatoes get stuck even if I drink lots of water.  Lots

of

>

> foam comes up, which I think is a result of the food being stuck at the

LES.  I

>

> was swallowing better before the surgery.  Its a bummer.  Maybe I'm

expecting

> too much too soon.  Any thoughts?

>

>

>

>

>

>

>

[Guest guest]

Ricet@...

They did not give you contact information for you to follow up with if you were

having comp, I am very surprised by this.

How long have you been suffering with A? When were you diagnosed? Did you have

any prior treatments like botox or dilatation? Was your E dilated or sigmoid

shaped? Some of these things can be predictors of a failed myotomy. Do you

happen to know what your resting les pressure was before surgery?

Sorry for all the questions, but it kind of blows my mind that such a " fantastic

dr. Such as rice " would not be able to successfully alleviate the symptoms of so

eo e with early stage achalasia. Unless ofcourse you had any of the thi gs I

describe below that would be early predictors of a failure.

Maybe you are simply taking longer to heal then most. May e in a cowpoke of more

days you will be fib. Or maybe you need a dilatation.

Please let me know what he tells you.

Many Prayers

Cara

[Guest guest]

Thanks Cara.  I have had 3 dilations over a 15 year period.  The last one was

January 2010 and it included botox.  Rice said " the botox was injected into the

wall which didn't effect the muscle but did enhance the physician's bank book " .

My barium picture had a turn at the bottom, and some extension near the

middle. 

I didn't get my LES pressure.  He was cautiously optimistic about my results

and

also stated that we will have a long term relationship.  So, I feel comfortable

contacting him.

Are you in Cleveland now?

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Sun, July 11, 2010 8:13:44 AM

Subject: Re: Re: Discouraged

 

Ricet@...

They did not give you contact information for you to follow up with if you were

having comp, I am very surprised by this.

How long have you been suffering with A? When were you diagnosed? Did you have

any prior treatments like botox or dilatation? Was your E dilated or sigmoid

shaped? Some of these things can be predictors of a failed myotomy. Do you

happen to know what your resting les pressure was before surgery?

Sorry for all the questions, but it kind of blows my mind that such a " fantastic

dr. Such as rice " would not be able to successfully alleviate the symptoms of so

eo e with early stage achalasia. Unless ofcourse you had any of the thi gs I

describe below that would be early predictors of a failure.

Maybe you are simply taking longer to heal then most. May e in a cowpoke of more

days you will be fib. Or maybe you need a dilatation.

Please let me know what he tells you.

Many Prayers

Cara

[Guest guest]

Cara,

My symptoms seemed to vary depending on stress, type of food and some other

unknowns.  Spicy foods didn't work at all.  I would often spit up after meals

or

on my morning walk.  I gave up on business lunches years ago and forget about a

luncheon or dinner date when I was single.  It was hard to make a good

impression when I spent more time in the bathroom then at the table.  I pretty

much learned to live with it until last December when my girlfriend and I were

travelling in Guatamala and I stopped swallowing completely.  Not even water. 

The stress, some spicy food and who knows what combined to close me up.  I

returned immediately and needed IVs for dehydration and a dilation.  It was

then

that I decided it was time to do something.  By the way, the GI doc who did the

dilation, took it upon himself to inject the botox.  I chose Dr. Rice based on

what folks have said on this list, and I think it was a good decision.

Breakfast of scrambled eggs worked this morning!  I also managed to eat a

bannana without any trouble.  So, this may be just another lesson in patience.

-

P.S.  Where did you stay in Cleveland.

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Sun, July 11, 2010 11:18:01 AM

Subject: Re: Re: Discouraged

 

, I just got back from Cleveland yesterday. Had all my testing done on

Friday. I did not get to consult with dr. Rice after the testing but we did

speak early in the morning before the testing. We looked at barium x-rays that I

brought with me. I have a 10.5cm esophagus at it's largest point and it makes

about a 90 degree turn to the left at the bottom where it meets my stomach. I am

not fighting gravity to get food down so he was optimistic that a myotomy would

save my esophagus from removal.

However, I swallow so well right now. I have no issues or symptoms of this

horrific disease. I feel lucky. I am not so sure a myotomy will improve much for

me.

And now reading your posts, it makes me feel discouraged that a myotomy may not

work as well as intended. My next step after myotomy would be ectomy and I would

like to prolong that surgery for as long as I can. So if a myotomy is going to

speed up my road to an ectomy, I would rather do nothing and wait till I have

symptoms.

How bad were your symptom s before you had the myotomy with dr. Rice? What were

you able to eat? Were you aspirating or regurgitating anything?

Cara

[Guest guest]

Whew!!!! Yay for breakfast howard!! Good news. Maybe you still need some

swelling to go down. I will be praying for you and sending positive thoughts.

I stayed at the intercontinental guest suites right inside the campus at TCC. It

was a 2 block walk from the hotel to dr. Rice's office.

Here is some background on me, if you haven't already searched for my history.

I was about 17 when I first lost the ability to burp. The next 4 years were hazy

as I was in college and had intermittent trouble swallowing. It got to be

extreme my senior year. I was at mardi gras and couldn't keep water down. The

only thing that went down was alcohol. Go figure!

I was diagnosed with achalasia the week I returned from new Orleans and had a

balloon dilatation the following month on spring break. I was about to turn 22.

The dilatation improved my swallowing tremendously and I have never really had

any issues since.it's been 14 years. I have given birth to twin boys who are

now 2.5 years old. I still swallow fine with some water, and sometimes I don't

even need water.

I went for a barium swallow with my local gi on June 4 th because I felt so

guilty not having a checkup on my E in 14 years. The barium swallow showed a

mega sigmoid esophagus. I was terrified.

I am one of the more neurotic members of this group and tend to see things on

the negative side rather than always being optimistic. This is a character flaw

I am working on.

I wouldn't have found rice if it weren't for this board. I am so thankful for

that.

Itsoubds like you have had a rough go of it and I hope that this myotomy gives

you yeArs of relief. Please keep us posted and if you want to talk, feel free to

call me at 404-803-2400.

Where do you live?

Cara

[Guest guest]

I'm in Santa Fe.  Traveling to Cleveland is a hassle and I plan to go back in

September for a check up with Rice.  I stayed at the guest house, but the

Intercontinental looked good.  Did you like it?

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Sun, July 11, 2010 12:49:25 PM

Subject: Re: Re: Discouraged

 

Whew!!!! Yay for breakfast howard!! Good news. Maybe you still need some

swelling to go down. I will be praying for you and sending positive thoughts.

I stayed at the intercontinental guest suites right inside the campus at TCC. It

was a 2 block walk from the hotel to dr. Rice's office.

Here is some background on me, if you haven't already searched for my history.

I was about 17 when I first lost the ability to burp. The next 4 years were hazy

as I was in college and had intermittent trouble swallowing. It got to be

extreme my senior year. I was at mardi gras and couldn't keep water down. The

only thing that went down was alcohol. Go figure!

I was diagnosed with achalasia the week I returned from new Orleans and had a

balloon dilatation the following month on spring break. I was about to turn 22.

The dilatation improved my swallowing tremendously and I have never really had

any issues since.it's been 14 years. I have given birth to twin boys who are now

2.5 years old. I still swallow fine with some water, and sometimes I don't even

need water.

I went for a barium swallow with my local gi on June 4 th because I felt so

guilty not having a checkup on my E in 14 years. The barium swallow showed a

mega sigmoid esophagus. I was terrified.

I am one of the more neurotic members of this group and tend to see things on

the negative side rather than always being optimistic. This is a character flaw

I am working on.

I wouldn't have found rice if it weren't for this board. I am so thankful for

that.

Itsoubds like you have had a rough go of it and I hope that this myotomy gives

you yeArs of relief. Please keep us posted and if you want to talk, feel free to

call me at 404-803-2400.

Where do you live?

Cara

[Guest guest]

The intercontinental is a great hotel. No complaints. The restaurant there

looked top notch although I did not eat in it. The rooms were large and had a

suite area with a pull out bed. My room rate with wifi was $200 a night

including tax and everything else. I stayed one night,

>

> I'm in Santa Fe.  Traveling to Cleveland is a hassle and I plan to go back in

> September for a check up with Rice.  I stayed at the guest house, but the

> Intercontinental looked good.  Did you like it?

>

>

>

>

>

> ________________________________

> From: Cara Spoto <cspoto@...>

> achalasia

> Sent: Sun, July 11, 2010 12:49:25 PM

> Subject: Re: Re: Discouraged

>

>  

> Whew!!!! Yay for breakfast howard!! Good news. Maybe you still need some

> swelling to go down. I will be praying for you and sending positive thoughts.

>

>

> I stayed at the intercontinental guest suites right inside the campus at TCC.

It

> was a 2 block walk from the hotel to dr. Rice's office.

>

> Here is some background on me, if you haven't already searched for my history.

>

> I was about 17 when I first lost the ability to burp. The next 4 years were

hazy

> as I was in college and had intermittent trouble swallowing. It got to be

> extreme my senior year. I was at mardi gras and couldn't keep water down. The

> only thing that went down was alcohol. Go figure!

>

> I was diagnosed with achalasia the week I returned from new Orleans and had a

> balloon dilatation the following month on spring break. I was about to turn

22.

>

> The dilatation improved my swallowing tremendously and I have never really had

> any issues since.it's been 14 years. I have given birth to twin boys who are

now

> 2.5 years old. I still swallow fine with some water, and sometimes I don't

even

> need water.

>

> I went for a barium swallow with my local gi on June 4 th because I felt so

> guilty not having a checkup on my E in 14 years. The barium swallow showed a

> mega sigmoid esophagus. I was terrified.

>

> I am one of the more neurotic members of this group and tend to see things on

> the negative side rather than always being optimistic. This is a character

flaw

> I am working on.

>

> I wouldn't have found rice if it weren't for this board. I am so thankful for

> that.

>

> Itsoubds like you have had a rough go of it and I hope that this myotomy gives

> you yeArs of relief. Please keep us posted and if you want to talk, feel free

to

> call me at 404-803-2400.

>

>

> Where do you live?

>

> Cara

>

>

>

>

>

>

>

>

[Guest guest]

, your loss of 150 pounds is nothing short of spectacular.

Congratulations on such a success! You have done a great benefit to your

health

and well being.

I still have about 40 to 50 pounds to lose and seem to be on the right

path now. Joan, yes, I did learn from my socializing incident. Yesterday, I

had a wonderful reunion with three high school buddies and enjoyed the

afternoon immensely. There was lots of food as our hostess provided a great

(and very healthy) lunch and we all brought small additional foods. I did go

over the Weightwatcher points allowance but used some from the additional

weekly bonus points and am still on track. I feel very good about being a

little bad.

The extra weight on the joints is a good motivation to stay on track. I

am going to stick with the Momentum program from Weight Watchers and try as

well to eliminate many breads and starches as the GI diet you followed

requires.

My friend in Jersey was on the GI diet and lost about 20 pounds. She also

recommends it highly.

Reen

[Guest guest]

, how did the rest of today go for you eating wise? Hopefully you are

getting stuff down!

Cara

[Guest guest]

Hi Reen, Good luck to you! Yes, you have to cheat a little just to make sure

you stay on track for the long haul.

All the best, Joan

________________________________

From: " nhasior@... " <nhasior@...>

Joint Replacement

Sent: Mon, July 12, 2010 12:02:47 PM

Subject: Re: discouraged

, your loss of 150 pounds is nothing short of spectacular.

Congratulations on such a success! You have done a great benefit to your

health

and well being.

I still have about 40 to 50 pounds to lose and seem to be on the right

path now. Joan, yes, I did learn from my socializing incident. Yesterday, I

had a wonderful reunion with three high school buddies and enjoyed the

afternoon immensely. There was lots of food as our hostess provided a great

(and very healthy) lunch and we all brought small additional foods. I did go

over the Weightwatcher points allowance but used some from the additional

weekly bonus points and am still on track. I feel very good about being a

little bad.

The extra weight on the joints is a good motivation to stay on track. I

am going to stick with the Momentum program from Weight Watchers and try as

well to eliminate many breads and starches as the GI diet you followed

requires.

My friend in Jersey was on the GI diet and lost about 20 pounds. She also

recommends it highly.

Reen

[Guest guest]

Thank you Reen. You know weight loss has to begin in the head before the body

can follow.

Sent from my Verizon Wireless BlackBerry

Re: discouraged

, your loss of 150 pounds is nothing short of spectacular.

Congratulations on such a success! You have done a great benefit to your

health

and well being.

I still have about 40 to 50 pounds to lose and seem to be on the right

path now. Joan, yes, I did learn from my socializing incident. Yesterday, I

had a wonderful reunion with three high school buddies and enjoyed the

afternoon immensely. There was lots of food as our hostess provided a great

(and very healthy) lunch and we all brought small additional foods. I did go

over the Weightwatcher points allowance but used some from the additional

weekly bonus points and am still on track. I feel very good about being a

little bad.

The extra weight on the joints is a good motivation to stay on track. I

am going to stick with the Momentum program from Weight Watchers and try as

well to eliminate many breads and starches as the GI diet you followed

requires.

My friend in Jersey was on the GI diet and lost about 20 pounds. She also

recommends it highly.

Reen

[Guest guest]

,

I hope eating is better today. I had some trouble with soft food in the

beginning. Not a lot but I remember rice covered with tons of soupy gravy

sticking and not going down.

JoAnn

[Guest guest]

Thanks, I am definitely better today.  I think I had expected immediate and

significant improvement.  I am more realistic about it being a slower

process. 

________________________________

From: JoAnn <jomascarenas@...>

achalasia

Sent: Mon, July 12, 2010 6:48:02 AM

Subject: Re: Discouraged

 

,

I hope eating is better today. I had some trouble with soft food in the

beginning. Not a lot but I remember rice covered with tons of soupy gravy

sticking and not going down.

JoAnn

[Guest guest]

, I don't even know Dr. Rice's final opinion. He needs to review my test

results and call me. I hope his opinion remains myotomy but you never know. I

think the pressure in my les will be a determining factor.

I will let you know when I get word, then I need to ask questions and decide...

Keep me updated on your ability to swallow!!

Hope it stays easy for you

Cara

[Guest guest]

I remember mac and cheese, heavy on the cheese worked well for my son post

op...angela

Sent from my Verizon Wireless BlackBerry

Re: Discouraged

 

,

I hope eating is better today. I had some trouble with soft food in the

beginning. Not a lot but I remember rice covered with tons of soupy gravy

sticking and not going down.

JoAnn