Re: Incisions in my post -ectomy scar tissue

[Guest guest]

Hi Isabella

Good Luck for the dilatation and for the future surgery. I am seeing my Gastro

Doc on Thursday of this week to discuss what my options are and your 4 options

are interesting. Keep in touch.

________________________________

From: Isabella Arnold <arnoldisabella@...>

Achalasia <achalasia >

Sent: Tuesday, December 9, 2008 11:17:28 AM

Subject: Incisions in my post -ectomy scar tissue

Hi all,

Just wanted to let you know how my appointment with the professor went today.

I went to see him, as we needed to talk about further treatment of my scar

tissue. The scar tissue build up in my " new esophagus " is pretty extreme and

needs further treatment besides the " normal " dilatations. This professor told me

this morning that having had 18 dilatations until now after my -ectomy on 31

March last is really a lot and not every day business. The narrowing caused by

it is pretty extreme, but... it's something that simply occurs in some cases and

I happen to be one of them again (ha ha, lucky me... not).

There are 4 options, according to the professor.

Option one is proceeding like we have untill now: dilatation after dilatation,

until the scar tissue stops growing and stops closing things up. It will work in

the end, but it will take a whole lot of time before it's over and done with. So

not the best option.

Another option is removing the adhesion area and replacing it by a piece of the

intestines. Huge surgery and absolutely out of the question for me, especially

regarding the fact that option 1 might work as well. The professor agreed, but

just wanted to let me know that that also was an option. So: we're not going for

that one.

Now it gets more interesting. .. The third option is cutting away the scar

tissue at the adhesion area, so not just making incisions in it, but really

removing it. It's a small procedure (about 15 minutes), done through endoscopy.

It's done using Propofol (same as I get during the dilatations) and after a few

hours I'm allowed to go home and things will hopefully be better. Success rates:

50/50. Complications are about the same as with dilatations, so nothing for me

to worry about honestly. Should I once again belong to the group where things

fail: nothing lost, as things won't get worse by this procedure, it might only

leave me at the same point as where I am at right now.

The fourth option is placing as stent. This stent works as a long lasting

dilatation and give a great success rate. Nevertheless I would have a metal tube

in my " new esophagus " (though it is a small procedure as well, also performed

through endoscopy) and the things needs to be gotten out some day as well. It

doesn't remove the d... scar tissue, it pushes it aside.

All in all we weighed things together, just using common sense, and together we

decided to have a go for the third option. So we're going to try to cut the

tissue away and let's keep our fingers crossed that this once I belong to the

lucky ones and the tissue won't grow back.

It's all we can do now. Hope. There are no guarantees. But when you lose hope,

what's left for one? I better be patient and go through this. If it doesn't

work, the appointment for the stent will be made immediately. There's nothing

for me to lose here, so let's just think I'll win.

Oh by the way, this was the first time I saw this professor. He's a pretty young

doctor to be a professor, but very very specialised and I have complete faith in

him. He has treated over 1000 (!!!) -ectomy patients untill now and told me he

had dealt with cases like mine before (scar tissue wise that is, not achalasia

wise, but this isn't about achalasia, is it?). He told me he had never seen a

case like mine that hadn't been solved by one of the upper options. He told me

to stay positive, keep having faith and never lose hope. He told me we're going

to make it.

Next Wednesday (17th December) I'll have another dilatation (as a bridge to the

procedure) and Wednesday January 7th I'll have the tissue removed. Of course

I'll let you all know how things proceed.

Love,

Isabella

[Guest guest]

Isabella,

I wish I could just give you a big hug. I'm so sorry that you continue to

struggle with getting things straightened out since your 'ectomy. That being

said, you are on the right track and it sounds like this new doctor knows

exactly what he is doing. You are definitely making the right choice and if it

were me I would be choosing to have the tissue cut as well to see if that works.

If it doesn't work, you won't be any worse off, and if it does work, then

hopefully the problem is solved once and for all. I know things have been rough

and it must seem like such a long road, but you have showed such courage and

strength through all of it. I truly admire you and your positive outlook - you

are an inspiration to the rest of us.

Love,

in NY

(quickly closing in on the two year anniversary of my 'ectomy - 3/29/07)

---- Isabella Arnold <arnoldisabella@...> wrote:

> Hi all,

>

> Just wanted to let you know how my appointment with the professor went today.

>

> I went to see him, as we needed to talk about further treatment of my scar

tissue. The scar tissue build up in my " new esophagus " is pretty extreme and

needs further treatment besides the " normal " dilatations. This professor told me

this morning that having had 18 dilatations until now after my -ectomy on 31

March last is really a lot and not every day business. The narrowing caused by

it is pretty extreme, but... it's something that simply occurs in some cases and

I happen to be one of them again (ha ha, lucky me... not).

>

> There are 4 options, according to the professor.

>

> Option one is proceeding like we have untill now: dilatation after dilatation,

until the scar tissue stops growing and stops closing things up. It will work in

the end, but it will take a whole lot of time before it's over and done with. So

not the best option.

>

> Another option is removing the adhesion area and replacing it by a piece of

the intestines. Huge surgery and absolutely out of the question for me,

especially regarding the fact that option 1 might work as well. The professor

agreed, but just wanted to let me know that that also was an option. So: we're

not going for that one.

>

> Now it gets more interesting... The third option is cutting away the scar

tissue at the adhesion area, so not just making incisions in it, but really

removing it. It's a small procedure (about 15 minutes), done through endoscopy.

It's done using Propofol (same as I get during the dilatations) and after a few

hours I'm allowed to go home and things will hopefully be better. Success rates:

50/50. Complications are about the same as with dilatations, so nothing for me

to worry about honestly. Should I once again belong to the group where things

fail: nothing lost, as things won't get worse by this procedure, it might only

leave me at the same point as where I am at right now.

>

> The fourth option is placing as stent. This stent works as a long lasting

dilatation and give a great success rate. Nevertheless I would have a metal tube

in my " new esophagus " (though it is a small procedure as well, also performed

through endoscopy) and the things needs to be gotten out some day as well. It

doesn't remove the d... scar tissue, it pushes it aside.

>

> All in all we weighed things together, just using common sense, and together

we decided to have a go for the third option. So we're going to try to cut the

tissue away and let's keep our fingers crossed that this once I belong to the

lucky ones and the tissue won't grow back.

>

> It's all we can do now. Hope. There are no guarantees. But when you lose hope,

what's left for one? I better be patient and go through this. If it doesn't

work, the appointment for the stent will be made immediately. There's nothing

for me to lose here, so let's just think I'll win.

>

> Oh by the way, this was the first time I saw this professor. He's a pretty

young doctor to be a professor, but very very specialised and I have complete

faith in him. He has treated over 1000 (!!!) -ectomy patients untill now and

told me he had dealt with cases like mine before (scar tissue wise that is, not

achalasia wise, but this isn't about achalasia, is it?). He told me he had never

seen a case like mine that hadn't been solved by one of the upper options. He

told me to stay positive, keep having faith and never lose hope. He told me

we're going to make it.

>

> Next Wednesday (17th December) I'll have another dilatation (as a bridge to

the procedure) and Wednesday January 7th I'll have the tissue removed. Of course

I'll let you all know how things proceed.

>

> Love,

> Isabella

>

>

>

>

>

[Guest guest]

Isabella...this sounds scary, but it sounds encouraging all at the same

time. It beats hearing, " sorry that's all we can do " all to pieces. You are

going to beat this thing yet.

You continue to have courage and that's a great part of healing. Hang in

there...and you know all on this board will be hoping and praying right along

with you.

Hugs,

Maggie

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Hi Isabella,

You are such a strong, brave woman. I admire you very much and can't believe

the support you continue to offer to others when you are in such a dilemma.

After so many dilatations, it's about time another alternative was discussed.

I've had many dilatations, but that was before my esophagectomy, and there are

risks each time.

As always, I wish you the very best of success.

.

achalasia@...: arnoldisabella@...: Tue, 9 Dec 2008

03:17:28 -0800Subject: Incisions in my post -ectomy scar tissue

Hi all,Just wanted to let you know how my appointment with the professor went

today.I went to see him, as we needed to talk about further treatment of my scar

tissue. The scar tissue build up in my " new esophagus " is pretty extreme and

needs further treatment besides the " normal " dilatations. This professor told me

this morning that having had 18 dilatations until now after my -ectomy on 31

March last is really a lot and not every day business. The narrowing caused by

it is pretty extreme, but... it's something that simply occurs in some cases and

I happen to be one of them again (ha ha, lucky me... not).There are 4 options,

according to the professor. Option one is proceeding like we have untill now:

dilatation after dilatation, until the scar tissue stops growing and stops

closing things up. It will work in the end, but it will take a whole lot of time

before it's over and done with. So not the best option.Another option is

removing the adhesion area and replacing it by a piece of the intestines. Huge

surgery and absolutely out of the question for me, especially regarding the fact

that option 1 might work as well. The professor agreed, but just wanted to let

me know that that also was an option. So: we're not going for that one.Now it

gets more interesting... The third option is cutting away the scar tissue at the

adhesion area, so not just making incisions in it, but really removing it. It's

a small procedure (about 15 minutes), done through endoscopy. It's done using

Propofol (same as I get during the dilatations) and after a few hours I'm

allowed to go home and things will hopefully be better. Success rates: 50/50.

Complications are about the same as with dilatations, so nothing for me to worry

about honestly. Should I once again belong to the group where things fail:

nothing lost, as things won't get worse by this procedure, it might only leave

me at the same point as where I am at right now.The fourth option is placing as

stent. This stent works as a long lasting dilatation and give a great success

rate. Nevertheless I would have a metal tube in my " new esophagus " (though it is

a small procedure as well, also performed through endoscopy) and the things

needs to be gotten out some day as well. It doesn't remove the d... scar tissue,

it pushes it aside.All in all we weighed things together, just using common

sense, and together we decided to have a go for the third option. So we're going

to try to cut the tissue away and let's keep our fingers crossed that this once

I belong to the lucky ones and the tissue won't grow back.It's all we can do

now. Hope. There are no guarantees. But when you lose hope, what's left for one?

I better be patient and go through this. If it doesn't work, the appointment for

the stent will be made immediately. There's nothing for me to lose here, so

let's just think I'll win.Oh by the way, this was the first time I saw this

professor. He's a pretty young doctor to be a professor, but very very

specialised and I have complete faith in him. He has treated over 1000 (!!!)

-ectomy patients untill now and told me he had dealt with cases like mine before

(scar tissue wise that is, not achalasia wise, but this isn't about achalasia,

is it?). He told me he had never seen a case like mine that hadn't been solved

by one of the upper options. He told me to stay positive, keep having faith and

never lose hope. He told me we're going to make it.Next Wednesday (17th

December) I'll have another dilatation (as a bridge to the procedure) and

Wednesday January 7th I'll have the tissue removed. Of course I'll let you all

know how things proceed.Love,Isabella[Non-text portions of this message have

been removed]

_________________________________________________________________

[Guest guest]

Those sound like four wonderful options. Sound like the Prof is into

extreme body modification.

EVERYone of these options has considerable risks, including the most

prevalent: PERFORATION-INDUCED MASSIVE INFECTION, which will spread

throughout your entire chest-cavity, necessitating very-open, possibly

repeated, emergency exploratory evacuation of diseased, infected

tissues. Sounds nice, huh? That would be an E-ticket adventure for

your surgical team. A surgeon's DREAM$$.

possibly MUCH more scar tissue to worry about.

Did your professor advise of you of that very serious risk of

perforation with any of your mentioned options? What is he/she-- a

professor of anatomy?

Do you know that there are a whole array of other non-surgical

techniques available?

Why did you have so many (18????) dilations? having that many is

patently ridiculous. After a much lower number were performed without

any benefit(s), any knowledgeable doctor would NOT recommend to go

that same route.

You must think of your body and self-respect, before some doctor would

recommend to do so many. Don't be hesitant to speak up, although no

doctor would want that.

Hope you get some better advice. You may get better by not having so

much surgery and living with what you have.

Stay well and away from that professor of anatomy

>

> Hi all,

>

> Just wanted to let you know how my appointment with the professor

went today.

>

> I went to see him, as we needed to talk about further treatment of

my scar tissue. The scar tissue build up in my " new esophagus " is

pretty extreme and needs further treatment besides the " normal "

dilatations. This professor told me this morning that having had 18

dilatations until now after my -ectomy on 31 March last is really a

lot and not every day business. The narrowing caused by it is pretty

extreme, but... it's something that simply occurs in some cases and I

happen to be one of them again (ha ha, lucky me... not).

>

> There are 4 options, according to the professor.

>

> Option one is proceeding like we have untill now: dilatation after

dilatation, until the scar tissue stops growing and stops closing

things up. It will work in the end, but it will take a whole lot of

time before it's over and done with. So not the best option.

>

> Another option is removing the adhesion area and replacing it by a

piece of the intestines. Huge surgery and absolutely out of the

question for me, especially regarding the fact that option 1 might

work as well. The professor agreed, but just wanted to let me know

that that also was an option. So: we're not going for that one.

>

> Now it gets more interesting... The third option is cutting away the

scar tissue at the adhesion area, so not just making incisions in it,

but really removing it. It's a small procedure (about 15 minutes),

done through endoscopy. It's done using Propofol (same as I get during

the dilatations) and after a few hours I'm allowed to go home and

things will hopefully be better. Success rates: 50/50. Complications

are about the same as with dilatations, so nothing for me to worry

about honestly. Should I once again belong to the group where things

fail: nothing lost, as things won't get worse by this procedure, it

might only leave me at the same point as where I am at right now.

>

> The fourth option is placing as stent. This stent works as a long

lasting dilatation and give a great success rate. Nevertheless I would

have a metal tube in my " new esophagus " (though it is a small

procedure as well, also performed through endoscopy) and the things

needs to be gotten out some day as well. It doesn't remove the d...

scar tissue, it pushes it aside.

>

> All in all we weighed things together, just using common sense, and

together we decided to have a go for the third option. So we're going

to try to cut the tissue away and let's keep our fingers crossed that

this once I belong to the lucky ones and the tissue won't grow back.

>

> It's all we can do now. Hope. There are no guarantees. But when you

lose hope, what's left for one? I better be patient and go through

this. If it doesn't work, the appointment for the stent will be made

immediately. There's nothing for me to lose here, so let's just think

I'll win.

>

> Oh by the way, this was the first time I saw this professor. He's a

pretty young doctor to be a professor, but very very specialised and I

have complete faith in him. He has treated over 1000 (!!!) -ectomy

patients untill now and told me he had dealt with cases like mine

before (scar tissue wise that is, not achalasia wise, but this isn't

about achalasia, is it?). He told me he had never seen a case like

mine that hadn't been solved by one of the upper options. He told me

to stay positive, keep having faith and never lose hope. He told me

we're going to make it.

>

> Next Wednesday (17th December) I'll have another dilatation (as a

bridge to the procedure) and Wednesday January 7th I'll have the

tissue removed. Of course I'll let you all know how things proceed.

>

> Love,

> Isabella

>

>

>

>

>

[Guest guest]

Hi all,

Thanks for the warm responses I got. I could use the support! I am doing fine

now. I know something will change for the better real soon and of course I'll

keep you all updated.

Love,

Isabella

________________________________

From: Isabella Arnold <arnoldisabella@...>

Achalasia <achalasia >

Sent: Tuesday, December 9, 2008 12:17:28 PM

Subject: Incisions in my post -ectomy scar tissue

Hi all,

Just wanted to let you know how my appointment with the professor went today.

I went to see him, as we needed to talk about further treatment of my scar

tissue. The scar tissue build up in my " new esophagus " is pretty extreme and

needs further treatment besides the " normal " dilatations. This professor told me

this morning that having had 18 dilatations until now after my -ectomy on 31

March last is really a lot and not every day business. The narrowing caused by

it is pretty extreme, but... it's something that simply occurs in some cases and

I happen to be one of them again (ha ha, lucky me... not).

There are 4 options, according to the professor.

Option one is proceeding like we have untill now: dilatation after dilatation,

until the scar tissue stops growing and stops closing things up. It will work in

the end, but it will take a whole lot of time before it's over and done with. So

not the best option.

Another option is removing the adhesion area and replacing it by a piece of the

intestines. Huge surgery and absolutely out of the question for me, especially

regarding the fact that option 1 might work as well. The professor agreed, but

just wanted to let me know that that also was an option. So: we're not going for

that one.

Now it gets more interesting. .. The third option is cutting away the scar

tissue at the adhesion area, so not just making incisions in it, but really

removing it. It's a small procedure (about 15 minutes), done through endoscopy.

It's done using Propofol (same as I get during the dilatations) and after a few

hours I'm allowed to go home and things will hopefully be better. Success rates:

50/50. Complications are about the same as with dilatations, so nothing for me

to worry about honestly. Should I once again belong to the group where things

fail: nothing lost, as things won't get worse by this procedure, it might only

leave me at the same point as where I am at right now.

The fourth option is placing as stent. This stent works as a long lasting

dilatation and give a great success rate. Nevertheless I would have a metal tube

in my " new esophagus " (though it is a small procedure as well, also performed

through endoscopy) and the things needs to be gotten out some day as well. It

doesn't remove the d... scar tissue, it pushes it aside.

All in all we weighed things together, just using common sense, and together we

decided to have a go for the third option. So we're going to try to cut the

tissue away and let's keep our fingers crossed that this once I belong to the

lucky ones and the tissue won't grow back.

It's all we can do now. Hope. There are no guarantees. But when you lose hope,

what's left for one? I better be patient and go through this. If it doesn't

work, the appointment for the stent will be made immediately. There's nothing

for me to lose here, so let's just think I'll win.

Oh by the way, this was the first time I saw this professor. He's a pretty young

doctor to be a professor, but very very specialised and I have complete faith in

him. He has treated over 1000 (!!!) -ectomy patients untill now and told me he

had dealt with cases like mine before (scar tissue wise that is, not achalasia

wise, but this isn't about achalasia, is it?). He told me he had never seen a

case like mine that hadn't been solved by one of the upper options. He told me

to stay positive, keep having faith and never lose hope. He told me we're going

to make it.

Next Wednesday (17th December) I'll have another dilatation (as a bridge to the

procedure) and Wednesday January 7th I'll have the tissue removed. Of course

I'll let you all know how things proceed.

Love,

Isabella

[Guest guest]

Isabella, of course I'm in support of you because you have achallasia,

and we're all searching for the solutions that will work for each of us.

My style of writing is harsh, but it isn't directed at you; rather,

the unnecessary redundancy and double-talk given by GI's and surgeons.

When I had my lap myotomy with fundoplication wrap by one of nation's

leading surgeons treating achalasia, he stated that, in my case with a

grossly-enlarged/tortuous-shaped and significant amount of scar

tissue, that he would NOT pursue any other endoscopic procedures for

fear of perforation and additional scar tissue. And definitely NO MORE

dilatations. If there's one thing that was clear from ~8 years of

experience with this expert, this statement was exceedingly so.

That's why I questioned your having 18 dilalatations, and possibly

more to break up the scar tissue. The expert in charge of my surgical

team explicitly rejected post-wrap/scar tissue manipulations, saying

those would only increase or toughen the existing scar tissue. In my

case, the consequences of all my major surgeries served to do with to

increase LES pressure zone, making pain more perceptive and persistent.

He seemed to refer me away to others for the pain problems, and push

a colonic-interposition (an esophagectomy with a portion of the colon

and blood supply moved up to its new location). From my perspective,

since all the surgeries didn't offer meaningful benefits vs their

risks, I am postponing the esophagectomy until my groups that are

surgery-resistant (and fail other traditional methods) have much

better outcomes. Infection from perforation is leading side-effect in

all groups of patients. I have had perforation from one of my

dilatations and didn't find out about it until I read my medical

records. One needs to establish a trust-level with your doctor and the

whole team, before proceeding to more radical operations.

Everyone has a different experiences, and I am not dismissing yours.

This forum is for learning, and I shouldn't have sounded so negative.

What's important to read up on clinical trials and see what the actual

risks are. Like I said, there seems to by a relatively high (90%)

success rates with most surgeries. My only point is to carefully

assess what happens in the 10% group, one in which I belong.

> >

> > Hi all,

> >

> > Just wanted to let you know how my appointment with the professor

> went today.

> >

> > I went to see him, as we needed to talk about further treatment of

> my scar tissue. The scar tissue build up in my " new esophagus " is

> pretty extreme and needs further treatment besides the " normal "

> dilatations. This professor told me this morning that having had 18

> dilatations until now after my -ectomy on 31 March last is really a

> lot and not every day business. The narrowing caused by it is pretty

> extreme, but... it's something that simply occurs in some cases and I

> happen to be one of them again (ha ha, lucky me... not).

> >

> > There are 4 options, according to the professor.

> >

> > Option one is proceeding like we have untill now: dilatation after

> dilatation, until the scar tissue stops growing and stops closing

> things up. It will work in the end, but it will take a whole lot of

> time before it's over and done with. So not the best option.

> >

> > Another option is removing the adhesion area and replacing it by a

> piece of the intestines. Huge surgery and absolutely out of the

> question for me, especially regarding the fact that option 1 might

> work as well. The professor agreed, but just wanted to let me know

> that that also was an option. So: we're not going for that one.

> >

> > Now it gets more interesting. .. The third option is cutting away the

> scar tissue at the adhesion area, so not just making incisions in it,

> but really removing it. It's a small procedure (about 15 minutes),

> done through endoscopy. It's done using Propofol (same as I get during

> the dilatations) and after a few hours I'm allowed to go home and

> things will hopefully be better. Success rates: 50/50. Complications

> are about the same as with dilatations, so nothing for me to worry

> about honestly. Should I once again belong to the group where things

> fail: nothing lost, as things won't get worse by this procedure, it

> might only leave me at the same point as where I am at right now.

> >

> > The fourth option is placing as stent. This stent works as a long

> lasting dilatation and give a great success rate. Nevertheless I would

> have a metal tube in my " new esophagus " (though it is a small

> procedure as well, also performed through endoscopy) and the things

> needs to be gotten out some day as well. It doesn't remove the d...

> scar tissue, it pushes it aside.

> >

> > All in all we weighed things together, just using common sense, and

> together we decided to have a go for the third option. So we're going

> to try to cut the tissue away and let's keep our fingers crossed that

> this once I belong to the lucky ones and the tissue won't grow back.

> >

> > It's all we can do now. Hope. There are no guarantees. But when you

> lose hope, what's left for one? I better be patient and go through

> this. If it doesn't work, the appointment for the stent will be made

> immediately. There's nothing for me to lose here, so let's just think

> I'll win.

> >

> > Oh by the way, this was the first time I saw this professor. He's a

> pretty young doctor to be a professor, but very very specialised and I

> have complete faith in him. He has treated over 1000 (!!!) -ectomy

> patients untill now and told me he had dealt with cases like mine

> before (scar tissue wise that is, not achalasia wise, but this isn't

> about achalasia, is it?). He told me he had never seen a case like

> mine that hadn't been solved by one of the upper options. He told me

> to stay positive, keep having faith and never lose hope. He told me

> we're going to make it.

> >

> > Next Wednesday (17th December) I'll have another dilatation (as a

> bridge to the procedure) and Wednesday January 7th I'll have the

> tissue removed. Of course I'll let you all know how things proceed.

> >

> > Love,

> > Isabella

> >

> >

> >

> >

> >