Re: Re: Incisions in my post -ectomy scar tissue

[Guest guest]

Steve,

Life must be tough on you, never seeing the positive of any person in the world,

especially never seeing anything positive in any doctor.

By reading this post of yours, I think you try to help me? I believe you don't

understand what happened to me before? Have you followed my story and are your

therefore well enough informed to state the things you state here?

Well, in short this has happened to me before: I had an open myotomy performed

13 years ago. It helped me very well, but after giving birth to both my sons,

things went wrong again and I had a re-do of the myotomy Jan. 5th 2007.

Unfortunately this one didn't work and left me with only one other option, which

was the esophagectomy I. I struggled whether or not to go for it, but decided to

give it a try, since living on fluids only isn't my idea of great quality of

life, neither is living with terrible spasms day in day out. There were a whole

lot of things I weighed and that made me come to the conclusion I was best of

having that -ectomy done.

I was told upfront scar tissue could become an issue and recovering would take

about a year.

Now I am 8 months post -ectomy and I am still recovering. It is very normal to

have plenty dilatations for scar tissue after an -ectomy. Once you need as many

as I am needing right now, there are other options to consider.

Sure there is the risk of perforation, but when you know enough about scar

tissue at the adhesion area, you know that there is so much tissue, that risks

are very small.

My doctor has treated over 1000 -ectomy patients so far and all of them made it

and all of them are doing fine. In fact I am doing great as well, during the

days the scar tissue doesn't bother me. That's why they are helping me, to get

the scar tissue to stay away as soon as possible and to get me off the J-tube (I

need that during the nights still and during the days I am closed up).

I could get negative, but it would bring me nowhere. My docs informed me upfront

before going in for my -ectomy and they informed me now before undergoing any

new treatment. I didn't go through the -ectomy thing to give up after 8 months!

I just need to hang in there a bit longer and life will start over again for me.

It's a matter of staying positive and hanging in there.

It's too easy to give up. Life is too precious to do that. I am too young to

give in. My husband and kids deserve a healthy mother.

In my case there is no need to be afraid. Sure I might get a perforation. But

hey, I might get hit by a car tomorrow as well...

Isabella

________________________________

From: steve <stevenakamichi@...>

achalasia

Sent: Saturday, December 13, 2008 1:03:10 PM

Subject: Re: Incisions in my post -ectomy scar tissue

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]

isabella- I work with surgeons. one doc uses septrafilm to help with scarring

and adhesions formation. since scarring and adhesion are the result of an

inflamatory response I wonder if this could be of help to you. also I wonder it

some type of low dose of a swallowed steroid, wouldn't help slow the

progression? my son swallows flovent to help inhibit eosinophils in his

esophagus...angela

Re: Re: Incisions in my post -ectomy scar tissue

Steve,

Life must be tough on you, never seeing the positive of any person in the

world, especially never seeing anything positive in any doctor.

By reading this post of yours, I think you try to help me? I believe you don't

understand what happened to me before? Have you followed my story and are your

therefore well enough informed to state the things you state here?

Well, in short this has happened to me before: I had an open myotomy performed

13 years ago. It helped me very well, but after giving birth to both my sons,

things went wrong again and I had a re-do of the myotomy Jan. 5th 2007.

Unfortunately this one didn't work and left me with only one other option, which

was the esophagectomy I. I struggled whether or not to go for it, but decided to

give it a try, since living on fluids only isn't my idea of great quality of

life, neither is living with terrible spasms day in day out. There were a whole

lot of things I weighed and that made me come to the conclusion I was best of

having that -ectomy done.

I was told upfront scar tissue could become an issue and recovering would take

about a year.

Now I am 8 months post -ectomy and I am still recovering. It is very normal to

have plenty dilatations for scar tissue after an -ectomy. Once you need as many

as I am needing right now, there are other options to consider.

Sure there is the risk of perforation, but when you know enough about scar

tissue at the adhesion area, you know that there is so much tissue, that risks

are very small.

My doctor has treated over 1000 -ectomy patients so far and all of them made

it and all of them are doing fine. In fact I am doing great as well, during the

days the scar tissue doesn't bother me. That's why they are helping me, to get

the scar tissue to stay away as soon as possible and to get me off the J-tube (I

need that during the nights still and during the days I am closed up).

I could get negative, but it would bring me nowhere. My docs informed me

upfront before going in for my -ectomy and they informed me now before

undergoing any new treatment. I didn't go through the -ectomy thing to give up

after 8 months! I just need to hang in there a bit longer and life will start

over again for me. It's a matter of staying positive and hanging in there.

It's too easy to give up. Life is too precious to do that. I am too young to

give in. My husband and kids deserve a healthy mother.

In my case there is no need to be afraid. Sure I might get a perforation. But

hey, I might get hit by a car tomorrow as well...

Isabella

[Guest guest]

Steve,

I had upwards of 70 dilations (the computer kept track) after my

esophagectomy all as a result of a web like stricture that formed at the

surgical site. The scar tissue was expelled after these many dilations with

no lasting negative problems. Today I am fine eat any and everything without

pain except when I over eat then I have pain so I know not to over eat as

stomach/esophagectomy is smaller than normal.

D

[Guest guest]

Hi Steve,

Thank you for this post of yours where you explain why you reacted the way you

did. I understand now.

I understand why you are against dilatations after surgery, but as others

already explained I am not having my dilatations because of the achalasia now,

but because of the scar tissue build up that formed itself after the removal of

my esophagus at the adhesion area of the little bit of esophagus that was left

and the pulled up stomach (in my neck, just beneath my chin).

First off, sure every dilatation (including the ones performed after the

-ectomy) includes the risk of perforation. An important difference though, is

the fact that a perforation in the area where I am dilatated at now is less

dangerous than a perforation further down (in the cardia area). I did have

several bleedings in the beginning of the row of post -ectomy dilatations, but

never real perforations and it never harmed me. So far I never heard of anyone

having had post -ectomy dilatations with perforations and severe complications

because of that. Maybe that is, since they keep the diameter of the dilatation

very low. It's not wider than max. 19 mm, this indeed because of the perforation

risk. When a doctor sticks to that, risks are minimised.

You are right not running into the -ectomy thing. You are right weighing that

decision carefully. Yet, I would like to add for you that most studies you read

on -ectomies are based upon data from cancer patients. Simply as the -ectomy

procedure is performed mostly in cancer cases. I researched the subject pretty

well myself and talked to many doctors all over the world. It seems that e.g.

mortality risks are pretty high when you read the researches. Yet, you shouldn't

forget that those count for the cancer patients, who are mostly elderly people

who have cancer so who are in a very different shape than us achalasians who are

mostly pretty healthy (OK, besides the achalasia that is). If you go to a

hospital that performs at least 15 -ectomies a year, one is in pretty safe

hands.

I doubt why you are advised having a coloninc interposition. For as far as I

know that is a much more difficult surgery, that fewer surgeons have enough

experience to perform. I doubt whether this surgery is a better solution than

the gastric pull-up, but of course I don't know all your medical history and the

reasons why your doctor advised you this.

All in all, when you read the messages hear on the board, I think you can sum

things up to the conclusion that an -ectomy really isn't all that dangerous and

often gives the relief the 10% group is looking for. I belong to that 10% group

as well, so as many others here on the board. Everything failed, I had 5 balloon

dilatations about 15 years ago, my first open Hellers with wrap about 13 years

ago, 2 bougie dilatations about 4 years ago, my second open Hellers with redo of

the wrap january 5th 2007, 2 Botox injections in spring/summer 2007 and I had my

-ectomy done 31st March last...

The -ectomy isn't an easy option and hasn't yet brought me to where I want to

be. But I am very close to the finish line. I don't jump for joy that I had this

surgery, simply as it was a long road to go and simply as it still is a long

road I have ahead of me. Never will I tell anyone to count on life to get better

than before the -ectomy any sooner than after about a year post -ectomy, simply

as I experienced things might just not work out that way and it's a huge

disappointment going through such major and final surgery to end up needing as

many treatments as I did and not being able to eat still and to stay hooked onto

that J-tube every night and sometimes still during the day... But when you keep

having faith and you have that goal in front of you, you can make it and needn't

fear. The scar tissue is the last bridge I (think) I need to cross before my new

life can finally start. It's all worth it and I'ld do it all over again. Yet,

I'ld be more

realistic going in for it now.

One thing I want to add, is that it is not only of the utmost importance that

one going in for the -ectomy finds himself the best possible surgeon. One should

be in the hands of a very experienced and hard working team. Unfortunately I

must say, that I think doesn't find herself in that type of hands,

resulting in all the problems she is facing right now. It's not 's

fault, it's her doctor's fault for not acting at the time they should. They have

lost precious time and now need to find a way to change things for the better in

the end, but it has already costed her too many precious years that could have

been full of joy because of the new life that was meant to be given to her...

Isabella

________________________________

From: steve <stevenakamichi@...>

achalasia

Sent: Sunday, December 14, 2008 8:22:46 AM

Subject: Re: Incisions in my post -ectomy scar tissue

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-interpositi on (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

> >

> >

> >

> >

> >