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

[Guest guest]

Hi ,

Wow, you had 70 post -ectomy dilatations??? And I thought I had many having had

18 untill now and getting my 19th tomorrow...

Good to read though how great you are doing nowadays, that long after your

surgery!

I have been told that by sticking to this dilatation treatment indeed my

problems would be solved in the end, but it might take me quite some time. Now

that I read you had 70 dilatations, I understand just how much time it could

take... It makes it more clear to me that indeed I should give cutting away the

tissue a shot and if that doesn't work I'll definitely give the stent a try.

Should that still not do the trick, well OK than, I'll have another go with the

dilatations. One way or the other, it's going to be fine. It's always good to

hear how things worked in others!

Thanks for always chiming in at the right moment!!!

Love,

Isabella

________________________________

From: <albyone23@...>

achalasia

Sent: Monday, December 15, 2008 6:44:27 PM

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

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/esophagecto my is smaller than normal.

D

[Guest guest]

Hi Isabella,

Just prior to my e-ctomy thee was some suggestion about using a stent it was

in the experimental stage at that point being done by a Dr. Boyce in Florida

he indicated at that point that there might be a problem with the stent

migrating so we opted not to do that, I am sure there are improvements since

the that was in 1993 but I would ask Your Dr. about that just to be sure,

perhaps you already have. Just wanted to mention it.

F

============================================================================

=====

I have been told that by sticking to this dilatation treatment indeed my

problems would be solved in the end, but it might take me quite some time.

Now that I read you had 70 dilatations, I understand just how much time it

could take... It makes it more clear to me that indeed I should give cutting

away the tissue a shot and if that doesn't work I'll definitely give the

stent a try. Should that still not do the trick, well OK than, I'll have

another go with the dilatations. One way or the other, it's going to be

fine. It's always good to hear how things worked in others!

[Guest guest]

Hi ,

Thanks for thinking of that! But you are right, the stents have gone through

some incredible developments. Nowadays there is some sort of anti-migration cup

placed on the stents. Furthermore there is some special coating on the metal of

the stent, that prevents issues as well (had to laugh about that one, since I

work for a company that works with metal a lot and the newest types we now use

also have a new coating...). Nowadays there are even solvable stents (absorbed

by the body within 12 weeks), but in my case they don't seem to be the best

option (didn't bother to ask why any more to be honest, I already asked so much

and trusted the doc's opinion).

How are you doing healthwise yourself nowadays, ? Everything OK?

Thanks again!!!

Love,

Isabella

________________________________

From: <albyone23@...>

achalasia

Sent: Tuesday, December 16, 2008 8:14:29 PM

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

Hi Isabella,

Just prior to my e-ctomy thee was some suggestion about using a stent it was

in the experimental stage at that point being done by a Dr. Boyce in Florida

he indicated at that point that there might be a problem with the stent

migrating so we opted not to do that, I am sure there are improvements since

the that was in 1993 but I would ask Your Dr. about that just to be sure,

perhaps you already have. Just wanted to mention it.

F

============ ========= ========= ========= ========= ========= =========

========= =

=====

I have been told that by sticking to this dilatation treatment indeed my

problems would be solved in the end, but it might take me quite some time.

Now that I read you had 70 dilatations, I understand just how much time it

could take... It makes it more clear to me that indeed I should give cutting

away the tissue a shot and if that doesn't work I'll definitely give the

stent a try. Should that still not do the trick, well OK than, I'll have

another go with the dilatations. One way or the other, it's going to be

fine. It's always good to hear how things worked in others!

[Guest guest]

Hi Isabella,

It sounds as if you are in good hands, I am sure everything will work out

fine patience is the key word here. Aside from having a Prostatectomy and

surviving cancer in May I had three hernias repaired in October on my 75th

birthday no less I am doing extremely well, but I have had happier

birthdays.

F

ms/

[Guest guest]

Hi ,

Still waiting in the hospital. In about half an hour I'll walk up to the room...

For tomorrow I wish you all the luck in the worl!!!

Maybe tomorrow will finally be your turning point. I cannot imagine you needing

to struggle on the way you have done until now much longer.

You hang in there, girl, and know that I am thinking of you tomorrow.

Love,

Isabella

________________________________

From: Hulmes <christine.hulmes@...>

achalasia

Sent: Wednesday, December 17, 2008 1:57:01 PM

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

please read this too!!!

Hi Isabella

Good Luck on your Dilatation this afternoon. Boy you are going through it aren't

you. So sorry that you have a mechanical infection with the J-Tube. I have a

problem with the MRSA in the same place and understand your concern. Medics have

told me that as long as I have a foreign body through my belly I will continue

to have problems but I can deal with that. However, I have to face tomorrow and

any possible treatment myself. I will have a new J-Tube inserted (possably a

longer one with a bigger bore), have a Gastroscopy done to see what is going on

inside and to evaluate what treatment options I have and have that treatment at

the same time while sedated. Good Luck for later.

____________ _________ _________ __

From: Isabella Arnold <arnoldisabella>

achalasia@grou ps.com

Sent: Wednesday, December 17, 2008 11:50:14 AM

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

please read this too!!!

Dear ,

Thank you so much for trying to help!!!

Indeed they use hyperbaric over here as well, I've been told about that as well.

So for now they are starting off with cutting away the tissue; if that doesn't

work they put the stent in; if that doesn't work we indeed still have got the

hyperbaric option as well. I don't know much about it, we haven't spoken a lot

about it yet, but indeed I know it's another possibility. Since I hope the

cutting on Jan. 7th will help me, I hope I don't need to consider other

treatments.. .

At the moment I am in my hospital as I need to go in for my next dilatation in

about 3 hours. Earlier this morning I went to see my nurse practitioner. I had

my tube infected again. Cause that the infection returned so quickly is that my

body responds to meds differently nowadays than in other people (because of the

completely renewed digestion system). The PPI's (Nexiums) conflicted with the

antibiotics I got. I left enough time (recommended by the pharmacist) between

the PPI's and the antibiotics, but still they had the antibiotics disfunction. I

stopped taking the PPI's 3 days before my a.b. treatment would stop and it

started to function, but of course way too short a time. So the infection

returned.

I have now been given a new a.b. treatment for 2 weeks. Should the infection

return again, I am to take these antibiotics untill the tube may be taken out.

Cause of it is a mechanical infection. It's the body's response to the tube, the

body wants to kick the thing out. So it's no bacterial infection, but a long

lasting mechanical one. Interesting, eh? My family doc was very reluctant

(understandable) concerning new antibiotics, but he hasn't got enough experience

with these type of things. So it's a good thing I can always see my nurse

practitioner (and than tell my family doctor, who is really willing to learn

from my case).

When I spoke to Carlo earlier this morning (Carlo is the n.p.) he told me they

treat me differently than the other -ectomy patients that have to deal with scar

tissue. It happens more often. I belong to the group where dilatations can give

the answer, but where indeed very many dilatations are needed. There are about

one to two hands full of people in my hospital that need about 40 or more and

I'ld belong to that group, if they didn't try something else for me now..

They decided to start other treatments on me (the cutting and perhaps stent)

since there is a huge difference between me and the other patients they have.

They have cancer, I had achalasia. the difference is that I went in to get out

with better swallowing. The cancer patients " never "   had issues with that and

therefore are less worried about their swallowing problems. I found it very good

the hospital recognised the problems the scar tissue causes in me, other than

the fysical problems. And though I just mentioned this hospital has one or two

hands full of patients like me, they do have many many -ectomy patients and my

specialist treated over 1000 already. Carlo told me they didn't start the

cutting way because they didn't see another way out, but simply as they don't

want me to have to go through this all any longer, regarding my history and

regarding my age. It's such a good feeling to be in such a caring place!!!

Hmmm, I think I'll have a walk through my hospital now...

Thank you so much for trying to find other options for me, !!!

Love,

Isabella

____________ _________ _________ __

From: ANGELA BAKER <kotacj@...>

achalasia@grou ps.com

Sent: Wednesday, December 17, 2008 2:48:18 AM

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

please read this too!!!

isabella- I'm sorry for the dissappoint. I'm not giving up on other

possiblities. I'm going to ask around and see if some of the docs I work with

have additional ideas. do they use much hyperbaric in europe. I've seen

gangrenous digits improve using hyperbaric. oxygen under pressure. usually

reserved for the bends after scuba diving accidents but now are finding

applications with tissue profusion and wound healing...angela