Re: Re: Greetings from Australia - a newbie with Achalasia

[Guest guest]

If memory serves me (as it does less and less these days), Adelaide was (and

perhaps still is) the " achalasia capital " of Australia, where a disproportionate

number of people have it, or get operated for it, and there was one surgeon in

particular whose name popped up a lot. This recollection goes back around 5

years ago.  You may want to utilize the search function on this site and put in

some key words and phrases from what I wrote above. There was also a woman who

probably would be the Guiness World Record holder for # of dilatiations, being

somewhere up around the 40's. I wonder how she she is still doing.  As many

have said here, we try to use only the best surgeons for a HM or an ectomy. 

Hopefully your surgeon has performed the HM in excess of 50-100 times. If not,

you might want to have a consultation with someone who has.

 

From: Barb C. <bagwoman52@...>

achalasia

Sent: Monday, May 30, 2011 3:02 PM

Subject: Re: Greetings from Australia - a newbie with Achalasia

 

Sad to say I am experiencing some of the same history as you. I was better

before surgery than after. My symptoms increased and my discomfort was

unbearable after surgery. I finally changed specialist and tests were completed

for my stomach and small intestine for complications from the surgery. I was

diagnosed with rapid stomach emptying or nerve damage to stomach plus other rare

complications. My original surgeon was confused, I finally told her that it was

time to " think outside the box " on what was making me miserable. She was so

adamant that her surgery was " fine. " I changed doctors for a " fresh " outlook and

found a doctor interested in listening and testing to see what was making my

life miserable. I finally found some relief. Good luck to you, do not give up,

there is a doctor who will help you. Just keep looking and find the " best of the

best. " That is the clue to improving your daily life with Achalasia.

>

> Hi Everyone, I'm new to this support group. I'm in Australia and was recently

diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8 weeks

ago) and have recovered well from the surgery, but unfortunately seem to have

been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> Thanks Ren :-)

>

[Guest guest]

Hi ,

 

I remember you (impossible to forget a world record holder).  By now, with 80

dilatations and counting, you should have the room where you have the procedure

done named after you!

 

With 40 d's done about 5 years ago, and 40 since then, doing some " advanced "

math, it comes down to, on average, a dilation being done every month and a

half.

 

Kidding aside now, what is it about your " physiology " that you and doctors have

concluded that surgery would be far worse for you? One of these days, your

record holding esophagus may not be able to endure one more dilatation.

 

In any event, its great to hear from you and I hope that things do improve for

you.

 

From: V <redrecks@...>

Subject: Re: Greetings from Australia - a newbie with Achalasia

achalasia

Date: Monday, August 15, 2011, 12:05 PM

 

As I was Googling more on Achalasia, I came across this entry, mentioning some

woman about 5 years ago that would be the World Record holder for the number of

diltations. Being somewherew around 40.

Well I'm that woman! It's from Melbourne in Australia who hasn't posted

anything on here in many years as I had many things going on, including just

trying to survive this darn A.

I am considering another lot of Botox. The 1st was great and lasted about 3

months. The second was OK, but lasted only a few weeks. The 3rd was such a waste

of money. Nothing happened. So it's ONLY a 'consider' at the moment.

I see Devonshire in a few weeks who is up to date with treatments.

I may have a biodegradable shunt put in to make everything go down easier into

my stomach that is.

As for dilitation I am now at 80.

They still help me tremendously, but I am so sick of being in hospital so much

and having to leave Dylan, which he loves, home to look after himself.

He's almost 16 now and about to start VCAL/VCAT, which is Tafe (College) and

high school combined.

He wants to be a cook. And he is great at cooking. It's nice that I now have

someone that will help me cook.

Although at this moment I am only on fluids.

I let somebody else do my dilitation and we don't know what he did but he caused

11 weeks of constant, irretractable pain. Living off of Morphine injections.

Dad's still at me to sue the Surgeon. But it's been 10 years now and there is a

Statuate of Limitations, and that's passed.

But I will tell dad if HE wants to sue, then HE can, because I just don't have

the mental strength anymore for it.

I already have one Law Suit going on, which I have won, it's now all the

jiggling around.

There is no surgery on the cards for me, as eveyone is in agreement, that at the

moment, things are far from perfect, but having any surgery will only makes

things much worse. SO for no I will stick with my dilitations.

Well that's it from me.

I hope I haven't bored you or anything. LOL

Since finding this blog, I thought I will return a message telling you where I

am at.

Melbourne

Australia

> >

> > Hi Everyone, I'm new to this support group. I'm in Australia and was

recently diagnosed with Achalasia. I've recently undergone the Heller Myotomy (8

weeks ago) and have recovered well from the surgery, but unfortunately seem to

have been left with symptoms that are far more unbearable than they were before

surgery. I mean, sure I couldn't swallow food/drink at all before surgery and

had lost considerable weight, so following the surgery, that's changed and I can

now swallow food. However, I can only eat about the amount of my fist in size,

everything has to be sloppy, the reflux is unbearable and meds aren't helping

that, I can't bend, lie down, let alone run and I'm a marathon runner so this is

highly disappointing. The burping is also incredible, sometimes I can just sit

with my mouth open and the noise is incredible.

> > In Oz, this is apparently a pretty rare condition to have, and mine is

atypical in that the mid section of my e functioned normally prior to surgery,

however this too has now started to spasm. My husband and I are on a reflux,

japanese diet to minimise the affects of the reflux.

> > Basically I want to know if there's other people out there that are

experiencing this and is it normal? Does it get any better or is it about

adapting to my new " life " now.

> > Thanks Ren :-)

> >

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