Re: Experience of Heller Myotomy, London

[Guest guest]

Clive,

You must go for laparoscopic hellers myotomy ..with the most experienced surgeon

...it's worth it...fast recovery-within 3 days..I m sure everone's going to

advise u for the same..

Mukesh from Mumbai ..

Experience of Heller Myotomy, London

I would love to hear from anyone who has had a Laparoscopic Heller

Myotomy in the UK, especially at Guy's & St. ' hospital under

Abrie Botha. I have suffered from Achalasia for 4 years and had 4

balloon dilatations of differing sizes, these have given me some

temporary relief but within a few months have worn off so I am now

considering surgery.

Is it worth it? Were there any nasty side effects? Did you suffer acid

reflux after the operation?

Thanks. Clive

[Guest guest]

Clive ,

Surgery is the best alternative.

I had my Lap heller Last month Oct, 30 2006 and i'm doing great. Best

of all was i was able to walk out of the hospital the day after i had

it done.

Since surgery i feel like a new person. So far no side effects or

acid reflux, I do take an anti acid as recommended by my surgeon at

bed time.

The other thing that i will need to have done every 2 to 3 years is a

an upper endoscopy to check if everything is ok.

Good Luck,

Manny on Long Island, NY

>

> Clive,

> You must go for laparoscopic hellers myotomy ..with the most

experienced surgeon ..it's worth it...fast recovery-within 3 days..I

m sure everone's going to advise u for the same..

>

> Mukesh from Mumbai ..

>

>

> Experience of Heller Myotomy, London

>

> I would love to hear from anyone who has had a Laparoscopic Heller

> Myotomy in the UK, especially at Guy's & St. ' hospital under

> Abrie Botha. I have suffered from Achalasia for 4 years and had 4

> balloon dilatations of differing sizes, these have given me some

> temporary relief but within a few months have worn off so I am now

> considering surgery.

>

> Is it worth it? Were there any nasty side effects? Did you suffer

acid

> reflux after the operation?

>

> Thanks. Clive

>

[Guest guest]

>

> I would love to hear from anyone who has had a Laparoscopic Heller

> Myotomy in the UK, especially at Guy's & St. ' hospital under

> Abrie Botha.

> Is it worth it? Were there any nasty side effects? Did you suffer

acid

> reflux after the operation?

Hi Clive,

If you search the group for Botha, you will come across previous

messages from people who have used him including, quite recently,

Kia whose operation was shown on City Hospital.

Good luck

--Sue

Nottingham

[Guest guest]

Clive,

Having just had the myotomy with partial wrap performed, I can't

give a long term view as far as reflux. I would certainly agree

with Manny that, from my limited experience thus far, surgery is the

right option and agree with Mukesh that it is preferable to have it

performed laproscopically; though as many have said in previous

posts open surgery performed by a well practiced open surgeon is

better than having it done lapro by an inexperienced lap surgeon.

As for Abrie Botha, as Sue said it is worth searching the group site

for more info on him – and indeed invaluable to read as many posts

as you can to get more info in general whether experiences, diet

sheets, medical studies etc. Certainly his name seems to crop up

quite a lot in connection with Lap Myotomies and in his interview on

City Hospital mentioned he does the op regularly (can't remember the

number he mentioned).

As for Guys & St. , Steve – another member of the group who

just had an Oesophagectomy - explained to me that, rationalisation

in the NHS has led to G & St. Ts becoming a regional centre for

these types of ops and so it would seem to be a good choice. On my

side I had mine done at St s Paddington (though for accuracy I

should say it was the Lindo Wing of the Hospital) and certainly my

experience both of the hospital and particularly the surgeon was

excellent.

Hope the above helps and good luck,

(London, UK)

> >

> > I would love to hear from anyone who has had a Laparoscopic

Heller

> > Myotomy in the UK, especially at Guy's & St. ' hospital

under

> > Abrie Botha.

>

> > Is it worth it? Were there any nasty side effects? Did you

suffer

> acid

> > reflux after the operation?

>

> Hi Clive,

>

> If you search the group for Botha, you will come across previous

> messages from people who have used him including, quite recently,

> Kia whose operation was shown on City Hospital.

>

> Good luck

>

> --Sue

> Nottingham

>

[Guest guest]

Clive, I had an open Heller's done at Radcliffe in Oxford. The surgery was done May 2005. IF you have any questions please feel free to ask me. If you would like me to call you I can also do that. My e-mail is mt4mar@...lawsonclive123 <lawsonclive123@...> wrote: I would love to hear from anyone who has had a Laparoscopic HellerMyotomy in the UK, especially at Guy's & St. ' hospital underAbrie Botha. I have suffered from Achalasia for 4 years and had 4balloon

dilatations of differing sizes, these have given me sometemporary relief but within a few months have worn off so I am nowconsidering surgery. Is it worth it? Were there any nasty side effects? Did you suffer acidreflux after the operation?Thanks. Clive<FONT face="comic sans ms" color=#ff0000 size=5> in Georgia

</FONT><IMG src=" "> __________________________________________________

[Guest guest]

, Mukesh, Manny, Sue

Thanks to all of you for responding so quickly. It's very reassuring

to hear your positive experiences of a myotomy.

My dilemma I suppose is that I have learnt to live with the condition

(and obviously have a milder form than some), so apart from having to

drink a lot of water with meals and coughing occasionally in the

night, it doesn't affect my life too much (I can eat most things and

am fit and healthy). However, I know from the x-rays done during my

last barium swallow that my oesophagus is already stretched and there

are a lot of food particles left behind, so I'm worried that if I

don't do anything I'm storing up a bigger problem in the long term.

If my symptoms were more severe I think maybe I would find the

decision of surgery easier to make...at the moment it's easier to

procrastinate than face someone with a sharp knife!

Thanks again. Clive

> > >

> > > I would love to hear from anyone who has had a Laparoscopic

> Heller

> > > Myotomy in the UK, especially at Guy's & St. ' hospital

> under

> > > Abrie Botha.

> >

> > > Is it worth it? Were there any nasty side effects? Did you

> suffer

> > acid

> > > reflux after the operation?

> >

> > Hi Clive,

> >

> > If you search the group for Botha, you will come across previous

> > messages from people who have used him including, quite recently,

> > Kia whose operation was shown on City Hospital.

> >

> > Good luck

> >

> > --Sue

> > Nottingham

> >

>

[Guest guest]

I would not wate till you are at the point of having sever trouble in eating and drinking. That is your only "E" and I feel you should get the surgery to minamize further damage by streching it out. I waited to long and now after having two surgeries I wish I would have looked into getting things taken care of sooner. in Georgia lawsonclive123 <lawsonclive123@...> wrote: , Mukesh, Manny, SueThanks to all of

you for responding so quickly. It's very reassuringto hear your positive experiences of a myotomy. My dilemma I suppose is that I have learnt to live with the condition(and obviously have a milder form than some), so apart from having todrink a lot of water with meals and coughing occasionally in thenight, it doesn't affect my life too much (I can eat most things andam fit and healthy). However, I know from the x-rays done during mylast barium swallow that my oesophagus is already stretched and thereare a lot of food particles left behind, so I'm worried that if Idon't do anything I'm storing up a bigger problem in the long term. If my symptoms were more severe I think maybe I would find thedecision of surgery easier to make...at the moment it's easier toprocrastinate than face someone with a sharp knife!Thanks again. Clive> > >> > > I would love to hear from anyone who has had a Laparoscopic > Heller> > > Myotomy in the UK, especially at Guy's & St. ' hospital > under> > > Abrie Botha. > > > > > Is it worth it? Were there any nasty side effects? Did you > suffer > > acid> > > reflux after the operation?> > > > Hi Clive,> > > > If you search the group for Botha, you will come across previous > > messages from people who have used him including, quite recently, > > Kia whose operation was shown on City Hospital.> > > > Good luck> > > > --Sue> > Nottingham>

>><FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

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[Guest guest]

> If my symptoms were more severe I think maybe I would find the

> decision of surgery easier to make...at the moment it's easier to

> procrastinate than face someone with a sharp knife!

I think if you are generally healthy enough to undergo surgery and are

being offered the option by our

cash-strapped-except-for-when-it-comes-to-management-consultants NHS

(anyone else read the Sunday Times today?) then take it! But I fully

understand your feelings about undergoing what might feel like

unnecessary surgery.

(My concern is that Dr/Mr Botha will not be around by the time Stephi

has reached adulthood in case she needs more surgery. I hope he is

training a select few to become the future experts.)

--

Sue

Nottingham

[Guest guest]

Clive,

There is no benefit in postponing surgery.

It can only get worse in coming years.

There is no sharp knife in laparoscopic surgery..you will not have much pain..

I think it is best to get it done at this stage

When you are well and there is no emergency ..just find the most experienced

surgeon in your area,who has done such laparoscopic surgery and wrap for

achalasia

And talk to him..it is not as much trouble as you are thinking now..

I am sure most from t is board will agree with my views...

Mukesh

Re: Experience of Heller Myotomy, London

, Mukesh, Manny, Sue

Thanks to all of you for responding so quickly. It's very reassuring

to hear your positive experiences of a myotomy.

My dilemma I suppose is that I have learnt to live with the condition

(and obviously have a milder form than some), so apart from having to

drink a lot of water with meals and coughing occasionally in the

night, it doesn't affect my life too much (I can eat most things and

am fit and healthy). However, I know from the x-rays done during my

last barium swallow that my oesophagus is already stretched and there

are a lot of food particles left behind, so I'm worried that if I

don't do anything I'm storing up a bigger problem in the long term.

If my symptoms were more severe I think maybe I would find the

decision of surgery easier to make...at the moment it's easier to

procrastinate than face someone with a sharp knife!

Thanks again. Clive

> > >

> > > I would love to hear from anyone who has had a Laparoscopic

> Heller

> > > Myotomy in the UK, especially at Guy's & St. ' hospital

> under

> > > Abrie Botha.

> >

> > > Is it worth it? Were there any nasty side effects? Did you

> suffer

> > acid

> > > reflux after the operation?

> >

> > Hi Clive,

> >

> > If you search the group for Botha, you will come across previous

> > messages from people who have used him including, quite recently,

> > Kia whose operation was shown on City Hospital.

> >

> > Good luck

> >

> > --Sue

> > Nottingham

> >

>

[Guest guest]

Clive - your symptoms sound a lot like mine, which I've had for

literally decades. Like you I went year after year being able to eat

virtually anything, just slowly and with lots of chewing and lots of

water, and - like you - just with the occasional coughing at night.

However, over the last 12 months the swallowing has gotten distinctly

harder - and now that I finally have a label for this whole weird

situation I can't wait for the heller to be able to experience the

novel feeling of food going straight in (and get away from this

feeling that I can't bend over without bringing something up, which I

am now constantly aware of)

Mal

> > > >

> > > > I would love to hear from anyone who has had a Laparoscopic

> > Heller

> > > > Myotomy in the UK, especially at Guy's & St. ' hospital

> > under

> > > > Abrie Botha.

> > >

> > > > Is it worth it? Were there any nasty side effects? Did you

> > suffer

> > > acid

> > > > reflux after the operation?

> > >

> > > Hi Clive,

> > >

> > > If you search the group for Botha, you will come across previous

> > > messages from people who have used him including, quite recently,

> > > Kia whose operation was shown on City Hospital.

> > >

> > > Good luck

> > >

> > > --Sue

> > > Nottingham

> > >

> >

>

[Guest guest]

>

> Clive,

> There is no benefit in postponing surgery.

> It can only get worse in coming years.

> There is no sharp knife in laparoscopic surgery..you will not have

much pain..

<

<snip>

> I am sure most from t is board will agree with my views...

I'm sorry Mukesh but I do take issue a little with what you are

saying. I am speaking from a different point of view, that of a

parent who has had to make decisions on behalf of a young child, but I

empathise with Clive's fear of going under the knife even whilst my

head can tell me the myotomy in the hands of an expert is the best

decision.

There are the usual risks of general anaesthetic. There *is* a sharp

knife- punctures have to be made in the abdomen. And there is the

risk of converting to open surgery if lap surgery does not work/there

is a problem. And the risk of mucosa perforation. All of these

should be understood by someone who is planning to have the surgery.

And they should be ocnfident to ask of their surgeon:

- what is YOUR rate of perforation?

- what is YOUR rate of conversion to open?

- what is YOUR record of success with patients?

- how long can you follow up?

- can I speak to a previous patient?

And - perhaps this is a UK only risk - they should be prepared to

write on their consent form that they only consent to certain

people/person operating on them, because otherwise they may have

consented to a trainee or someone who is not the expert performing the

operation. And if you are under anaesthetic, how else can you try to

ensure you get the right person for the job?

My daughter was 5yo and 9yo when she had her surgeries. Both lap

myotomies. Her recovery was swift from the first but she needed rest

and could take it as and when required as her op was during the school

holidays. With her second, her e was perforated and the time in

hospital alone was five days, followed by part-time school for a

couple of weeks followed by school holidays.

I think it's important for people to understand this is surgery, even

laparascopic, and they shouldn't expect to resume normal life 48 hours

after it!!!!

--

Sue

Mum to Stephi, 9.11

Nottingham, UK

[Guest guest]

Sue- If you dont mind my asking but why did Stephi have 2 lapro's

done? I always thought once they do a lapro they cant go back in the

same way.What were the reasons?

I hope she is continuing to do well!!!

Tonia

(Virginia)

> >

> > Clive,

> > There is no benefit in postponing surgery.

> > It can only get worse in coming years.

> > There is no sharp knife in laparoscopic surgery..you will not

have

> much pain..

> <

> <snip>

>

> > I am sure most from t is board will agree with my views...

>

> I'm sorry Mukesh but I do take issue a little with what you are

> saying. I am speaking from a different point of view, that of a

> parent who has had to make decisions on behalf of a young child,

but I

> empathise with Clive's fear of going under the knife even whilst my

> head can tell me the myotomy in the hands of an expert is the best

> decision.

>

> There are the usual risks of general anaesthetic. There *is* a

sharp

> knife- punctures have to be made in the abdomen. And there is the

> risk of converting to open surgery if lap surgery does not

work/there

> is a problem. And the risk of mucosa perforation. All of these

> should be understood by someone who is planning to have the

surgery.

>

> And they should be ocnfident to ask of their surgeon:

>

> - what is YOUR rate of perforation?

> - what is YOUR rate of conversion to open?

> - what is YOUR record of success with patients?

> - how long can you follow up?

> - can I speak to a previous patient?

>

> And - perhaps this is a UK only risk - they should be prepared to

> write on their consent form that they only consent to certain

> people/person operating on them, because otherwise they may have

> consented to a trainee or someone who is not the expert performing

the

> operation. And if you are under anaesthetic, how else can you try

to

> ensure you get the right person for the job?

>

> My daughter was 5yo and 9yo when she had her surgeries. Both lap

> myotomies. Her recovery was swift from the first but she needed

rest

> and could take it as and when required as her op was during the

school

> holidays. With her second, her e was perforated and the time in

> hospital alone was five days, followed by part-time school for a

> couple of weeks followed by school holidays.

>

> I think it's important for people to understand this is surgery,

even

> laparascopic, and they shouldn't expect to resume normal life 48

hours

> after it!!!!

>

> --

> Sue

> Mum to Stephi, 9.11

> Nottingham, UK

>

[Guest guest]

Sue,

Very wise words indeed. I have said before the huge admiration I

have for all the parents of small kids like you on this board and

your wise counsel and experience should be well heeded by those

thinking about surgery. You are absolutely right that no operation

should be entered into lightly and given my upbeat previous posts, I

feel I should add that in no way am I advocating rushing into

surgery, rushing the recovery period or returning to work quickly.

At the same time Mukesh also makes some very valid points. The

truth is fear of having surgery and any resultant delay could, and I

stress could, cause additional damage to the oesophagus rendering

the success of a myotomy less certain. Certainly as far as I am

concerned, the experience of Steve and others who have had to

undergo an oesophagectomy weighed heavily in my decision process.

And of course the advent of keyhole surgery has certainly meant that

surgery is a less extreme course of action than it was before.

Besides the inherent danger you mention of having an operation under

anaesthesia, there is certainly the added danger of having to

convert to open surgery/perforation etc. in the case of key hole

surgery but I guess conversely there is also – as was stressed to me

by the gastroenterologist I saw – a real danger in rupture and

having to have emergency surgery in the case of a dilation.

So I guess there's no easy answer. Certainly, and I know I'm

stating the obvious, each individual has to come to their own

conclusion and if going down the surgical route, then they should

feel certain they are doing the right thing. What I would say

though is thus far, touch wood, I feel I did make the right choice.

I just hope I don't have to eat my words!! .

Best wishes,

(London, UK)

p.s. As for obtaining a guarantee that the surgeon you think will

be operating on you is the one who will actually be operating, this

is apparently not just an issue over here. I hadn't thought of that

issue before my op and was actually alerted to it by one of our

friends in Boston. So I guess it is as much of a problem over there

as it is over here.

> >

> > Clive,

> > There is no benefit in postponing surgery.

> > It can only get worse in coming years.

> > There is no sharp knife in laparoscopic surgery..you will not

have

> much pain..

> <

> <snip>

>

> > I am sure most from t is board will agree with my views...

>

> I'm sorry Mukesh but I do take issue a little with what you are

> saying. I am speaking from a different point of view, that of a

> parent who has had to make decisions on behalf of a young child,

but I

> empathise with Clive's fear of going under the knife even whilst my

> head can tell me the myotomy in the hands of an expert is the best

> decision.

>

> There are the usual risks of general anaesthetic. There *is* a

sharp

> knife- punctures have to be made in the abdomen. And there is the

> risk of converting to open surgery if lap surgery does not

work/there

> is a problem. And the risk of mucosa perforation. All of these

> should be understood by someone who is planning to have the

surgery.

>

> And they should be ocnfident to ask of their surgeon:

>

> - what is YOUR rate of perforation?

> - what is YOUR rate of conversion to open?

> - what is YOUR record of success with patients?

> - how long can you follow up?

> - can I speak to a previous patient?

>

> And - perhaps this is a UK only risk - they should be prepared to

> write on their consent form that they only consent to certain

> people/person operating on them, because otherwise they may have

> consented to a trainee or someone who is not the expert performing

the

> operation. And if you are under anaesthetic, how else can you try

to

> ensure you get the right person for the job?

>

> My daughter was 5yo and 9yo when she had her surgeries. Both lap

> myotomies. Her recovery was swift from the first but she needed

rest

> and could take it as and when required as her op was during the

school

> holidays. With her second, her e was perforated and the time in

> hospital alone was five days, followed by part-time school for a

> couple of weeks followed by school holidays.

>

> I think it's important for people to understand this is surgery,

even

> laparascopic, and they shouldn't expect to resume normal life 48

hours

> after it!!!!

>

> --

> Sue

> Mum to Stephi, 9.11

> Nottingham, UK

>

[Guest guest]

Hi all, I don't mean to start trouble, but there seems to be a lot of people pushing surgery as the only treatment option for 'A'. 'It is quite natural for anyone to worry about the surgery but then what's an alternative ?' Dilatation is still a very real alternative. In my case I did choose surgery, but I know others have chosen dilatation as the first/only course of treatment, with very good results. I certainly agree that 'doing nothing is not an option' (thanks !), but surgery is not the only option. I did as much research as I could, and was really straddling the fence on which treatment to choose. I personally think everyone should weigh the options carefully and research thoroughly before deciding. By the way, although I have had, and am currently having, some problems, I am very happy with my choice for

surgery and my choice of surgeons. I just believe people should know that there are other alternatives. mike in WI

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

> Sue- If you dont mind my asking but why did Stephi have 2 lapro's

> done? I always thought once they do a lapro they cant go back in the

> same way.What were the reasons?

The success of the first only lasted about a month before the dreaded

words 'Mum it hurts when I swallow' re-appeared :-(

It took us a year of investigations - 2 x endoscopies with different

surgeons to hear that all was fine and we were worrying unnecessarily.

She was put on domepridone which was as useful as a chocolate teapot

so I stopped giving it to her after about a month. I wasn't happy but

we seemed to have reached the end of the road as far as our medical

team were concerned.

She lived with it for about another six months, I think, before I

decided I wasn't prepared to allow her to continue to suffer and went

back to the hospital and we started the process again.

They didn't go back through the same scars and the new myotomy is in a

different place. Looking down her oesophagus from the top, iyswim,

she has one at 12 o'clock (spineside) and one at 4 o'clock.

> I hope she is continuing to do well!!!

She is doing much, much better this time although the operation wasn't

initially as successful as her muscosa was perforated.

She burped/belched really loudly the other day and instead of going

all tense and waiting to hear a splash as regurgitated food hit the

water in the toilet bowl, I called out 'You disgusting pig!' and then

smiled at how our lives have moved on to the point where we can joke

about post-food noises :-)

> Tonia

> (Virginia)

Where in Virginia are you Tonia? We were in Richmond for a couple of

months when Stephi was 8-10mo. Loved it.

--

Sue

[Guest guest]

We are in Roanoke.A few hours from Richmond Va.I know exactly what

you mean by the post food noises lol :]

Its a good thing you pushed on with your instinct and got her

fixed.Its sad that us parents have to be the ones to make sure our

children are fixed when half the DRS DONT KNOW ANY BETTER.

> > Sue- If you dont mind my asking but why did Stephi have 2

lapro's

> > done? I always thought once they do a lapro they cant go back in

the

> > same way.What were the reasons?

>

> The success of the first only lasted about a month before the

dreaded

> words 'Mum it hurts when I swallow' re-appeared :-(

>

> It took us a year of investigations - 2 x endoscopies with

different

> surgeons to hear that all was fine and we were worrying

unnecessarily.

> She was put on domepridone which was as useful as a chocolate

teapot

> so I stopped giving it to her after about a month. I wasn't happy

but

> we seemed to have reached the end of the road as far as our medical

> team were concerned.

>

> She lived with it for about another six months, I think, before I

> decided I wasn't prepared to allow her to continue to suffer and

went

> back to the hospital and we started the process again.

>

> They didn't go back through the same scars and the new myotomy is

in a

> different place. Looking down her oesophagus from the top, iyswim,

> she has one at 12 o'clock (spineside) and one at 4 o'clock.

>

> > I hope she is continuing to do well!!!

>

> She is doing much, much better this time although the operation

wasn't

> initially as successful as her muscosa was perforated.

>

> She burped/belched really loudly the other day and instead of going

> all tense and waiting to hear a splash as regurgitated food hit the

> water in the toilet bowl, I called out 'You disgusting pig!' and

then

> smiled at how our lives have moved on to the point where we can

joke

> about post-food noises :-)

>

> > Tonia

> > (Virginia)

>

> Where in Virginia are you Tonia? We were in Richmond for a couple

of

> months when Stephi was 8-10mo. Loved it.

>

> --

> Sue

>

[Guest guest]

Clive,

Hi there. I am being treated at Guy's & St ' Hospital. The team there are very experienced. I have just had my oesophagus removed at St ' and their mortality rates were 0.9% for the last year for that procedure. That is compared to 5%-15% quoted at other hospitals. I believe Guy's & St ' have the lowest levels in the world. I mention this only as an indication to their expertise in managing the oesophagus. I have absoultely no criticism of any aspect of my management. However, do remember that the surgeon is the key but you also need an experienced team that know what to do when the surgeon has long gone and nurses who know when they need to call a doctor etc etc. I think St ' can offer a very experienced team. When I was in out patients yesterday there was another person with Achalasia next to

me, so I guss they see it quite frequently.

Happy to talk further about St ' if you wish.

STEVE

Re: Experience of Heller Myotomy, London

>> I would love to hear from anyone who has had a Laparoscopic Heller> Myotomy in the UK, especially at Guy's & St. ' hospital under> Abrie Botha. > Is it worth it? Were there any nasty side effects? Did you suffer acid> reflux after the operation?Hi Clive,If you search the group for Botha, you will come across previous messages from people who have used him including, quite recently, Kia whose operation was shown on City Hospital.Good luck--SueNottingham

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