Newbie

October 26, 2006

,

Welcome to this board..

Plz read my post today..I just posted it..

My son, Bimal 's surgery is done today..

Tomorrow ,there are other 2 surgeries from this board..

I believe that you should decide for surgery

Sooner ...there is nothing to worry about Anaesthesia..

Mukesh

Newbie

I'm new to the group--recently diagnosed w/achalasia, but I've had the

problem for a couple of years, it just kept getting worse (my dilation

is supposed to be about 8 cm). My laproscopic myotomy w/fundoplication

is scheduled for 11/9. I'm very apprehensive--I think I'm more afraid

of the anesthesia than anything. My surgeon says surgery will last

approx. 3 hours. Also concerned about recovery time--doctor says 2

weeks off work. Hoping it will be quicker.

Would like to hear from others who have had the surgery.

Thanks,

October 26, 2006

, welcome to our group. The surgery is really not that bad and you will be glad that you have had it done once all the healing in over with. As for the recovery time it all depends on how the surgery is done and how your age and present health. Who is doing your surgery and where? if you have any specific questions please feel free to ask. in Georgia co-founder www.achalasia.usllthrone <llthrone@...> wrote: I'm new to the group--recently diagnosed w/achalasia, but I've had the problem for a couple of years, it just kept getting worse (my dilation is supposed to be about 8 cm). My laproscopic myotomy w/fundoplication is scheduled for 11/9. I'm very apprehensive--I think I'm more afraid of the anesthesia than anything. My surgeon says surgery will last approx. 3 hours. Also concerned about recovery time--doctor says 2 weeks off work. Hoping it will be quicker.Would like to hear from others who have had the surgery.Thanks,<FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

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October 26, 2006

Hi ,

I had my laproscopic myotomy w/fundoplication 2yrs ago at Stanford

Medical Center in CA and it was life changing for me. I suffered for

8yrs with Achalasia and was to the point where liquids would not go

down anymore and was on a nasal feeling tube. Prior to my surgery I

had one dilation that lasted a month. I felt it was pointless to

continue to treat this disease with dilations and had surgery

scheduled. I was also nervous and scared of the unknown. But, when I

thought about my quality of life at that point, I knew I had to go for

it. Take your time with recovery, I was off work for 6 weeks. Eating

again during recovery is a slow process, follow your doctors advice and

you will come through fine.

Best wishes for your surgery,

>

> I'm new to the group--recently diagnosed w/achalasia, but I've had

the

> problem for a couple of years, it just kept getting worse (my

dilation

> is supposed to be about 8 cm). My laproscopic myotomy

w/fundoplication

> is scheduled for 11/9. I'm very apprehensive--I think I'm more afraid

> of the anesthesia than anything. My surgeon says surgery will last

> approx. 3 hours. Also concerned about recovery time--doctor says 2

> weeks off work. Hoping it will be quicker.

>

> Would like to hear from others who have had the surgery.

>

> Thanks,

>

October 26, 2006

Hi, , I, too, was worried about my surgery, how would it all go, how much pain, how much down time, etc. I had a tremendous amount of encouragement from this group and felt better and better the more I knew about Achalasia. I contacted NORD, Nat. Orga. Rare Diseases and got information from them, I contacted several hospitals and doctors and read a lot of on-line material about this disease. People here told me how their experiences went and it was incredibly helpful. I was so nervous the night before I went in for my VAT Heller's Myotomy (Dr. Fuller, Cedars-Sinai, Los Angeles/Beverly Hills Cal.) that I wished I could just climb into this group site and sit on everybody's lap.....so I emailed for days before I went in and I really felt as if people here

were holding my hand and aiding me psychologically. I am still very thankful to everyone here. I went to Cedars before dawn, checked in and got into the bed in the pre-surgery room. They put compression socks on both of my legs( I've had a stroke a long time ago and also pulmonary embolisms, so the socks kept my legs' blood vessels happy), and a nurse came in and marked my left side with a ballpoint pen, writing YES and circling it. I thought that was kind of funny and kind of scary, too. I mean, does my surgeon really need it? But it was fine. (Kinda wished I'd had a big red felt tip pen so I could have written NO and circled it on my right side.) Then I was wheeled into the operating room, saw my handsome doctor (he's married, drats!), got

my sleepy time drip and woke up in recovery, on and off. Then I woke up in my room, with drains and lines of this and that all over me. (I must have looked so very cute, not!) I had some pain but I also got morphine. Wow! That stuff works! I stayed two nights and went home to recuperate. I was sore, had trouble finding a great position to sleep in, and when my dear sister came down from Nevada, by surprise, and took care of me, even making vast quantities of mac and cheese (I really wanted that stuff! weird! I usually don't eat it!) and some soft, frosted cupcakes, too (woo-hoo! good!), I could see that I was going to get better, swallow a lot better and even lose a bit of weight. People here told me to take some lip balm

(excellent idea) and a few other things, all of which I paid attention to. Mostly, I just was glad I'd worn simple clothes, easy-to-put on when I'd gone to Cedars so that when I got dressed to leave, everything was easy to put on again. Good idea. Esp. the slip-on shoes. All shall be well. Pack your frig. with ice cream or sorbet or some other much-loved item before you go to the hospital. I had several boxes of popsicles in the freezer before I went and I ate them up when I got back. I also laid in ginger ale, diet orange soda, tea bags and applesauce and jello, the kind that is in little containers, already made. Again, all shall be well. Keep your toes

and your nose toasty! I'll pay attention to your posts, I promise, and I'll be thinking good thoughts for you. Deborah

October 27, 2006

Dear , Can you say specifically what it is about the anaesthestic that frightens you? You might be imagining something that is not true. I am presuming that you have never had it before? I had been lucky enough to live for 55 years without ever having to have surgery before my lap.heller at the end of May this year. I had this stupid notion of a mask going over your face, which was simply not true. Anaesthetic for me was an injection into the canula in my hand and one second later being told "It's over now Ann". Do you know that anaesthesiatists (sp?) have an exceedingly long training period? I found that out just before my op and it made me feel so much more confident about things. And before the op I was given anti-nausea injections in my belly and they REALLY worked. I didn't have any nausea at all. If it is for any other reasons that you are afraid, please share them with me and the Group. We might be able to reassure you. Love from Ann in England XXllthrone <llthrone@...> wrote: I'm new to the group--recently diagnosed w/achalasia, but I've had the problem for a couple of years, it just kept getting worse (my dilation is supposed to be about 8 cm). My laproscopic myotomy w/fundoplication is scheduled for 11/9. I'm very apprehensive--I think I'm more afraid of the anesthesia than anything. My surgeon says surgery will last approx. 3 hours. Also concerned about recovery time--doctor says 2 weeks off work. Hoping it will be quicker.Would like to hear from others who have had the surgery.Thanks, Send instant messages to your online friends http://uk.messenger.

December 20, 2006

JO, where do you live that you have to be on a waiting list?

Have you seen your barium swallow pictures? That should convince

you that it's not " all in your head, " even though stress can make

it worse.

Pneumatic dilation may be helpful, especially if you're at least

40-50 years old. Otherwise surgery is really the best long-term

fix, although I don't think anyone's initial reaction to that

news is going to be " Yippee! "

Here are a " before " and " after " picture to show how the surgery

can help:

http://www.clevelandclinic.org/thoracic/phys/swallow/heller2.htm

in Lancaster, PA

Newbie

> I've only just found out about this forum. I was diagnosed

> with

> Achalasia about 6 months ago after endoscopies, and manometry.

> I'm

> now on the waiting list for the Heller's myotomy but am really

> reluctant to have it done.

>

> I've tried Reiki as I think my symptoms are much worse if I'm

> anxious

> or stressed and wonder if I've now convinced myself that I can

> not

> eat. I've just started having acupuncture to see if that may

> help.

>

> I haven't eaten bread or anything very solid for 10 months and

> have

> lost quite a bit of weight. I'm not sure what to do or try

> next. Any

> ideas would be great.

>

> JO

>

December 20, 2006

Jo,

Hi there and welcome. You would usually get a lot of replies from members of this board but as it is the holiday season many people are away from their PC. There will be lots of people that can tell you how they managed and some people have posted their stories on the main site.

I have had Achalasia for 20 years and I have had the Myotomy. For me the Myotomy was a complete revelation. Immediately prior to the Myotomy I was only on liquid and I only mamanged to keep approximately two thirds of that down. The Myotomy gave me a completely normal diet. Surgery is of course a major decision and you will need to make a very personal decision. I think for the most of us the Myotomy has worked well. For some they need further surgery after a few years and for a smaller few the Myotomy has not worked. But, as I say, it seems to have done a lot of us an awful lot of good.

In terms of stress. I have no doubt that our swallowing is worse when we are stressed and I think any relaxation that you can do will help. In any case its just good to do some relaxation. Many of us struggle with bread. Toasting it can help but when my Achalasia was really playing up I would eliminate bread entirely from my diet. I tend to move onto soups. However, soups are not that high in protein (in general) so I tend to bake a piece of fish and then stick it in a blender with either a bought or home made soup....oh and add cream. The beauty of home made is you can ensure there is enough protein in the soup. After all, a great way to loose weight is to go onto soup so this suggets it does need beefing up a little. Most importantly of course is to make sure you are getting enough fluids through try and keep an eye on the

volume of fluid but this should not become an obsession otherwsie it will only add to the stress. One of the characteristics of Achalasia is that no two days are the same. You may have a good day tomorrow and then two bad days etc. Keep in touch with your gastroenterologist and do ask for professional help if you need it.

Oh, just remembered a small number of Achalasians have less trouble with solids than they do with liquids (many have problems with both of course).

I hope these personal experiences help but we are of course all different. Try not to worry too much. The disease is a serious irritation but it is not life threatening if treated well.

Take care

STEVE

Newbie

I've only just found out about this forum. I was diagnosed with Achalasia about 6 months ago after endoscopies, and manometry. I'm now on the waiting list for the Heller's myotomy but am really reluctant to have it done.I've tried Reiki as I think my symptoms are much worse if I'm anxious or stressed and wonder if I've now convinced myself that I can not eat. I've just started having acupuncture to see if that may help.I haven't eaten bread or anything very solid for 10 months and have lost quite a bit of weight. I'm not sure what to do or try next. Any ideas would be great.JO

Try the all-new . "The New Version is radically easier to use" – The Wall Street Journal

December 20, 2006

Hi Jo,

I also have recently been diagnosed. It took two years to get the

correct diagnoses (though that was slowed down because I had a baby

and couldn't have testing done while pregnant). Through all of this

I have lost 55 pounds, the only silver lining I can come up with is

I didn't have to worry about losing the baby weight In Feb or

March I am planning on having the Heller's Myotomy. I am pretty

nervous too, but it seems the best option, and it has really helped

to hear people on this forum that have done really well with it.

Hopefully we will be so lucky too.

I definately noticed a connection between stress and eating. It is

not something you have made happen. This group has been great for

normalizing my experiences. Stress and anxiety really does effect

how well I eat. Heat usually helps me. If food is really getting

stuck then a hot shower helps, or even blowing the hair dryer on my

stomach for a little while will help relax (though my husband gives

me strange looks with the hair dryer). Distraction also helps me

eat better because I don't become as anxious when eating is

difficult. So I read a book or play cards or watch tv.

Unfortunately family dinners have become a thing of the past, but I

know that this will pass and life will hopefully get back to

normal. That is what I try to focus on with the surgery. All the

little things that I have stopped doing because of achalasia.

Eating in resturants, sitting down while eating, eating meat again,

being able to eat before 11am, not having my family all watch every

bite I take to see if I am ok. I know that the surgery is my best

chance to change this situation. So while I know that the outcomes

differ from person to person, and I may have to have additional

treatment, I am trying to focus on the positives. Which is easy to

say now as I haven't tried eating yet today and my mood is pretty

good, but I am hopeful.

I agree that soups are the best thing, sometimes I am ok with

pasta. Breads and meats are difficult, and to my dismay donuts

don't work at all. I know protien shakes are a good option, but I

think they are so gross that psychologically it is not great for

me. I eat a lot of ice cream, really alot. I have a cookbook that

has some good recipes - The Dysphagia Cookbook by Elaine Achilles.

The www.achalasia.us website has some good cookbooks and recipes

recommendations in the resources section. I snack all afternoon and

evening, rather than trying to " eat a meal " .

I don't have many recommendations on the treatment side, our more

experienced members will hopefully have more ideas for you after the

holidays. I have become pretty creative with maintance, since I had

to work really hard to gain weight while I was pregnant, so feel

free to contact me and we can brainstorm ideas for while you are on

the wait list.

Take care,

in Colorado

303-918-9933

>

> I've only just found out about this forum. I was diagnosed with

> Achalasia about 6 months ago after endoscopies, and manometry.

I'm

> now on the waiting list for the Heller's myotomy but am really

> reluctant to have it done.

>

> I've tried Reiki as I think my symptoms are much worse if I'm

anxious

> or stressed and wonder if I've now convinced myself that I can not

> eat. I've just started having acupuncture to see if that may help.

>

> I haven't eaten bread or anything very solid for 10 months and

have

> lost quite a bit of weight. I'm not sure what to do or try next.

Any

> ideas would be great.

>

> JO

>

December 20, 2006

Jo, I am sorry that you have this disease but I am very glad that you have found us. Where are you from and how old are you? Take some time a look over the site as well as some of the old posts. There is a lot of information in here to help you. As for surgery I feel, as well as many others in the group here, that it is the best option for long term management of this disease. I would stay away from the botox at all cost. If you have any other questions please fell free to ask and if you want to talk over the phone I am willing to do so also. My e-mail is mt4mar@... and my home phone number is 478-971-7474. That also is open to any other person in the group too. I hope you get some relief soon and welcome to our family. in Georgia co-founder of www.achalasia.usstar_jof <jefield@...> wrote: I've only just found out about this forum. I was diagnosed with Achalasia about 6 months ago after endoscopies, and manometry. I'm now on the waiting list for the Heller's myotomy but am really reluctant to have it done.I've tried Reiki as I think my symptoms are much worse if I'm anxious or stressed and wonder if I've now convinced myself that I can not eat. I've just started having acupuncture to see if

that may help.I haven't eaten bread or anything very solid for 10 months and have lost quite a bit of weight. I'm not sure what to do or try next. Any ideas would be great.JO<FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" "> __________________________________________________

December 21, 2006

Hi Jo,

Not a great deal I can add to what has already been said. Glad to

hear you seem to be reconciled to having surgery. As has been said

it has to be a personal decision but having had the OP about a month

ago, I can say that it was the best decision – touch/knock on wood –

I made: although I currently am still following a post-op mushy

(less sloppy/liquidy than it initially was) diet, food/water is

going down without any problem whatsover. I also had grave

reservations about it before hand – to treat what is a neurological

problem by physically altering the body to me seemed wrong – but as

I said I believe it was unquestionably the right thing to do not

least to try and ensure no further damage (ie. stretching) to my

oesophagus.

I would though say you should try and ensure your surgeon is

experienced in the procedure. Studies have shown that the success

rate improves with the number of myotomies done – and certainly

recent postings here seem to have confirmed that. Also I would

suggest it is preferable to have it performed laparoscopically (ie.

by key hole surgery) as compared to open surgery the healing times

and discomfort are much reduced. That said an experienced open

surgeon is better than an inexperienced lap surgeon and of course

there is always a risk – though a small one - that lap surgery has

to be converted into an open one anyway.

As for stress over eating, another thing you might also want to

think about trying is to have a glass of wine or a beer before your

meal to help you relax. Also, although I always found bubbles

caused me more trouble when eating and I used to stick to tap water,

others have said that drinking fizzy drinks whilst eating helps the

food go down. So maybe you should give up the cheap booze and just

stick to Champagne!

Oh and one other thing you might want to try is taking a Vitamin B50

complex supplement a day (in the UK from say Holland and Barrett).

When first I discovered I had Achalasia, despite being someone

completely adverse to the idea of Vitamin supplements, I found a

website that recommended B50 and so started taking them. I won't

expand too much on this here but I did find that in the short term

there was a huge improvement in my ability to swallow food – it

almost became normal. It might possibly have been self-suggestion

but changes to other minor symptoms (a reduction in hair loss,

renewed and greater incidence of Achalasia caused oesophageal

spasm/non-cardiac chest pains etc.) make me believe it definitely

wasn't. Before though you think you have found the Holy Grail I

would say that it wasn't a long term solution. The benefits to

swallowing seemed to disappear after a few months (though also the

renewed incidence of spasms died out too) and also there anyway

appears to be mixed views on Vitamin B: some swear by it and others

say it has no effect at all.

Anyway hope the above helps and best wishes for a Happy Christmas.

(London, UK)

>

> Thank you all so much for your support - its great to have

received so

> many messages so quickly - I certainly don't feel alone in

handling

> this.

>

> For those of you who asked, I'm 31 and I live in the Midlands in

the

> UK. From what I can gather, many of you are in the US.

>

> I does sound like the surgery is my best option. I went out for a

> meal last night for Christmas and ordered soup - I only managed a

few

> mouthfuls before it got stuck and I had to disappear to the loo.

I

> know that I was anxious before the meal and concerned about how I

was

> going to manage to eat anything. My friends all understand

although

> my boyfriend I think finds it frustrating cos we don't go out for

> meals or go out drinking like we used to.

>

> I've been on the waiting list since November and have been told it

> will be February or March before I reach the start of the waiting

list.

>

> Christmas day will be tough, we've got family coming to us and I'm

a

> bit anxious about that but know that I just need to stay positive

and

> try not to panic.

>

> Thank you all for your messages, it really helps to know there are

> people out there who understand.

>

December 21, 2006

Thanks , that's a real help. I find bubbles do aggrevate

things so i'll stick with the wine over christmas! I'll try having

a glass before eating to see if that helps to relax things a bit. I

find beer really hard to swallow these days so wine's about all I

can get down.

I don't know much about my surgeon so I'll try and find out from him

how many he's done. He sounded very confident that is was the right

thing to do and seemed very confident in it improving. His name is

Dr Menon so if anyone has any experiences of him please let me know.

I agree that the thought of cutting the body up does seem the wrong

thing to do to treat this disease but, like you, maybe i'm getting

used to the idea that its the only option available now.

I have been taking Vit B12 because I saw that recommended on a

website but maybe I'll try the B50 as you saw an improvement, if

only temporarily so it must be worth a try.

Thank you again for your support and suggestions.

Wishing you a really happy christmas.

Jo (Northamptonshire)

> >

> > Thank you all so much for your support - its great to have

> received so

> > many messages so quickly - I certainly don't feel alone in

> handling

> > this.

> >

> > For those of you who asked, I'm 31 and I live in the Midlands in

> the

> > UK. From what I can gather, many of you are in the US.

> >

> > I does sound like the surgery is my best option. I went out for

a

> > meal last night for Christmas and ordered soup - I only managed

a

> few

> > mouthfuls before it got stuck and I had to disappear to the

loo.

> I

> > know that I was anxious before the meal and concerned about how

I

> was

> > going to manage to eat anything. My friends all understand

> although

> > my boyfriend I think finds it frustrating cos we don't go out

for

> > meals or go out drinking like we used to.

> >

> > I've been on the waiting list since November and have been told

it

> > will be February or March before I reach the start of the

waiting

> list.

> >

> > Christmas day will be tough, we've got family coming to us and

I'm

> a

> > bit anxious about that but know that I just need to stay

positive

> and

> > try not to panic.

> >

> > Thank you all for your messages, it really helps to know there

are

> > people out there who understand.

> >

>

December 21, 2006

HiI am glad that you are not feeling alone. My daughter has this condition - I can't understand why you are waiting so long! We live in Southport UK and although it took a long time to get a diagnosis for Hannah - who is now 27 and pregnant with her second child - she had her op within 9 weeks of being diagnosed with an apology that she had to wait so long. My husband works in Wombourne Wolverhampton are you near there?although I have not had achalasia I know the stress Hannah went through trying to go out for meals - first thought is where is the loo? Can't sit there - can't get out! She eventually stopped going out. Now she goes out and the only requirement is to drink a lot during her meal. So although I do not know at first hand I know as a mum - and it's painful whatever age your child is. You will obviously know that stress aggravates it too. I know there are surgeons in London too - can you ask to be

referred as you are waiting? My daughter had her op 31/2 years ago and has since got married had one baby and is due another in 14 weeks. I am not saying she has not had to regurgitate but it has usually been due to be being 'piggy' and not chewing properly!But her normal weight is now between 9 1/2 and 10 stone as opposed to 5stone 12lbs.So I would urge you to get referred.Hannah's consultant is Dr Butcher (appropriate name!) and her surgeon is Mr Zeiderman - both of whom can be found on the internet under Southport and Ormskirk General Hospital.Hope this is of some help - star_jof <jefield@...> wrote: Thank you all so much for your support - its great to have received so many messages so quickly - I certainly don't feel alone in handling this. For those of you who asked, I'm 31 and I live in the Midlands in the UK. From what I can gather, many of you are in the US. I does sound like the surgery is my best option. I went out for a meal last night for Christmas and ordered soup - I only managed a few mouthfuls before it got stuck and I had to disappear to the loo. I know that I was anxious before the meal and concerned about how I was going to manage to eat anything. My friends all understand although my boyfriend I think finds it frustrating cos we don't go out for meals or go out drinking like we used to. I've been on the waiting list since November and have been told it

will be February or March before I reach the start of the waiting list. Christmas day will be tough, we've got family coming to us and I'm a bit anxious about that but know that I just need to stay positive and try not to panic. Thank you all for your messages, it really helps to know there are people out there who understand. __________________________________________________

December 21, 2006

, Thank you. This is really helpful. I'm wondering how I go about

getting referred to another surgeon. I'll try seeing my GP again and see

what can be done to hurry things up.

Wolverhampton isn't too far from us - we're in Northamptonshire so its not

too far away.

Its great to hear that your daughter has had children since having this

condition because that has been 1 of my concerns since finding out about it

- I want to try and have children in the next 18 months if I can and feel

concerned that my diet is too poor at the moment.

>From: Dixon <wendixon@...>

>Reply-achalasia

>achalasia

>Subject: Re: Newbie

>Date: Thu, 21 Dec 2006 03:18:46 -0800 (PST)

>

>Hi

>I am glad that you are not feeling alone. My daughter has this condition -

>I can't understand why you are waiting so long! We live in Southport UK

>and although it took a long time to get a diagnosis for Hannah - who is now

>27 and pregnant with her second child - she had her op within 9 weeks of

>being diagnosed with an apology that she had to wait so long. My husband

>works in Wombourne Wolverhampton are you near there?

>although I have not had achalasia I know the stress Hannah went through

>trying to go out for meals - first thought is where is the loo? Can't sit

>there - can't get out! She eventually stopped going out. Now she goes out

>and the only requirement is to drink a lot during her meal.

>So although I do not know at first hand I know as a mum - and it's painful

>whatever age your child is. You will obviously know that stress aggravates

>it too. I know there are surgeons in London too - can you ask to be

>referred as you are waiting?

>My daughter had her op 31/2 years ago and has since got married had one

>baby and is due another in 14 weeks. I am not saying she has not had to

>regurgitate but it has usually been due to be being 'piggy' and not chewing

>properly!

>But her normal weight is now between 9 1/2 and 10 stone as opposed to

>5stone 12lbs.

>So I would urge you to get referred.

>Hannah's consultant is Dr Butcher (appropriate name!) and her surgeon is Mr

>Zeiderman - both of whom can be found on the internet under Southport and

>Ormskirk General Hospital.

>Hope this is of some help -

>

>star_jof <jefield@...> wrote:

>Thank you all so much for your support - its great to have received so

> many messages so quickly - I certainly don't feel alone in handling

> this.

>

> For those of you who asked, I'm 31 and I live in the Midlands in the

> UK. From what I can gather, many of you are in the US.

>

> I does sound like the surgery is my best option. I went out for a

> meal last night for Christmas and ordered soup - I only managed a few

> mouthfuls before it got stuck and I had to disappear to the loo. I

> know that I was anxious before the meal and concerned about how I was

> going to manage to eat anything. My friends all understand although

> my boyfriend I think finds it frustrating cos we don't go out for

> meals or go out drinking like we used to.

>

> I've been on the waiting list since November and have been told it

> will be February or March before I reach the start of the waiting list.

>

> Christmas day will be tough, we've got family coming to us and I'm a

> bit anxious about that but know that I just need to stay positive and

> try not to panic.

>

> Thank you all for your messages, it really helps to know there are

> people out there who understand.

>

> __________________________________________________

>

December 21, 2006

Jo - I'm a relatively recent newbie myself, having had the heller op

done Wed last week. When I finally got a diagnosis for my strange and

weird condition that nobody else had, then saw the X ray of my

pathetic-looking " bird beak " oesophagus full of barium which refused to

go down, that made up my mind that something had to be done and soon.

And all the research I did on the net, and a lot of the comments on this

site, plus what all the health professionals told me, indicated very

strongly that the operation was the best way to go. I am a psychologist

teaching clients various relaxation techniques, and I follow them myself

- meditation, breath counting, mindfulness/staying in the present

moment, progressive muscle relaxation, etc, all of which are likely to

help alleviate the symptoms somewhat, but they sure won't regenerate the

dead nerves in the lower oesophagus, nor get that lower oesophagal

sphincter to open up. Post-op, I'm now swallowing freely for the first

time since I can remember, and am struggling to keep meals small and

slushy, as I seem to want to be eating all the time.

Ragr - hope your pain will soon start settling down.

( - Warne retired, and many others to follow, the ashes will be

yours from 2009 onward for a while.)

Mal in Aust.

December 21, 2006

Hi JoHannah waited 12 months after her surgery before getting pregnant - basically to get some goodness into her body. She asked her surgeon and consultant first re having children and of course about giving birth naturally she was concerned that she would damage the operation, and they said there would be no problem. And there wasn't - nothing at all - in fact she did not even get heart burn like most women! she had a healthy 8lb baby with a 6 hour labour. The only thing that has been a problem with her present pregnancy is that she has wanted to vomit - and you can't when you've had the op! - all she could do was wretch but that was hardly a problem! I wish you all the best and I see you have someone living really near you. Which is absolutely fantastic - Hope you get sorted soon.Lots of love to youxxJoanne Field <jefield@...> wrote: , Thank you. This is really helpful. I'm wondering how I go about getting referred to another surgeon. I'll try seeing my GP again and see what can be done to hurry things up. Wolverhampton isn't too far from us - we're in Northamptonshire so its not too far away. Its great to hear that your daughter has had children since having this condition because that has been 1 of my concerns since finding out about it - I want to try and have children in the next 18 months if I can and feel concerned that my diet is too poor at the moment. >From:

Dixon <wendixon > >Reply-achalasia >achalasia >Subject: Re: Newbie >Date: Thu, 21 Dec 2006 03:18:46 -0800 (PST) > >Hi >I am glad that you are not feeling alone. My daughter has this condition - >I can't understand why you are waiting so long! We live in Southport UK >and although it took a long time to get a diagnosis for Hannah - who is now >27 and pregnant with her second child - she had her op within 9 weeks of >being diagnosed with an apology that she had to wait so long. My husband >works in Wombourne Wolverhampton are you near there? >although I have not had achalasia I know the stress Hannah went through >trying to go out for meals - first

thought is where is the loo? Can't sit >there - can't get out! She eventually stopped going out. Now she goes out >and the only requirement is to drink a lot during her meal. >So although I do not know at first hand I know as a mum - and it's painful >whatever age your child is. You will obviously know that stress aggravates >it too. I know there are surgeons in London too - can you ask to be >referred as you are waiting? >My daughter had her op 31/2 years ago and has since got married had one >baby and is due another in 14 weeks. I am not saying she has not had to >regurgitate but it has usually been due to be being 'piggy' and not chewing >properly! >But her normal weight is now between 9 1/2 and 10 stone as opposed to >5stone 12lbs. >So I would urge you to get referred. >Hannah's consultant is Dr Butcher (appropriate name!) and her surgeon is Mr

>Zeiderman - both of whom can be found on the internet under Southport and >Ormskirk General Hospital. >Hope this is of some help - > > >star_jof <jefieldhotmail> wrote: >Thank you all so much for your support - its great to have received so > many messages so quickly - I certainly don't feel alone in handling > this. > > For those of you who asked, I'm 31 and I live in the Midlands in the > UK. From what I can gather, many of you are in the US. > > I does sound like the surgery is my best option. I went out for a > meal last night for Christmas and ordered soup - I only managed a few > mouthfuls before it got stuck and I had to disappear to the loo. I > know that I was anxious before the meal and concerned about how I was > going to manage to

eat anything. My friends all understand although > my boyfriend I think finds it frustrating cos we don't go out for > meals or go out drinking like we used to. > > I've been on the waiting list since November and have been told it > will be February or March before I reach the start of the waiting list. > > Christmas day will be tough, we've got family coming to us and I'm a > bit anxious about that but know that I just need to stay positive and > try not to panic. > > Thank you all for your messages, it really helps to know there are > people out there who understand. > > > > > > __________________________________________________ >

December 21, 2006

Jo,

Hi, I am one of the ones in London.

You seem to be waiting a long time for your operation. Have you heard of patient choice? The details are on http://www.nhs.uk/England/Choice/ I think this is now fully operational but I did hear that there could be a delay. Your GP should have a choice of up to four local hospitals for your procedure. If you enquire at the surgery where they are you can then ask the hospitals how long their waiting list is. I think, but you will need to check this, that you may be able to choose any NHS Foundation Trust across the country but again the implementation of this could have been delayed. I do not know if you have any locally but they could be an option.

Then as others have said you also need to consider the experience of the hospitals surgeons. Some hospitals have very informative web sites, some don't. Hospitals with a dedicated Upper Gastrointestinal Service tend to be the more experienced in this type of surgery. However, with 6,000 Achalasians in the UK and only approximately 150 acute Trusts most hospitals do have some experience somewhere in the Trust.

In terms of going out. At times when I was bad I used to go out with friends and just sip a glass of wine, no food at all. For me it was psychologically important to continue as normal. I would have the odd occasion when I couldn't make it through the glass of wine but I would still sit there and participate in the conversation. For me it was important not to let the disease control me. But, I admit, in the early days of diagnosis I was all over the place but at 21 I didn't really care that much (I am now 43 and care very much, the care free attitude of youth, how I miss it). Incidentally, I sometimes found Lager easier than wine as I think heavier fluids have sometimes been helpful for me but if you do try it don't go for a large glass, far too daunting a task to drink.

Has anyone advised you to try the supplement drinks? They don't taste that great but they provide an awful lot of nutrition. I can only do one or two a day at most but they give you those important minerals, protein and vitamins that we tend to lack when things are bad. You can get them on prescription and at £2.50 a carton I suggest you try your GP, but it may be good to buy one from the chemist to see if you manage it.

Have you discovered anything that helps you get your food down temporarily? Some of us have found good positions to lie/sit in. For example, I used to lean on my left side, that worked for a while. I have also found a bath helps (as this changes the pressure in your chest) and I have even resorted to flapping my arms.

Once again these are all personal suggestions. Other people may say that none of these have worked for them. You will find out what helps you in time.

Try and enjoy some of the festive break.

STEVE

Newbie

Thank you all so much for your support - its great to have received so many messages so quickly - I certainly don't feel alone in handling this.For those of you who asked, I'm 31 and I live in the Midlands in the UK. From what I can gather, many of you are in the US.I does sound like the surgery is my best option. I went out for a meal last night for Christmas and ordered soup - I only managed a few mouthfuls before it got stuck and I had to disappear to the loo. I know that I was anxious before the meal and concerned about how I was going to manage to eat anything. My friends all understand although my boyfriend I think finds it frustrating cos we don't go out for meals or go out drinking like we used to.I've been on the waiting list since November and have been told it will be February or March before I reach the start of the waiting list.Christmas day will be tough, we've got family coming to us

and I'm a bit anxious about that but know that I just need to stay positive and try not to panic.Thank you all for your messages, it really helps to know there are people out there who understand.

To help you stay safe and secure online, we've developed the all new Security Centre.

January 2, 2007

Jo,

Addressing your pregnancy concerns, I had had swallowing problems and

was only diagnosed as far as " spasming esophogus " until after my first

pregnancy in which I only gained 15 pounds and had my healthy 8 pound 14

ounce baby boy. I had gallbladder problems, had my gallbladder removed

when my son was 8-9 months old and had to be scoped to find out if an

escaped gallstone was to blaim for my becoming jaundiced. During that

scope my now GI found and fully/accurately diagnosed my Achalasia. I

had a Heller Myotomy about 2 months later (they ran various tests before

I opted for the surgery).

I am so glad I became jaundiced It lead to my eventual surgery and

HUGE improvement to my life. I have since had my beautiful baby girl.

I did have some trouble swallowing while pregnant and have some issues

cyclically but I am in such a hugely better place than before my

surgery. I have had one dilation (I refer to it as a tune up) about a

year and a half after my surgery. My surgery was 4 1/2 years ago.

(I don't want to scare you but just to be aware of some of the risks

involved with the surgery. My surgery was done laproscopically which is

as minimally invasive as a Heller Myotomy can be. Unfortunately in my

case the surgeon nicked my stomach and had to go in to repair that. So

instead of 2-3 days in the hotipal I was in for 6-7 days. Yes that

sucked and I lost some weight - sort of a side benefit, haha - but even

knowing that I would have had to go through what I did I would do it

again in a heartbeat. That's how much better my life is now than if I

had not gotten " fixed " . It took some time to heal and gain back some of

the weight and then to find my balance but I was fairly stable before

becoming pregnant with my daughter just 6 months after the surgery. And

now 4 1/2 years later it is a big medical story to tell family and

friends who see me at my " I could probably afford to lose 5-10 pounds "

weight - which just shows that I am certainly able to eat enough to not

only be healthy but thrive.)

Life with achalasia, even after surgery, is not perfect since it doesn't

just disappear completely with surgery. But my life was vastly improved

by the Heller Myotomy and subsequent dilation. The 3 loves of my life

(my husband and 2 beautiful kids) have me in their lives, happy and

mostly healthy so that's not bad.

I hope you find at least the kind of relief as I have found or even

better. I too used to fear and hate eating out with anyone since I more

often than not would have ended up in the bathroom and being both hurt

and embarrassed. I now eat out at least once a week and generally enjoy

going out.

Good luck with your surgeron search and ultimate decision.

Beverly in California

Joanne Field wrote:

> , Thank you. This is really helpful. I'm wondering how I go about

> getting referred to another surgeon. I'll try seeing my GP again and see

> what can be done to hurry things up.

>

> Wolverhampton isn't too far from us - we're in Northamptonshire so its

> not

> too far away.

>

> Its great to hear that your daughter has had children since having this

> condition because that has been 1 of my concerns since finding out

> about it

> - I want to try and have children in the next 18 months if I can and feel

> concerned that my diet is too poor at the moment.

>

> >From: Dixon <wendixon@... <mailto:wendixon%40>>

> >Reply-achalasia <mailto:achalasia%40>

> >achalasia <mailto:achalasia%40>

> >Subject: Re: Newbie

> >Date: Thu, 21 Dec 2006 03:18:46 -0800 (PST)

> >

> >Hi

> >I am glad that you are not feeling alone. My daughter has this

> condition -

> >I can't understand why you are waiting so long! We live in Southport UK

> >and although it took a long time to get a diagnosis for Hannah - who

> is now

> >27 and pregnant with her second child - she had her op within 9 weeks of

> >being diagnosed with an apology that she had to wait so long. My husband

> >works in Wombourne Wolverhampton are you near there?

> >although I have not had achalasia I know the stress Hannah went through

> >trying to go out for meals - first thought is where is the loo? Can't

> sit

> >there - can't get out! She eventually stopped going out. Now she goes

> out

> >and the only requirement is to drink a lot during her meal.

> >So although I do not know at first hand I know as a mum - and it's

> painful

> >whatever age your child is. You will obviously know that stress

> aggravates

> >it too. I know there are surgeons in London too - can you ask to be

> >referred as you are waiting?

> >My daughter had her op 31/2 years ago and has since got married had one

> >baby and is due another in 14 weeks. I am not saying she has not had to

> >regurgitate but it has usually been due to be being 'piggy' and not

> chewing

> >properly!

> >But her normal weight is now between 9 1/2 and 10 stone as opposed to

> >5stone 12lbs.

> >So I would urge you to get referred.

> >Hannah's consultant is Dr Butcher (appropriate name!) and her surgeon

> is Mr

> >Zeiderman - both of whom can be found on the internet under Southport

> and

> >Ormskirk General Hospital.

> >Hope this is of some help -

> >

> >star_jof <jefield@... <mailto:jefield%40hotmail.com>> wrote:

> >Thank you all so much for your support - its great to have received so

> > many messages so quickly - I certainly don't feel alone in handling

> > this.

> >

> > For those of you who asked, I'm 31 and I live in the Midlands in the

> > UK. From what I can gather, many of you are in the US.

> >

> > I does sound like the surgery is my best option. I went out for a

> > meal last night for Christmas and ordered soup - I only managed a few

> > mouthfuls before it got stuck and I had to disappear to the loo. I

> > know that I was anxious before the meal and concerned about how I was

> > going to manage to eat anything. My friends all understand although

> > my boyfriend I think finds it frustrating cos we don't go out for

> > meals or go out drinking like we used to.

> >

> > I've been on the waiting list since November and have been told it

> > will be February or March before I reach the start of the waiting list.

> >

> > Christmas day will be tough, we've got family coming to us and I'm a

> > bit anxious about that but know that I just need to stay positive and

> > try not to panic.

> >

> > Thank you all for your messages, it really helps to know there are

> > people out there who understand.

> >

> > __________________________________________________

> >

January 2, 2007

Beverley

Thank you so much for taking the time to reply to me. I have been in 2

minds about chasing up my surgeon and trying to get the operation date

pulled forward - I have lost more weight and am feeling totally lathargic

and quite down about things (the things keeping me going are my fabulous

fiance - he proposed christmas day - and my family), I feel quite drained by

it all. Everyone's asking when we're going to get married but I'm scared

.... I want to be able to eat and know that I'll be able to fully enjoy the

day.

I'm going to try and call my surgeon today and see what can be done. I

wasn't sure about having teh surgery initially - I thought stress was

causing the problems but, after reading people's experiences on the board it

seems like surgery really is my only option.

Its fantastic to hear how well you've done and its encouraging to know that

I'll hopefully be able to have children without too much trouble...x

>From: Beverly <bevjames@...>

>Reply-achalasia

>achalasia

>Subject: Re: Newbie

>Date: Mon, 01 Jan 2007 21:12:19 -0800

>

>Jo,

>

>Addressing your pregnancy concerns, I had had swallowing problems and

>was only diagnosed as far as " spasming esophogus " until after my first

>pregnancy in which I only gained 15 pounds and had my healthy 8 pound 14

>ounce baby boy. I had gallbladder problems, had my gallbladder removed

>when my son was 8-9 months old and had to be scoped to find out if an

>escaped gallstone was to blaim for my becoming jaundiced. During that

>scope my now GI found and fully/accurately diagnosed my Achalasia. I

>had a Heller Myotomy about 2 months later (they ran various tests before

>I opted for the surgery).

>

>I am so glad I became jaundiced It lead to my eventual surgery and

>HUGE improvement to my life. I have since had my beautiful baby girl.

>I did have some trouble swallowing while pregnant and have some issues

>cyclically but I am in such a hugely better place than before my

>surgery. I have had one dilation (I refer to it as a tune up) about a

>year and a half after my surgery. My surgery was 4 1/2 years ago.

>

>(I don't want to scare you but just to be aware of some of the risks

>involved with the surgery. My surgery was done laproscopically which is

>as minimally invasive as a Heller Myotomy can be. Unfortunately in my

>case the surgeon nicked my stomach and had to go in to repair that. So

>instead of 2-3 days in the hotipal I was in for 6-7 days. Yes that

>sucked and I lost some weight - sort of a side benefit, haha - but even

>knowing that I would have had to go through what I did I would do it

>again in a heartbeat. That's how much better my life is now than if I

>had not gotten " fixed " . It took some time to heal and gain back some of

>the weight and then to find my balance but I was fairly stable before

>becoming pregnant with my daughter just 6 months after the surgery. And

>now 4 1/2 years later it is a big medical story to tell family and

>friends who see me at my " I could probably afford to lose 5-10 pounds "

>weight - which just shows that I am certainly able to eat enough to not

>only be healthy but thrive.)

>

>Life with achalasia, even after surgery, is not perfect since it doesn't

>just disappear completely with surgery. But my life was vastly improved

>by the Heller Myotomy and subsequent dilation. The 3 loves of my life

>(my husband and 2 beautiful kids) have me in their lives, happy and

>mostly healthy so that's not bad.

>

>I hope you find at least the kind of relief as I have found or even

>better. I too used to fear and hate eating out with anyone since I more

>often than not would have ended up in the bathroom and being both hurt

>and embarrassed. I now eat out at least once a week and generally enjoy

>going out.

>

>Good luck with your surgeron search and ultimate decision.

>Beverly in California

>

>Joanne Field wrote:

>

> > , Thank you. This is really helpful. I'm wondering how I go about

> > getting referred to another surgeon. I'll try seeing my GP again and see

> > what can be done to hurry things up.

> >

> > Wolverhampton isn't too far from us - we're in Northamptonshire so its

> > not

> > too far away.

> >

> > Its great to hear that your daughter has had children since having this

> > condition because that has been 1 of my concerns since finding out

> > about it

> > - I want to try and have children in the next 18 months if I can and

>feel

> > concerned that my diet is too poor at the moment.

> >

> > >From: Dixon <wendixon@... <mailto:wendixon%40>>

> > >Reply-achalasia

><mailto:achalasia%40>

> > >achalasia <mailto:achalasia%40>

> > >Subject: Re: Newbie

> > >Date: Thu, 21 Dec 2006 03:18:46 -0800 (PST)

> > >

> > >Hi

> > >I am glad that you are not feeling alone. My daughter has this

> > condition -

> > >I can't understand why you are waiting so long! We live in Southport UK

> > >and although it took a long time to get a diagnosis for Hannah - who

> > is now

> > >27 and pregnant with her second child - she had her op within 9 weeks

>of

> > >being diagnosed with an apology that she had to wait so long. My

>husband

> > >works in Wombourne Wolverhampton are you near there?

> > >although I have not had achalasia I know the stress Hannah went through

> > >trying to go out for meals - first thought is where is the loo? Can't

> > sit

> > >there - can't get out! She eventually stopped going out. Now she goes

> > out

> > >and the only requirement is to drink a lot during her meal.

> > >So although I do not know at first hand I know as a mum - and it's

> > painful

> > >whatever age your child is. You will obviously know that stress

> > aggravates

> > >it too. I know there are surgeons in London too - can you ask to be

> > >referred as you are waiting?

> > >My daughter had her op 31/2 years ago and has since got married had one

> > >baby and is due another in 14 weeks. I am not saying she has not had to

> > >regurgitate but it has usually been due to be being 'piggy' and not

> > chewing

> > >properly!

> > >But her normal weight is now between 9 1/2 and 10 stone as opposed to

> > >5stone 12lbs.

> > >So I would urge you to get referred.

> > >Hannah's consultant is Dr Butcher (appropriate name!) and her surgeon

> > is Mr

> > >Zeiderman - both of whom can be found on the internet under Southport

> > and

> > >Ormskirk General Hospital.

> > >Hope this is of some help -

> > >

> > >star_jof <jefield@... <mailto:jefield%40hotmail.com>> wrote:

> > >Thank you all so much for your support - its great to have received so

> > > many messages so quickly - I certainly don't feel alone in handling

> > > this.

> > >

> > > For those of you who asked, I'm 31 and I live in the Midlands in the

> > > UK. From what I can gather, many of you are in the US.

> > >

> > > I does sound like the surgery is my best option. I went out for a

> > > meal last night for Christmas and ordered soup - I only managed a few

> > > mouthfuls before it got stuck and I had to disappear to the loo. I

> > > know that I was anxious before the meal and concerned about how I was

> > > going to manage to eat anything. My friends all understand although

> > > my boyfriend I think finds it frustrating cos we don't go out for

> > > meals or go out drinking like we used to.

> > >

> > > I've been on the waiting list since November and have been told it

> > > will be February or March before I reach the start of the waiting

>list.

> > >

> > > Christmas day will be tough, we've got family coming to us and I'm a

> > > bit anxious about that but know that I just need to stay positive and

> > > try not to panic.

> > >

> > > Thank you all for your messages, it really helps to know there are

> > > people out there who understand.

> > >

> > > __________________________________________________

> > >

January 2, 2007

I've just heard from my surgeon - I'm going to see him on 15th January for

another consultation and see if he can pull my appointment for the HM

forward a bit...I'll keep you posted...

Hope you are starting the New Year Well.

_________________________________________________________________

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January 13, 2007

Why has no one posted back? Are newbies not allowed? LOL I was just looking for

some information.

---------------------------------

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January 13, 2007

crazy neighbor wrote:

>

> Why has no one posted back? Are newbies not allowed? LOL I was just

looking for some information.

>

We got scared off by those formidable sounding meds you were asking

about. I don't know a thing about 'em.

-

January 13, 2007

Dear neighbor

Why are you crazy?

What I found that significantly reduced FMS symptoms is NOT drugs.... but,

SAM-e

Magnesium in liquid form

vitamin B complex

fish oil

acupuncture

bright light

gentle exercise

improved sleep with a CPAP machine

How can any of us know whether a pain clinic will help you or not?

mjh

" crazy.neighbor "

<crazy.neighbor@cra> wrote:

>

> Hello everyone. It looks like this a very informative group here, so I

> would like to ask about the meds I am on for my fibro. I just began

> taking nortriptyline and lyrica...... The nortriptyline makes me feel

> very weirded out. The lyrica, I am praying will help me out. Other

> than these 2 meds, thats all I take, other than numerous, tylenols,

> 600 mg. motrins, tramadols, and fiorcets. I think I'm taking way too

> much of those pain meds. I'm afraid of damaging my liver and kidneys.

> But my doc doesn't give me anything stronger. I'm being referred to a

> pain clinic. Whats your experiences with the nortriptyline and lyrica?

> And will the pain clinic be of any help to me? BTW I'm 44 yr old

> woman, still working, but barely...... woman, still working, but b

> married 25 yrs. Any help would be appreciated. Also my husband does

> massage on me at least once a day, usually more, poor fella. Thanks in

> advance.

>

January 14, 2007

Hi newbie,

I wish I could help but I've never tried nortriptyline nor lyrica.

I do take tramadol every now and then when the muscular pain become

unbearable. It helps quite a bit and also gives me quite a high (don't

ask me why!).

Cheers,