Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 if you go to view - text size you can blow up html text. http://members.tripod.com/mueller_ranges/ nutritional stuff is through the links section must update it. > Hi > I can;t find the link I saved to your site, can you repost please. I tried > reading archives at the enzymes site but the text in minute and I can;t read it > TIA > Mandi in UK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 In a message dated 6/6/2007 10:32:56 A.M. Pacific Daylight Time, kevin.brown150@... writes: It would be great to see other members post to say that they have be fine for many years too it would give many members here somthing postive to remember.Take carePippa Pippa and all, One of my favorite quotes: 'Where there is hope, there is possibility.' Everyone, I wonder if it is possible to track down members who have not been heard from in a while to ask for an update. It would be really interesting to see the greatest possible stats. Possibly with those we would be able to ascertain that the long-term range is higher than might have been previously thought? Does this sound like a really good task to find quiet or previous members? PegSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Hi I had an open myotomy Setember 2006 and had no other treatment before that and am due to go back to see my surgeon on the 12th June. When I saw him in November last year he mentioned about doing an edoscope at the end of this year and then every 3 to 5 years after that wish he had said a barium swallow, sure hope they sedate me again!! I am like you whenever I eat I always have a bottle of water to hand or a cup of tea to wash the food down have done well so far. Had a couple of things get stuck but was my own fault as I had eaten it too quickly and didn't take on the liquids when I should have done still learning. I sleep with a wedge and don't eat too close to bed time I don't take PPI as I had a wrap done and surgeon says I didn't need them haven't suffered with any acid. I don't eat a full plate of food never have been a big eater find that half a plate sometimes less is enough for me. I try to eat every 3 hours or so during the day and always with fluids. I am aware that it is progressive condition and sometimes wonder just how long this good period will last. So to see your post gives me hope that it will last a good few years you are right of course that those that have done well for many years have probably gone and forgotten the group. Which is why it was so good to your post to let us know just how long ago you had your surgery and that you are doing well. It would be great to see other members post to say that they have be fine for many years too it would give many members here somthing postive to remember. Take care Pippa > > > > > > Hey a - it is VERY common for people to have to have post- op > > > dilations. I had two in the 18 years since my surgery, the last > > one > > > being at least 10 years ago. Now, he'll never swallow exactly the > > same > > > again and because he has no (or just really messed up) > > peristalsis, > > > he'll always need water and gravity. My rule of thumb is that if > I > > > don't have water available - I DON'T EAT. > > > So Pat - I think this answers your questions too. Yes, I'm pretty > > much > > > always aware of where my food is, I can feel it going down (or > > not), it > > > does go slowly. Because of the peristalsis issues, even when your > > > surgery works well and opens your LES, you still need to 'push' > > your > > > food down. > > > I hope that helps. > > > > > > Happy Swallowing! > > > - in NC > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi I am due to go back to see my surgeon tomorrow and so far don't really have any questions to ask him but I have a couple for you. He told me last year the he may want to do an endoscopy at the end of this year. How often do you have check ups? Are they barium swallows or endoscopies? Also how soon after your surgery did you need your first dilation? Love Pippa > > > > Hi My name is , I was diagnosed in 1995 with achalasia. My > > first time i experience problem in swallowing was at the age of > fourteen, > > I am now forty two, healthy medium build not over weight and seem to > > manage my condition fairly well. I drink loads of liquid with all > > meals, I eat most things, but I prefer wet food like cottage pie, i > > love my food > > and when I have problems swallowing I am in a bad way. I have put off > > the Hellier myotomy and nissan fundaplication. I would love to speak > > to those who are 5 years plus post op, it would be great to speak to > > 10 or 15 year post op. To see who things are in general. > > i would love to speak to you all on our condition and and to help each > > other. > > Take care all > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hey Pippa - I'll answer your questions the best I can. I have endoscopies and barium swallows every other year. I'm due again in the summer and have my scope scheduled for July. I used to only go every 3-5 years but I've had A now for over 25 years and I'm also approaching 40 so my GI and I decided every other was a good bet. phew, it seems like my first dilation was kinda soon (within 3 years) afterwards but honestly - it was 18 years ago, I'm not quite sure. Now I never got to the point either pre or post op where NOTHING would go down - it was always just a constant struggle. My last dilation was over 10 years ago. Swallowing is not my big thing now, spasms are - unfortunately, they didn't go away. Does that answer everything? feel free to ask more. good luck with your appointment. Happy Swallowing! - in NC > > > > > > Hi My name is , I was diagnosed in 1995 with achalasia. My > > > first time i experience problem in swallowing was at the age of > > fourteen, > > > I am now forty two, healthy medium build not over weight and > seem to > > > manage my condition fairly well. I drink loads of liquid with all > > > meals, I eat most things, but I prefer wet food like cottage > pie, i > > > love my food > > > and when I have problems swallowing I am in a bad way. I have > put off > > > the Hellier myotomy and nissan fundaplication. I would love to > speak > > > to those who are 5 years plus post op, it would be great to > speak to > > > 10 or 15 year post op. To see who things are in general. > > > i would love to speak to you all on our condition and and to > help each > > > other. > > > Take care all > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Thanks for answering so quickly Do they sedate you when they do your endascope or are you one of the brave ones who just lets then get on with it!!!! Its great to know that you are still doing well 18 years on. Love Pippa > > > > > > > > Hi My name is , I was diagnosed in 1995 with achalasia. > My > > > > first time i experience problem in swallowing was at the age of > > > fourteen, > > > > I am now forty two, healthy medium build not over weight and > > seem to > > > > manage my condition fairly well. I drink loads of liquid with > all > > > > meals, I eat most things, but I prefer wet food like cottage > > pie, i > > > > love my food > > > > and when I have problems swallowing I am in a bad way. I have > > put off > > > > the Hellier myotomy and nissan fundaplication. I would love to > > speak > > > > to those who are 5 years plus post op, it would be great to > > speak to > > > > 10 or 15 year post op. To see who things are in general. > > > > i would love to speak to you all on our condition and and to > > help each > > > > other. > > > > Take care all > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Oh no no no. I get the full sedation. I had a doctor once convince me to do the 'twilight sleep' he told me 'oh, you won't remember any of it - WRONG!! I woke up feeling like I couldn't breathe and struggled to take the scope out of my mouth - bit him too. That's what he gets... Now I make sure to tell them EVERY time that they better knock me out completely. Happy Swallowing! - in NC -- In achalasia , " Pippa " <kevin.brown150@...> wrote: > > Thanks for answering so quickly > > Do they sedate you when they do your endascope or are you one of the > brave ones who just lets then get on with it!!!! > > Its great to know that you are still doing well 18 years on. > > Love > > Pippa > > > > > > > > > > > > > > > Hi My name is , I was diagnosed in 1995 with > achalasia. > > My > > > > > first time i experience problem in swallowing was at the age > of > > > > fourteen, > > > > > I am now forty two, healthy medium build not over weight and > > > seem to > > > > > manage my condition fairly well. I drink loads of liquid > with > > all > > > > > meals, I eat most things, but I prefer wet food like cottage > > > pie, i > > > > > love my food > > > > > and when I have problems swallowing I am in a bad way. I > have > > > put off > > > > > the Hellier myotomy and nissan fundaplication. I would love > to > > > speak > > > > > to those who are 5 years plus post op, it would be great to > > > speak to > > > > > 10 or 15 year post op. To see who things are in general. > > > > > i would love to speak to you all on our condition and and to > > > help each > > > > > other. > > > > > Take care all > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 LMAO I bit my doc to that talked me into that!!!1 From: achalasia [mailto:achalasia ] On Behalf Of michelle Sent: Monday, June 11, 2007 3:11 PM achalasia Subject: Re: FAO Oh no no no. I get the full sedation. I had a doctor once convince me to do the 'twilight sleep' he told me 'oh, you won't remember any of it - WRONG!! I woke up feeling like I couldn't breathe and struggled to take the scope out of my mouth - bit him too. That's what he gets... Now I make sure to tell them EVERY time that they better knock me out completely. Happy Swallowing! - in NC -- In achalasia , " Pippa " <kevin.brown150@...> wrote: > > Thanks for answering so quickly > > Do they sedate you when they do your endascope or are you one of the > brave ones who just lets then get on with it!!!! > > Its great to know that you are still doing well 18 years on. > > Love > > Pippa > > > > > > > > > > > > > > > Hi My name is , I was diagnosed in 1995 with > achalasia. > > My > > > > > first time i experience problem in swallowing was at the age > of > > > > fourteen, > > > > > I am now forty two, healthy medium build not over weight and > > > seem to > > > > > manage my condition fairly well. I drink loads of liquid > with > > all > > > > > meals, I eat most things, but I prefer wet food like cottage > > > pie, i > > > > > love my food > > > > > and when I have problems swallowing I am in a bad way. I > have > > > put off > > > > > the Hellier myotomy and nissan fundaplication. I would love > to > > > speak > > > > > to those who are 5 years plus post op, it would be great to > > > speak to > > > > > 10 or 15 year post op. To see who things are in general. > > > > > i would love to speak to you all on our condition and and to > > > help each > > > > > other. > > > > > Take care all > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 I am with you on that one I told them if I knew what was going on I was walking out. So I saw him inject the whole bottle on meds into the back of my hand and I was out out of it. I remember them putting the mouth guard in and then waking up in the recover room with a nurse asking me if I wanted a cup of tea!!!! The doctor came round and asked me if I remembered anything as apparently I tired to talk to him think swear would have been more like it lol. Love Pippa > > > > > > > > > > > > Hi My name is , I was diagnosed in 1995 with > > achalasia. > > > My > > > > > > first time i experience problem in swallowing was at the > age > > of > > > > > fourteen, > > > > > > I am now forty two, healthy medium build not over weight > and > > > > seem to > > > > > > manage my condition fairly well. I drink loads of liquid > > with > > > all > > > > > > meals, I eat most things, but I prefer wet food like > cottage > > > > pie, i > > > > > > love my food > > > > > > and when I have problems swallowing I am in a bad way. I > > have > > > > put off > > > > > > the Hellier myotomy and nissan fundaplication. I would love > > to > > > > speak > > > > > > to those who are 5 years plus post op, it would be great > to > > > > speak to > > > > > > 10 or 15 year post op. To see who things are in general. > > > > > > i would love to speak to you all on our condition and and > to > > > > help each > > > > > > other. > > > > > > Take care all > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2007 Report Share Posted August 9, 2007 Jane, I can’t tell y Venable Cell (510) 688-0791 From: achalasia [mailto:achalasia ] On Behalf Of sarah1coop Sent: Thursday, August 09, 2007 12:05 AM achalasia Subject: FAO Thanks for your post, . Glad to hear you're doing well now. Does that mean that your problem with gas was bad continuously and didn't stop until you had a 2nd myotomy, with a wrap? I do hope not! I'm really hoping it'll disappear with time (which my G.P. seems to think, but this condition's rare, as you know, and you wonder if they know that much about it. The nurses on my cardio- thoracic ward hadn't heard of " Heller's myotomy " !). The surgeon didn't do a wrap because he said it'd aggravate my principal problem of very early fullness, but I still fill up very quickly, 3 months post-op. I'm on the anti-reflux med. Had a worse couple of days recently with the gas when my throat/oesoph./stomach felt so tight with gas that I felt as if I was going to " pop " ! Jane, U.K. > > > > I had a Lap 2nd Myotomy with a Dor wrap in July. My first one was > ten years > > ago and without a wrap. It wasn't long enough into to the stomach > and I was > > having a lot of trouble with GERD. > > > > > > > > > > > > > > > > From: achalasia <mailto:achalasia% 40> > [mailto:achalasia <mailto:achalasia% 40> ] > On Behalf > > Of michelle > > Sent: Tuesday, August 07, 2007 10:39 AM > > achalasia <mailto:achalasia% 40> > > Subject: 2nd and 3rd myotomys > > > > > > > > Hey JC - did I read right that you've had 3 myotomies now? how are > you > > doing with them? How long did each last and what kind of wrap (if > any) > > did you have? > > I'm working on contacting both Dr. Rice and Dr. Dempsey to get > their > > opinions on having my wrap re-done but I'd love to have your > thoughts > > and personal experiences. > > Anyone else have a 2nd or 3rd myo and/or fundo done? - > didn't > > you have your wrap re-done? there's just so many of us anymore > that it > > gets hard to keep track of who's done what exactly. > > > > feel free to throw your experiences my way, I'd love all the input > I > > can get. > > > > Thanks!! > > Happy Swallowing! > > - in NC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Hi My name is Lucy and my husband Garry and I have a daughter Holly aged 2 who is the first in the family to have BPES. We live in the South of England and we are under Moorfields Eye Hospital in London. They are fantastic and see other patients with BPES a lot and are very experienced. Holly had her first operation last September because her pupils were covered by her lids so they did a temporary lift to aid her eye development. As you said yours in not severe so you probably did not need surgery. As long as the childs pupil is clear they generally leave the operations, all cases are so different. Holly is due two more operations in the year 2009 before she starts school in the September. We know that Holly could either be infertile or suffer from POF but we are going to cross that bridge when we get to it. I understand that in boys they are not infertile but have a 50% of passing it down to their children. This is the case for girls too if they can have children. If you have any more questions please fire away. Regards Lucy Chidgey (Gosport, Hampshire UK) <karen.jones@...> wrote: Hello all, I have recently found out that I have BPES and so does my one year old son, . I noticed that he couldn't open his eyes when he was born. I wasn't diagnosed before because my symptoms were not as severe. I have been reading your messages for a while - there are some really knowledgeable people out there. I have a couple of questions: Firstly to anyone from England: We don't know for sure whether or not to opt for surgery for . If he does can we choose our surgeon? Our current consultant is in the north east (where we live) but has only performed this operation four times. Are there more experienced surgeons in the south? Secondly, to anyone out there: I asked to be referred to a geneticist in order to find out more about Type 1 and Type 2 and fertility issues. I am keen to have more children myself and I would like more information for any girls I have. The geneticist took blood but decided not to send it off to Belgium to be analysed because she didn't think it would give my any useful information. One reason was because I am the first in my family to have this condition so she said the mutation may have happened after conception and not be present in all my cells (and therefore my blood may not contain the mutated DNA) and secondly she said that it may not give me any useful information anyway. Is this the story you have all been given or can I find out more about mine and my children's fertility from a DNA test? I look forward to meeting some of you if there is and England get together. Best wishes (Durham, England) Answers - Get better answers from someone who knows. Try it now. Quote Link to comment Share on other sites More sharing options...
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