Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hi All I saw my General Practitioner this morning for a chat. He had the results from last Monday's Dilatation and endoscopy. Although the swallowing is much the same as pre dilatation, the reflux is worse if anything and he is not happy that i have to wait until May 23rd to see the surgeon for review. So he is sending him a request letter that i be seen sooner. I have had the most horrendus night with the reflux and i don't care what anyone says i simply cannot put up with it any longer without help. I am on Nexium 40mg in the morning and the same of an evening plus i am on the maximum dose of Gaviscon (this last one helps a little but not much). The referred pain that i get im my back with the swallowing difficulty is back almost full force and the thing is i cannot take antinnflamitories for that pain as i have a history with ulcers. I wait with baited breath for a newer appointment that the May 23rd on to pop through my letterbox. from the UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hang in there . I am so glad your GP was helpful and I am so sorry about all the pain - it sounds awful. I hope you can get something that eases it soon. love Kay > > Hi All > I saw my General Practitioner this morning for a chat. He had the results from last Monday's Dilatation and endoscopy. Although the swallowing is much the same as pre dilatation, the reflux is worse if anything and he is not happy that i have to wait until May 23rd to see the surgeon for review. So he is sending him a request letter that i be seen sooner. I have had the most horrendus night with the reflux and i don't care what anyone says i simply cannot put up with it any longer without help. I am on Nexium 40mg in the morning and the same of an evening plus i am on the maximum dose of Gaviscon (this last one helps a little but not much). The referred pain that i get im my back with the swallowing difficulty is back almost full force and the thing is i cannot take antinnflamitories for that pain as i have a history with ulcers. I wait with baited breath for a newer appointment that the May 23rd on to pop through my letterbox. > from the UK > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hi , I wish there was some magic thing that I could suggest that would ease your troubles instantlty, but the truth is I have nothing to suggest other than keep going. One of the tricks about being assertive and getting the help you need is to be a " broken record " and keep seeking early appointments/the best people to see you until you get satisfaction. I am thinking of you and you are in my thoughts/prayers that your quality of life improves. Always remember that it should not be like this and that you deserve a good life and not have to put up with this S**t that is the legacy of your Achalasia. regards tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 Hi , Are you sleeping with a wedge pillow? That can really make a difference at night. I now have a folding wedge pillow by MedSlant that I can travel with. Here is a link to info: http://www.medslant.com/ Good luck to you. Terry From: achalasia [mailto:achalasia ] On Behalf Of Hulmes Sent: Monday, March 28, 2011 7:09 AM achalasia Subject: 's latest Hi All I saw my General Practitioner this morning for a chat. He had the results from last Monday's Dilatation and endoscopy. Although the swallowing is much the same as pre dilatation, the reflux is worse if anything and he is not happy that i have to wait until May 23rd to see the surgeon for review. So he is sending him a request letter that i be seen sooner. I have had the most horrendus night with the reflux and i don't care what anyone says i simply cannot put up with it any longer without help. I am on Nexium 40mg in the morning and the same of an evening plus i am on the maximum dose of Gaviscon (this last one helps a little but not much). The referred pain that i get im my back with the swallowing difficulty is back almost full force and the thing is i cannot take antinnflamitories for that pain as i have a history with ulcers. I wait with baited breath for a newer appointment that the May 23rd on to pop through my letterbox. from the UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Many Thanks to Tim & Kay for their support and to the rest of the group. It seems to be the norm with me now to have these very disruptive nughts where i have to sit up either in bed or on the side from about 1am. By the time i have to get up at about 6.30-6.45 i am knackered for the day and quite often find myself nodding off for a snooze mid afternoon. Never mind, i shall take it one day at a time and hope for the best that i can get an earlier appointment before May 23rd to see the surgeon. And i know what he will say. He will talk even more about the Roux-En-Y Diversion operation and to be truthfully honest i would have it done tomorrow if i could but it needs carefull thought before having such an operation that could make things worse and not better for me. from the UK From: Tim <timwilson12@...> achalasia Sent: Monday, March 28, 2011 6:02 PM Subject: Re: Re: 's latest  Hi , I wish there was some magic thing that I could suggest that would ease your troubles instantlty, but the truth is I have nothing to suggest other than keep going. One of the tricks about being assertive and getting the help you need is to be a " broken record " and keep seeking early appointments/the best people to see you until you get satisfaction. I am thinking of you and you are in my thoughts/prayers that your quality of life improves. Always remember that it should not be like this and that you deserve a good life and not have to put up with this S**t that is the legacy of your Achalasia. regards tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Hi Terry Yes, i sleep with a wedge pillow. I also have the head of the bed up on blocks of wood and i use 4 sometimes 5 pillows. So you can imagine how upright i am. I also have to use a smaller wedge behind my knees to stop me from sliding down the bed. from the UK From: Terry <Terry@...> achalasia Sent: Monday, March 28, 2011 10:02 PM Subject: Re: 's latest  Hi , Are you sleeping with a wedge pillow? That can really make a difference at night. I now have a folding wedge pillow by MedSlant that I can travel with. Here is a link to info: http://www.medslant.com/ Good luck to you. Terry From: achalasia [mailto:achalasia ] On Behalf Of Hulmes Sent: Monday, March 28, 2011 7:09 AM achalasia Subject: 's latest Hi All I saw my General Practitioner this morning for a chat. He had the results from last Monday's Dilatation and endoscopy. Although the swallowing is much the same as pre dilatation, the reflux is worse if anything and he is not happy that i have to wait until May 23rd to see the surgeon for review. So he is sending him a request letter that i be seen sooner. I have had the most horrendus night with the reflux and i don't care what anyone says i simply cannot put up with it any longer without help. I am on Nexium 40mg in the morning and the same of an evening plus i am on the maximum dose of Gaviscon (this last one helps a little but not much). The referred pain that i get im my back with the swallowing difficulty is back almost full force and the thing is i cannot take antinnflamitories for that pain as i have a history with ulcers. I wait with baited breath for a newer appointment that the May 23rd on to pop through my letterbox. from the UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 , I am so sorry to hear you are having such problems. I do hope and pray you can get some relief soon. InVA Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 Thank you Kay for replying to my post. Yes, you are right in that it is relentless and there doesn't seem to be an end to it does there. I hope my dilatation works tomorrow or i'm faced with an operation on the ectomy scar tissue. But i'll find out about that on the 23rd May (a week tomorrow). Good Luck in your dilatation and i hope all goes well with you. from the UK From: Kay Davies <kayf.davies@...> achalasia Sent: Saturday, May 14, 2011 9:53 PM Subject: Re: 's latest  Hi I will be thinking of you. I am sorry that you have to go through this again. I too am booked for a balloon dilatation to stretch the upper sphincter muscle at the top of my oesophagus. I am desperate for some relief so really hope this works. I had a really low day today as I am very tired and find things so much harder to deal with when I am like this. It is the relentlessness of it all. All the very best to you. Kay xx > > Hi All > Just heard through the post this morning that my Dilatation is booked for this coming Monday May 16th for 10.30am and that the outpatient appointment to see surgeon is booked for Monday 23rd 10.00am. So things are moving swiftly now. > from the UK > > From: Hulmes <christine.hulmes@...> > " achalasia " <achalasia > > Sent: Thursday, May 12, 2011 8:53 AM > Subject: 's latest > > >  > Well i went to the earlier appointment on monday and the news was not good. The surgeon told me that the last dilatation when the baloon burst did not work and that he wnats me to have a repeat endoscopy/dilatation within the next 2-3 weeks then see him in clinic a week after that. When i have a date and time for the dilatation fixed i was asked by the surgeon to phone his office to ask his secretary (he has left an urgent note in my notes for the secretary about this) to arrange an urgent appointment to see him in clinic ASAP after the dilatation. If the endoscopy team cannot dilate the stricture in my throat any bigger than 20mm then he tells me that i will need an operation to either cut or laser the scar tissue. this will be discussed in clinic when i see him after the dilatation. > I left the clinic not expecting to have to think about an operation on the stricture but i was told that it is very rare for the baloon to burst and can happen again as in my case the scar tissue in the old ectomy anastomosis is very hard and will need operation if it cannot be stretched. > from the UK > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Hi . I just wanted to let you know that I have been praying for you today. I do hope today was more successful than the last time and that you are in better shape. Take care of yourself and lots of tlc. Much love Kay > > > > Hi All > > Just heard through the post this morning that my Dilatation is booked for this coming Monday May 16th for 10.30am and that the outpatient appointment to see surgeon is booked for Monday 23rd 10.00am. So things are moving swiftly now. > > from the UK > > > > From: Hulmes <christine.hulmes@> > > " achalasia " <achalasia > > > Sent: Thursday, May 12, 2011 8:53 AM > > Subject: 's latest > > > > > >  > > Well i went to the earlier appointment on monday and the news was not good. The surgeon told me that the last dilatation when the baloon burst did not work and that he wnats me to have a repeat endoscopy/dilatation within the next 2-3 weeks then see him in clinic a week after that. When i have a date and time for the dilatation fixed i was asked by the surgeon to phone his office to ask his secretary (he has left an urgent note in my notes for the secretary about this) to arrange an urgent appointment to see him in clinic ASAP after the dilatation. If the endoscopy team cannot dilate the stricture in my throat any bigger than 20mm then he tells me that i will need an operation to either cut or laser the scar tissue. this will be discussed in clinic when i see him after the dilatation. > > I left the clinic not expecting to have to think about an operation on the stricture but i was told that it is very rare for the baloon to burst and can happen again as in my case the scar tissue in the old ectomy anastomosis is very hard and will need operation if it cannot be stretched. > > from the UK > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Hi Poor you, this all sounds relentless and must get you down. this really is a rubbish condition. My surgeon is pretty sure that I have some additional condition causing the spasms in my upper gullet as often they overlap (I didn't get into what these other conditions are - can't always deal with everything in one go and I will get to see him again soon). Are you able to relax and pamper yourself a bit or are you losing the will a bit? I don't know what to say except I do hope you get some relief soon. All the best Kay > > > > > > Hi All > > > Just heard through the post this morning that my Dilatation is booked for this coming Monday May 16th for 10.30am and that the outpatient appointment to see surgeon is booked for Monday 23rd 10.00am. So things are moving swiftly now. > > > from the UK > > > > > > From: Hulmes <christine.hulmes@> > > > " achalasia " <achalasia > > > > Sent: Thursday, May 12, 2011 8:53 AM > > > Subject: 's latest > > > > > > > > >  > > > Well i went to the earlier appointment on monday and the news was not good. The surgeon told me that the last dilatation when the baloon burst did not work and that he wnats me to have a repeat endoscopy/dilatation within the next 2-3 weeks then see him in clinic a week after that. When i have a date and time for the dilatation fixed i was asked by the surgeon to phone his office to ask his secretary (he has left an urgent note in my notes for the secretary about this) to arrange an urgent appointment to see him in clinic ASAP after the dilatation. If the endoscopy team cannot dilate the stricture in my throat any bigger than 20mm then he tells me that i will need an operation to either cut or laser the scar tissue. this will be discussed in clinic when i see him after the dilatation. > > > I left the clinic not expecting to have to think about an operation on the stricture but i was told that it is very rare for the baloon to burst and can happen again as in my case the scar tissue in the old ectomy anastomosis is very hard and will need operation if it cannot be stretched. > > > from the UK > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Kay Many thanks for your vote of confidence in me. I try to find something to do to keep my mind occupied instead of dwelling on the negative all the time and yes, i do pamper myself occasionally. Will let everyone know how things go when i see the surgeon next Monday in Liverpool. from the UK From: Kay Davies <kayf.davies@...> achalasia Sent: Tuesday, May 17, 2011 8:56 PM Subject: Re: 's latest  Hi Poor you, this all sounds relentless and must get you down. this really is a rubbish condition. My surgeon is pretty sure that I have some additional condition causing the spasms in my upper gullet as often they overlap (I didn't get into what these other conditions are - can't always deal with everything in one go and I will get to see him again soon). Are you able to relax and pamper yourself a bit or are you losing the will a bit? I don't know what to say except I do hope you get some relief soon. All the best Kay > > > > > > Hi All > > > Just heard through the post this morning that my Dilatation is booked for this coming Monday May 16th for 10.30am and that the outpatient appointment to see surgeon is booked for Monday 23rd 10.00am. So things are moving swiftly now. > > > from the UK > > > > > > From: Hulmes <christine.hulmes@> > > > " achalasia " <achalasia > > > > Sent: Thursday, May 12, 2011 8:53 AM > > > Subject: 's latest > > > > > > > > >  > > > Well i went to the earlier appointment on monday and the news was not good. The surgeon told me that the last dilatation when the baloon burst did not work and that he wnats me to have a repeat endoscopy/dilatation within the next 2-3 weeks then see him in clinic a week after that. When i have a date and time for the dilatation fixed i was asked by the surgeon to phone his office to ask his secretary (he has left an urgent note in my notes for the secretary about this) to arrange an urgent appointment to see him in clinic ASAP after the dilatation. If the endoscopy team cannot dilate the stricture in my throat any bigger than 20mm then he tells me that i will need an operation to either cut or laser the scar tissue. this will be discussed in clinic when i see him after the dilatation. > > > I left the clinic not expecting to have to think about an operation on the stricture but i was told that it is very rare for the baloon to burst and can happen again as in my case the scar tissue in the old ectomy anastomosis is very hard and will need operation if it cannot be stretched. > > > from the UK > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Hi , I was just wondering if you had rung the Oesophageal Patients Association helpline 0121 - 7049860 for any advice about your situation or just someone to talk to who understands about esophagectomies. Thinking of you and praying that you get some relief soon. regards tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Hi Tim How are things with you? No i have not contacted The Oesophageal Patients Association yet as i am waiting to see the surgeon next Monday and wait to see what he says. The GI who did the endoscopy on me this last Monday says that he is recomending to the surgeon that i have a Barium Swallow to see what the hold up is at the bottom of the stomach tube in my chest. Also he recomends that should the Barium show a holdup in the anastomosis in my neck then he recomends that i have a large balloon dilatation. The thing is the GI took 4 biopsies from an abnormal looking fold of skin near where the stomach fundus should be but is now just below the anastomosis if you know what i mean. So there are things going on and like i said i shall have a chat with the surgeon on monday and see what he says and should i remain unsatisfied with the answers to my questions then i shall consider contacting The Oesophageal Patients Assoc. You know the Association helped me enormously in the past when i was first diagnosed with Achalasia when i was stuck on medication for over 2 years before i had a surgeons contact details from them to have the Oesophageal Myotomy before the ectomy. Nevertheless my swallowing remains patchy at best and despite what treatment i am having now i still only managing to eat a small meal at lunchtime and a small snack at teatime. I simply cannot swallow any more solids than that so i rely on my jejunostomy overnight feeds for nourishment and to help stabailise my weight. The reflux because of a holdup in my stomach (in my chest) remains a major problem which i hope will be thrashed out next Monday in clinic and if i am not happy with what he says then i just might contact the Oesophageal Patients Association for advice. I must remember however that the surgeon who is looking after me now is very experienced in Achalasia and its problems and i feel that i do not want to gain a reputation for going against what he advises but i shall see! I shall keep in touch whith you and the rest of the group when i have seen the surgeon. Thank you for your continuing support which is very important to me as i remain in the dark as regards surgical treatment for continuing swallowing problems. from the UK From: Tim <timwilson12@...> achalasia Sent: Wednesday, May 18, 2011 6:49 PM Subject: Re: 's latest  Hi , I was just wondering if you had rung the Oesophageal Patients Association helpline 0121 - 7049860 for any advice about your situation or just someone to talk to who understands about esophagectomies. Thinking of you and praying that you get some relief soon. regards tim Quote Link to comment Share on other sites More sharing options...
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