Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 well here we go again...i spent 6 weeks off mtx to take care of my elderly mother after a quad bypass......i did this because the mtx makes me sick and makes me sleep and i needed to hear her breathing and if she needed me........... well...that was in march and april and now i pay for it! My ankle is blown out.....I am again in a boot and back on more mtx than before and predisone too......i am on crutches again........... now of course i did good while the ss board was looking at all of my records and got worse just after they had my hearing...........so i sot without a job.....any money...a broken car....mom still sick....with my back and ankles killing me.... what a year! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 ,  We share a similar history and unfortunately our swallowing ability continues in a similar way. I too had an HM with Rice in 2010 and I struggle with eating. I just had another dilation. Its been at least 1 a year since the proceedure. Its frustrating because I think I'm very careful with how, what and when I eat. The last time I spoke with the good doctor he casually said that the next step is an ectomy. That may be the reality I'm facing, although I'm not ready to go there yet. Today was a good day and its encouraging. Please let us know what you find out from your GI. Santa Fe  ________________________________ From: erin_lievens <erinl@...> achalasia Sent: Monday, May 21, 2012 3:52 PM Subject: Re: Here again  Hi , I don't have any advice to give you- this is all still new to me and I haven't had my HM yet, but I just wanted to say that I'm sorry that this is happening. I know that there are people on here who have had trouble following their HM, so I hope they can help you. Best of luck to you- I hope your doctors can find a solution for you! Take care, > > Hello again fellow Achalasia sufferers. I have non posted in almost 2 years due to the fact that I thought I was " in the clear " with this disease. In October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice at the Cleveland Clinic. That said, I have absolute faith and certainty that it was performed correctly and without error and Dr Rice is arguably the best there is. > > I say all of that to say that here I sit nearly 18 months later and many of my symptoms are beginning to come back. Food has always, even before surgery, gone into my stomach (they were not sure why the disease never progressed to completely close my LES.) The major problem I have is that I am beginning to have cramps and aches and some sharp pains soon after eating. Same as I have two years ago. Eating nearly wipes me completely out and I feel that I have no strength or energy to do anything after eating even a small amount. I have also started to have pretty severe asthma again...(which they say is not related to Achalasia). I never have had asthma, only when I am going through a rough patch of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food up to 6 hours after eating, etc. > > I have an appointment set up with a gastroentorologist next month at the Cleveland Clinic, and was wondering if anyone else has experience this type of " lapse " this soon after surgery and if so what happened. Did you have to redo treatment, either with another Lap Heller or dilation? Did you find that it was simply a horrible spasm that eventually went away? > > I am convinced that the food is actually going down into my stomach which is puzzling to me as I still have discomfort? > > Any thoughts or ideas on what to discuss with the Dr would be wonderful! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 I am a newer member of this group and read with interest all posts. I was diagnosed in August of 2005 at the Cleveland Clinic. I have had 2 dilations.....no success. Met with Dr. Rice, but to date, have done nothing further. I am 68 pounds lighter than the day I was diagnosed. Now wear a size 2.  I am so fearful to move forward with Dr. Rice....to some degree because of the failures discussed below.  Could someone speak to what happens to those of us who do nothing? (other than getting thinner and thinner).  I have issues with almost every food/soup etc.  About the only thing I can eat without it coming back up is Junior Mints......a lovely diet.  Thanks for reading.  Christa Ohio >________________________________ > From: Ottenheimer <hmottenheimer@...> > " achalasia " <achalasia > >Sent: Monday, May 21, 2012 9:58 PM >Subject: Re: Re: Here again > > > > > >, > >We share a similar history and unfortunately our swallowing ability continues in a similar way. I too had an HM with Rice in 2010 and I struggle with eating. I just had another dilation. Its been at least 1 a year since the proceedure. Its frustrating because I think I'm very careful with how, what and when I eat. The last time I spoke with the good doctor he casually said that the next step is an ectomy. That may be the reality I'm facing, although I'm not ready to go there yet. Today was a good day and its encouraging. Please let us know what you find out from your GI. > >Santa Fe > > >________________________________ >From: erin_lievens <erinl@...> >achalasia >Sent: Monday, May 21, 2012 3:52 PM >Subject: Re: Here again > > >Hi , > >I don't have any advice to give you- this is all still new to me and I haven't had my HM yet, but I just wanted to say that I'm sorry that this is happening. I know that there are people on here who have had trouble following their HM, so I hope they can help you. > >Best of luck to you- I hope your doctors can find a solution for you! > >Take care, > > > >> >> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years due to the fact that I thought I was " in the clear " with this disease. In October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice at the Cleveland Clinic. That said, I have absolute faith and certainty that it was performed correctly and without error and Dr Rice is arguably the best there is. >> >> I say all of that to say that here I sit nearly 18 months later and many of my symptoms are beginning to come back. Food has always, even before surgery, gone into my stomach (they were not sure why the disease never progressed to completely close my LES.) The major problem I have is that I am beginning to have cramps and aches and some sharp pains soon after eating. Same as I have two years ago. Eating nearly wipes me completely out and I feel that I have no strength or energy to do anything after eating even a small amount. I have also started to have pretty severe asthma again...(which they say is not related to Achalasia). I never have had asthma, only when I am going through a rough patch of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food up to 6 hours after eating, etc. >> >> I have an appointment set up with a gastroentorologist next month at the Cleveland Clinic, and was wondering if anyone else has experience this type of " lapse " this soon after surgery and if so what happened. Did you have to redo treatment, either with another Lap Heller or dilation? Did you find that it was simply a horrible spasm that eventually went away? >> >> I am convinced that the food is actually going down into my stomach which is puzzling to me as I still have discomfort? >> >> Any thoughts or ideas on what to discuss with the Dr would be wonderful! >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 <Christa wrote: <I am a newer member of this group and read with interest all posts. I was diagnosed in <August of 2005 at the Cleveland Clinic. I have had 2 dilations.....no success. Met with Dr. <Rice, but to date, have done nothing further. I am 68 pounds lighter than the day I was <diagnosed. Now wear a size 2. I am so fearful to move forward with Dr. Rice....to some <degree because of the failures discussed below. <Could someone speak to what happens to those of us who do nothing? (other than getting <thinner and thinner). I have issues with almost every food/soup etc. About the only thing I <can eat without it coming back up is Junior Mints......a lovely diet. Don´t be scared of the HM. Statistically the successrate is 90%, that doesn´t mean that therafter you have no symtoms left, but you are much much better of. It depends however, how dilated your esophagus is in the meantime and what subtype of achalasia you have. If you do nothing, your esophgus get stretched and if you then decide to do the HM the result is not as good. I was operated in May 2009 and I don´t regret it, can eat everything. I think most of the successfull operated will not write here. They forgot (will forget),that they still have achalasia (with now nearly no symtoms). a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 Welcome Christa!  I totally understand your concerns about all the " what if's " when it comes to surgery of this nature, mostly the thought of what if I get worse off. I have had symptoms of achalasia since 1988, thats when it started. Mine progressed quickly to the stage that things were contantly stuck, I needed lots of liquid to power push food down. I also would regurg food, but at that time it was not at every meal....I coped with it and tried telling doctors back then about my issues, only to be told that it was " reflux, stress or I should just eat slower " ...can you believe that?? I found this group in about 2006, that was the first time in my life that I met another soul that could relate.  In 2010 I had the HM with Dor, I had my surgery at UCLA and did my research. Much depends on the condition of your esophagus...the longer one waits the more damage could be done so waiting is not always a good thing! I researched alot, so my main concern was finding a top notch surgeon who did this surgery with great success and nothing less than that would I ever consider. Also when I read about myotomy, the biggest reason for failure seemed to the the actual " cut " and making sure that the cut is long enough, otherwise you are back in the same boat. I drilled my surgeon to explain to me the length of the cut she would use....I wanted specific's...she does a longer cut and felt that her patients found overall good success and most had no " heartburn or need for PPI's in the future. My surgery thankfully went like clockwork and I am doing great now, swallowing and eating as near normal as possible, I'm extremely glad that it was done and done right.  This disorder does progress over time, your esophagus changes and thats when things can get worse and surgery may not help. Please educate yourself and TALK to these doc's and be specific about how and what they do in surgery...then make your decision...  Wishing you all the best...Dr. Rice is a good doc and so is Dr. Patti...many more that I don't even know there names, but you must research and this group is very helpful.  All the best,  Julee ( now from Oregon)   ________________________________ From: Christa D. Deegan <christa1110@...> " achalasia " <achalasia > Sent: Monday, May 21, 2012 7:12 PM Subject: Re: Re: Here again  I am a newer member of this group and read with interest all posts. I was diagnosed in August of 2005 at the Cleveland Clinic. I have had 2 dilations.....no success. Met with Dr. Rice, but to date, have done nothing further. I am 68 pounds lighter than the day I was diagnosed. Now wear a size 2.  I am so fearful to move forward with Dr. Rice....to some degree because of the failures discussed below.  Could someone speak to what happens to those of us who do nothing? (other than getting thinner and thinner).  I have issues with almost every food/soup etc.  About the only thing I can eat without it coming back up is Junior Mints......a lovely diet.  Thanks for reading.  Christa Ohio >________________________________ > From: Ottenheimer <hmottenheimer@...> > " achalasia " <achalasia > >Sent: Monday, May 21, 2012 9:58 PM >Subject: Re: Re: Here again > > > > > >, > >We share a similar history and unfortunately our swallowing ability continues in a similar way. I too had an HM with Rice in 2010 and I struggle with eating. I just had another dilation. Its been at least 1 a year since the proceedure. Its frustrating because I think I'm very careful with how, what and when I eat. The last time I spoke with the good doctor he casually said that the next step is an ectomy. That may be the reality I'm facing, although I'm not ready to go there yet. Today was a good day and its encouraging. Please let us know what you find out from your GI. > >Santa Fe > > >________________________________ >From: erin_lievens <erinl@...> >achalasia >Sent: Monday, May 21, 2012 3:52 PM >Subject: Re: Here again > > >Hi , > >I don't have any advice to give you- this is all still new to me and I haven't had my HM yet, but I just wanted to say that I'm sorry that this is happening. I know that there are people on here who have had trouble following their HM, so I hope they can help you. > >Best of luck to you- I hope your doctors can find a solution for you! > >Take care, > > > >> >> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years due to the fact that I thought I was " in the clear " with this disease. In October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice at the Cleveland Clinic. That said, I have absolute faith and certainty that it was performed correctly and without error and Dr Rice is arguably the best there is. >> >> I say all of that to say that here I sit nearly 18 months later and many of my symptoms are beginning to come back. Food has always, even before surgery, gone into my stomach (they were not sure why the disease never progressed to completely close my LES.) The major problem I have is that I am beginning to have cramps and aches and some sharp pains soon after eating. Same as I have two years ago. Eating nearly wipes me completely out and I feel that I have no strength or energy to do anything after eating even a small amount. I have also started to have pretty severe asthma again...(which they say is not related to Achalasia). I never have had asthma, only when I am going through a rough patch of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food up to 6 hours after eating, etc. >> >> I have an appointment set up with a gastroentorologist next month at the Cleveland Clinic, and was wondering if anyone else has experience this type of " lapse " this soon after surgery and if so what happened. Did you have to redo treatment, either with another Lap Heller or dilation? Did you find that it was simply a horrible spasm that eventually went away? >> >> I am convinced that the food is actually going down into my stomach which is puzzling to me as I still have discomfort? >> >> Any thoughts or ideas on what to discuss with the Dr would be wonderful! >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 thank you julie~  one more question for the group...........since the retirement of dr achkar at the cleveland clinic, does anyone know or have a recommendation at the clinic for a doctor?  thank you to all.  christa >________________________________ > From: Montoya <medhelpinfo@...> > " achalasia " <achalasia > >Sent: Tuesday, May 22, 2012 6:12 PM >Subject: Re: Re: Here again > > > > > >Welcome Christa! > >I totally understand your concerns about all the " what if's " when it comes to surgery of this nature, mostly the thought of what if I get worse off. I have had symptoms of achalasia since 1988, thats when it started. Mine progressed quickly to the stage that things were contantly stuck, I needed lots of liquid to power push food down. I also would regurg food, but at that time it was not at every meal....I coped with it and tried telling doctors back then about my issues, only to be told that it was " reflux, stress or I should just eat slower " ...can you believe that?? I found this group in about 2006, that was the first time in my life that I met another soul that could relate. > >In 2010 I had the HM with Dor, I had my surgery at UCLA and did my research. Much depends on the condition of your esophagus...the longer one waits the more damage could be done so waiting is not always a good thing! I researched alot, so my main concern was finding a top notch surgeon who did this surgery with great success and nothing less than that would I ever consider. Also when I read about myotomy, the biggest reason for failure seemed to the the actual " cut " and making sure that the cut is long enough, otherwise you are back in the same boat. I drilled my surgeon to explain to me the length of the cut she would use....I wanted specific's...she does a longer cut and felt that her patients found overall good success and most had no " heartburn or need for PPI's in the future. My surgery thankfully went like clockwork and I am doing great now, swallowing and eating as near normal as possible, I'm extremely glad that it was done and done >right. > >This disorder does progress over time, your esophagus changes and thats when things can get worse and surgery may not help. Please educate yourself and TALK to these doc's and be specific about how and what they do in surgery...then make your decision... > >Wishing you all the best...Dr. Rice is a good doc and so is Dr. Patti...many more that I don't even know there names, but you must research and this group is very helpful. > >All the best, > >Julee ( now from Oregon) > > > > >________________________________ >From: Christa D. Deegan <christa1110@...> > " achalasia " <achalasia > >Sent: Monday, May 21, 2012 7:12 PM >Subject: Re: Re: Here again > > > > >I am a newer member of this group and read with interest all posts. I was diagnosed in August of 2005 at the Cleveland Clinic. I have had 2 dilations.....no success. Met with Dr. Rice, but to date, have done nothing further. I am 68 pounds lighter than the day I was diagnosed. Now wear a size 2.  I am so fearful to move forward with Dr. Rice....to some degree because of the failures discussed below. > >Could someone speak to what happens to those of us who do nothing? (other than getting thinner and thinner).  I have issues with almost every food/soup etc.  About the only thing I can eat without it coming back up is Junior Mints......a lovely diet. > >Thanks for reading. > >Christa >Ohio > >>________________________________ >> From: Ottenheimer <hmottenheimer@...> >> " achalasia " <achalasia > >>Sent: Monday, May 21, 2012 9:58 PM >>Subject: Re: Re: Here again >> >> >> >> >> >>, >> >>We share a similar history and unfortunately our swallowing ability continues in a similar way. I too had an HM with Rice in 2010 and I struggle with eating. I just had another dilation. Its been at least 1 a year since the proceedure. Its frustrating because I think I'm very careful with how, what and when I eat. The last time I spoke with the good doctor he casually said that the next step is an ectomy. That may be the reality I'm facing, although I'm not ready to go there yet. Today was a good day and its encouraging. Please let us know what you find out from your GI. >> >>Santa Fe >> >> >>________________________________ >>From: erin_lievens <erinl@...> >>achalasia >>Sent: Monday, May 21, 2012 3:52 PM >>Subject: Re: Here again >> >> >>Hi , >> >>I don't have any advice to give you- this is all still new to me and I haven't had my HM yet, but I just wanted to say that I'm sorry that this is happening. I know that there are people on here who have had trouble following their HM, so I hope they can help you. >> >>Best of luck to you- I hope your doctors can find a solution for you! >> >>Take care, >> >> >> >>> >>> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years due to the fact that I thought I was " in the clear " with this disease. In October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice at the Cleveland Clinic. That said, I have absolute faith and certainty that it was performed correctly and without error and Dr Rice is arguably the best there is. >>> >>> I say all of that to say that here I sit nearly 18 months later and many of my symptoms are beginning to come back. Food has always, even before surgery, gone into my stomach (they were not sure why the disease never progressed to completely close my LES.) The major problem I have is that I am beginning to have cramps and aches and some sharp pains soon after eating. Same as I have two years ago. Eating nearly wipes me completely out and I feel that I have no strength or energy to do anything after eating even a small amount. I have also started to have pretty severe asthma again...(which they say is not related to Achalasia). I never have had asthma, only when I am going through a rough patch of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food up to 6 hours after eating, etc. >>> >>> I have an appointment set up with a gastroentorologist next month at the Cleveland Clinic, and was wondering if anyone else has experience this type of " lapse " this soon after surgery and if so what happened. Did you have to redo treatment, either with another Lap Heller or dilation? Did you find that it was simply a horrible spasm that eventually went away? >>> >>> I am convinced that the food is actually going down into my stomach which is puzzling to me as I still have discomfort? >>> >>> Any thoughts or ideas on what to discuss with the Dr would be wonderful! >>> >>> >>> >> >> Quote Link to comment Share on other sites More sharing options...
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