Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Hi Lynne, I also had the manometry test done before we concluded that it was achalasia. In any case, I spoke to the GI specialist who suggested botox for immediate relief. Reading through the medical articles, botox is considered only for folks who are not surgical candidates, maybe > 60-70 yrs. For folks below 40 years, surgery is the recommended option. I also spoke to a thoracic surgeon ( Dr. Farzaneh Banki in Houston) who is an expert in the esophageal motility disorders ( kind of like a surgeon and specialist wrapped in one). She recommended the surgery, but indicated that that was not the only option. She also suggested that there was no harm in trying the dilation once, but it would make sense to go for the surgery if the symptoms come back. I am also planning to have the dilation done before Christmas. It is recommended to have it done by specialists who do it a lot. Best of luck and wish the same for me. Regards, Santosh > > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Thanks Santosh! I hope your dilation is very successful! We can compare notes so to speak in the new year. I was wondering if I should have my gi do it or try to find someone who has dilated a lot of achalasia patients. I didn't think to ask her. Is that easy to find? She mentioned botox as an option but recommended that I not get that procedure done. I am just under the 40 year mark at 38 so maybe I will luck out with the dilation! Lynn > > > > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 This seems to be a very reasonable approach as the long term success both in dilatation and HM is no different. It is possible that you may get long term relief after the dilatation alone and it is possible that in the mean time there might be better options. A new technique is being tried in Japan for some time. It is called POEM (Per Orum Endoscopic Myotomy). The surgeon claims it is very successful but the follow up has been for about 12 months which is enough in achalasia as it tends to recur even after HM. My daughter is having dilatation done in south Carolina later this month and we are traveling from UK to get it done. Be positive anil achalasia From: lynnej73@... Date: Wed, 7 Dec 2011 01:54:30 +0000 Subject: Spoke with dr. today My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Lynne, Getting a person who does the dilation a lot improves the chances of preventing perforation in the esophagus ( which is the primary concern). So, a person specializing in esophageal disorders is always preferable. These experts are typically available in the closest teaching medical hospitals. I live in Austin, Texas and I could find 2 in Houston and none in Austin. Most of these GI specialists will have esophageal motility or achalasia in their bios. The biggest issue will be getting an appointment and then having the procedure. The dilation itself is not a very complicated procedure. Regards, Santosh > > > > > > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 I am not sure that there are enough studies with the new approaches to the HM to compare it against the long term effectiveness of dilation. My surgeon believes that often times HM as they were done in the past did not extend far enough onto the stomach and up high enough on the esophagus, which often leads to a recurrence of dysphagia over time. ________________________________ From: Anil Kumar Gupta <anil_gupta70@...> achalasia Sent: Tuesday, December 6, 2011 7:31 PM Subject: RE: Spoke with dr. today This seems to be a very reasonable approach as the long term success both in dilatation and HM is no different. It is possible that you may get long term relief after the dilatation alone and it is possible that in the mean time there might be better options. A new technique is being tried in Japan for some time. It is called POEM (Per Orum Endoscopic Myotomy). The surgeon claims it is very successful but the follow up has been for about 12 months which is enough in achalasia as it tends to recur even after HM. My daughter is having dilatation done in south Carolina later this month and we are traveling from UK to get it done. Be positive anil achalasia From: lynnej73@... Date: Wed, 7 Dec 2011 01:54:30 +0000 Subject: Spoke with dr. today My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 You are right. There are not enough studies to compare it with HM. The success and the complication rate with HM are very much dependent on the surgeons experience. That makes it all the more important to find the most experienced surgeon achalasia From: matbjj@... Date: Wed, 7 Dec 2011 23:22:15 -0800 Subject: Re: Spoke with dr. today I am not sure that there are enough studies with the new approaches to the HM to compare it against the long term effectiveness of dilation. My surgeon believes that often times HM as they were done in the past did not extend far enough onto the stomach and up high enough on the esophagus, which often leads to a recurrence of dysphagia over time. ________________________________ From: Anil Kumar Gupta <anil_gupta70@...> achalasia Sent: Tuesday, December 6, 2011 7:31 PM Subject: RE: Spoke with dr. today This seems to be a very reasonable approach as the long term success both in dilatation and HM is no different. It is possible that you may get long term relief after the dilatation alone and it is possible that in the mean time there might be better options. A new technique is being tried in Japan for some time. It is called POEM (Per Orum Endoscopic Myotomy). The surgeon claims it is very successful but the follow up has been for about 12 months which is enough in achalasia as it tends to recur even after HM. My daughter is having dilatation done in south Carolina later this month and we are traveling from UK to get it done. Be positive anil achalasia From: lynnej73@... Date: Wed, 7 Dec 2011 01:54:30 +0000 Subject: Spoke with dr. today My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 Hi Lynn,  I am trying to catch up on emails here and seen this one. It does sound reasonable however, the two tests used to determine if it is Achaklasia are the barium and mannometry. Did you have that yet? I was dilated about 5 weeks ago and had to go back for Mannometry last Friday. This test the pressure in the Esophagus and might I add is extremely uncomfortable. I have to do the barium swallow again next Monday and then I don't go back again for a year, providing there are no problems. My GI also did not want to go too extreme and wanted to start off with dilation first. They told me it should last 1-5 years but we are all different. Mine seemed to go pretty well but do some resear ch on your doctor There are so few doctors who know what this is or even better yet can actually treat it. While there is no cure, our best defense can be having a doctor with experience in treating the symptoms. Hope all goes well!  Kim in Kenosha ________________________________ From: lynnej73 <lynnej73@...> achalasia Sent: Tuesday, December 6, 2011 7:54 PM Subject: Spoke with dr. today  My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 Thanks Kim. I don't know why my dr. is not having me do the manometry. When I asked about other tests, she said she was confident from the report and seeing the barium pictures that it was achalasia. Plus, I had a clean scope in early October. She mentioned manometry after I had the scope as a possible test if I didn't improve with prevacid. I could tell by the way she said it and the look on her face that it wasn't pleasant so maybe (right or wrong?) she only does it if she is on the fence with diagnosis? I am trying the dilation with my dr. I trust her and don't think she would steer me wrong and I think she would recommend another dr. if she felt it would be better for me. I could be naive but that is where I'm at right now. If it does not work, I will find a specialist in Pittsburgh to do the myotomy. I am lucky to live so close to surgical specialists. Did you have any pain after your dilation? Lynn > > Hi Lynn, >  > I am trying to catch up on emails here and seen this one. It does sound reasonable however, the two tests used to determine if it is Achaklasia are the barium and mannometry. Did you have that yet? I was dilated about 5 weeks ago and had to go back for Mannometry last Friday. This test the pressure in the Esophagus and might I add is extremely uncomfortable. I have to do the barium swallow again next Monday and then I don't go back again for a year, providing there are no problems. My GI also did not want to go too extreme and wanted to start off with dilation first. They told me it should last 1-5 years but we are all different. Mine seemed to go pretty well but do some resear ch on your doctor There are so few doctors who know what this is or even better yet can actually treat it. While there is no cure, our best defense can be having a doctor with experience in treating the symptoms. > Hope all goes well! >  > Kim in Kenosha > > > ________________________________ > From: lynnej73 <lynnej73@...> > achalasia > Sent: Tuesday, December 6, 2011 7:54 PM > Subject: Spoke with dr. today > > >  > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 Which State are you in Lynn? ________________________________ From: lynnej73 <lynnej73@...> achalasia Sent: Monday, December 12, 2011 2:45 PM Subject: Re: Spoke with dr. today  Thanks Kim. I don't know why my dr. is not having me do the manometry. When I asked about other tests, she said she was confident from the report and seeing the barium pictures that it was achalasia. Plus, I had a clean scope in early October. She mentioned manometry after I had the scope as a possible test if I didn't improve with prevacid. I could tell by the way she said it and the look on her face that it wasn't pleasant so maybe (right or wrong?) she only does it if she is on the fence with diagnosis? I am trying the dilation with my dr. I trust her and don't think she would steer me wrong and I think she would recommend another dr. if she felt it would be better for me. I could be naive but that is where I'm at right now. If it does not work, I will find a specialist in Pittsburgh to do the myotomy. I am lucky to live so close to surgical specialists. Did you have any pain after your dilation? Lynn > > Hi Lynn, >  > I am trying to catch up on emails here and seen this one. It does sound reasonable however, the two tests used to determine if it is Achaklasia are the barium and mannometry. Did you have that yet? I was dilated about 5 weeks ago and had to go back for Mannometry last Friday. This test the pressure in the Esophagus and might I add is extremely uncomfortable. I have to do the barium swallow again next Monday and then I don't go back again for a year, providing there are no problems. My GI also did not want to go too extreme and wanted to start off with dilation first. They told me it should last 1-5 years but we are all different. Mine seemed to go pretty well but do some resear ch on your doctor There are so few doctors who know what this is or even better yet can actually treat it. While there is no cure, our best defense can be having a doctor with experience in treating the symptoms. > Hope all goes well! >  > Kim in Kenosha > > > ________________________________ > From: lynnej73 <lynnej73@...> > achalasia > Sent: Tuesday, December 6, 2011 7:54 PM > Subject: Spoke with dr. today > > >  > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 Pennsylvania...near pittsburgh > > > > Hi Lynn, > >  > > I am trying to catch up on emails here and seen this one. It does sound reasonable however, the two tests used to determine if it is Achaklasia are the barium and mannometry. Did you have that yet? I was dilated about 5 weeks ago and had to go back for Mannometry last Friday. This test the pressure in the Esophagus and might I add is extremely uncomfortable. I have to do the barium swallow again next Monday and then I don't go back again for a year, providing there are no problems. My GI also did not want to go too extreme and wanted to start off with dilation first. They told me it should last 1-5 years but we are all different. Mine seemed to go pretty well but do some resear ch on your doctor There are so few doctors who know what this is or even better yet can actually treat it. While there is no cure, our best defense can be having a doctor with experience in treating the symptoms. > > Hope all goes well! > >  > > Kim in Kenosha > > > > > > ________________________________ > > From: lynnej73 <lynnej73@> > > achalasia > > Sent: Tuesday, December 6, 2011 7:54 PM > > Subject: Spoke with dr. today > > > > > >  > > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2011 Report Share Posted December 13, 2011 Lynn, It's embarrasing how behind I have been on emails. But I researched the top hospitals in the US for Gastroenterology and there are quite a few on the East Coast. I think it is the Cleveland Hospital that ranked very high , number 2, behind the Mayo Clinic in Minnesota. The good thing is you have options. When I had the regular dilation, after I woke up he told me I had GERD and to continue taking Prilosec, which I have taken for years. Boy was he wrong! I think the pneumatic dilation is more specialized. You don't want to have too many of these either. Sometimes they can only stretch it so far before they can't do anymore. Or so I have read. So if you get it done, make it count! Keep me posted.  Kim A ________________________________ From: lynnej73 <lynnej73@...> achalasia Sent: Monday, December 12, 2011 1:45 PM Subject: Re: Spoke with dr. today  Thanks Kim. I don't know why my dr. is not having me do the manometry. When I asked about other tests, she said she was confident from the report and seeing the barium pictures that it was achalasia. Plus, I had a clean scope in early October. She mentioned manometry after I had the scope as a possible test if I didn't improve with prevacid. I could tell by the way she said it and the look on her face that it wasn't pleasant so maybe (right or wrong?) she only does it if she is on the fence with diagnosis? I am trying the dilation with my dr. I trust her and don't think she would steer me wrong and I think she would recommend another dr. if she felt it would be better for me. I could be naive but that is where I'm at right now. If it does not work, I will find a specialist in Pittsburgh to do the myotomy. I am lucky to live so close to surgical specialists. Did you have any pain after your dilation? Lynn > > Hi Lynn, >  > I am trying to catch up on emails here and seen this one. It does sound reasonable however, the two tests used to determine if it is Achaklasia are the barium and mannometry. Did you have that yet? I was dilated about 5 weeks ago and had to go back for Mannometry last Friday. This test the pressure in the Esophagus and might I add is extremely uncomfortable. I have to do the barium swallow again next Monday and then I don't go back again for a year, providing there are no problems. My GI also did not want to go too extreme and wanted to start off with dilation first. They told me it should last 1-5 years but we are all different. Mine seemed to go pretty well but do some resear ch on your doctor There are so few doctors who know what this is or even better yet can actually treat it. While there is no cure, our best defense can be having a doctor with experience in treating the symptoms. > Hope all goes well! >  > Kim in Kenosha > > > ________________________________ > From: lynnej73 <lynnej73@...> > achalasia > Sent: Tuesday, December 6, 2011 7:54 PM > Subject: Spoke with dr. today > > >  > My GI Dr. called today and diagnosed achalasia based on clear endoscopy and the results of the barium swallow imaging. She said based on those two she did not feel the need for further testing. She suggested trying dilation first. She said I may respond favorably and have it work for a few years, I may not respond at all or I will fall somewhere in between. When symptoms recur then I should move on to surgery. I like the idea of starting off more conservatively and seeing if I am lucky and it works. However, she made it sound like surgery was not an if but when. She should be able to get me scheduled before Christmas. I don't want to be too hopeful but it would be great to be able to eat more normally during the holiday season! Should I be getting more opinions at this point or does this course of actions seem reasonable? Once again, thanks for your help!! Lynn > > > > > Quote Link to comment Share on other sites More sharing options...
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