Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Thank you, . I have read many of the posts from you about Cullen. I always think when i read the posts of the parents like you, and Tonia, and others, that THAT would be even harder for me. Having something like A. has got to be easier than having a child that has it. My favorite quote is... " If there is to be trouble, let it be in my day, that my child might have peace. " So in that way, i feel blessed and send you and loving parents like you my sincerest regards. I hope Cullen is well today. Thank you for reading my first post and responding. It was a big step for me to reach out. God bless. Christy > > > Go have the manometry test done. It will tell you above all other things > if you have A. My son has A. He suffered like you did for a few years. > Started with the chest pains that felt like a heart attack. Took him to > several doctors who said it was anxiety and acid. Two years later we were > told thru a barium swallow and other test that he had A. His GI in Memphis > and never seen it before. July of last year I took him to Vanderbilt > hospital to have a myotomy. He is much better today. After surgery he said mom I > can' even fell my spit go down. He never did dilations or botox because I > was worried about scarring. We went straight for surgery and I tried to > find the most experience doctor I could as close as i could. Hope this > helps. Sounds like you have A to me. Sorry you have suffered for so long! > STUPID Doctors! > > , > > Cullen's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Hi Christy, A barium swallow (with liquid) should give a good idea of whether you have achalasia. The barium swallow is easier on the patient than manometry, and your family doctor can order it. It's more common to have swallowing problems further up, so just be sure they also look far enough down that they can get a look at the lower esophageal sphincter. Did they use liquid with your barium swallow in November? And did they look at the LES? Another possibility is diffuse esophageal spasm, but that's rarer. in PA -------------------------------------------------- From: " clkboysmom " <clkboysmom@...> Sent: Wednesday, February 03, 2010 6:03 PM <achalasia > Subject: Achalasia or not ? > Hi. My name is Christy and I'm an Achalasian. (i think) > > My first post will be long but please bear with me... > > We lived in Tennessee. About 7 years ago my problems began. I was a 38 > year old healthy mother of two wonderful boys. I never smoked or drank, > was 5'5 " tall and weighed about 150 or so pounds. One day out of the blue > i had a chest pain that was so sudden and weird that i thought i was > having a heart attack. It scared me so much that i started teaching my > little boys how to call 911. My husband travels alot and so i was afraid > something would happen to me while it was just me and the boys. > > This chest pain continued for months. Always in the middle of my chest but > of varying degrees and lenghts of time. Finally, i went to a heart dr. He > did blood work and a few heart tests. He found nothing wrong with me. He > seemed to think, if i recall, it was probably GERD or anxiety. He sent me > to a GI to be checked out and he also found nothing and seem to think the > same as the heart dr. and sent me on my way. Chest pains continued. > > In 2006 we moved to Florida just outside of Orlando. At some point I > discovered that drinking water as soon as i felt a tinge of pain seemed to > be helpful. So i always carry water with me now in case i feel an attack > coming on. Around 2007, I would occasionally have a little trouble > swallowing a bite of food. And at some point my chest pains seemed much > less frequent. > > In 2009, at 45 years old, and by all accounts still healthy...things > started getting much worse when trying to eat. Nearly everyday and every > meal there was some degree of trouble. > > Feel free to go and take a break at this point...i won't mind... > > O.K. so anyway...in Nov.2009 i had a barrium swallow. The coated, dry > turkey stuck and the guy doing the test said it looked like i had a spasm. > So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. > He said that should help me swallow, it did not. As usual, he seem to > think it was GERD. I knew what that (acid reflux and heartburn) felt like > from when i was pregnant both times and would always tell each dr. that i > did not feel it was that at all. > > In fact, i had new problems it seemed. Afterwards, (i had not had my > follow up apt. yet) i could hardly ever burp even though i could feel the > pressure of needing to. I still had terrible swallowing trouble. And > sometimes a sudden cold drink would bring on pain and could not swallow > until it passed. Now,I often get horrible hiccups while i'm trying to eat. > My chest pains changed in that when i had them the pain radiated often > into my back and sometimes up into my neck, face, and ears. It would feel > so tight and painful. > On my own i started taking Prevasid just to see if it would help. It did > not but i took it anyway. > > Finally i had my EGD follow up apt. I had no faith in him at this point > because he had made me believe my swallowing trouble would be much better > after the proceedure and i felt i was worse with new issues to deal with, > too. He said the biopsy was ok. The EGD showed i have a medium hiatal > hernia. He said that i should exercise, relax, and breath deep when i have > troubles. He suspects GERD or anxiety. What a shocker. He also prescribed > double the dose of Prevasid and Librax. He said to check back in about a > month. I left his office feeling angry. > > In January, 2010, my dear husband showed me what he had found on the > computer about Achalasia, and this support group. As soon as I started > reading about A. and the posts here, i felt like this is what i have. I > have spent many, many hours reading about A. and have read more than a > thousand of the posts here. I am out of Prevasid and Librax and have an > appointment with the GI on Feb.26. > > You wonderful people here seemed so informed. In your oppinions, do you > think i have A.? I live about 1 and 1/2 hours from the swallowing center > in Tampa. I hate doctors and tests and don't want to persue that route if > it is not likely that i have A. Otherwise i am healthy, and in Jan. > started trying to just eat more carefully and not eat things that are the > hardest for me to swallow. > > Thank you to all who took valuable time from your lives to read this long, > LONG post. God bless you. Please respond if you will... > > Regards to all, Christy in Florida. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Christy wrote: > ... So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. He said that should help me swallow, it did not. ... Usually the only kind of dilatation that works for achalasia is with an achalasia dilator. Other dilators are too small. GIs often try the other dilators because it is what they are used to using for other problems and they may not have even done a real achalasia dilation before. Also because the achalasia dilators are much bigger than the other dilators the risk of rupture is much greater so many will try what they know first. > ... The EGD showed i have a medium hiatal hernia. ... A hiatal hernia could cause problems. It is also possible that it is not a hernia but that your lower esophagus has dilated and so looks like part of the stomach is sticking up above the hiatus where a narrow esophagus should be, but the esophagus could be there, just bigger than expected. It is also possible, but uncommon in achalasia, to have both achalasia and a hiatal hernia. If he thought he was looking at a hiatal hernia what did he think he was doing the dilatation on? Did he see what looked like a hernia and a stricture too? If so, what did he think the stricture was? > ... In your oppinions, do you think i have A.? I live about 1 and 1/2 hours from the swallowing center in Tampa. ... It is hard to say. The best test is the manometry test. Even if you have a hiatal hernia it may be good to have the test to rule out other problems coexisting with it. Maybe you should seek a very qualified second opinion. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Second Notan suggestion about a specialist. Sent from my Verizon Wireless BlackBerry Re: Achalasia or not ? Christy wrote: > ... So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. He said that should help me swallow, it did not. ... Usually the only kind of dilatation that works for achalasia is with an achalasia dilator. Other dilators are too small. GIs often try the other dilators because it is what they are used to using for other problems and they may not have even done a real achalasia dilation before. Also because the achalasia dilators are much bigger than the other dilators the risk of rupture is much greater so many will try what they know first. > ... The EGD showed i have a medium hiatal hernia. ... A hiatal hernia could cause problems. It is also possible that it is not a hernia but that your lower esophagus has dilated and so looks like part of the stomach is sticking up above the hiatus where a narrow esophagus should be, but the esophagus could be there, just bigger than expected. It is also possible, but uncommon in achalasia, to have both achalasia and a hiatal hernia. If he thought he was looking at a hiatal hernia what did he think he was doing the dilatation on? Did he see what looked like a hernia and a stricture too? If so, what did he think the stricture was? > ... In your oppinions, do you think i have A.? I live about 1 and 1/2 hours from the swallowing center in Tampa. ... It is hard to say. The best test is the manometry test. Even if you have a hiatal hernia it may be good to have the test to rule out other problems coexisting with it. Maybe you should seek a very qualified second opinion. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Christy...I would certainly say you have achalasia. I am not a doctor. But...what you explained sounded like something I could have wrote. Even right down the the hiccups. HORRIBLE! The chest pain. Horrible. When I was at the hight of my chest pain, before my second hellers myotomy, my doctor was giving my stadol nose spray, a very strong narcotic, to ease the pain. It was the only thing that would work. I have been gone from this group for a long time and am just coming back now because my symtoms are starting to return... I am just as shocked now as I was way back in 1999 to see new members coming here to this group and explaining what I have down to the T! I wish you all the luck. Oh, by the way, I also reside in Florida. I was in Michigan until a few years ago and have never seen a doctor in FL for this. I am very interested to know if anyone has any experience with doctors/specialists here. I am in Citrus County Florida. Where abouts are you if you don't mind me asking? > > Hi. My name is Christy and I'm an Achalasian. (i think) > > My first post will be long but please bear with me... > > We lived in Tennessee. About 7 years ago my problems began. I was a 38 year old healthy mother of two wonderful boys. I never smoked or drank, was 5'5 " tall and weighed about 150 or so pounds. One day out of the blue i had a chest pain that was so sudden and weird that i thought i was having a heart attack. It scared me so much that i started teaching my little boys how to call 911. My husband travels alot and so i was afraid something would happen to me while it was just me and the boys. > > This chest pain continued for months. Always in the middle of my chest but of varying degrees and lenghts of time. Finally, i went to a heart dr. He did blood work and a few heart tests. He found nothing wrong with me. He seemed to think, if i recall, it was probably GERD or anxiety. He sent me to a GI to be checked out and he also found nothing and seem to think the same as the heart dr. and sent me on my way. Chest pains continued. > > In 2006 we moved to Florida just outside of Orlando. At some point I discovered that drinking water as soon as i felt a tinge of pain seemed to be helpful. So i always carry water with me now in case i feel an attack coming on. Around 2007, I would occasionally have a little trouble swallowing a bite of food. And at some point my chest pains seemed much less frequent. > > In 2009, at 45 years old, and by all accounts still healthy...things started getting much worse when trying to eat. Nearly everyday and every meal there was some degree of trouble. > > Feel free to go and take a break at this point...i won't mind... > > O.K. so anyway...in Nov.2009 i had a barrium swallow. The coated, dry turkey stuck and the guy doing the test said it looked like i had a spasm. So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. He said that should help me swallow, it did not. As usual, he seem to think it was GERD. I knew what that (acid reflux and heartburn) felt like from when i was pregnant both times and would always tell each dr. that i did not feel it was that at all. > > In fact, i had new problems it seemed. Afterwards, (i had not had my follow up apt. yet) i could hardly ever burp even though i could feel the pressure of needing to. I still had terrible swallowing trouble. And sometimes a sudden cold drink would bring on pain and could not swallow until it passed. Now,I often get horrible hiccups while i'm trying to eat. My chest pains changed in that when i had them the pain radiated often into my back and sometimes up into my neck, face, and ears. It would feel so tight and painful. > On my own i started taking Prevasid just to see if it would help. It did not but i took it anyway. > > Finally i had my EGD follow up apt. I had no faith in him at this point because he had made me believe my swallowing trouble would be much better after the proceedure and i felt i was worse with new issues to deal with, too. He said the biopsy was ok. The EGD showed i have a medium hiatal hernia. He said that i should exercise, relax, and breath deep when i have troubles. He suspects GERD or anxiety. What a shocker. He also prescribed double the dose of Prevasid and Librax. He said to check back in about a month. I left his office feeling angry. > > In January, 2010, my dear husband showed me what he had found on the computer about Achalasia, and this support group. As soon as I started reading about A. and the posts here, i felt like this is what i have. I have spent many, many hours reading about A. and have read more than a thousand of the posts here. I am out of Prevasid and Librax and have an appointment with the GI on Feb.26. > > You wonderful people here seemed so informed. In your oppinions, do you think i have A.? I live about 1 and 1/2 hours from the swallowing center in Tampa. I hate doctors and tests and don't want to persue that route if it is not likely that i have A. Otherwise i am healthy, and in Jan. started trying to just eat more carefully and not eat things that are the hardest for me to swallow. > > Thank you to all who took valuable time from your lives to read this long, LONG post. God bless you. Please respond if you will... > > Regards to all, Christy in Florida. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Christy...sorry I asked where about you lived in FL, I see it is outside of Orlando. Not far from me at all! > > > > Hi. My name is Christy and I'm an Achalasian. (i think) > > > > My first post will be long but please bear with me... > > > > We lived in Tennessee. About 7 years ago my problems began. I was a 38 year old healthy mother of two wonderful boys. I never smoked or drank, was 5'5 " tall and weighed about 150 or so pounds. One day out of the blue i had a chest pain that was so sudden and weird that i thought i was having a heart attack. It scared me so much that i started teaching my little boys how to call 911. My husband travels alot and so i was afraid something would happen to me while it was just me and the boys. > > > > This chest pain continued for months. Always in the middle of my chest but of varying degrees and lenghts of time. Finally, i went to a heart dr. He did blood work and a few heart tests. He found nothing wrong with me. He seemed to think, if i recall, it was probably GERD or anxiety. He sent me to a GI to be checked out and he also found nothing and seem to think the same as the heart dr. and sent me on my way. Chest pains continued. > > > > In 2006 we moved to Florida just outside of Orlando. At some point I discovered that drinking water as soon as i felt a tinge of pain seemed to be helpful. So i always carry water with me now in case i feel an attack coming on. Around 2007, I would occasionally have a little trouble swallowing a bite of food. And at some point my chest pains seemed much less frequent. > > > > In 2009, at 45 years old, and by all accounts still healthy...things started getting much worse when trying to eat. Nearly everyday and every meal there was some degree of trouble. > > > > Feel free to go and take a break at this point...i won't mind... > > > > O.K. so anyway...in Nov.2009 i had a barrium swallow. The coated, dry turkey stuck and the guy doing the test said it looked like i had a spasm. So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. He said that should help me swallow, it did not. As usual, he seem to think it was GERD. I knew what that (acid reflux and heartburn) felt like from when i was pregnant both times and would always tell each dr. that i did not feel it was that at all. > > > > In fact, i had new problems it seemed. Afterwards, (i had not had my follow up apt. yet) i could hardly ever burp even though i could feel the pressure of needing to. I still had terrible swallowing trouble. And sometimes a sudden cold drink would bring on pain and could not swallow until it passed. Now,I often get horrible hiccups while i'm trying to eat. My chest pains changed in that when i had them the pain radiated often into my back and sometimes up into my neck, face, and ears. It would feel so tight and painful. > > On my own i started taking Prevasid just to see if it would help. It did not but i took it anyway. > > > > Finally i had my EGD follow up apt. I had no faith in him at this point because he had made me believe my swallowing trouble would be much better after the proceedure and i felt i was worse with new issues to deal with, too. He said the biopsy was ok. The EGD showed i have a medium hiatal hernia. He said that i should exercise, relax, and breath deep when i have troubles. He suspects GERD or anxiety. What a shocker. He also prescribed double the dose of Prevasid and Librax. He said to check back in about a month. I left his office feeling angry. > > > > In January, 2010, my dear husband showed me what he had found on the computer about Achalasia, and this support group. As soon as I started reading about A. and the posts here, i felt like this is what i have. I have spent many, many hours reading about A. and have read more than a thousand of the posts here. I am out of Prevasid and Librax and have an appointment with the GI on Feb.26. > > > > You wonderful people here seemed so informed. In your oppinions, do you think i have A.? I live about 1 and 1/2 hours from the swallowing center in Tampa. I hate doctors and tests and don't want to persue that route if it is not likely that i have A. Otherwise i am healthy, and in Jan. started trying to just eat more carefully and not eat things that are the hardest for me to swallow. > > > > Thank you to all who took valuable time from your lives to read this long, LONG post. God bless you. Please respond if you will... > > > > Regards to all, Christy in Florida. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Christy...sorry I asked where about you lived in FL, I see it is outside of Orlando. Not far from me at all! > > > > Hi. My name is Christy and I'm an Achalasian. (i think) > > > > My first post will be long but please bear with me... > > > > We lived in Tennessee. About 7 years ago my problems began. I was a 38 year old healthy mother of two wonderful boys. I never smoked or drank, was 5'5 " tall and weighed about 150 or so pounds. One day out of the blue i had a chest pain that was so sudden and weird that i thought i was having a heart attack. It scared me so much that i started teaching my little boys how to call 911. My husband travels alot and so i was afraid something would happen to me while it was just me and the boys. > > > > This chest pain continued for months. Always in the middle of my chest but of varying degrees and lenghts of time. Finally, i went to a heart dr. He did blood work and a few heart tests. He found nothing wrong with me. He seemed to think, if i recall, it was probably GERD or anxiety. He sent me to a GI to be checked out and he also found nothing and seem to think the same as the heart dr. and sent me on my way. Chest pains continued. > > > > In 2006 we moved to Florida just outside of Orlando. At some point I discovered that drinking water as soon as i felt a tinge of pain seemed to be helpful. So i always carry water with me now in case i feel an attack coming on. Around 2007, I would occasionally have a little trouble swallowing a bite of food. And at some point my chest pains seemed much less frequent. > > > > In 2009, at 45 years old, and by all accounts still healthy...things started getting much worse when trying to eat. Nearly everyday and every meal there was some degree of trouble. > > > > Feel free to go and take a break at this point...i won't mind... > > > > O.K. so anyway...in Nov.2009 i had a barrium swallow. The coated, dry turkey stuck and the guy doing the test said it looked like i had a spasm. So then a GI did an EGD and biopsy, and a dialation with a " brush? " on me. He said that should help me swallow, it did not. As usual, he seem to think it was GERD. I knew what that (acid reflux and heartburn) felt like from when i was pregnant both times and would always tell each dr. that i did not feel it was that at all. > > > > In fact, i had new problems it seemed. Afterwards, (i had not had my follow up apt. yet) i could hardly ever burp even though i could feel the pressure of needing to. I still had terrible swallowing trouble. And sometimes a sudden cold drink would bring on pain and could not swallow until it passed. Now,I often get horrible hiccups while i'm trying to eat. My chest pains changed in that when i had them the pain radiated often into my back and sometimes up into my neck, face, and ears. It would feel so tight and painful. > > On my own i started taking Prevasid just to see if it would help. It did not but i took it anyway. > > > > Finally i had my EGD follow up apt. I had no faith in him at this point because he had made me believe my swallowing trouble would be much better after the proceedure and i felt i was worse with new issues to deal with, too. He said the biopsy was ok. The EGD showed i have a medium hiatal hernia. He said that i should exercise, relax, and breath deep when i have troubles. He suspects GERD or anxiety. What a shocker. He also prescribed double the dose of Prevasid and Librax. He said to check back in about a month. I left his office feeling angry. > > > > In January, 2010, my dear husband showed me what he had found on the computer about Achalasia, and this support group. As soon as I started reading about A. and the posts here, i felt like this is what i have. I have spent many, many hours reading about A. and have read more than a thousand of the posts here. I am out of Prevasid and Librax and have an appointment with the GI on Feb.26. > > > > You wonderful people here seemed so informed. In your oppinions, do you think i have A.? I live about 1 and 1/2 hours from the swallowing center in Tampa. I hate doctors and tests and don't want to persue that route if it is not likely that i have A. Otherwise i am healthy, and in Jan. started trying to just eat more carefully and not eat things that are the hardest for me to swallow. > > > > Thank you to all who took valuable time from your lives to read this long, LONG post. God bless you. Please respond if you will... > > > > Regards to all, Christy in Florida. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 " " wrote: > > Hi Christy, .. Did they use liquid > with your barium swallow in November? And did they look at the LES? > in PA > Hello, . I am message #57,171. Thank you for your interest and any help, too. My barrium swallow was a drink (no problem), some pudding (no problem), some turkey (big problem). From what i remember, i was sitting in front of a machine that was positioned rather high. At this time, all i knew was that i had a history of chest pains and increasingly difficult time swallowing when eating. I did not know about A. and knew none of the terminology to use. When i had the turkey get stuck, i tried to tell them ( could barely squeak out sound) that it was stuck. I think there was commotion to adjust the machine, but i was concentrating on MY problem. It passed. So they had me stand up and turn to the side. i got a drink and took another bite of turkey. It went down slow i think. The guy asked me if i wanted more " pictures " or something, i can't remember exactly. He said they had done more than normal but wouldn't charge me. I told him i should charge him for making me eat the turkey. I don't remember him using any terms like LES or anything. He said it looked like i had a spasm and everthing afterwards stacked up inside my e. When i went to the GI, he made no real reference to any of this before of after my EGD. No dr. has ever talked to me about LES or such at any point. My husband and I have found out about all of this since my last GI visit. Does any of that help to tell you or others something about my conditon which remains undiagnosed but worsening. Thank you so, so much. Regards, Christy in FL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 I still think it would be good to know whether they looked at the LES or not. You could ask for a copy of your X-rays and ask your doctor to discuss them with you. I hope your doctors get it figured out! As others have said here, it's worthwhile to go a distance to find someone who is experienced with achalasia. in PA > My barrium swallow was a drink (no problem), some pudding (no problem), > some turkey (big problem). From what i remember, i was sitting in front of > a machine that was positioned rather high. .... > He said it looked like i had a spasm and everthing afterwards stacked up > inside my e. Quote Link to comment Share on other sites More sharing options...
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