Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 , welcome to the "family" here. I'm a little curious and concerned about your husband's lack of a diagnosis. Have they actually said what his condition is? Has he had a manometry test done? Does his Lower Esophageal Sphincter open when he swallows? Does he have any kind of peristaltic contractions? Has he had a barium swallow test done? Does barium "back up" into his esophagus when he swallows, or does it not even go down in the first place? From personal experience, I would recommend that you dump the UMMC and instead head south, to The Cleveland Clinic. They have a department specifically for swallowing disorders, and they have an EXCELLENT thoracic surgeon who treats achalasia patients and others with swallowing disorders. I don't know who the doctor is that you're seeing at UMMC, but if it's Nostrant (or his students) I would run, not walk, away from Ann Arbor. (Dr. Nostrant lied to me, used me as a guinea pig after lying to me, switched procedures on me after I was already in the hospital gown and hooked up to an IV, and didn't properly inform me of the outcome of the procedure he switched to. After 6 years as his patient, I wised up and haven't been back. I'm amazed that UMMC continues to let him work under their system, to tell you the truth!) If your husband does, in fact, have achalasia, he'll get EXCELLENT care at TCC. And if he doesn't have achalasia, they are well-equipped to giving him an accurate diagnosis and proposing a course of treatment. http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=129 & oTopID=33 Oh, has your husband tried Nitro or Nifedipine for his spasms? Many of us have had luck with these types of medications -- they relax smooth muscle tissue, which is what the esophagus is made of. Others have found relief when using anti-depressants or something else that affects serotonin levels.... serotonin affects the GI tract in many ways, as well as how the brain interprets or reacts to various digestive stimuli. I hope you can find some help for him SOON! Most of us know all too well what it's like to go years without a proper diagnosis, and we can sympathize with you. Debbi, in SW Michigan Any advise? Hello, My name is and my husband has been diagnosed within thepast year with an esophagus motility problem. It sounds very similarto achalasia, which I've read a little about from medical websites. He was treated for 18 months by his grastroenterologist for what theythought was acid reflux. Then, last summer, after none of the drugsworked, he was referred to an esophagus specialist at U of M(Michigan). That specialist made the diagnosis that it was not anacid reflux situation, but a motility problem. He gets pretty severespasms about twice a week, leaving him unable to swallow even water,feeling weak and worn out. He has lost almost 60 lbs. since thesymptoms started 2 1/2 years ago. They have tried many medicationsand 2 rounds of Botox injections, with not much success. May 20 wasthe last Botox (2 vials used) and that brought only partial relief forabout 3 weeks. Now, I think his spasms are even worse than before. His original gastroenterologist is trying 1 last medication(trazadone) to add to the 4 others he takes. If that doesn't work, hewas told to call a thoracic surgeon out of Beaumont Hospital todiscuss surgery to cut some of the muscles. I have heard good thingsabout this surgeon, but it's still scarey. It is so discouraging tosee my husband looking so thin, almost anorexic! Also, we never knowwhen it will be a bad day where he can't make it to work or normalactivities. Unfortunately, there are probably many others that canrelate! We would welcome any advise any members could give us as towhere they got the best care (we live near Detroit, MI) or howtreatments may have worked for some of you. Also, just knowing thatthere are others out there dealing with this same problem may be anencouragement to him. Thanks for reading this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi , Debbi Heiser has given you good advice, you definitely should know by now if your husband has achalasia or not. There is help out there you just need to seek it out, with the weight loss he has, I would have to think it is more than a motility problem. This is a very compassionate group and they will give you great support. I know you will hear from others. Any advise? > Hello, > My name is and my husband has been diagnosed within the > past year with an esophagus motility problem. It sounds very similar > to achalasia, which I've read a little about from medical websites. > He was treated for 18 months by his grastroenterologist for what they > thought was acid reflux. Then, last summer, after none of the drugs > worked, he was referred to an esophagus specialist at U of M > (Michigan). That specialist made the diagnosis that it was not an > acid reflux situation, but a motility problem. He gets pretty severe > spasms about twice a week, leaving him unable to swallow even water, > feeling weak and worn out. He has lost almost 60 lbs. since the > symptoms started 2 1/2 years ago. They have tried many medications > and 2 rounds of Botox injections, with not much success. May 20 was > the last Botox (2 vials used) and that brought only partial relief for > about 3 weeks. Now, I think his spasms are even worse than before. > His original gastroenterologist is trying 1 last medication > (trazadone) to add to the 4 others he takes. If that doesn't work, he > was told to call a thoracic surgeon out of Beaumont Hospital to > discuss surgery to cut some of the muscles. I have heard good things > about this surgeon, but it's still scarey. It is so discouraging to > see my husband looking so thin, almost anorexic! Also, we never know > when it will be a bad day where he can't make it to work or normal > activities. Unfortunately, there are probably many others that can > relate! We would welcome any advise any members could give us as to > where they got the best care (we live near Detroit, MI) or how > treatments may have worked for some of you. Also, just knowing that > there are others out there dealing with this same problem may be an > encouragement to him. Thanks for reading this! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 , welcome to our little family. I am sorry to hear that your husband is having so many problems. There are a page on the site that lists surgeons that you might want to take a look at. You need to find a surgeon that knows what he is doing in that type of surgery. I would also get a conformation of what his exact medical problem is. There is also a list of questions on the site that you can print out and take with you when you go and talk to any doctor about his problems. I would also write down any other questions that you might think of so you will not forget them. One last thing, take a look over some of the old post from a month or so back. That will give you an idea of what has been happening in the group here. I hope you and your family are doing well as can be and that your husband finds some relief soon. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 , welcome to the group. I can't add much to what others have said, but did want to say to be sure your husband gets a surgeon that is experienced in myotomies and not just a good thoracic surgeon. Since this is a rare disease, surgeons with experience is harder to find. Good luck in your search and ask any questions you want to ask? Someone here will likely have the answer and we there is little we do not discuss here. Best wishes to you both. Maggie Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hi , I am from the Detroit area as well...Sterling Heights to be specific. I was diagnosed with achalasia this past april and I make the trip to TCC because they have the most experience with esophageal motility disorders. Everyone is right about knowing the diagnosis. Usually a manometry is the best indicator of achalasia or esophageal spasms. My GI doctor in this area is through GI Medicine Associates and I see Dr Rana, but also highly reccomended is Dr Barawi and Dr Veneri in the same group. They have several locations in the area and they are through St Hosptial faclities. I have my treatment in Cleveland and I do my follow up care and tests here in Michigan. I'm sorry to hear about your husband's diagnosis. We are all here for you when you need support. Please feel free to email privately if you like: mandyw1011@... Please keep us updated! from Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 My daughter will be getting a DOC Band on Thursday. Does anyone have any advice? Thanks Quote Link to comment Share on other sites More sharing options...
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