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Anyone else with achalasia from Mayo? I’m heading up to Rochester soon for surgery.
Interested in more discussions like this? Go to the Digestive Health group.
My Mum suffers from achalasia – diagnosed in 2007. She has had at least 12 EGDs, for either dilatation, or botox injections, and has had surgery in 2009 – a Heller myotomy with a fundoplication. The latter procedure was “too tight” and now is going for a consult with Mayo to see what to do next. She can’t eat anything by mouth, and has a feeding tube to get her calories (for a year now). The last two dilatations didn’t work. I hope this doesn’t discourage you…how old are you and how far along are you with the achalasia?
By now you have had your surgery, as I can see by the date of your post…how did it go?
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Yes! Had my surgery on July 13th at Mayo in Rochester. Kept going to doctors here in Mississippi, and no one could figure out what was going on with me for 2.5 years. I was having the typical trouble swallowing, but also excruciating esophageal spasms. I’d had it, so we went up to Mayo to see Dr. Katzka. He diagnosed me within 2 days with achalasia and recommended the surgery. Highly recommend Katzka…he treated us like I was his only patient and was so understanding (something I had not experienced in any of my previous interactions with GI doctors). We flew back up to Mayo a month later for the surgery with Dr Mark Allen. The surgery went really well. Dr Allen and team were absolutely great. Now, 5 months later, I can swallow everything, even pills and steak! Turned out better than expected. Still have occasional spasms, but they aren’t as painful as they used to be. Dr Katzka said those will hopefully go away a year after the surgery. In summary, I’m SO GRATEFUL that I went to Mayo. I don’t believe I could have had a better outcome anywhere else in the country. Granted, your mother’s surgery may be more involved, as she’s already had surgery and all the dilitations, but Mayo is the best place for her to go. I only have good things to say about my experience and the doctors who worked with us. I thank God often for leading me to Mayo.
I was diagnosed with Achalasia in early 2009, and was operated on at the age of 45. My surgeon was the Head of Surgery at our local hospital and came highly recommended. He performed a Heller’s Myotomy and Partial Fundoplication, all laproscopically. I have the rare swallowing difficulty but it passes immediately.
My father was diagnosed with Achalasia at the Mayo Clinic in 1978, at the age of 41. Oddly enough, he was living in MS at the time and not a single doctor there could figure out what he had. Within hours of arriving at the Mayo Clinic he was diagnosed and scheduled for surgery.
Back then they opened you up from the middle of your back to the middle of your abdomen, a small price to pay to save your life before you starve to death.
In all the literature I’ve read they’ve said Achalasia is NOT genetic or hereditary, I can’t buy into that one. What are the chances of such a rare disease occurring in the same family, and almost the same age?
I am glad to hear that all went well with your surgery; the Mayo Clinic is certainly an amazing place. I wish you the total success that I have seen with my surgery.
My mom has suffered from Achalasia since age 18. She is now 59 and this past year her colon began shutting down and she has severe episodes of dumping syndrome. I’m taking over as her caregiver next month. Does anyone else suffer from dumping syndrome and if you do are there any suggestions you’ve found to help. The dumping syndrome has gotten increasingly worse since her esophagus was removed, her vagus nerve was cut, and her stomach was reshaped to connect to her throat 10 years ago at Virginia Mason in Seattle WA.
Hey, I’m a member of this awesome achalasia forum. You should check it out…search the boards and even post this question there. I don’t know anything about dumping syndrome, but I know I’ve seen it talked about by other forum members. The site is:
Hope this is of assistance!
I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have “chest” or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!
Welcome to Connect @margo42.
There are several members talking about reflux and gastroparesis in a variety of discussions throughout Connect. @rsinger22 @ladysky @dandl48 @robbinr @danielad @rexanna @rexanna @pinkmk will you join me in welcoming Margo and adding your thoughts and experiences?
Margo, you may wish to read/take part in these discussions:
– I have acid reflux so bad it is coming up into my sinuses http://mayocl.in/2aLKaZm
– I am a relatively healthy person with a problem “bloated belly” http://mayocl.in/2biTqQF
– Barrett’s esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ
I can imagine you’re concerned about the damage risk reflux poses to your esophagus. What final tests do you have in September?
Welcome Margo; I too have reflux, Barrett’s Esophogus and nodules at the junction of my stomach. I take 40 MG of Nexium 24 2 times a day plus D3 but I still have to watch my diet. I have been to the Mayo Clinic in Rochester 5 times (just returning from my 5 visit). As I have been told re food, don’t eat it if it effects me. Everyone has certain food items that bother’s them. My Barrett’s has gone from High Grade dysplasia to no dysplasia and this last time I just had a small island of Barrett’s that instead of getting a RFA,the Dr.cut it out. Good luck with your tests!
Thanks Colleen. I am having an upper endoscopy and bravo ph monitoring test in September.
Thanks for answering my shout out to you Dandl48 and answering Margo. What types of foods affect you?
Chocolate and food with garlic
Hi Margo42. I also was diagnose with alcalasia last year. I don’ have any pain, just a lot of acid reflux. I am on protonic 40 mg twice a day. I also have esophageal spasm, my doctor put me on alodompine 20mg once a day. I cough a lot and cough up a lot of white clear mucus especially at night. It is like I wake up choking. Do anyone have these same system? I am sorry Margo42 you are having so much pain. Playfully you will be able to find a doctor that can help with your pain.
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