Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Welcome Kim! Hope that you were able to get some sleep! I had surgery last week so my sleep is erratic. Assuming that you have been properly diagnosed, you are quite fortunate indeed. Many of us are misdiagnosed for months/years on end! I'm sorry that you haven't been well but glad to know that you are taking steps to evaluate your situation and this disorder (I also don't know how to refer to Alchasia). I found the LINKS section of this groups invaluable, in addition to the postings so I would encourage you to review both and ask questions and raise concerns if and when the occasion arises. Wishing you restored good health as quickly as possible! Gayle in San Francisco > Hello, > > I've been poking about the site for about two hours now, really need > to get some SLEEP! > > I've just recently been initially diagnosed with achalasia after a > barium swallow. I haven't been seen by the surgery folk yet, but > boy do I have questions for them now. > > From reading a lot of your stories here, it seems I caught it early > at a pretty mild time. I haven't lost any weight, haven't thrown up > at all (although it's been close a time or two). However, > swallowing sucks, the heartburn is horrible, and the chest pain is > for the birds. > > I'm pretty young, although not the youngest here, at 31. From > trying hard to figure out when this all started, I can only say that > I know it hasn't been a LONG time. The worst symptoms have only > been occuring for the last three months or so, with maybe some minor > stuff going back a couple of months before that. > > I'm glad to have caught it early. The radiologist knew right away > what it was, or I suppose that should be more along the lines of he > knew right away what he THINKS it is. I'm just going by what the > barium stuff was doing in the picture (that darn pill didn't go down > after 20+ minutes before we gave up waiting for it!) and his first > thought diagnosis. > > I meet with the surgery folk later this month to see what comes > next. I'm guessing the endoscopy. > > So, thanks for having this support group! I'm pretty sure I'll be > spending many more hours going back in the posts, learning a lot > about my new " disease " , " condition " , " whatever " . *laugh* > > Kim > army spouse and mom living in Kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 welcome kim to the group, yes thats good they caught it early, sorry cant talk much right now as off to work yuck, just wanted to welcome you suew krbosco@... wrote: Hello,I've been poking about the site for about two hours now, really need to get some SLEEP!I've just recently been initially diagnosed with achalasia after a barium swallow. I haven't been seen by the surgery folk yet, but boy do I have questions for them now.From reading a lot of your stories here, it seems I caught it early at a pretty mild time. I haven't lost any weight, haven't thrown up at all (although it's been close a time or two). However, swallowing sucks, the heartburn is horrible, and the chest pain is for the birds.I'm pretty young, although not the youngest here, at 31. From trying hard to figure out when this all started, I can only say that I know it hasn't been a LONG time. The worst symptoms have only been occuring for the last three months or so, with maybe some minor stuff going back a couple of months before that.I'm glad to have caught it early. The radiologist knew right away what it was, or I suppose that should be more along the lines of he knew right away what he THINKS it is. I'm just going by what the barium stuff was doing in the picture (that darn pill didn't go down after 20+ minutes before we gave up waiting for it!) and his first thought diagnosis.I meet with the surgery folk later this month to see what comes next. I'm guessing the endoscopy.So, thanks for having this support group! I'm pretty sure I'll be spending many more hours going back in the posts, learning a lot about my new "disease", "condition", "whatever". *laugh*Kimarmy spouse and mom living in Kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Welcome Kim, I am a native Kansan now living in Independence, MO. Are you living in Manhattan I see your email address is Kansas State University. I am 71 next month and have had achalasia since age 14. I am getting along fine at the present time. There are many here who will be a great help to you, a great group of people. F Brand new here > Hello, > > I've been poking about the site for about two hours now, really need > to get some SLEEP! > > I've just recently been initially diagnosed with achalasia after a > barium swallow. I haven't been seen by the surgery folk yet, but > boy do I have questions for them now. > > From reading a lot of your stories here, it seems I caught it early > at a pretty mild time. I haven't lost any weight, haven't thrown up > at all (although it's been close a time or two). However, > swallowing sucks, the heartburn is horrible, and the chest pain is > for the birds. > > I'm pretty young, although not the youngest here, at 31. From > trying hard to figure out when this all started, I can only say that > I know it hasn't been a LONG time. The worst symptoms have only > been occuring for the last three months or so, with maybe some minor > stuff going back a couple of months before that. > > I'm glad to have caught it early. The radiologist knew right away > what it was, or I suppose that should be more along the lines of he > knew right away what he THINKS it is. I'm just going by what the > barium stuff was doing in the picture (that darn pill didn't go down > after 20+ minutes before we gave up waiting for it!) and his first > thought diagnosis. > > I meet with the surgery folk later this month to see what comes > next. I'm guessing the endoscopy. > > So, thanks for having this support group! I'm pretty sure I'll be > spending many more hours going back in the posts, learning a lot > about my new " disease " , " condition " , " whatever " . *laugh* > > Kim > army spouse and mom living in Kansas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Thanks for the welcome everyone , yes, I'm in Manhattan, but I'm not from Kansas. Just here for a few years while my husband is stationed at Fort Riley. I'm looking forward to reading through more of the posts and links and other stuff. I'm a sponge right now, soaking up all this experience from you all! Thanks again, Kim Quoting Fitzgerald <efitzgar@...>: > Welcome Kim, > I am a native Kansan now living in Independence, MO. > Are you living in Manhattan I see your email address is Kansas State > University. I am 71 next month and have had achalasia since age 14. > I am getting along fine at the present time. There are many here > who will be a great help to you, a great group of people. > > F > > Brand new here > > > Hello, > > I've been poking about the site for about two hours now, really > need > > to get some SLEEP! > > I've just recently been initially diagnosed with achalasia after a > > > barium swallow. I haven't been seen by the surgery folk yet, but > > > boy do I have questions for them now. > > > > > > From reading a lot of your stories here, it seems I caught it early > > > at a pretty mild time. I haven't lost any weight, haven't thrown > up > > > at all (although it's been close a time or two). However, > > > swallowing sucks, the heartburn is horrible, and the chest pain is > > > for the birds. > > > > > > I'm pretty young, although not the youngest here, at 31. From > > > trying hard to figure out when this all started, I can only say > that > > > I know it hasn't been a LONG time. The worst symptoms have only > > > been occuring for the last three months or so, with maybe some > minor > > > stuff going back a couple of months before that. > > > > > > I'm glad to have caught it early. The radiologist knew right away > > > what it was, or I suppose that should be more along the lines of he > > > knew right away what he THINKS it is. I'm just going by what the > > > barium stuff was doing in the picture (that darn pill didn't go > down > > > after 20+ minutes before we gave up waiting for it!) and his first > > > thought diagnosis. > > > > > > I meet with the surgery folk later this month to see what comes > > > next. I'm guessing the endoscopy. > > > > > > So, thanks for having this support group! I'm pretty sure I'll be > > > spending many more hours going back in the posts, learning a lot > > > about my new " disease " , " condition " , " whatever " . *laugh* > > > > > > Kim > > > army spouse and mom living in Kansas > Kim Bosco Geology Lab Coordinator Hall, Room 208B Kansas State University Manhattan, Kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I have had 11 surgeries on my left ear - and I'm very thankful to find a support group on the Internet! I had 10 surgeries from the time I was two until the time I was 10 - and then just did ENT maintenance from there. When I was in college - around 1997 - I had a surgery to open up my mastoid cavity further to aid in office cleanings. After that, I had little or no ear problems and going to the ENT got put on the back burner. I guess I either did not understand or was unaware that if I didn't go to the ENT at least twice a year that I was securing a definite future of cholesteatoma growth. So, that's where I am today - 33 - and I finally went back to the ENT yesterday after experiencing pain and yucky/stinky draining from my left ear. I know those symptoms from being a kid and dealing with all of this - so, I knew that I had to get in " right away " . The ENT had barely been in my ear five minutes when he spotted a new cholesteatoma. He sent me for an immediate CT Scan because the new growth is really close to my balance canals. They are supposed to be faxing me the report this afternoon sometime. I feel so stupid for neglecting this problem and I'm pretty angry with myself. I have a follow up visit in two weeks - I have to do nightly baby oil in my ear to soften up all the build up in my ear. After he can clean it out more, I believe that they are going to schedule surgery to remove the cholesteatoma. There is not " a lot left " in the ear as it is - I have an open mastoid cavity with a ceramic ear bone --- and I'm pretty nervous about where all this leading. I feel very blessed and thankful that I have not had these problems with my right ear - and my hearing in that ear is excellent, thank goodness. Anyway, that's my story - as I said earlier, I am very thankful to have found y'all! Quote Link to comment Share on other sites More sharing options...
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