Guest guest Posted July 18, 2011 Report Share Posted July 18, 2011 Kim - how old are you? I had an ectomy 3 1/2 years ago with a 21/2 and 5 year old - that was tough but in the end - totally worth it. Not something to be taken lightly and either myo or ectomy - find the best you can - even if it means traveling - I traveled 10 hours for mine (so I don't say that lightly) See what your surgeon says, ask questions - and when you decide/whatever you decide - we're here for you. ~ in NC achalasia free since 2008 > > Well, I'm back from an upper GI scheduled by my new surgeon. Not necessarily a pretty site, imo, but I'm going to put it out there for you all and see if anyone can give me an idea of direction that I'm headed. > > Short story, myo in 98, dilatations almost every year since due to spasm and dysphagia. Today my E is distended to twice normal size (on fasting... can't imagine looking at it with food :/) and there was no barium past LES. I fear that a 2nd myo wouldn't last me all that long, nor would it help with the distension. I guess I'm just wondering if my " fears " will be realized and I'm headed towards 'ectomy. Not really something I'm looking forward to, with a preschooler and a newborn, but I'm ready for whatever I need to do in order to get back to a somewhat normal life. > > Opinions? Any comments will be much appreciated > > kim in canada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2011 Report Share Posted July 18, 2011 Kim wrote: > > ... Today my E is distended to twice normal size (on fasting... can't > imagine looking at it with food :/) ... > This probably is good news, even if it doesn't sound perfect. Your normal esophageal diameter is probably about 2 cm.. Being double normal probably puts you at about 4 to 4.5 cm.. 4 cm is what is termed stage 2. Normal is stage 1. To be at end-stage, stage 4, you would have to double again. There are people in this support group that have reported that their esophageal diameters were over ten cm. Being reduced to only stage 2 after treatment from stage 3 or 4, would be one definition of success. If your LES can be opened some, your esophageal diameter may be reduced some. In that case things could be looking relatively good. > ... and there was no barium past LES. ... > So, your problem may just be the pressure at the LES. You didn't say if your esophagus was straight or not. At stage 2 I think it likely is fairly straight. If the barium was being stopped by a kink in the esophagus before the LES that would not be something that could be fixed by just treating the LES. But it sounds like your esophagus has no kinks and the barium is getting to the LES, so the problem is just getting it through the LES. Sometimes if the esophagus has become too long and starts to bend down below the top of the stomach then the LES may become kind of kinked so that could also be the problem of it stopping at the LES, but with just double normal diameter I think there is a good chance that it is not the problem or at least that it may not be enough of a problem to rule out a redo. A stage 2 esophagus just does not sound like something that should need to be given up without a fight. I could be wrong though. I would say hold off on judgment until you have talked to a very good achalasia surgeon. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2011 Report Share Posted July 19, 2011 Thank you for the reply ! Â I just turned 40 last month, so I'd like to hold on to all my original parts for as long as possible, but not at the expense of enjoying my life or my kids, you know? Â I really have to wait to see exactly what the radiologist report says about the test this morning. Â He wouldn't let me actually see the images as he said they were simply in real-time and not stills, but the x-ray tech that was in with him asked " so you'd say that was double normal? " and he replied hesitantly " yeah " . Â I did see the reflection of the image as they were talking and it looked like a slightly kidney shaped bag. Â I'm going to have to look into what options are available for me here in Canada, but my previous surgeon retired and recommended that I see this new one that I have an appointment with in two weeks. Â He's supposed to be very good, but I don't know how much experience he has with achalasia. Â I'll meet with him and see what he says, I suppose Thanks so much for the support kim in canada ________________________________ From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Monday, July 18, 2011 10:24 AM Subject: Re: Upper GI this a.m. Â Kim - how old are you? I had an ectomy 3 1/2 years ago with a 21/2 and 5 year old - that was tough but in the end - totally worth it. Not something to be taken lightly and either myo or ectomy - find the best you can - even if it means traveling - I traveled 10 hours for mine (so I don't say that lightly) See what your surgeon says, ask questions - and when you decide/whatever you decide - we're here for you. ~ in NC achalasia free since 2008 > > Well, I'm back from an upper GI scheduled by my new surgeon. Not necessarily a pretty site, imo, but I'm going to put it out there for you all and see if anyone can give me an idea of direction that I'm headed. > > Short story, myo in 98, dilatations almost every year since due to spasm and dysphagia. Today my E is distended to twice normal size (on fasting... can't imagine looking at it with food :/) and there was no barium past LES. I fear that a 2nd myo wouldn't last me all that long, nor would it help with the distension. I guess I'm just wondering if my " fears " will be realized and I'm headed towards 'ectomy. Not really something I'm looking forward to, with a preschooler and a newborn, but I'm ready for whatever I need to do in order to get back to a somewhat normal life. > > Opinions? Any comments will be much appreciated > > kim in canada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2011 Report Share Posted July 19, 2011 The wealth of information you store in your brain Notan is amazing and I'm so grateful that you replied  I spoke to my husband after my tests were done as he is an x-ray tech where we live and he said that I wouldn't be able to see the actual size based on what I was looking at because of the way they do the images, and it would depend on the radiologist and his level of comfort whether he would say exactly how large it was.  I really will just have to wait to talk to the surgeon in two weeks and see what the report says.  You've given me great questions to ask specific to my situation though, and it's so very appreciated.  Because of my pregnancy, it's been almost 2 full years since I've had a dilatation and if that could possibly bide me so more time, then that'd be great.  My last one, my old surgeon said that I was really not getting any relief from the stretches and that I would have to look at other options, so that's sort of been what has been running through my brain for the past two years.  I was scheduled for all of my tests last fall, before I found out I was pregnant, so everything has been put off a year, probably making me think the worst k ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Monday, July 18, 2011 2:40 PM Subject: Re: Upper GI this a.m.  Kim wrote: > > ... Today my E is distended to twice normal size (on fasting... can't > imagine looking at it with food :/) ... > This probably is good news, even if it doesn't sound perfect. Your normal esophageal diameter is probably about 2 cm.. Being double normal probably puts you at about 4 to 4.5 cm.. 4 cm is what is termed stage 2. Normal is stage 1. To be at end-stage, stage 4, you would have to double again. There are people in this support group that have reported that their esophageal diameters were over ten cm. Being reduced to only stage 2 after treatment from stage 3 or 4, would be one definition of success. If your LES can be opened some, your esophageal diameter may be reduced some. In that case things could be looking relatively good. > ... and there was no barium past LES. ... > So, your problem may just be the pressure at the LES. You didn't say if your esophagus was straight or not. At stage 2 I think it likely is fairly straight. If the barium was being stopped by a kink in the esophagus before the LES that would not be something that could be fixed by just treating the LES. But it sounds like your esophagus has no kinks and the barium is getting to the LES, so the problem is just getting it through the LES. Sometimes if the esophagus has become too long and starts to bend down below the top of the stomach then the LES may become kind of kinked so that could also be the problem of it stopping at the LES, but with just double normal diameter I think there is a good chance that it is not the problem or at least that it may not be enough of a problem to rule out a redo. A stage 2 esophagus just does not sound like something that should need to be given up without a fight. I could be wrong though. I would say hold off on judgment until you have talked to a very good achalasia surgeon. notan Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.