Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 I have alot of questions about post-op expectations. I went to cleveland clinic and met with Dr. rice. We didn't hit it off so well so the last couple of months i have just been living with the horrible chest and back pains. After being hospitalized for a week I started looking for another surgeon. I found Dr Mark Ferguson at the university of Chicago. They are supposed to call me the first week of January to schedule me for the bIg E. I have alot of questions about what to expect post-op in relationship to eating and swallowing. any help would be greatly appreciated. my email is kristi@.... Thanks Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hi a, Welcome to the -ectomy club... though I am sorry for you that you need to join us. Lately there have been many -ectomies done amongst us achalasians here on the board. The next one to get it done with is (January 11th) and I am going to get it done somewhere March (at least I still hope I'll be scheduled for March, I am from The Netherlands, where waiting lists are pretty long). a, as there are so many of us having the -ectomy done lately, there has been a lot of writing done about it here on the board. If you just search on the word -ectomy, I bet you'll be surprised by the many answers you'll find to most of your questions. Good luck to you and keep us posted! Isabella esophagectomy I have alot of questions about post-op expectations. I went to cleveland clinic and met with Dr. rice. We didn't hit it off so well so the last couple of months i have just been living with the horrible chest and back pains. After being hospitalized for a week I started looking for another surgeon. I found Dr Mark Ferguson at the university of Chicago. They are supposed to call me the first week of January to schedule me for the bIg E. I have alot of questions about what to expect post-op in relationship to eating and swallowing. any help would be greatly appreciated. my email is kristi@hawksphotogr aphy.com.ThanksKristi Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hey Kristi - WOW!! Sorry you got the big E word but glad you're here with us, it is a tremendous relief to be able to hear directly from people who have had them. How many -ectomies has your surgeon done? You need to find someone who has done in the range of 50-100 per year - they are out there and it makes all the difference. I am scheduled first on Jan. 11th with Dr. Luketich at University of Pittsburgh medical center. He is head of the heart/lung and esophageal surgery center and has done over 700 laproscopic/thorascopic -ectomies. What was it that determined your need for an -ectomy? I'm kind of the odd one here as I still eat pretty well but I've had increasing spasms and more things to add to my list of foods I don't tolerate. I also showed sagging and twisting on my last barium swallow and scope. I was even told I could wait a few years but I want to do this while I'm still healthy and also I need some time to plan for my kids (my girls are 5 and almost 3) so I'm going now. I'm going to echo Isabellas recommendation here and suggest that you search out posts that say esophagectomy and read, read, read. I also googled and google scholared (thanks Carolyn!) and read everything I could find that was about ectomies - beware though - there's a LOT of reports about ectomies and cancer - not so many about us. I also received a HUGE packet of info from the surgeons office with diets, pain management info, post op instructions and a whole slew of pre-op tests to have done. How old are you and how long have you had A? I'm 39 - 40 in March and have had A since the age of 12. Heller with Nissen done in 1989. Keep us all posted and good luck with your appointments. Welcome to the club!! Isabella and I can attest - it makes a HUGE difference when you are not the only one going through it. We're here for you. - in NC 12 days... > > I have alot of questions about post-op expectations. I went to cleveland clinic and met with > Dr. rice. We didn't hit it off so well so the last couple of months i have just been living with > the horrible chest and back pains. After being hospitalized for a week I started looking for > another surgeon. I found Dr Mark Ferguson at the university of Chicago. They are supposed > to call me the first week of January to schedule me for the bIg E. I have alot of questions > about what to expect post-op in relationship to eating and swallowing. any help would be > greatly appreciated. my email is kristi@... > > Thanks > Kristi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 , I think they get a good picture of your esophagus with the barium swallow. That would give them an idea of the size of your esophagus and exactly how large it is. Do you already have an appointment? Good luck! in Michigan > > What are the deciding factors on someone needing to have one of these? Do they use the Upper GI to determine if the esophagus is too large? Or is it seen in the upper endoscopy? > > Just wondering what my fate may be while I am waiting to have the procedures done and have a consult with Dr. Ratner out of Boston. > > hope everyone is enjoying summer, it looks like it has finally arrived in Maine this year > > Thanks in advance! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi , Sorry to hear about all you're going through right now and the uncertainty you have. Nevertheless I have to tell you that I wonder why you are looking into the esophagectomy thing. From what I've read you're newly diagnosed and it's rare that you need an esophagectomy while just being diagnosed with achalasia, even when your achalasia is severe. I don't think you're in the right hospital, when your doc says you don't need a specialist! You need to see a specialist in achalasia!!! And if I were you, I'ld stop worrying about an -ectomy, it's way too soon to start thinking in that direction. Usually a myotomy is the right surgery in achalasia. I've had an -ectomy done myself one year ago. It's been a rough road and it sometimes still is. Nevertheless it's not the end of the world and it gave me back my life after 20 years of very severe achalasia. Stay positive, as you can be helped no matter what. Find yourself a good specialist. Love, Isabella ________________________________ From: lindsaywalk76 <lindsaywalk76@...> achalasia Sent: Saturday, June 6, 2009 6:52:35 AM Subject: Re: esophagectomy Hi there, I have actually had a barium swallow done, but it hasn't really been looked at by anyone but a radiologist who said that I have achalsia. I talked to my primary care doctor about referring me to a gastero doc. but she felt I didn't need one. Today I finally called and asked if she could refer me for a consult because I just need some of these questions answered. I plan on having surgery, it's just hard to think of going through that right now, and I don't know if I should just wait until next year to have the surgery done (when my short term will pay for it) and maybe get a dialation in the mean time, or if this is something I need right away. I know people say the sooner the better but honestly I have had this for a really long time, it's not like it just popped up on me and I have really adjusted to eating with this disorder. With that said, I work at the hospital I had the tests done at so I was able to pull my chart and the radiologist wrote " marked dialation of the entire thoracic esophagus with barium mixed with retained food material, and there is a distal " bird's beak " appearance just proximal to the gastroesophageal junction. There is no esophageal peristalsis noted, and the overall appearance is consistent with achalasia of the esophagus. Impressions: severe achalsia " And then on my CT scan that I had done for something else they wrote " The esophagus shows marked distention. It is fluid filled and measures about 4.8 cm at the level of carina, with distention extending to the proximal thoracic segment. " I understand it, I just don't know how " severe " it is at this point. I think I am just getting myself all worked up Thanks, in Maine > > > > What are the deciding factors on someone needing to have one of these? Do they use the Upper GI to determine if the esophagus is too large? Or is it seen in the upper endoscopy? > > > > Just wondering what my fate may be while I am waiting to have the procedures done and have a consult with Dr. Ratner out of Boston. > > > > hope everyone is enjoying summer, it looks like it has finally arrived in Maine this year > > > > Thanks in advance! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 PS: please tell us where in Maine you live. There are other experienced doctors in the NE, than the ones I mentioned in my previous mail. Maggie **************We found the real ‘Hotel California’ and the ‘Seinfeld’ diner. What will you find? Explore WhereItsAt.com. (http://www.whereitsat.com/#/music/all-spots/355/47.796964/-66.374711/2/Youve-Fo\ und-Where-Its-At?ncid=eml cntnew00000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Dear , You absolutely need to see a specialist. Your primary care is trying to save money. Are you w/ an HMO? I may be wrong, (often am) but you sound kind of hesitant and non-threatening. Achalasia is better managed if you are well informed, as you are getting now, and very assertive. It is a rare disease and you will find it more helpful to find that assertive domineering aspect to your personality, demanding to move up the line. Not sure, but seems like I've heard of a LOT larger measurements for severe esophagus stretching. Also, although your radiologist should be applauded for the diagnosis, it is unlikely that he/she can determine the amount of peristalysis. A manometry is the ultimate test for that and there is no point in getting one until you are at the hospital where you have found a gi that is experienced and highly regarded. Go to the largest teaching medical center that is feasible to you, even if it is out of your network, look up the head of the gi department and call them. They will give you insurance advice. DO NOT waste your time and worry with inexperienced doctors. That gi very likely might call you back on the phone. Although a dialation can be a very valid first treatment if you just aren't ready for surgery, but surgery first is often the best, but only with very experienced surgeons. There are probably fewer than 10 surgeons and an equal number of gi's in the US that are really experienced w/ achalasia. This is kind of a life lesson to be assertive about your own health and it will expand to other parts of your life, if needed. Sandy > > > > > > What are the deciding factors on someone needing to have one of these? Do they use the Upper GI to determine if the esophagus is too large? Or is it seen in the upper endoscopy? > > > > > > Just wondering what my fate may be while I am waiting to have the procedures done and have a consult with Dr. Ratner out of Boston. > > > > > > hope everyone is enjoying summer, it looks like it has finally arrived in Maine this year > > > > > > Thanks in advance! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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