Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Cheryl, You indicate you were diagnosed at age 30, I assume you had symptoms prior to the diagnosis. At age 35 I would think you could very well get along with out an esophagectomy. This of course depends on progression of the disease. In my case I was diagnosed with severe swallowing problems at age 14. (I am 68 now) I missed a year of school and lost some 40 pounds. There were no treatments at time (1947) so I learned to live as best I could with the disease. I never heard the word achalasia until 1976 when I ended up in an emergency room with severe pain that had continued for about 14 hours. It was then that a GI Dr. used the term achalasia and said that I did not have to live like this and suggested the Heller Myotomy, which I had they also did the wrap. 14 months later they had to undo the wrap as it began to cause more problems than I had prior to surgery. After this surgery I was pretty much back to where I was before the myotomy. So began the long period of dilatations. In 1989 I was transferred to Kansas City and referred to a GI Dr. at Kansas University Medical Center. After early examinations I was told that my esophagus had stretched to about 2-1/2 times the size of my stomach. I could hold a whole meal in my esophagus, the plus to this is that I could eat in a restaurant and wait until I arrived home to empty it out. At any rate the prognosis for me was not good as the esophagus had begun to collapse in on itself, pain returned which seemed to be aggravated by stress and I was told that this condition was a breeding ground for esophageal cancer. In 1993 losing weight again (30lbs) I along with my DRs. GI and surgeon decided on the esophagectomy with gastric pull up. I was 17 days in the hospital 9 of those in intensive care. That was 8 years ago and while 5 of those years were tough because scar tissue had formed at the surgical sight swallowing was about as bad as it had ever been. Some Doc's were even talking surgery again and I said absolutely not. So I began the dilatations again there didn't seem to be any change until I insisted that they try a larger balloon to see if they could break lose the scar tissue which had formed a web like structure at the surgical site. They agreed to this as long as I understood the very good possibility of a perforation. I agreed to this and yes a perforation did occur, while at the time I thought there was no where to go from here. However the scar tissue was about 80 percent removed and did not appear to be growing back. So here I am a age 68 finally able to eat about anything, I have gained weight my overall health has improved. I have to eat several small meals a day because I don't have the capacity of a normal esophagus and stomach. I will always have the reflux problem but I can live with that. As I look back I don't know what I would have done differently. Well my response to you question has gone on and on, but I didn't think I could answer without giving you some background. I guess the point I was trying to make regarding age and time of diagnosis for me was 46 years to esophagectomy. Perhaps if there had been treatment in the first stages things might have worked out differently. If there is anything else you would like to know I would be glad to try and answer. Best regards. Fitzgerald Re: Your esophagectomy!! ,i would like to get more info. on youresophagectomy!!It seems the elders of achalasia seem to have had thissurgery. Please give me some insight, is this roadus younguns may have to take??? (diagonosed at age 30now 35)!!I would like to know how many others have had theiresophaguses removed. What is the procedure and how doyou cope?Cheryl Cini--- Fitzgerald <edfitz65@...> wrote:> ,> I experienced the spitting up in my early days of> Achalasia. The real danger when this happens is> aspirating food stuff into the lungs. Even now that> I sleep with head and chest raised I am told by my> Dr. that I can still micro aspirate. Whenever I> visited the Dr. he indicated that I had what he> referred to as a crackling sound at lower> extremeties of the lungs. Since I had my esophagus> removed my stomach replaces the esophagus so the> problem with micro aspiration still exists. Just> wanted to share my experience with all.> Ed__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 , Thanks for your information! My curosity has been satisfied. I often wonder years from now what kind of condition my esophagus will be in. Hopefully with the early diagnosis it will save me and plenty of others from having an esophagectomy. Thanks again, Cheryl --- Fitzgerald <edfitz65@...> wrote: > Cheryl, > You indicate you were diagnosed at age 30, I assume > you had symptoms prior to the diagnosis. > At age 35 I would think you could very well get > along with out an esophagectomy. This of course > depends on progression of the disease. In my case I > was diagnosed with severe swallowing problems at age > 14. (I am 68 now) I missed a year of school and lost > some 40 pounds. There were no treatments at time > (1947) so I learned to live as best I could with the > disease. I never heard the word achalasia until 1976 > when I ended up in an emergency room with severe > pain that had continued for about 14 hours. It was > then that a GI Dr. used the term achalasia and said > that I did not have to live like this and suggested > the Heller Myotomy, which I had they also did the > wrap. 14 months later they had to undo the wrap as > it began to cause more problems than I had prior to > surgery. After this surgery I was pretty much back > to where I was before the myotomy. So began the long > period of dilatations. In 1989 I was transferred to > Kansas City and referred to a GI Dr. at Kansas > University Medical Center. After early examinations > I was told that my esophagus had stretched to about > 2-1/2 times the size of my stomach. I could hold a > whole meal in my esophagus, the plus to this is that > I could eat in a restaurant and wait until I arrived > home to empty it out. At any rate the prognosis for > me was not good as the esophagus had begun to > collapse in on itself, pain returned which seemed to > be aggravated by stress and I was told that this > condition was a breeding ground for esophageal > cancer. In 1993 losing weight again (30lbs) I along > with my DRs. GI and surgeon decided on the > esophagectomy with gastric pull up. I was 17 days in > the hospital 9 of those in intensive care. That was > 8 years ago and while 5 of those years were tough > because scar tissue had formed at the surgical sight > swallowing was about as bad as it had ever been. > Some Doc's were even talking surgery again and I > said absolutely not. So I began the dilatations > again there didn't seem to be any change until I > insisted that they try a larger balloon to see if > they could break lose the scar tissue which had > formed a web like structure at the surgical site. > They agreed to this as long as I understood the very > good possibility of a perforation. I agreed to this > and yes a perforation did occur, while at the time I > thought there was no where to go from here. However > the scar tissue was about 80 percent removed and did > not appear to be growing back. So here I am a age > 68 finally able to eat about anything, I have gained > weight my overall health has improved. I have to > eat several small meals a day because I don't have > the capacity of a normal esophagus and stomach. I > will always have the reflux problem but I can live > with that. As I look back I don't know what I would > have done differently. Well my response to you > question has gone on and on, but I didn't think I > could answer without giving you some background. > I guess the point I was trying to make regarding age > and time of diagnosis for me was 46 years to > esophagectomy. Perhaps if there had been treatment > in the first stages things might have worked out > differently. If there is anything else you would > like to know I would be glad to try and answer. > Best regards. > Fitzgerald > > > Re: Your esophagectomy!! > > > , > > i would like to get more info. on your > esophagectomy!! > > It seems the elders of achalasia seem to have had > this > surgery. Please give me some insight, is this > road > us younguns may have to take??? (diagonosed at age > 30 > now 35)!! > > I would like to know how many others have had > their > esophaguses removed. What is the procedure and > how do > you cope? > > Cheryl Cini > > > --- Fitzgerald <edfitz65@...> wrote: > > , > > I experienced the spitting up in my early days > of > > Achalasia. The real danger when this happens is > > aspirating food stuff into the lungs. Even now > that > > I sleep with head and chest raised I am told by > my > > Dr. that I can still micro aspirate. Whenever I > > visited the Dr. he indicated that I had what he > > referred to as a crackling sound at lower > > extremeties of the lungs. Since I had my > esophagus > > removed my stomach replaces the esophagus so the > > problem with micro aspiration still exists. Just > > wanted to share my experience with all. > > Ed > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Ed: Read your reply to Cheyl regarding your esophagectomy. I printed it out and will keep it with my achalasia file. Thanks. Barbara in Fla. Quote Link to comment Share on other sites More sharing options...
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