Guest guest Posted March 2, 2010 Report Share Posted March 2, 2010 How is it that symptoms can come and go for some people when this is supposed to be a degenerative disease? I thought that would mean once functionality is lost it wouldn't be able to get better. I sometimes think not enough is known about this disease and too many assumptions are made. I would like to explore supplements/vitamins that may help before deciding to alter my anatomy permanetly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2010 Report Share Posted March 3, 2010 On 3/2/2010 10:43 AM, blicky77 wrote: > ... I sometimes think not enough is known about this disease and too many assumptions are made. ... Too much is not known, but the destruction of certain esophageal nerves is well documented. There is not just one type of nerve that controls the LES. There is more than one type of nerve that effects LES relaxation and other types that effect LES contraction. One type of those for relaxation seems to suffer most of the damage. That damage does not happen all at once. Like a person that is chronically sick and may have good days and bad days so too these nerves may have ups and downs and the other nerves may also perform better under certain situations in making up the difference. Also it is not completely understood how other cells in the esophagus, such as ICC, mast cells and immune cells, effect the nerves, and how those effects may change from day to day. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Yes, not enough is known about this disease but it would be a mistake to believe, that in any degenerative disease, symptoms simply go from bad to worse. In fact, it is well known that there are many small ups and downs but over time, overall, the situation degenerates. On any given day you can feel great but tomorrow you can feel the same, better or worse. Plus your symptoms are not a good index of what is going on inside your body. How you feel is the result of a complex interaction among many, many factors. Your nerves can be dying and you would not feel it because they are responsible for sensation too. So in some way feeling better means things are getting worse. However, don't fool yourself; some things are well known about this disease. Once the esophagus is stretched, it will not go back to its original shape. It is not like an artery that can be greatly stretched and yet shrink back once the problem is fixed. It is also known that once an esophagus gets too dilated, it will sag ever lower than the entrance to the stomach. This is the dreaded " J " pouch that signals end stage achalasia. The esophagus becomes too damaged to work anymore or it ruptures. Then your only option is to have it removed. Surgery was not always an option for achalasia so what happens when nothing is done is well documented and not pretty. I understand where you are coming from because none of us wanted to alter our anatomy, believe me. However, there are no vitamins or minerals that can possible be effective. There is no protocol that could even theoretically be useful. I have a masters degree in nutrition from Bastyr University (google it) and if there was a natural treatment for this, I would know. So explore but don't wait too long. It may be hard for you to believe, but the best result comes when surgery is done early. Beware that there are people on the internet who prey on those who face the sort of challenges we do. They will tell you what you want to hear and make a profit off of it. If anyone is telling you a vitamin protocol can prevent esophageal damage, make sure you know how to reach them off line so you can sue them later. Maureen in Mukilteo > > How is it that symptoms can come and go for some people when this is supposed to be a degenerative disease? I thought that would mean once functionality is lost it wouldn't be able to get better. I sometimes think not enough is known about this disease and too many assumptions are made. I would like to explore supplements/vitamins that may help before deciding to alter my anatomy permanetly. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Maureen, I would caution you to be careful with how you word things, particularly since you try to make it sound like you have professional expertise in matters of this nature. I'm referring to the following statements in bold: > However, don't fool yourself; some things are well known about this disease. Once the esophagus is stretched, it will not go back to its original shape. It is not like an artery that can be greatly stretched and yet shrink back once the problem is fixed. It is also known that once an esophagus gets too dilated, it will sag ever lower than the entrance to the stomach. This is the dreaded " J " pouch that signals end stage achalasia. The esophagus becomes too damaged to work anymore or it ruptures. Then your only option is to have it removed. Surgery was not always an option for achalasia so what happens when nothing is done is well documented and not pretty. > > I understand where you are coming from because none of us wanted to alter our anatomy, believe me. However, there are no vitamins or minerals that can possible be effective. There is no protocol that could even theoretically be useful. I have a masters degree in nutrition from Bastyr University (google it) and if there was a natural treatment for this, I would know. So explore but don't wait too long. It may be hard for you to believe, but the best result comes when surgery is done early. Surgery is NOT always the best result, nor is it always necessary. I've been symptomatic for almost two full decades, and I haven't had surgery, and I haven't gotten to the point where it's " not pretty " . My last dilation was a dozen years ago, and there has been no further stretching of my esophagus. Since my last dilation, I've seen members of this group go through 1-2 surgeries followed by 1-2 dilations. Surgery for them was NOT a better result than dilation was for me. We're all different, and there simply hasn't been enough research to be able to say that XYZ is the optimal treatment for achalasia. Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 wow, that is a confrontational statement. > > Maureen, I would caution you to be careful with how you word things, > particularly since you try to make it sound like you have professional > expertise in matters of this nature. I'm referring to the following > statements in bold: > > > However, don't fool yourself; some things are well known about this > disease. Once the esophagus is stretched, it will not go back to its > original shape. It is not like an artery that can be greatly stretched > and yet shrink back once the problem is fixed. It is also known that > once an esophagus gets too dilated, it will sag ever lower than the > entrance to the stomach. This is the dreaded " J " pouch that signals end > stage achalasia. The esophagus becomes too damaged to work anymore or it > ruptures. Then your only option is to have it removed. Surgery was not > always an option for achalasia so what happens when nothing is done is > well documented and not pretty. > > I understand where you are coming > from because none of us wanted to alter our anatomy, believe me. > However, there are no vitamins or minerals that can possible be > effective. There is no protocol that could even theoretically be useful. > I have a masters degree in nutrition from Bastyr University (google it) > and if there was a natural treatment for this, I would know. So explore > but don't wait too long. It may be hard for you to believe, but the best > result comes when surgery is done early. > > Surgery is NOT always the best result, nor is it always necessary. I've > been symptomatic for almost two full decades, and I haven't had surgery, > and I haven't gotten to the point where it's " not pretty " . My last > dilation was a dozen years ago, and there has been no further stretching > of my esophagus. > Since my last dilation, I've seen members of this group go through 1-2 > surgeries followed by 1-2 dilations. Surgery for them was NOT a better > result than dilation was for me. > We're all different, and there simply hasn't been enough research to be > able to say that XYZ is the optimal treatment for achalasia. > Debbi in Michigan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Debbi wrote: > We're all different, and there simply hasn't been enough research to be > able to say that XYZ is the optimal treatment for achalasia. > Debbi in Michigan > Like you said, " be careful with how you word things. " Statistically speaking, myotomy may be the best treatment for achalasia. Whether or not those statistics provide the best answer for any particular achalasic is a different problem. So if a person is considering myotomy it would be, statistically speaking, a good guess that it would be best, but that does not mean that in the end it will turn out to be a good guess for that person. I am still of the opinion that when it comes to achalasia there are no right answers, just good guesses. For reference links about dilatation see: http://www.zotero.org/groups/achalasia_atheneum/items/collection/2179158 For about dilatation failures see: http://www.zotero.org/groups/achalasia_atheneum/items/collection/2179160 For about myotomy see: http://www.zotero.org/groups/achalasia_atheneum/items/collection/2179005 For about myotomy long-term see: http://www.zotero.org/groups/achalasia_atheneum/items/collection/2179157 For about myotomy failure and predictors see: http://www.zotero.org/groups/achalasia_atheneum/items/collection/2179041 notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 In achalasia , " toomuchclutter " <sandycarroll@...> wrote: > wow, that is a confrontational statement. Wow, that is a helpful statement <not>. I'm not interested in starting flame wars here, Sandy. If you feel the need to engage in such activities, please at least take it off-list so other people don't have to get involved. The point of this forum is to HELP each other, not run each other down. That was the purpose of my reply -- to point out that speaking in absolutes is not necessarily in everyone's best interests. I'm not anti-myotomy, either. I just like to point out that there are different options and NONE of them offer any guarantees. In achalasia , notan ostrich <notan_ostrich@...> wrote: > Like you said, " be careful with how you word things. " Statistically speaking, myotomy may be the best treatment for achalasia. Whether or not those statistics provide the best answer for any particular achalasic is a different problem. So if a person is considering myotomy it would be, statistically speaking, a good guess that it would be best, but that does not mean that in the end it will turn out to be a good guess for that person. > I am still of the opinion that when it comes to achalasia there are no right answers, just good guesses. My qualifier " we're all different " at the beginning of the paragraph was intended to convey that sentiment, but I can see that the message doesn't necessarily come across the same without adding " for any one person/individual " at the end of the sentence. Thank you, notan, for further clarifying my message. As usual, your posts are helpful and informative. Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 toomuchclutter wrote: > wow, that is a confrontational statement. > > I think how it comes across depends on the voice you read it with. Try reading it like it is your own words to a friend you are trying to caution because you want that friend to be able to do the best she can for the community here. notan Quote Link to comment Share on other sites More sharing options...
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