Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 notan wrote: > This message is for those wanting to know what end-stage achalasia is. If forgot to add one very important point. Not everyone progress to end-stage. Some don't progress, some progress slowly and some progress quickly. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 That is one thing that us definitely true about achalasia, you never know how aggressive it is going to be. My first myotomy was December 1993. At that time not much was being said, or heard of. My surgeon was very good in her treatment with me, and it lasted 11years. 2004 my esophagus was in such bad shape that Dr Rice wanted to do the ectomy but I wasn't mentally ready for it, and opted for a 2nd myotomy. From that point it progressed rapidly, and 3 years later I had the esophagectmoy. This is a decision that I haven't regretted. It's like said in her post, you get your life back and it seems normal, if you can call it that. I have learned a lot from this board. Notan, you put in a lot of time researching and trying to find answers that we all ask. I don't post much, but I read each day and try to respond as I can. Between my 2 jobs and personal life it gets a little hectic. I wish each and all the best of eating. in West Virginia Sent from 's iPhone On Mar 3, 2011, at 11:44 PM, notan ostrich <notan_ostrich@...> wrote: > notan wrote: >> This message is for those wanting to know what end-stage achalasia is. > > If forgot to add one very important point. Not everyone progress to > end-stage. Some don't progress, some progress slowly and some progress > quickly. > > notan > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Is there anything one could do after a myotomy to slow the progression fo the achalasia? After a myotomy, does the condition progress as a result of a new obstruction? > This message is for those wanting to know what end-stage achalasia is. If forgot to add one very important point. Not everyone progress to end-stage. Some don't progress, some progress slowly and some progress quickly. notan ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 My doctor called my achalasia end stage because of the pig tail shaped esophagus and pockets in it.It doesn't seem to be stretched too bad yet I don't think. I now have Barretts also, so I must be scoped once a year.I am hoping I can go at least another ten years before they even think about an Ectomy.I had no idea I even had Achalasia until 1 1/2 years ago. > > This message is for those wanting to know what end-stage achalasia is. > > End-stage achalasia, typically is a massively dilated and tortuous > oesophagus. It is also known as Stage IV achalasia or megaesophagus. The > stages of achalasia are; Stage I-esophageal dilation up to 2-2.5 cm; > Stage II-dilation up to 2.5-4 cm; Stage III up to 5-8 cm and Stage IV – > lengthening and dilation of the esophagus over 8 cm. I have seen some > paper refer to end-stage as starting a 6 cm. As the esophagus lengthens > it bends (becomes tortuous) that often produces an S shape called > sigmoid (the Greek letter for S is sigma). Stage IV is called End-Stage > because there is no stage V and it is final result of lengthening and > dilation. Sometimes, but not always, at this stage the esophagus is so > dysfunctional and unresponsive to treatment that esophagectomy becomes > the treatment option. End-stage does not mean it will kill you though > for some tube feeding or esophagectomy are needed to survive. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 thanks so much for this info Notan. I had an endoscopy last year and the result was 'tortuous oesophagus'. I didn't clarify this as a definition (unusual for me as I ask a lot of questions!) but it would certainly explain my very severe symptoms. I am due to see my consultant soon so will definately be asking more then. I am interested in people's comments and experiences of an esophagectomy. I am not ready to consider this emotionally yet but would love to hear what people think. thanks so much. Kay xx > > This message is for those wanting to know what end-stage achalasia is. > > End-stage achalasia, typically is a massively dilated and tortuous > oesophagus. It is also known as Stage IV achalasia or megaesophagus. The > stages of achalasia are; Stage I-esophageal dilation up to 2-2.5 cm; > Stage II-dilation up to 2.5-4 cm; Stage III up to 5-8 cm and Stage IV – > lengthening and dilation of the esophagus over 8 cm. I have seen some > paper refer to end-stage as starting a 6 cm. As the esophagus lengthens > it bends (becomes tortuous) that often produces an S shape called > sigmoid (the Greek letter for S is sigma). Stage IV is called End-Stage > because there is no stage V and it is final result of lengthening and > dilation. Sometimes, but not always, at this stage the esophagus is so > dysfunctional and unresponsive to treatment that esophagectomy becomes > the treatment option. End-stage does not mean it will kill you though > for some tube feeding or esophagectomy are needed to survive. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 Sorry Notan, one more thing. Is there evidence that end stage reverts on it's own. My deterioration since the myotomy has been gradual and the severity can fluctuate. thanks so much for all your info. Kay > > > > This message is for those wanting to know what end-stage achalasia is. > > > > End-stage achalasia, typically is a massively dilated and tortuous > > oesophagus. It is also known as Stage IV achalasia or megaesophagus. The > > stages of achalasia are; Stage I-esophageal dilation up to 2-2.5 cm; > > Stage II-dilation up to 2.5-4 cm; Stage III up to 5-8 cm and Stage IV – > > lengthening and dilation of the esophagus over 8 cm. I have seen some > > paper refer to end-stage as starting a 6 cm. As the esophagus lengthens > > it bends (becomes tortuous) that often produces an S shape called > > sigmoid (the Greek letter for S is sigma). Stage IV is called End-Stage > > because there is no stage V and it is final result of lengthening and > > dilation. Sometimes, but not always, at this stage the esophagus is so > > dysfunctional and unresponsive to treatment that esophagectomy becomes > > the treatment option. End-stage does not mean it will kill you though > > for some tube feeding or esophagectomy are needed to survive. > > > > notan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 wrote: > ... I don't post much, ... Completely reasonable, but it is always good to get your posts and updates. I would hate for this site to be just the kind of posts I make. One of the reasons I will miss Isabella's posts is that they were so real and easy to relate to. People like Isabella and you provide a kind of vitality that makes this like being in the presence of others. Who needs TV drama? This is real life and we can help each other. Your story is important and we are thankful for as much of it as we get. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Mat T wrote: > Is there anything one could do after a myotomy to slow the progression fo the achalasia? Your esophagus is pretty much just a hollow tube of muscle. It is a lot like an earth worm. When a worm dies it becomes longer and very flimsy. This is because the muscles loose their tone. It is possible that something like that happens as the muscles of the esophagus atrophy and loose tone. The esophagus become dilated, longer and easier to distend. Others here have reported a surgeon describing doing surgery on an end-stage esophagus as being like working on wet paper. If, and I say IF, there is nothing you can do to prevent the loss of the nerves that leads to atrophy then there isn't much you can do to stop the atrophy. Sometimes in achalasia the LES (Lower Esophageal Sphincter) is not atrophied it hypertrophied from all of the intense spasming it does. I suspect that those that have strong enough spasms in the lower esophagus above the LES may be more likely to avoid the atrophy and dilation than those with little or no muscle action in the lower esophagus. I don't really know though. So, if there is progressive nerve damage that is caused by an infection, toxin, immune disorder, or genetic flaw and it leads to decreased muscle action of the esophagus then you would have to find a way to stop that process. A number of studies have shown more nerve loss in end-stage achalasia than in earlier stages. It may also be that distention itself can lead to more nerve damage. Nerves don't like to be stretched too far. When we fight to get food down but it stays in the esophagus and we continue to eat more that causes the esophagus to distend. The farther, longer and more often the esophagus is distended may increase the risk of increasing nerve damage. In older, decades ago, papers air trapped in the esophagus due to a failure of the UES (Upper Esophageal Sphincter) was given as a possible cause for esophageal distention and dilation. I don't remember seeing that in more recent papers. Maybe they gave up on that idea. It does make me wonder about the gas from carbonated drinks. There is enough pressure there to be a concern while a myotomy is healing. Is it enough to cause nerve damage? Maybe, maybe not. I don't really know. How the UES functions is going to make a difference. So, if distention does cause nerve damage then you want to prevent distention or at least reduce the time and distance the esophagus is distended. Repeated distention of the esophagus may cause it to become permanently dilated even without any nerve damage simply because of the intense stretching. This is a bit like creating a loop in an ear lobe for ear gauge jewelery. You stretch it a little more each time over a long time. When the esophagus is holding food it becomes heavy and may try to sag and lengthen. Again air trapped in the esophagus may be a factor in stretching, or maybe not. It seems like keeping the esophagus clear is a good idea. Once the esophagus starts to sag that is going to be hard to do. > After a myotomy, does the condition progress as a result of a new obstruction? A new obstruction could lead to food being trapped causing distention. A number of studies have reported that damage to the esophagus from acid reflux (causing strictures) is a major cause of long-term myotomy failure. I think one thing you can do is try to avoid acid reflux. Hence my position on another topic. Selected links of interest: Repetitive proximal esophageal contractions: a new manometric finding and a possible further link between Parkinson's disease and achalasia.http://www.ncbi.nlm.nih.gov/pubmed/6088351 http://www.ncbi.nlm.nih.gov/pubmed/11453565 " We speculate that the common link between all three disease processes may be poor distensibility of the esophagus. " Evolutive radiological changes of the esophagus in patients with achalasia who did not receive treatment. http://www.ncbi.nlm.nih.gov/pubmed/17342353 " These results suggest that there is a progressive deterioration in the radiological parameters of the esophagus in patients with achalasia not treated over a 5-year period of observation. " Achalasia - An Update http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115/?tool=pubmed " Early disease has more of an inflammatory component, with some of the ganglion cells appearing to be intact, while end stage disease is associated with complete loss of ganglion cells and replacement with myenteric fibrosis. " Ear gauge http://www.gettyimages.com/detail/83589021/Photodisc notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 I too will miss Isabella. She helped me so much when having all my issues. We talked daily to see how each of us were doing. The one thing I have found is when you actually put a face to the people you talk with so much. Getting to meet and understand what each of us have gone thru is so interesting. I recently noticed a post from someone who is around a 3 hour drive from me. This disease is so strange. I'm currently fighting an acid reflux issue. I've gained more weight than what Dr Rice has advised me to be. I feel that between that and some of my current meds are the issue. Enjoy the day, I'm off to relax for a few hours. in WV Sent from 's iPhone On Mar 6, 2011, at 12:48 PM, notan ostrich <notan_ostrich@...> wrote: > wrote: > > ... I don't post much, ... > > Completely reasonable, but it is always good to get your posts and > updates. I would hate for this site to be just the kind of posts I make. > One of the reasons I will miss Isabella's posts is that they were so > real and easy to relate to. People like Isabella and you provide a kind > of vitality that makes this like being in the presence of others. Who > needs TV drama? This is real life and we can help each other. Your story > is important and we are thankful for as much of it as we get. > > notan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Thanks Notan, really helpful. Kay > > ... Is there evidence that end stage reverts on it's own. > > Sorry, no, not that I know of. > > > My deterioration since the myotomy has been gradual and the severity can fluctuate. > > I assume you are talking about your symptoms. Like how easy it is to > eat. That is not always a good indication of the progression. The > esophagus can dilate and lengthen without causing much change in > symptoms. Then one day it seems to not work and you get a barium X-ray > and find it is now sigmoid. If you get regular checkups of the esophagus > you can probably avoid the surprise but you may not be able to avoid the > progression. Many of us have better days and worse days or even months > at a time. It can make knowing what long-term changes are actually > happening. There are probably people who have end-stage and have no idea > that they do. They just fight on as they have for years. > > The good news is that most people don't ever make it to an end-stage > diagnosis. Some because they either just stop progressing or do so > slowly and others because they are older when they get achalasia. And > possibly some are never diagnosed because they stopped going to doctors > for their achalasia and just live with it still being able to get by > somehow. > > notan > Quote Link to comment Share on other sites More sharing options...
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