Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 wow. You are really, really doing well, Chaitanya....from the emotional/research/etc...stand point! I applaud you for taking your health into your hands & going forward with such a great attitude under difficult obstacles. I understand what you mean about wishing, in this instance, you weren't unique!!!! I struggled with that a lot when I was first diagnosed. Please, please keep us posted! And for everyone who just skimmed or skipped this....apparently chiropractic can help in some instances!!!!! Cindi ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Chaitanya, What a nice lively person you must be. I really applaud you for your positive attitude. Believe it or not I have a similar problem with my back. My physiotherapist is trained in Chiropractic manipulation and she has been saying for some time that when my back is 'in' my oesophagus behaves itself. So yes I have had a similar experience, but not quite so dramatically. I have also had chicken pox and shingles so there are other possible causes and who know which came first. The nerves are definitely damaged beyond repair and I have no peristalsis. I also have a very distended lower oesophagus with a large diverticulum which does not help very much. When all this fills with old food there is no space for any more. I had a myotomy about 18 months ago and it was not such a great success, but I have since had a dilatation and now I can drink plenty of fluids and eat almost anything except salads and raw stuff. I do however feel it prudent with the baggy flaccid oesophagus it is not a good idea to eat too much solid food but to stick to mainly liquid food so that there is not that build up of junk in my oesophagus again. Having said that you can't imagine how hard it is to resist to just have a little to chew on! I have bought a Braun stick "liquidizer" and with that turn just about everything into a soup or puree. It tastes good too. How about you letting us all see your list do questions for the doctor ? We have all made a list at some time or other. Debbi posted a great one some time ago. Good luck with your doctors appointment and let us know what happened. Joan Johannesburg South Africajpearse@... Re: Chaitanya Thanks for the reply Cindi - You are a very enthusiastic person. This alone will help you overcome most obstacles.> Chaitanya- what a beautiful name!My name is from India - Chaitanya means "consciousness, perception, spiritual awareness, living energy, enthusiasm - the true form and qualities of the eternal soul" Rupa means "beautiful form, beautiful female form" so Chaitanya rupa means a beautiful woman with much energy, enthusiasm and spiritual awareness. > Wow. What a mess, you poor thing. I think you are totally on the right> track because you have researched everything well and are pushing to get the> best treatment. I'm surprised a chiropractor would even know about> achalasia....I was teaching the RN's about it after my myotomy!> Yes it is a pretty big mess, but I have been able to deal with it simply until now. I have been working with a very good chiropractor (a professor at Life Chiropractic College here in the Atlanta area)He is very much up to date on things and I have been teaching him what he didn't understand since 1998. (About 6 years now) He has been willing to learn whatever he can. He is very kind and considerate.My problem has helped him to verify what chiropractic doctors have said for years. That misaligned spines and spinal injury can cause all sorts of internal problems. Wouldn't be surprised if he brings this up in some of his classes.My husband was supposed to have surgery for Carpel Tunnel Syndrome. Our Chiropractor did adjustments and now no surgery is required.In 1997, I had a severe episode of Achalasia. I couldn't swallow and threw up most everything for 5 weeks. We had no insurance and my husband had just started working again (we had spent about 10 years as volunteers here in the USA and in India) My husband has always believed in the effectiveness of Chiropracty (I was raised by an Allopathic Research Scientist (human and animal nutrition)who kind of turned up his nose at such things).After 5 weeks of suffering (boy can I be stubborn and stupid!!!) I went to a chiropractor and with one adjustment I was swallowing again. Since that time with Yoga, hot water bottles and adjustments, things have been fairly "normal". I mean, I have to drink water to get things down. I have to chew and swallow carefully. I know more about my esophagus than I ever wanted to know!!!! And worst of all, I have to eat alone. You all know what I mean.Now these things I have done are not working. Even adjustments are pulled back out by the Esophogeal spasms. Every night I sleep in the hospital bed my HMO got me with a hot water bottle to make sure the spasms don't bounce off each other to a painful crescendo.My chiropractor has stated that the Achalasia has a life of it's own now and he recommends pursuing more conventional options. He thinks the surgery is a good idea. That's a lot coming from a chiropractor.> It's my understanding, too, that the bigger the E, the less successful the> myotomy, but some on here have had successful myotomies with very dilated E> s. My esophagus is now the esophagus from Hell. The endoscopist says it is tortuous, dilated (like another stomach) and fallen to the right. I got a p-trap in my belly. Oh oh... oh oh (sounds like a new hit country song - what ya think?)If anyone has had a successful myotomy with a large or "sigmoid" esophagus, please let me know about your experience. The more info I can collect, the more we have to work with to make a decision.> It seems like your case is very unique and I think that the best thing> to do is make sure you feel confident in the surgeon you are dealing with. > > How many myotomies/E-bypasses/Esophagectomies has he/she done? Who would he> refer you to if he had little experience in one of these areas? What is his> success rate? (93% is about average) And, in your case, is there something> they can do to your back/nerves/etc...that might help first? Thanks for the info. I have typed up a list of questions for the surgeon. I can post it for anyone who wants to see it and maybe we can revise it together.This is one time I would rather not be unique........>After all, if> a chiropractor sometimes helps, maybe there is a better way to treat this. I have discussed this with my Primary Care Physician. She immediately took X-rays and referred me to Orthopedics about a month out. I may contact her again about Neurology. I will also present this info to the surgeon when we meet him. Wouldn't it be a perfect world if specialists were more integrated in their approach. Hey after all there's a person connected to this tube!!!!! And the bolus goes around and around and it comes out here?!!!From research, it seems that Achalasia is pretty much a neurological problem. In 1988 one doctor said something to me about cutting nerves to the esophagus. (I ran for my life on that one - never went back either).I have found that there are two recognized forms of AchalasiaPrimary ideopathic Achalasia - of unknown origin. Not caused by anything obvious.Secondary Achalasia - caused by some discernable condition. (my back injury) However it is caused, seems it leads to the same result.> Please keep us posted & if you don't feel good about the surgeon, get a> second & third opinion. I have a friend who is a surgeon who actually told> me that your gut feeling is one of your best indicators. Cindi in> PennsylvaniaMy husband works for BellSouth so we have Kaiser Permanente for our HMO. They are the best in this area according to all reports. They have been taking good care of me. They need some fires lighted, but they do move when pushed.They do allow a second opinion. The nurse told me that the doctor is very good and has done these procedures (myotomy and esophagectomy) many times. Will get more info at the consultation.> > PS - where are you located? Your case might be worth a trip to Cleveland.We are in North GA - 50 miles north of Atlanta in the foothills of the Appalacian Mountains. Spring is in full bloom and the trees are all leaved in. Plenty of O2 and soothing bird songs.Since I wrote, my visit to the Surgeon has been expedited. I have a May 4th appt. to consult with the Doctor. I had to be obnoxious (politely - this is the South ya'all know!!!) to make sure I didn't fall through the cracks. Sometimes it don't pay to be Ms Nice-girl.The scheduling nurse for the doctor says he was out on vacation this week, so she has to talk directly to him to make the appoinment sooner. He is back in the office next Tuesday so I should see him next week. They are taking this very seriouslyRight now I am three weeks on liquids only. First week very little going down. Second week a pinhole opening. Now I can get most liquids down with some struggle. The biggest problem for me is my trigger is my back. When I travel in cars, if the suspension isn't real smooth, my back goes out and I am down the road again (if you know what I mean) For this reason I rarely leave home unless my Achalasia has been a real good girl.The internet has been a lifesaver for me in many ways. Now it has helped me find out more about this disease and about really nice people like you who are living with it.Thanks for replying. It is good to be noticed.Chaitanya Rupa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 > If anyone has had a successful myotomy with a large or " sigmoid " > esophagus, please let me know about your experience. The more info I > can collect, the more we have to work with to make a decision. There was some discussion at the conference about how *sometimes* an esophagus will shrink back down a bit after a myotomy. They didn't discuss exact sizes, etc., though. Another thing that they talked about was how a very stretched-out esophagus is like " tissue paper " when the surgeon tries to work with it... it just kind of falls apart. Again, they didn't say at what size that happens, though. One thing that had been discussed several times here in the group and that was reinforced again at the conference was that surgery is easiest and most successful when performed earlier rather than later. I hope that you can find a surgeon who is experienced in your area. If not, it is definitely in your best interest to travel to one of the cities that is considered a " Center of Excellence " in treating achalasia. We are a very unique lot, and we deserve a very unique doctor / surgeon! Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 > And for everyone who just skimmed or skipped this....apparently > chiropractic can help in some instances!!!!! > > Cindi Cindi -- I just wanted to point out that chiropractic treatment is probably only going to be helpful for people whose achalasia is " caused by " something related to a back injury (as was discussed in the original message.) I love my chiropractor and have been seeing my current one for almost five years now; I firmly believe in chiropractic treatment for back problems and things caused by back problems (leg pains, etc.) I just don't want people to see your statement and use that as an " excuse " to not seek treatment from a GI specialist. It's not going to hurt anything to see a chiropractor, but it could DEFINITELY cause problems if someone delays treatment from an achalasia specialist because they think that a chiropractor can " fix " their achalasia instead. (I know that YOU know these things... I mainly wanted to reply to this so that any new members reading the board wouldn't misinterpret your statement.) ) Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Debbi I totally agree with you. Achalasia can lurk around unnoticed inside of you for years and you don't know about it, so it can be caused by any of many things. I must have had it for years because when I had the first barium x-ray after about 30 years it already showed up as a greatly dilated lower oesophagus. My back problem is related to osteoarthritis. My physiotherapist says that she thinks the distended lower oesophagus, full of food, is heavy and drags on the spinal tendons and nerves causing inflammation and irritation and that helps to pull it out of alignment. This is not difficult because my spine is already weakened and unstable. I can actually feel this happening - I can feel the oesophagus swing around when I roll over at night [its horrible!] It is so important for people to go for treatment - myotomy or dilatation long before the oesophagus is so distended. Then the treatment is more likely to be effective. Joan Johannesburg South Africajpearse@... Re: Re: Chaitanya > And for everyone who just skimmed or skipped this....apparently> chiropractic can help in some instances!!!!!>> CindiCindi -- I just wanted to point out that chiropractic treatment isprobably only going to be helpful for people whose achalasia is "causedby" something related to a back injury (as was discussed in the originalmessage.)I love my chiropractor and have been seeing my current one for almost fiveyears now; I firmly believe in chiropractic treatment for back problemsand things caused by back problems (leg pains, etc.) I just don't wantpeople to see your statement and use that as an "excuse" to not seektreatment from a GI specialist. It's not going to hurt anything to see achiropractor, but it could DEFINITELY cause problems if someone delaystreatment from an achalasia specialist because they think that achiropractor can "fix" their achalasia instead.(I know that YOU know these things... I mainly wanted to reply to this sothat any new members reading the board wouldn't misinterpret yourstatement.) )Deb Quote Link to comment Share on other sites More sharing options...
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