Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Dear , There hasn¡¦t been a day that I haven¡¦t think about achalasia. In the beginning I had a really bad time adjusting and accepting the fact that there isn¡¦t a cure for it and that nobody is researching what causes it. My GI gave me copies of the test results and told me that I could go for a second opinion. To be honest with you I didn¡¦t like when he mentioned Botox, although he did say it would only be a temporary relive it could last 6 months up to 2 years. I have been reading all the posts and I do see a pattern and I know that achalasia is a progressive disease and it gets worse. I know that now surgery isn¡¦t as invasive as it used to be but I¡¦m not too crazy about the idea. I am only 27, 5¡¨9 and weight 167 lbs, I consider myself a healthy young men that has achalasia. The other thing is my heart isn¡¦t that strong, I¡¦m scared if I decide to go ahead with surgery that something might happen (I¡¦m taking something for the heart condition). As a precaution and to prevent acid damage the doctor hasn¡¦t stopped the Prevacid, I take it every day. I know I might end up regretting my decision in the future but I¡¦m going to wait 3 months and see what happens. I appreciate your support; I¡¦m pretty sure a lot of you my friends must be asking why is he doing to himself. I must tell you I¡¦m scared and at the same time I think things might get betterƒ¼. good luck to you, I know you are also going throw some crazy journey as well. To all others on this Board: Thank you so much for all your kind words and support. Thank you, Manny > > > My GI went over the results with me. He said that based > > on the study, > > > it shows that I got Achalasia and that it is in its early stages. > > > > > > He told me all about the options available but did not recommend > > me > > > having surgery because was too early and he said that it could > > create > > > additional problems that I don't have at the moment. > > > > > > He suggested > > > > > > 1) The temporary relive - Botox injection > > > > > > 2) Do Nothing for now. > > > > > > I decided not to do anything for now and wait. > > > > > > He decided to keep on the Prevacid and scheduled a follow up > > > appointment 3 months from now. > > > > > > Thanks for all your support > > > Manny_on_Long_Island > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > All new " The new Interface is stunning in its > > simplicity and ease of use. " - PC Magazine > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Here's another option, Manny: (balloon) dilate the esophagus. I read your story and relate a lot to your fear and your desire to wait - perhaps we are similar in that respect. (I even used to live on Long Island!) Bottom line: dilation can work well and the procedure is pretty easy to take. The experience is similar to an upper endoscopy. You are sedated and pretty much " out to lunch " . You wake up in a different room and realize that " it is all over " . The couple times I woke up mid-procedure were momentarily startling. The medical team just pumped a bit more sedative into me & in (literally) seconds I was out. This could happen to you but I have learned that stuff written here seems more scary when read (and contemplated) than when I actually experience it. One nice thing is that good practitioners can make you pretty darn comfortable during this sort of procedure! You can handle this. I managed even though I grew up terrified of going to the doctor's office (as a kid)and, as an adult, nearly fainted after giving a blood sample. (I still can't look at the syringe when my blood is drawn for a simple blood test.) Read the articles/studies on dilation. The stats compare (depending on whose study you are reading) favorably with surgery. I am talking roughly 50% of patients experience no problems at the 5 year mark - in both cases. (Roughly speaking.) In the hands of a doc that does dilations every week, the risk (of perforation) is very low. Dilation does not compromise the outcome of a myotomy performed at a later date. I am told that the incidence of reflux post-dilation is likely to be less than post-surgery. And, you can still postpone the surgery What you gain that is not obvious is that you lessen or eliminate the chance that your esophagus dilates/stretches. You could feel fine/eat reasonably comfortably with few problems, but with achalasia, NEVER REALIZE that your esophagus is stretching out. If this happens, you've got a bigger problem. This may not happen to everyone, but believe me, this is a real risk associated with the 'wait and see' approach. I really believe that " doing nothing is not an option " . Balloon dilation is a great option for you to do something to deal with your achalasia. > > > > My GI went over the results with me. He said that based > > > on the study, > > > > it shows that I got Achalasia and that it is in its early > stages. > > > > > > > > He told me all about the options available but did not recommend > > > me > > > > having surgery because was too early and he said that it could > > > create > > > > additional problems that I don't have at the moment. > > > > > > > > He suggested > > > > > > > > 1) The temporary relive - Botox injection > > > > > > > > 2) Do Nothing for now. > > > > > > > > I decided not to do anything for now and wait. > > > > > > > > He decided to keep on the Prevacid and scheduled a follow up > > > > appointment 3 months from now. > > > > > > > > Thanks for all your support > > > > Manny_on_Long_Island > > > > > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > > All new " The new Interface is stunning in its > > > simplicity and ease of use. " - PC Magazine > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi Manny, I appreciate your opening up more and making more sense to me about your situation. Clearly this is not an easy decision for you, and one that you cannot runaway from. You will no doubt be speaking to more professionals about this. If you have a cardiologist, it would be helpful to speak to him/here about the operation. At this point is taking the Prevacid necessary? Most people with untreated achalasia do not suffer from acid reflux. Would you, if you stopped (since you are saying that you are taking it as a precaution). That's a lot of drug for a "precaution." Its nice to hear that you feel things might be getting better. If we can learn anything from the history of Achalasia, these getting better periods are practically always just temporary "blips" on the screen and will eventually end. Sorry. Thank you for telling us more about yourself. We all have to come to terms eventually with what we will do. You know I wish and hope the best for you. The "compromise" I suggested, and then elaborated on by another member, the balloon dilatation, might be a good one, in your circumstances, and worth considering at this time. In a message dated 7/12/2006 12:58:01 A.M. Eastern Daylight Time, nybigapple@... writes: Dear ,There hasn¡¦t been a day that I haven¡¦t think about achalasia. In the beginning I had a really bad time adjusting and accepting the fact that there isn¡¦t a cure for it and that nobody is researching what causes it. My GI gave me copies of the test results and told me that I could go for a second opinion. To be honest with you I didn¡¦t like when he mentioned Botox, although he did say it would only be a temporary relive it could last 6 months up to 2 years. I have been reading all the posts and I do see a pattern and I know that achalasia is a progressive disease and it gets worse.I know that now surgery isn¡¦t as invasive as it used to be but I¡¦m not too crazy about the idea. I am only 27, 5¡¨9 and weight 167 lbs, I consider myself a healthy young men that has achalasia. The other thing is my heart isn¡¦t that strong, I¡¦m scared if I decide to go ahead with surgery that something might happen (I¡¦m taking something for the heart condition).As a precaution and to prevent acid damage the doctor hasn¡¦t stopped the Prevacid, I take it every day.I know I might end up regretting my decision in the future but I¡¦m going to wait 3 months and see what happens. I appreciate your support; I¡¦m pretty sure a lot of you my friends must be asking why is he doing to himself. I must tell you I¡¦m scared and at the same time I think things might get betterƒ¼. good luck to you, I know you are also going throw some crazy journey as well.To all others on this Board: Thank you so much for all your kind words and support.Thank you,Manny> > > My GI went over the results with me. He said that based> > on the study,> > > it shows that I got Achalasia and that it is in its early stages.> > >> > > He told me all about the options available but did not recommend> > me> > > having surgery because was too early and he said that it could> > create> > > additional problems that I don't have at the moment.> > >> > > He suggested> > >> > > 1) The temporary relive - Botox injection> > >> > > 2) Do Nothing for now.> > >> > > I decided not to do anything for now and wait.> > >> > > He decided to keep on the Prevacid and scheduled a follow up> > > appointment 3 months from now.> > >> > > Thanks for all your support> > > Manny_on_Long_Island> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Dear , One of the reasons I take the Prevacid is because before i was diagnosed with achalasia i used to have what they call Heart burn but it stopped gradually after I started taking it (prevacid). So my GI feels that it is best for me to keep on taking it, my regular Doctor feels the same way. So since two doctors think it is better for me I will not contradict their professional experience. I wish i could stop taking all the Meds. And just move on. Thank you, Manny > > > > My GI went over the results with me. He said that based > > > on the study, > > > > it shows that I got Achalasia and that it is in its early > stages. > > > > > > > > He told me all about the options available but did not recommend > > > me > > > > having surgery because was too early and he said that it could > > > create > > > > additional problems that I don't have at the moment. > > > > > > > > He suggested > > > > > > > > 1) The temporary relive - Botox injection > > > > > > > > 2) Do Nothing for now. > > > > > > > > I decided not to do anything for now and wait. > > > > > > > > He decided to keep on the Prevacid and scheduled a follow up > > > > appointment 3 months from now. > > > > > > > > Thanks for all your support > > > > Manny_on_Long_ Manny > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 In a message dated 7/12/2006 1:18:49 P.M. Eastern Daylight Time, jfbartolino@... writes: If you ask how many perfs he has had Do you think you would get the right answer ?? ------------------------------------------------------------------------------------------------- I guess you could ask "Of the dilatations you have performed, what percentage has been without any complications?" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 I had balloon dilation 18 years ago The Dr nicked the "E" Was in ICU for a week Can't have another cause of weak muscle Now I am NOT saying NO dilation I am saying be careful who does it Ask questions I didn't -- Re: Manny - Here's another option, Manny: (balloon) dilate the esophagus.I read your story and relate a lot to your fear and your desire towait - perhaps we are similar in that respect. (I even used to liveon Long Island!)Bottom line: dilation can work well and the procedure is pretty easyto take. The experience is similar to an upper endoscopy. You aresedated and pretty much "out to lunch". You wake up in a differentroom and realize that "it is all over". The couple times I woke upmid-procedure were momentarily startling. The medical team justpumped a bit more sedative into me & in (literally) seconds I was out.This could happen to you but I have learned that stuff written hereseems more scary when read (and contemplated) than when I actuallyexperience it. One nice thing is that good practitioners can make youpretty darn comfortable during this sort of procedure!You can handle this. I managed even though I grew up terrified ofgoing to the doctor's office (as a kid)and, as an adult, nearlyfainted after giving a blood sample. (I still can't look at thesyringe when my blood is drawn for a simple blood test.)Read the articles/studies on dilation. The stats compare (dependingon whose study you are reading) favorably with surgery. I am talkingroughly 50% of patients experience no problems at the 5 year mark - inboth cases. (Roughly speaking.)In the hands of a doc that does dilations every week, the risk (ofperforation) is very low. Dilation does not compromise the outcome ofa myotomy performed at a later date. I am told that the incidence ofreflux post-dilation is likely to be less than post-surgery. And, youcan still postpone the surgery What you gain that is not obvious is that you lessen or eliminate thechance that your esophagus dilates/stretches. You could feel fine/eatreasonably comfortably with few problems, but with achalasia, NEVERREALIZE that your esophagus is stretching out. If this happens,you've got a bigger problem. This may not happen to everyone, butbelieve me, this is a real risk associated with the 'wait and see'approach.I really believe that "doing nothing is not an option". Balloondilation is a great option for you to do something to deal with yourachalasia.> > > > My GI went over the results with me. He said that based> > > on the study,> > > > it shows that I got Achalasia and that it is in its early > stages.> > > >> > > > He told me all about the options available but did not recommend> > > me> > > > having surgery because was too early and he said that it could> > > create> > > > additional problems that I don't have at the moment.> > > >> > > > He suggested> > > >> > > > 1) The temporary relive - Botox injection> > > >> > > > 2) Do Nothing for now.> > > >> > > > I decided not to do anything for now and wait.> > > >> > > > He decided to keep on the Prevacid and scheduled a follow up> > > > appointment 3 months from now.> > > >> > > > Thanks for all your support> > > > Manny_on_Long_Island> > > >> > > >> > > >> > > >> > > >> > > >> > > > ---------------------------------> > > > All new "The new Interface is stunning in its> > > simplicity and ease of use." - PC Magazine> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 , I am sorry to hear of your experience with dilation. That is truly unfortunate outcome. You are absolutely right about 'asking questions'. I would look for someone who does 1 or more dilations a week who has a conservative approach (smaller balloon diameters; completely avoiding the larger balloons - 4cm). I would also ask how many perfs s/he has had. The right answer is 'none'. Rich in Chicago > > I had balloon dilation 18 years ago The Dr nicked the " E " Was in ICU for > a week Can't have another cause of weak muscle Now I am NOT saying NO > dilation I am saying be careful who does it Ask questions I didn't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Also want to add that the overall (esophageal) perf rate is currently about 3% for balloon dilation, according to my doc at Northwestern. Rich in Chicago > > I had balloon dilation 18 years ago The Dr nicked the " E " Was in ICU for > a week Can't have another cause of weak muscle Now I am NOT saying NO > dilation I am saying be careful who does it Ask questions I didn't > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 If you ask how many perfs he has had Do you think you would get the right answer ?? -- Re: Manny - , I am sorry to hear of your experience with dilation. That istruly unfortunate outcome.You are absolutely right about 'asking questions'.I would look for someone who does 1 or more dilations a week who has aconservative approach (smaller balloon diameters; completely avoidingthe larger balloons - 4cm). I would also ask how many perfs s/he hashad. The right answer is 'none'.Rich in Chicago>> I had balloon dilation 18 years ago The Dr nicked the "E" Was inICU for> a week Can't have another cause of weak muscle Now I am NOT saying NO> dilation I am saying be careful who does it Ask questions I didn't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Sounds better Still don't think you would get an answer I have dealt with Dr for many years Being an RN -- Re: Re: Manny - In a message dated 7/12/2006 1:18:49 P.M. Eastern Daylight Time, jfbartolino@... writes: If you ask how many perfs he has had Do you think you would get the right answer ?? ------------------------------------------------------------------------------------------------- I guess you could ask "Of the dilatations you have performed, what percentage has been without any complications?" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 I agree - by all means, ask the question diplomatically. The point is to not be afraid to ask the question! See what happens. I asked my doc this question yesterday. His answer was " I haven't had a problem in 15 years " and he does 1-2 dilations a week, I believe. He also added that he uses a conservative approach: he starts off with a 3cm balloon. If more dilation is required, he uses 3.5cm - but never 4cm (too risky). The same guy aborted an upper endoscopy when he found too much food left in my esophagus to easily remove. He feared I would aspirate. I was disappointed that I had to come back to redo the test. But no harm was done. I was OK. Clearly, the practitioner's judgement is a big part of managing the risk of this (or any) procedure. Rich S > > Sounds better Still don't think you would get an answer I have dealt with > Dr for many years Being an RN > > -- Re: Re: Manny - > > In a message dated 7/12/2006 1:18:49 P.M. Eastern Daylight Time, > jfbartolino@... writes: > If you ask how many perfs he has had Do you think you would get the right > answer ?? > ----------------------------------------------------------------------------- > ------------------- > > I guess you could ask " Of the dilatations you have performed, what > percentage has been without any complications? " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hello richardswack@..., In reference to your comment: but never 4cm (too risky). My doctor said this same thing. He did use a 3.5 both times. He says the larger the balloon the more effective the procedure, but he would never use a 4. on me. I think sometimes the reason dilatations are not as effective is that some doctors start too low. I am speaking of someone now who has not had the surgery. After surgery they may need to use a smaller one, depending on each individual patient. But, you are right, a doctor should use what he's comfortable with. If he is afraid to use a larger balloon then he should start small. Maggie Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Funny story here -- my FORMER GI, who misdiagnosed me for 22 months, then berated me for not getting treatment for my undiagnosed achalasia, told me he had treated " hundreds " of achalasians in his career -- " I just did one last week " I recall him saying. Now , do you think he might have been stretching the truth, just a little? Tee Hee! Peggy, home at last from a weeklong roadtrip in the center of California, hot, hot, hot -- 105 plus, now back in wonderful 65 degree bliss > > Sounds better Still don't think you would get an answer I have dealt with > Dr for many years Being an RN > > -- Re: Re: Manny - > > In a message dated 7/12/2006 1:18:49 P.M. Eastern Daylight Time, > jfbartolino@... writes: > If you ask how many perfs he has had Do you think you would get the right > answer ?? > ---------------------------------------------------------------------------- - > ------------------- > > I guess you could ask " Of the dilatations you have performed, what > percentage has been without any complications? " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Ha Ha Hey am Retired RN KNow all their angles -- Re: Re: Manny - > > In a message dated 7/12/2006 1:18:49 P.M. Eastern Daylight Time,> jfbartolino@... writes:> If you ask how many perfs he has had Do you think you would get the right> answer ?? > -----------------------------------------------------------> -------------------> > I guess you could ask "Of the dilatations you have performed, what> percentage has been without any complications?"> > > Quote Link to comment Share on other sites More sharing options...
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