Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I would suggest he go to one of the larger hospitals or has he already? I feel for you because I know what it was like when I was really sick! Better now but still have to keep up on it or after a year or so it gets out of hand again. Keep your chin up in Indiana From: achalasia [mailto:achalasia ] On Behalf Of ginamvie Sent: Sunday, February 26, 2006 9:37 AM achalasia Subject: New. Concerned Sister Hi. My brother DX'd with achalasia about 15 years ago. 6 years ago he the lower part of his esophagus removed. Since then it has been one crisis after another. Extremely weight loss, feeding tube instertion,seizures, infections, now some serious antibiotic resistant infections. He has been through doctor after doctor. He is in pain constantly. He feels no hunger, doesn't enjoy eating. He suffers from " dumping " , constant heart burn. He's on oxycontin 3 times a day. He can't play with his kids ( ages 7,and 3years) because of the pain, or the tiredness caused by the pain killers. Now doctors are talking of doing a complete tear down and beginning again. My brother doesn't think he'll survive the surgery so of course he's not having it. I sit and cry sometimes, thinking I'd rather have him back in the old days where it took a half gallon of water to get a meal down. The last time I saw him I was so shocked at the weight loss I began to cry. I know it wasn't the smartest thing to do infront of him, but i couldn't help myself. I think I will be losing my brother soon and there is no way to adjust to that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I don't know where you live, but I would suggest seeking a Surgeon who has a lot of experience with esophagectomy's. I had my esophagus removed 13 years ago and while I had a difficult recovery, I can eat most anything out any problems. If his pain and suffering is all related to his surgery then I have to think that the right surgeon can correct this. I was not in great physical shape prior to my surgery, my Drs's worked with me weeks before the surgery in attempt to build up my strength, I was admitted three full days before my surgery and was fed me a nutrition pack through IV's until I had my surgery. Ed > Hi. My brother DX'd with achalasia about 15 years ago. 6 years ago > he the lower part of his esophagus removed. Since then it has been > one crisis after another. Extremely weight loss, feeding tube > instertion,seizures, infections, now some serious antibiotic resistant > infections. He has been through doctor after doctor. He is in pain > constantly. He feels no hunger, doesn't enjoy eating. He suffers > from " dumping " , constant heart burn. He's on oxycontin 3 times a day. > He can't play with his kids ( ages 7,and 3years) because of the pain, > or the tiredness caused by the pain killers. Now doctors are talking > of doing a complete tear down and beginning again. My brother doesn't > think he'll survive the surgery so of course he's not having it. I > sit and cry sometimes, thinking I'd rather have him back in the old > days where it took a half gallon of water to get a meal down. The > last time I saw him I was so shocked at the weight loss I began to > cry. I know it wasn't the smartest thing to do infront of him, but i > couldn't help myself. I think I will be losing my brother soon and > there is no way to adjust to that! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Again is he at a good hospital If not get him there NOW If sooo and he is not getting any relieve a New Dr NOW Starting over MAY be the way to go from NJ Having a good day -- RE: New. Concerned Sister I would suggest he go to one of the larger hospitals or has he already? I feel for you because I know what it was like when I was really sick! Better now but still have to keep up on it or after a year or so it gets out of hand again. Keep your chin up in Indiana From: achalasia [mailto:achalasia ] On Behalf Of ginamvieSent: Sunday, February 26, 2006 9:37 AMachalasia Subject: New. Concerned Sister Hi. My brother DX'd with achalasia about 15 years ago. 6 years agohe the lower part of his esophagus removed. Since then it has beenone crisis after another. Extremely weight loss, feeding tubeinstertion,seizures, infections, now some serious antibiotic resistantinfections. He has been through doctor after doctor. He is in painconstantly. He feels no hunger, doesn't enjoy eating. He suffersfrom "dumping", constant heart burn. He's on oxycontin 3 times a day.He can't play with his kids ( ages 7,and 3years) because of the pain,or the tiredness caused by the pain killers. Now doctors are talkingof doing a complete tear down and beginning again. My brother doesn'tthink he'll survive the surgery so of course he's not having it. Isit and cry sometimes, thinking I'd rather have him back in the olddays where it took a half gallon of water to get a meal down. Thelast time I saw him I was so shocked at the weight loss I began tocry. I know it wasn't the smartest thing to do infront of him, but icouldn't help myself. I think I will be losing my brother soon andthere is no way to adjust to that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 ginamvie wrote: > ... My brother doesn't > think he'll survive the surgery so of course he's not having it. ... Hello, Not many of us get as bad off as your brother has. There are some here though, Like Ed, that have had their esophagi, or parts of them, removed. I think they would all do it again, though we did have one lady from this group die from an infection while in the hospital after surgery. The benefits and risks are both very real. What do the doctors say his chances of benefit and recovery from the surgery are? What are the chances of his survival without surgery? Is it possible that he is depressed? Many in this group have had to have treatment for depression. There is no shame in that. The medications for depression often help with the pain too. If he is depressed his decision to not have surgery may be caused by his depression, and it may change if he is treated. Clearly, you are also suffering because of his achalasia. This group is here for your support as much as it is here for him. I am glad that he has you and that you have found this group. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 He has his surgery done at Brigham and Womens here in Boston MA. They don't get much better than taht, except maybe Massachusetts General Hospital. > > Again is he at a good hospital If not get him there NOW If sooo and he is > not getting any relieve a New Dr NOW Starting over MAY be the way to go > from NJ Having a good day > > -- New. Concerned Sister > > Hi. My brother DX'd with achalasia about 15 years ago. 6 years ago > he the lower part of his esophagus removed. Since then it has been > one crisis after another. Extremely weight loss, feeding tube > instertion,seizures, infections, now some serious antibiotic resistant > infections. He has been through doctor after doctor. He is in pain > constantly. He feels no hunger, doesn't enjoy eating. He suffers > from " dumping " , constant heart burn. He's on oxycontin 3 times a day. > He can't play with his kids ( ages 7,and 3years) because of the pain, > or the tiredness caused by the pain killers. Now doctors are talking > of doing a complete tear down and beginning again. My brother doesn't > think he'll survive the surgery so of course he's not having it. I > sit and cry sometimes, thinking I'd rather have him back in the old > days where it took a half gallon of water to get a meal down. The > last time I saw him I was so shocked at the weight loss I began to > cry. I know it wasn't the smartest thing to do infront of him, but i > couldn't help myself. I think I will be losing my brother soon and > there is no way to adjust to that! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi, I am so glad you found this group. They are a great bunch. I found them when I was getting ready for my " tear down " 6 years ago. I have had " A " for 27 years. I have had 3 surgeries. The last, in 2000, was a take down, start over like they are suggesting for your brother. Other then having some muscle spasms and no strength in my chest, I am no longer in pain. This week I will have the first dilation I have needed in 6 years. Life not perfect but I went from 90 pounds to 200 pounds so I guess I get a fair amount down. There are ALOT of things you can do. First of all no doctor who really knows about Achalasa mind would give an Achalasian Oxycontin long term. When I had 42 inches of incision from a 9 hour surgery they would only let me take it for 2 weeks. Oxycontin shuts down your digestive system and my doctors told me it could cause as many pain and problems as it helped. Secondly, there are liquid proteins and preperations that he can take to build himself up either normally or through a feeding tube. Feeding tube are not great, but they can help us get back on our feet. I would have to agree with others here, if I were your brother I would start looking for the best specialists in swallowing I could find. I know when I was in Kansas City my doctors consulted with specialist at Vanderbilt and in Tamps. The one in Tampa, Worth Boyce is considered " one of the worlds experts " in swallowing disorders. The doctors your brother has can consult with him, or any other specialist in the field, if they like. Many of those here have had great success at Cleveland Clinic. I would suggest that you start doing alot of research. If your brother does not have the strength to fight for himself he needs someone else to do it for him. There is no reason for a person to starve to death from Achalasia. If your brother is, FIND NEW DOCTORS!! There are answers, but you might have to leave Massachusets to find them. If I can help in anyway, please email me offline. elder_jc@... JC > > Hi. My brother DX'd with achalasia about 15 years ago. 6 years ago > he the lower part of his esophagus removed. Since then it has been > one crisis after another. Extremely weight loss, feeding tube > instertion,seizures, infections, now some serious antibiotic resistant > infections. He has been through doctor after doctor. He is in pain > constantly. He feels no hunger, doesn't enjoy eating. He suffers > from " dumping " , constant heart burn. He's on oxycontin 3 times a day. > He can't play with his kids ( ages 7,and 3years) because of the pain, > or the tiredness caused by the pain killers. Now doctors are talking > of doing a complete tear down and beginning again. My brother doesn't > think he'll survive the surgery so of course he's not having it. I > sit and cry sometimes, thinking I'd rather have him back in the old > days where it took a half gallon of water to get a meal down. The > last time I saw him I was so shocked at the weight loss I began to > cry. I know it wasn't the smartest thing to do infront of him, but i > couldn't help myself. I think I will be losing my brother soon and > there is no way to adjust to that! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 -- I agree with everyone else. We feel your pain for your brother. A effects the whole family. It is obviously a really serious condition for your brother. As others have mentioned has he persued the best experienced doctors. I can appreciate he is exhausted, maybe someone can be the strong one for him and inquire into these options. If he can gain a better quality of life it is worth it especially for his kids. They know he is suffering. - In achalasia , notan ostrich <notan_ostrich@...> wrote: > > ginamvie wrote: > > ... My brother doesn't > > think he'll survive the surgery so of course he's not having it. ... > Hello, > > Not many of us get as bad off as your brother has. There are some here > though, Like Ed, that have had their esophagi, or parts of them, > removed. I think they would all do it again, though we did have one lady > from this group die from an infection while in the hospital after > surgery. The benefits and risks are both very real. What do the doctors > say his chances of benefit and recovery from the surgery are? What are > the chances of his survival without surgery? > > Is it possible that he is depressed? Many in this group have had to have > treatment for depression. There is no shame in that. The medications for > depression often help with the pain too. If he is depressed his decision > to not have surgery may be caused by his depression, and it may change > if he is treated. > > Clearly, you are also suffering because of his achalasia. This group is > here for your support as much as it is here for him. I am glad that he > has you and that you have found this group. > > notan > Quote Link to comment Share on other sites More sharing options...
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