Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Damn right you're a gutsy lady. I for one am very proud of you. Even prouder because you're going to a psychologist to strenghten yourself even more. Good for you!!! Enjoy your cruise. They are wonderful! Kerrie A 207/194/110 Dr. Ponce De Leon 9/4/04 In a message dated 9/15/2004 8:12:32 AM Eastern Standard Time, writes: I saw a psychologist today to start dealing with all this and he was great. I'm pleased to say he was also supportive about the band. He said he has done some psychological exams for lap-band patients. He told me I'm a " gutsy lady " to take charge of my weight and fly to Mexico for surgery. My issues are not band related right now, but I do find myself wanting to eat junk to try to " feel better. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Thanks for the confirmation Maureen. Wow! From South Africa! I'm writing from Oregon.I got an advisement reply from who is sick with fever. Best Wishes, Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 Maureen was he in a foreign country w/ all the mosquito borne illnessses? they are beginning to suspect that fm may also be a virus--- not fact yet! OF COURSE THEY ARE ALWAYS YOUR babies. mine too! he is lucky to have u for a mom! mine just blows me off karen mw in LA There will be solid ground to stand on....or you will be taught to fly....[Author unknown] -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 I think he may have contracted the Dengue Fever in Vietnam...[his partner is from there and they spent three months there a couple of years ago]..The Ross River is common in Queensland where we live .... Interesting if fibro is also a virus... takes Echinacea and Astragalus as well as lots of vit C to support his immune system and notices a difference if he stops taking them.... Hugs...Maureen 2009/11/26 m W <karens.special1@...> Maureen was he in a foreign country w/ all the mosquito borne illnessses? they are beginning to suspect that fm may also be a virus--- not fact yet! OF COURSE THEY ARE ALWAYS YOUR babies. mine too! he is lucky to have u for a mom! mine just blows me off karen mw in LA There will be solid ground to stand on....or you will be taught to fly....[Author unknown] -- -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen. There will be solid ground to stand on....or you will be taught to fly...[Author unknown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 If the natural stuff is helping definitely don’t let him stop taking them (although I think we all at some point go ‘is this really helping’ and stop just to find out). As far as the chemicals that were used on the farm – does he know what they were and have you been able to look up any symptoms that they might produce at toxic levels (which he may not test at, but I believe everybody handles toxins differently and some of us are much more susceptible to them than others). Along those lines most anti-inflammatory medications don’t work for me nor do many pain killers. The doctor may need to try different combinations and different types to find one that does work. Same with the anti-depressants and sleeping pills (although if they’re not doing anything at all I’d consider stopping everything for the moment and seeing if he can figure out a holistic approach that helps). Has he tried any glucosamine/chondrotin/MSM to see if that helps with the joint pain? I know that those 3 things in particular are indicated for arthritis more than anything; but for me I’ve found that taking them has helped with my overall joint pain and the trigger points. It’s one of those ‘if it’s working don’t stop’ things I mentioned. I’m not sure of why it works, but it does; although I’m equally sure it doesn’t work for everybody as my mom also has fibro and we’re on totally different treatment plans and have been all along. Detox – it sure can’t hurt! Sue had posted a week or so ago about a detox using Sesame oil (found at health food stores here in the states). If you can do a search of the archives you should be able to find it. It’s on my to-do list but I have to wait until payday to see if I can afford the oil. I just want to say how good it is that has you to advocate for him and help him look for alternatives! Sherry in PA From: [mailto: ] On Behalf Of Maureen Thornberry Sent: Wednesday, November 25, 2009 3:02 PM Subject: Re: MAUREEN I think he may have contracted the Dengue Fever in Vietnam...[his partner is from there and they spent three months there a couple of years ago]..The Ross River is common in Queensland where we live .... Interesting if fibro is also a virus... takes Echinacea and Astragalus as well as lots of vit C to support his immune system and notices a difference if he stops taking them.... Hugs...Maureen 2009/11/26 m W <karens.special1@...> Maureen was he in a foreign country w/ all the mosquito borne illnessses? they are beginning to suspect that fm may also be a virus--- not fact yet! OF COURSE THEY ARE ALWAYS YOUR babies. mine too! he is lucky to have u for a mom! mine just blows me off karen mw in LA There will be solid ground to stand on....or you will be taught to fly.... [Author unknown] -- -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen. There will be solid ground to stand on....or you will be taught to fly... [Author unknown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 Sherry, He has taken glucosamine/chondrotin and not had any improvement..he takes a powdered form of magnesium and that does help...he notices a difference in pain if he stops taking that..... As for the chemicals....I tend to think that whatever they were detoxifing the body and supporting the liver would have to help..... Thank you for your interest..I will have a look in the archives and sus out the oil.... Hugs...Maureen If the natural stuff is helping definitely don’t let him stop taking them (although I think we all at some point go ‘is this really helping’ and stop just to find out). As far as the chemicals that were used on the farm – does he know what they were and have you been able to look up any symptoms that they might produce at toxic levels (which he may not test at, but I believe everybody handles toxins differently and some of us are much more susceptible to them than others). Along those lines most anti-inflammatory medications don’t work for me nor do many pain killers. The doctor may need to try different combinations and different types to find one that does work. Same with the anti-depressants and sleeping pills (although if they’re not doing anything at all I’d consider stopping everything for the moment and seeing if he can figure out a holistic approach that helps). Has he tried any glucosamine/chondrotin/MSM to see if that helps with the joint pain? I know that those 3 things in particular are indicated for arthritis more than anything; but for me I’ve found that taking them has helped with my overall joint pain and the trigger points. It’s one of those ‘if it’s working don’t stop’ things I mentioned. I’m not sure of why it works, but it does; although I’m equally sure it doesn’t work for everybody as my mom also has fibro and we’re on totally different treatment plans and have been all along. Detox – it sure can’t hurt! Sue had posted a week or so ago about a detox using Sesame oil (found at health food stores here in the states). If you can do a search of the archives you should be able to find it. It’s on my to-do list but I have to wait until payday to see if I can afford the oil. I just want to say how good it is that has you to advocate for him and help him look for alternatives! Sherry in PA From: [mailto: ] On Behalf Of Maureen Thornberry Sent: Wednesday, November 25, 2009 3:02 PM Subject: Re: MAUREEN I think he may have contracted the Dengue Fever in Vietnam...[his partner is from there and they spent three months there a couple of years ago]..The Ross River is common in Queensland where we live .... Interesting if fibro is also a virus... takes Echinacea and Astragalus as well as lots of vit C to support his immune system and notices a difference if he stops taking them.... Hugs...Maureen 2009/11/26 m W <karens.special1@...> Maureen was he in a foreign country w/ all the mosquito borne illnessses? they are beginning to suspect that fm may also be a virus--- not fact yet! OF COURSE THEY ARE ALWAYS YOUR babies. mine too! he is lucky to have u for a mom! mine just blows me off karen mw in LA There will be solid ground to stand on....or you will be taught to fly....[Author unknown] -- -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly... [Author unknown] -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen. There will be solid ground to stand on....or you will be taught to fly...[Author unknown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 - Now that virus thing I just heard about here in one of these fibro groups.not published yet I don't think. Sounds like he had a fun busy life. That always helps. i wanted to do things for physical therapy, but now I need it more. lol ---My girlfriend always wants a massage.She has Fibro and about 10 other fatal diseases.I can't have most people even touch me but for a gentle hug. Massage---------I can't do it when we are w/ my son.. Now if she asked me alone, I wouldn't mind. But my fingers work for 15 mins. then I use elbows. lol -----------------y'all gonna do anything fun tomorrow.************************************** **** karen mw in La ************* There will be solid ground to stand on....or you will be taught to fly.....[Author unknown] -- -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly...[Author unknown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 *******they do tell ppl w/ fibro to take magnesium.... I took it because of terriBle cramps.pms and it helped, but I lost the bottle lol *********momma koko ( karen mw in LA ) There will be solid ground to stand on....or you will be taught to fly....[Author unknown] -- -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly...[Author unknown] -- When you come to the edge of all the light you know, and are about to step into the darkness of the unknown: Faith is knowing that one of two things will happen.There will be solid ground to stand on....or you will be taught to fly...[Author unknown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 I just checked on Us news and world report and Milwaukee Childrens Hospital is rated #14 in Gastro. I left a message for her doc and we are now playing phone tag...last I had talked to the Gastro doc if the last balloon didnt work we were going to look at the Esphogus (sp). Will let you know. Maureen ________________________________ From: zlmmom1 <mcnairmichelle@...> achalasia Sent: Monday, May 16, 2011 12:08 PM Subject: Maureen  where are you located and who is your daughters surgeon? at this point, if she is this bad off - she needs to get a consult with a TOP surgeon - pronto. She should NOT have to live like this. I was 12 when I got A and it was no walk in the park but I could function pretty normally. The problem comes from A being rare enough and then 'extra' rare in a kid and there are few and far between providers to do necessary procedures. Please let her know that with proper treatment, she should go on to live a mostly normal life. I was able to attend normal high school, college, I'm married- I've had 2 pregnancies, I work - all the normal stuff - 30 years later. It's not a death sentence but it needs to be treated properly. Let us know where you are and we'll do our best to help. Glad you found us! ~ in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 sounds like a plan. we have had a lot of luck with the balloon dialations. usually they give her relief for about 6-9 months. the botox also worked but not for as long. and sometimes, nothing works very well. one day at a time. come to the kids with achalasia group on facebook and talk with the other parents. we welcome you, and at the same time, are saddened that you need to be part of this. Maureen, I do know how you feel. and I am so sorry. Helene > > I just checked on Us news and world report and Milwaukee Childrens Hospital is rated #14 in Gastro. I left a message for her doc and we are now playing phone tag...last I had talked to the Gastro doc if the last balloon didnt work we were going to look at the Esphogus (sp). Will let you know. > Maureen > > > ________________________________ > From: zlmmom1 <mcnairmichelle@...> > achalasia > Sent: Monday, May 16, 2011 12:08 PM > Subject: Maureen > > > Â > where are you located and who is your daughters surgeon? at this point, if she is this bad off - she needs to get a consult with a TOP surgeon - pronto. She should NOT have to live like this. I was 12 when I got A and it was no walk in the park but I could function pretty normally. The problem comes from A being rare enough and then 'extra' rare in a kid and there are few and far between providers to do necessary procedures. > Please let her know that with proper treatment, she should go on to live a mostly normal life. I was able to attend normal high school, college, I'm married- I've had 2 pregnancies, I work - all the normal stuff - 30 years later. It's not a death sentence but it needs to be treated properly. Let us know where you are and we'll do our best to help. > > Glad you found us! > ~ in NC > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Second michelle suggestion...angela Sent from my Verizon Wireless BlackBerry Maureen where are you located and who is your daughters surgeon? at this point, if she is this bad off - she needs to get a consult with a TOP surgeon - pronto. She should NOT have to live like this. I was 12 when I got A and it was no walk in the park but I could function pretty normally. The problem comes from A being rare enough and then 'extra' rare in a kid and there are few and far between providers to do necessary procedures. Please let her know that with proper treatment, she should go on to live a mostly normal life. I was able to attend normal high school, college, I'm married- I've had 2 pregnancies, I work - all the normal stuff - 30 years later. It's not a death sentence but it needs to be treated properly. Let us know where you are and we'll do our best to help. Glad you found us! ~ in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Mike wrote: > > I just checked on Us news and world report and Milwaukee Childrens > Hospital is rated #14 in Gastro. > An expert in gastro is not necessarily an expert in achalasia. How many surgeries for achalasia do they do a year? What you want is surgeon who does lots of these each year at a center that does lots of them. Here is a good intro to achalasia: Achalasia - An Update E Richter, MD, FACP, MACG http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115/ Here is a quote from it that applies to this discussion. " Recurrence of dysphagia after a laparoscopic Heller myotomy is usually the result of an incomplete myotomy, particularly on the gastric side, esophageal scarring, obstruction by the fundoplication, megaesophagus or complications of severe GERD, including esophagitis or peptic stricture. Surgical expertise is key, with most complications occurring in the first 50 operations. " If your surgeon has not done 50 he may still be fighting the learning curve even if he is otherwise an expert GI surgeon. Achalasia in children has an incident rate of probably less than 1 new case in a population of 1,000,000 per year. How many is your surgeon likely to see? Achalasia in general has a rate of 1 new case for 100,000 per year. Even at that most doctors are not going to see many in their lifetime. A typical GI or surgeon may see as many as 10 per year if they live in an area with a large enough population. Many of these doctors are going to refer the achalasia patients to other doctors who are known for treating more of them. Some doctors are happy to treat just a few. My GI would not even do the achalasia balloon because he felt there with others with more experience and even with dilatation experience was important. I live in Phoenix. It isn't like my GI doesn't see a lot of patients. BTW: Many surgeons that do heller myotomies are surgeons that work mostly in the chest not the abdomen. You would think being a GI problem that would not be the case, but the esophagus is in the chest. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 The Gastro and Surgeon are two different peeps. My gastro does the balloons and he said if the surgeon needed to go back in he would have to undo all the Heller surgery he did to get down to the ground level. They did mention the scar tissue being an issue also as part of the problem we are having right now. You have given me a wealth of knowledge by being on this board and I thank each and every one of you....I read that Mayo did alot of this type of treatment...sometimes I wonder if they are #1 in everything truly. Maureen ________________________________ From: notan ostrich <notan_ostrich@...> achalasia Sent: Monday, May 16, 2011 1:03 PM Subject: Re: Maureen  Mike wrote: > > I just checked on Us news and world report and Milwaukee Childrens > Hospital is rated #14 in Gastro. > An expert in gastro is not necessarily an expert in achalasia. How many surgeries for achalasia do they do a year? What you want is surgeon who does lots of these each year at a center that does lots of them. Here is a good intro to achalasia: Achalasia - An Update E Richter, MD, FACP, MACG http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115/ Here is a quote from it that applies to this discussion. " Recurrence of dysphagia after a laparoscopic Heller myotomy is usually the result of an incomplete myotomy, particularly on the gastric side, esophageal scarring, obstruction by the fundoplication, megaesophagus or complications of severe GERD, including esophagitis or peptic stricture. Surgical expertise is key, with most complications occurring in the first 50 operations. " If your surgeon has not done 50 he may still be fighting the learning curve even if he is otherwise an expert GI surgeon. Achalasia in children has an incident rate of probably less than 1 new case in a population of 1,000,000 per year. How many is your surgeon likely to see? Achalasia in general has a rate of 1 new case for 100,000 per year. Even at that most doctors are not going to see many in their lifetime. A typical GI or surgeon may see as many as 10 per year if they live in an area with a large enough population. Many of these doctors are going to refer the achalasia patients to other doctors who are known for treating more of them. Some doctors are happy to treat just a few. My GI would not even do the achalasia balloon because he felt there with others with more experience and even with dilatation experience was important. I live in Phoenix. It isn't like my GI doesn't see a lot of patients. BTW: Many surgeons that do heller myotomies are surgeons that work mostly in the chest not the abdomen. You would think being a GI problem that would not be the case, but the esophagus is in the chest. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Maureen wrote: > > ... My gastro does the balloons and he said if the surgeon needed to > go back in he would have to undo all the Heller surgery he did to get > down to the ground level. ... > The description of what would be needed leaves something to be desired in clarity. In fact, I would say it could be misleading. (Red flag here) Often, a redo myotomy is an extension or completion of the original myotomy. In other words he would make it longer or deeper. Sometimes a myotomy is not complete because either a muscle layer was not completely cut through leaving some of the high pressure area with too much residual pressure, or the myotomy was not cut long enough leaving too much pressure at the ends. In doing a myotomy cutting deeply risks causing a perforation, cutting to long risks acid reflux problems. Surgeons sometime are too conservative when trying to avoid those problems. Sometime fibrosis (scarring) pulls the myotomy together and that needs to be remove or the muscles have started to reconnect across the myotomy and need to be cut. Those problems often respond to dilatation but not always. If problems continue after dilatation it is time to rethink it. Generally, the only thing that sometimes needs to be " undone " is the fundoplication if it was too tight, if there even was one. So, I don't know what he was saying. > They did mention the scar tissue being an issue also as part of the > problem we are having right now. > It could be case, and it may be something that after a few dilatation works out. We can hope, but be prepared to go to another step. > ...I read that Mayo did alot of this type of treatment...sometimes I > wonder if they are #1 in everything truly. > I had my myotomy at the Phoenix Mayo but we don't hear a lot about Mayo in the group. I don't know why that is. One of the best places and surgeons is in Chicago. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Maureen- welcome- my son had surgery with doctor thomas rice at the cleveland clinic in ohio at the age of 16. He is doing well and set to graduate this june. Please heed the suggestions offered here. Get your daughter to an expert, let him tell u what he or she can do for your daughter. The doctors in our area had NO CLUE about this disease and the treatment of it. One doctor told me our son would have to live with a feeding tube for the rest of his life. Thank god we found this group whom directed us to dr rice. Yes we had to travel, yes we fought insurance companies. Was it worth it? Absolutely!!! Our son is a " normal " 18 year old. Our prayers were answered...angela Sent from my Verizon Wireless BlackBerry Re: Maureen  Mike wrote: > > I just checked on Us news and world report and Milwaukee Childrens > Hospital is rated #14 in Gastro. > An expert in gastro is not necessarily an expert in achalasia. How many surgeries for achalasia do they do a year? What you want is surgeon who does lots of these each year at a center that does lots of them. Here is a good intro to achalasia: Achalasia - An Update E Richter, MD, FACP, MACG http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115/ Here is a quote from it that applies to this discussion. " Recurrence of dysphagia after a laparoscopic Heller myotomy is usually the result of an incomplete myotomy, particularly on the gastric side, esophageal scarring, obstruction by the fundoplication, megaesophagus or complications of severe GERD, including esophagitis or peptic stricture. Surgical expertise is key, with most complications occurring in the first 50 operations. " If your surgeon has not done 50 he may still be fighting the learning curve even if he is otherwise an expert GI surgeon. Achalasia in children has an incident rate of probably less than 1 new case in a population of 1,000,000 per year. How many is your surgeon likely to see? Achalasia in general has a rate of 1 new case for 100,000 per year. Even at that most doctors are not going to see many in their lifetime. A typical GI or surgeon may see as many as 10 per year if they live in an area with a large enough population. Many of these doctors are going to refer the achalasia patients to other doctors who are known for treating more of them. Some doctors are happy to treat just a few. My GI would not even do the achalasia balloon because he felt there with others with more experience and even with dilatation experience was important. I live in Phoenix. It isn't like my GI doesn't see a lot of patients. BTW: Many surgeons that do heller myotomies are surgeons that work mostly in the chest not the abdomen. You would think being a GI problem that would not be the case, but the esophagus is in the chest. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Maureen, I have suffered most of my life with achalasia also, many doctors or surgeons can be good, but the real question is...are they good at Achalasia?? There is a difference. Once you come face to face with the experts, you will know it!! I wish you all the best! Julee So Calif. ________________________________ From: " kotacj@... " <kotacj@...> achalasia Sent: Mon, May 16, 2011 12:45:24 PM Subject: Re: Maureen  Maureen- welcome- my son had surgery with doctor thomas rice at the cleveland clinic in ohio at the age of 16. He is doing well and set to graduate this june. Please heed the suggestions offered here. Get your daughter to an expert, let him tell u what he or she can do for your daughter. The doctors in our area had NO CLUE about this disease and the treatment of it. One doctor told me our son would have to live with a feeding tube for the rest of his life. Thank god we found this group whom directed us to dr rice. Yes we had to travel, yes we fought insurance companies. Was it worth it? Absolutely!!! Our son is a " normal " 18 year old. Our prayers were answered...angela Sent from my Verizon Wireless BlackBerry Re: Maureen  Mike wrote: > > I just checked on Us news and world report and Milwaukee Childrens > Hospital is rated #14 in Gastro. > An expert in gastro is not necessarily an expert in achalasia. How many surgeries for achalasia do they do a year? What you want is surgeon who does lots of these each year at a center that does lots of them. Here is a good intro to achalasia: Achalasia - An Update E Richter, MD, FACP, MACG http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115/ Here is a quote from it that applies to this discussion. " Recurrence of dysphagia after a laparoscopic Heller myotomy is usually the result of an incomplete myotomy, particularly on the gastric side, esophageal scarring, obstruction by the fundoplication, megaesophagus or complications of severe GERD, including esophagitis or peptic stricture. Surgical expertise is key, with most complications occurring in the first 50 operations. " If your surgeon has not done 50 he may still be fighting the learning curve even if he is otherwise an expert GI surgeon. Achalasia in children has an incident rate of probably less than 1 new case in a population of 1,000,000 per year. How many is your surgeon likely to see? Achalasia in general has a rate of 1 new case for 100,000 per year. Even at that most doctors are not going to see many in their lifetime. A typical GI or surgeon may see as many as 10 per year if they live in an area with a large enough population. Many of these doctors are going to refer the achalasia patients to other doctors who are known for treating more of them. Some doctors are happy to treat just a few. My GI would not even do the achalasia balloon because he felt there with others with more experience and even with dilatation experience was important. I live in Phoenix. It isn't like my GI doesn't see a lot of patients. BTW: Many surgeons that do heller myotomies are surgeons that work mostly in the chest not the abdomen. You would think being a GI problem that would not be the case, but the esophagus is in the chest. notan Quote Link to comment Share on other sites More sharing options...
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