Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 If he will not go to this site and order it your self. Cost $33 http://www.lef.org/Vitamins-Supplements/ItemLC004515/Estradiol-Blood-Test.html If your levels are high get back to use and we can help you find out how to get this down. After you get this down you would do labs for your testostreone again to see if they came back up. One question do you get night time and morning wood or have problems with ED if so you might have high levels of Estradiol. Co-Moderator Phil > From: Jim <jim122676@...> > Subject: Re: New to forum > > Date: Tuesday, June 29, 2010, 2:08 PM > I took the thyroid and adrenal test > already. Thyroid was normal.Adrenals almost normal but > producing a slightly elevated amounted of cortisol, which i > am taking a natural product to reduce. If I have an elevated > estrogen level,you are saying it would be the reason my > testosterone test says 500 but am still having the low > testosterone symptoms? So can I go to a normal doctor and > tell him I am experiencing hot flashes and energy > issues,etc? Do you think he will do the estrogen test? > > > > > > > From: Jim <jim122676@...> > > > Subject: New to forum > > > > > > Date: Tuesday, June 29, 2010, 12:53 PM > > > Hi all, Glad to see you here. > > > I had a surgery inflicted on my testicles about a > year ago > > > and > > > have had very low energy mentally and physically > as well as > > > exhaustion hot sensations in my body,dificulty > > > concentrating,memory and diminished sexual desire > ever > > > since.Does this sound like low testosterone? Im > 33 and > > > before hand i had very high energy,been > experiencing them > > > for about a year.I find living with these > symptoms to be > > > very hard. I had my testosterone checked and it > was around > > > 500. How can I be having all these symptoms > non-stop? > > > > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 In this case one guy I read about yrs. ago at WebMD he post to the Uro forum about having low Testosterone and that he felt it was after having a vasectomy. The Dr. posted back to him some men get an infection from this that is very hard to find and it takes a special med to treat. This guy went back to the Uro they tested him he had this infection they fixed it his Testosterone levels came back up. Just some thing to think about the last time I talked about this I went back to WebMD to find the post but it's gone. Co-Moderator Phil > From: Jim <jim122676@...> > Subject: Re: New to forum > > Date: Tuesday, June 29, 2010, 2:37 PM > Yes,it was a vasectomy. Worst mistake > I ever made and would never recommend it to anyone. > > > > > > > > > > Hi all, Glad to see you here. > > > I had a surgery inflicted on my testicles about a > year ago and > > > have had very low energy mentally and physically > as well as exhaustion hot sensations in my body,dificulty > concentrating,memory and diminished sexual desire ever > since.Does this sound like low testosterone? Im 33 and > before hand i had very high energy,been experiencing them > for about a year.I find living with these symptoms to be > very hard. I had my testosterone checked and it was around > 500. How can I be having all these symptoms non-stop? > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 I still get morning wood and do not have a problem performing sexually, when i can actually get in the mood. But i have all the symptoms of low testosterone so i dont know. I will take the test you recommend and get back to you. Thanks everyone for the recommendations. I really appreciate it. > > > > > > > From: Jim <jim122676@> > > > > Subject: New to forum > > > > > > > > Date: Tuesday, June 29, 2010, 12:53 PM > > > > Hi all, Glad to see you here. > > > > I had a surgery inflicted on my testicles about a > > year ago > > > > and > > > > have had very low energy mentally and physically > > as well as > > > > exhaustion hot sensations in my body,dificulty > > > > concentrating,memory and diminished sexual desire > > ever > > > > since.Does this sound like low testosterone? Im > > 33 and > > > > before hand i had very high energy,been > > experiencing them > > > > for about a year.I find living with these > > symptoms to be > > > > very hard. I had my testosterone checked and it > > was around > > > > 500. How can I be having all these symptoms > > non-stop? > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 I will look into that. Thanks > > > > > > > > Hi all, Glad to see you here. > > > > I had a surgery inflicted on my testicles about a > > year ago and > > > > have had very low energy mentally and physically > > as well as exhaustion hot sensations in my body,dificulty > > concentrating,memory and diminished sexual desire ever > > since.Does this sound like low testosterone? Im 33 and > > before hand i had very high energy,been experiencing them > > for about a year.I find living with these symptoms to be > > very hard. I had my testosterone checked and it was around > > 500. How can I be having all these symptoms non-stop? > > > > > > > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2010 Report Share Posted June 29, 2010 Don't get your hopes up it's your Testosterone at 500 it's a hard sell. And your lucky it can be something wrong this has your level on the lower side yet I know a lot of men on TRT that keep there levels at about 500. I need to ask was this a morning Test did you take the blood test in the morning about 8:30 to 9 am if not your levels are higher then this testosterone needs to be tested in the morning. We have a guy here sick as a dog could not figure out what was wrong with him. He seen one Dr. after the other nothing. Then he seen Dr. O and Hardasnails this found out what was wrong with him it is Milk. His name is Phil I have not seen him posting but here he is doing good. Go see Dr. O send Hardasnail an Email ask about what you need to do to see them. =================================================== Overbeck hardasnails1973@... 484-868-0916 contact 1100 fayette st Conshohocken Internal medicine Male and female hormone disorders and metabolic disorders 610-828-2026 Co-Moderator Phil > From: Jim <jim122676@...> > Subject: Re: New to forum > > Date: Tuesday, June 29, 2010, 3:45 PM > I still get morning wood and do not > have a problem performing sexually, when i can actually get > in the mood. But i have all the symptoms of low testosterone > so i dont know. I will take the test you recommend and get > back to you. Thanks everyone for the recommendations. I > really appreciate it. > > > > > > > > > > > > From: Jim <jim122676@> > > > > > Subject: New to forum > > > > > > > > > > Date: Tuesday, June 29, 2010, 12:53 PM > > > > > Hi all, Glad to see you here. > > > > > I had a surgery inflicted on my > testicles about a > > > year ago > > > > > and > > > > > have had very low energy mentally and > physically > > > as well as > > > > > exhaustion hot sensations in my > body,dificulty > > > > > concentrating,memory and diminished > sexual desire > > > ever > > > > > since.Does this sound like low > testosterone? Im > > > 33 and > > > > > before hand i had very high > energy,been > > > experiencing them > > > > > for about a year.I find living with > these > > > symptoms to be > > > > > very hard. I had my testosterone > checked and it > > > was around > > > > > 500. How can I be having all these > symptoms > > > non-stop? > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 Hello I am new to this forum and have found you after being recently diagnosed with MS, Lupus, and other autoimmune diseases. I had saline breast implants put in a little over a year ago and have become symptomatic since the surgery. Three months ago I became very ill, have seen several specialists, none which have helped as of yet. I have a positive ANA, and a high sed rate. Three days ago I noticed that one of my breasts is smaller than the other, and therefore suspect a rupture or leak of some kind. I have talked to a few other woman who tend to think this is what may be making me sick. Have any of you experienced this before? If so, were there any tests to show that it was/is your implants making you sick? Did you feel better after explant surgery? I am lost and am looking for answers. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Hi Laelah, I'm sorry to hear about your rupture and your ANA test. That is a sign that something is wrong in your body and you may want to reconsider your replacement of the implant! How long have you had your implants? Patty > > Hello I am new to this forum and have found you after being recently diagnosed with MS, Lupus, and other autoimmune diseases. I had saline breast implants put in a little over a year ago and have become symptomatic since the surgery. Three months ago I became very ill, have seen several specialists, none which have helped as of yet. I have a positive ANA, and a high sed rate. Three days ago I noticed that one of my breasts is smaller than the other, and therefore suspect a rupture or leak of some kind. I have talked to a few other woman who tend to think this is what may be making me sick. Have any of you experienced this before? If so, were there any tests to show that it was/is your implants making you sick? Did you feel better after explant surgery? I am lost and am looking for answers. > > Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 4 years.Laelah Quintor(510) 715-0350quintors@...Sent from my iPhoneOn Jul 21, 2010, at 8:50 AM, "glory2glory1401" <glory2glory1401@...> wrote: Hi Laelah, I'm sorry to hear about your rupture and your ANA test. That is a sign that something is wrong in your body and you may want to reconsider your replacement of the implant! How long have you had your implants? Patty > > Hello I am new to this forum and have found you after being recently diagnosed with MS, Lupus, and other autoimmune diseases. I had saline breast implants put in a little over a year ago and have become symptomatic since the surgery. Three months ago I became very ill, have seen several specialists, none which have helped as of yet. I have a positive ANA, and a high sed rate. Three days ago I noticed that one of my breasts is smaller than the other, and therefore suspect a rupture or leak of some kind. I have talked to a few other woman who tend to think this is what may be making me sick. Have any of you experienced this before? If so, were there any tests to show that it was/is your implants making you sick? Did you feel better after explant surgery? I am lost and am looking for answers. > > Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Hi Laelah, I am completely open to talking to you, yes! Well today I went to my plastic surgeon and was told that I do not have a rupture. At this point I do not know what to think. My right breast looks quite a bit smaller than my left. The Dr. told me that it is just the way my breasts have settled. He also told me (which I knew he would) that there is no correlation between autoimmune symptoms/diseases and implants. He told me my Rhuematologist needed to go back to school if she thinks there is a connection between the two. So with that said, I just don't know what to do or where to go. I am going to consult with an explant surgeon in a few weeks. I have all the symptoms that all of these other women had. My lips and tongue even burn! I am on nuerontin for the muscle weakness and widespread pain throughout my body. Another Dr. gave me antidepressents, which I refuse to take. But yes, let's talk. When is a good time to call you? From: Laelah Quintor <quintor.laelah@...>" " < >Sent: Tue, July 20, 2010 7:57:18 PMSubject: Re: New to forum Hi , I am new as well and have a positive ANA test (rhematoid arthritis). I have saline implants and had one rupture a month ago and had to have it replaced. I'd love to talk and compare notes. Let me know if you're open to that. I live in California and can call you. Let me know. Laelah Quintor (510) 715-0350 quintorsaol (DOT) com Sent from my iPhone On Jul 20, 2010, at 11:35 AM, "tescobosa" <tescobosa (DOT) com> wrote: Hello I am new to this forum and have found you after being recently diagnosed with MS, Lupus, and other autoimmune diseases. I had saline breast implants put in a little over a year ago and have become symptomatic since the surgery. Three months ago I became very ill, have seen several specialists, none which have helped as of yet. I have a positive ANA, and a high sed rate. Three days ago I noticed that one of my breasts is smaller than the other, and therefore suspect a rupture or leak of some kind. I have talked to a few other woman who tend to think this is what may be making me sick. Have any of you experienced this before? If so, were there any tests to show that it was/is your implants making you sick? Did you feel better after explant surgery? I am lost and am looking for answers.Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 my daughter is 17 and was diagnosed at 12. We have gone through similar experiences with her, anger, resentment, mad at her dad and I because we couldn't fix this. the best advise I can give you is this, be emotionally wherever she is, change your expectations of what is ok behavior, and what the future is going to look like. She will get there, just not at the same rate as her healthy friends. OUr leigh is a beautiful girl, but extremely fragile physically and at times emotionally. antidepressants help a lot, find a good clinical social worker to help her through. monitor her stress at school and take steps to lower it. We put our daughter in independent study at a local charter school in her junior year. spend as much time with her as she will let you, but make sure to let her take the lead emotionally, don't bring up the illness unless she does, when she is feeling awful, just be there, don't try to fix it, but let her know you are her partner in this journey. occasionally let her see you cry, not often but sometimes they need to know we feel their pain. And when you are feeling overwhelmed by this, call another one of the parents who deal with it everyday. I was talking to a close friend today and I told her I can't remember the time before Leigh was sick. She has been frail for so long, and as we approach that time when most kids move on to college, as her sister did, it has become obvious that she will not be leaving the nest soon. I think about it like Holland. let me explain. say you have planned a trip to Italy, you learned the language, traded in your money for lira, and have a map of the countryside. but when the plane lands, it is in Holland. Now Holland is not Italy and you are initially not prepared to travel in this country. you must learn the language, and find a map to get around. and after a while you learn to live in Holland. it isn't where you thought you were going, but it is where you landed, so make the best of it. Achalasia is something our kids will deal with for the rest of their lives. we can't fix this, but we can give them as many tools as possible to survive and flourish in their own way. my email is helenestovall@..., and my cell number is 5309410706. call if you need to talk. Helene > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > Thanks for your help. > Maureen Young > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Thank you for your replies...its nice to be able to reach out to others who are going through the same thing. She is tired of her diet. We have always been a family who ate a wide variety of foods and she out of my 2 daughters loves to eat and cook so the irony of her getting this disease is even more upsetting to her. I have noticed that she is not really losing weight the last few months in fact she has gained. I think the high carb diet with her lack of excersise and living in Wisc. during the winter months has something to do with that although she is vomiting. So to a certain degree I have come to the point that I need to follow her lead as she is the one going through this. My concern is that she is looking for a quick fix like what the surgery provided and all will be well. I need to call the gastro doc today to let them know the balloon treatment from 2 wks ago has not really altered her digestive problems. Where would I find support groups in my area that she may attend....are there such a thing? Maureen Young ________________________________ From: " stovall.h@... " <stovall.h@...> achalasia Sent: Monday, May 16, 2011 12:03 AM Subject: Re: New to Forum  my daughter is 17 and was diagnosed at 12. We have gone through similar experiences with her, anger, resentment, mad at her dad and I because we couldn't fix this. the best advise I can give you is this, be emotionally wherever she is, change your expectations of what is ok behavior, and what the future is going to look like. She will get there, just not at the same rate as her healthy friends. OUr leigh is a beautiful girl, but extremely fragile physically and at times emotionally. antidepressants help a lot, find a good clinical social worker to help her through. monitor her stress at school and take steps to lower it. We put our daughter in independent study at a local charter school in her junior year. spend as much time with her as she will let you, but make sure to let her take the lead emotionally, don't bring up the illness unless she does, when she is feeling awful, just be there, don't try to fix it, but let her know you are her partner in this journey. occasionally let her see you cry, not often but sometimes they need to know we feel their pain. And when you are feeling overwhelmed by this, call another one of the parents who deal with it everyday. I was talking to a close friend today and I told her I can't remember the time before Leigh was sick. She has been frail for so long, and as we approach that time when most kids move on to college, as her sister did, it has become obvious that she will not be leaving the nest soon. I think about it like Holland. let me explain. say you have planned a trip to Italy, you learned the language, traded in your money for lira, and have a map of the countryside. but when the plane lands, it is in Holland. Now Holland is not Italy and you are initially not prepared to travel in this country. you must learn the language, and find a map to get around. and after a while you learn to live in Holland. it isn't where you thought you were going, but it is where you landed, so make the best of it. Achalasia is something our kids will deal with for the rest of their lives. we can't fix this, but we can give them as many tools as possible to survive and flourish in their own way. my email is helenestovall@..., and my cell number is 5309410706. call if you need to talk. Helene > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > Thanks for your help. > Maureen Young > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Based upon how rare this disease is, this online community is probably going to be the best support group you will ever find. However, within this group there are " sub groups " of people who have met personally, in the real world, in restaurants! (of all places). We relate at a personal level very well with each other. More specifically, in your case, while it is usually the parent who posts about their children, contact could probably be made between teenagers, with a little effort, which might prove very helpful to your daughter. The physical aspects of this disease is a " process " we go thru from early symptoms to " discovery " to learning how to deal with this for the rest of our lives. So are the emotional aspects being a " process " where some of us have dealt with depression, plus the social issues, especially when one is diagnosed while very young. I would suggest that you and your daughter go thru the posts here together as you face the disease together and see the wealth of information, from technical to emotional, and see how we have dealt with it. You begin to feel less alone dealing with this and a part of this community, as much as, if not more than a local support group (which probably does not exist). ________________________________ From: Mike Young <mmyoung5758@...> " achalasia " <achalasia > Sent: Mon, May 16, 2011 7:47:54 AM Subject: Re: Re: New to Forum  Thank you for your replies...its nice to be able to reach out to others who are going through the same thing. She is tired of her diet. We have always been a family who ate a wide variety of foods and she out of my 2 daughters loves to eat and cook so the irony of her getting this disease is even more upsetting to her. I have noticed that she is not really losing weight the last few months in fact she has gained. I think the high carb diet with her lack of excersise and living in Wisc. during the winter months has something to do with that although she is vomiting. So to a certain degree I have come to the point that I need to follow her lead as she is the one going through this. My concern is that she is looking for a quick fix like what the surgery provided and all will be well. I need to call the gastro doc today to let them know the balloon treatment from 2 wks ago has not really altered her digestive problems. Where would I find support groups in my area that she may attend....are there such a thing? Maureen Young ________________________________ From: " stovall.h@... " <stovall.h@...> achalasia Sent: Monday, May 16, 2011 12:03 AM Subject: Re: New to Forum  my daughter is 17 and was diagnosed at 12. We have gone through similar experiences with her, anger, resentment, mad at her dad and I because we couldn't fix this. the best advise I can give you is this, be emotionally wherever she is, change your expectations of what is ok behavior, and what the future is going to look like. She will get there, just not at the same rate as her healthy friends. OUr leigh is a beautiful girl, but extremely fragile physically and at times emotionally. antidepressants help a lot, find a good clinical social worker to help her through. monitor her stress at school and take steps to lower it. We put our daughter in independent study at a local charter school in her junior year. spend as much time with her as she will let you, but make sure to let her take the lead emotionally, don't bring up the illness unless she does, when she is feeling awful, just be there, don't try to fix it, but let her know you are her partner in this journey. occasionally let her see you cry, not often but sometimes they need to know we feel their pain. And when you are feeling overwhelmed by this, call another one of the parents who deal with it everyday. I was talking to a close friend today and I told her I can't remember the time before Leigh was sick. She has been frail for so long, and as we approach that time when most kids move on to college, as her sister did, it has become obvious that she will not be leaving the nest soon. I think about it like Holland. let me explain. say you have planned a trip to Italy, you learned the language, traded in your money for lira, and have a map of the countryside. but when the plane lands, it is in Holland. Now Holland is not Italy and you are initially not prepared to travel in this country. you must learn the language, and find a map to get around. and after a while you learn to live in Holland. it isn't where you thought you were going, but it is where you landed, so make the best of it. Achalasia is something our kids will deal with for the rest of their lives. we can't fix this, but we can give them as many tools as possible to survive and flourish in their own way. my email is helenestovall@..., and my cell number is 5309410706. call if you need to talk. Helene > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one >balloon treatment then we had the surgery. She was good for 9 mos and started >have trouble again this past Dec. Since Jan we have had 2 balloon treatments and >she said neither of them have worked. > > She is now just turned 14 and I try to talk to her about the disease and how >she will need to manage it as it will never go away. She has it in her head she >needs another surgery...I talked to her gastro doc and he did discuss her case >with the surgeon and was told surgery would be a last resort as it would be hard >on her. She being 14 is not the easiest to speak with right now but her anger at >the disease is playing a part in this. How should I approach her with some >coping skills and the reality of how she will need to deal with it. Medically I >put it in the hands of her docs but psychologically how do I approach it. > Thanks for your help. > Maureen Young > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Just my opinion, and I'm reading these very quickly, but I just don't " get " avoiding surgery. Talk to a well qualified surgeon. I have teenagers, and now understand much more clearly the issues, but for the vast majority of us, surgery makes us almost normal, certainly reopens the doors to social interaction around food. You have to absolutely go to the best surgeons, but tears are in my eyes thinking about teenagers suffering. There are probably really only about 10 good surgeons in the country with enough experience with achalasia. If I had a child with achalasia, I would sell everything, do anything, to get to one of those surgeons and treat this problem at a young age. It is the best investment you can make. Talk to or some of the others that have had achalasia as a young child. In my opinion, the earlier the treastment, the better the chances for long term survival. Think of the esophagus as a sock... it stretches out more and more, if untreated. It doesn't spring back. It can loop, twist turn and droop, the goal is to save the esophagus, or they end up with a removal, and have missed all these developmental years. I can't imagine dealing with a teenager with this problem, but as parents somehow we have to find a way to take charge, and seek out the best doctors. There are few doctors who know enough about achalasia to really give informed advice. Most of us are middle aged before we get achalasia, we already have education, skills, confidence. More harmful to teenagers, in my opinion, is letting the disease identify them and control their life decisions, like college. There are thousands of success stories here. Most don't come back and post. There are a few very tragic stories, but after reading through the posts, the most common thread is that people are in worse shape by delaying and regret either going to less experienced doctors or just not getting treatment because of money or circumstances. IMHO we should do all we can to stop the deterioration, at whatever stage we are in. It just keeps getting worse. We shouldn't settle for miserable living. It is generally a downhill slide. Especially at a young age. For someone older with other issues, that is a separate decision. I apologize for the wordiness... my teenager has even fallen back asleep and will be rushing for school... but these posts break my heart. Sandy > > > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > > Thanks for your help. > > Maureen Young > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 You might check Facebook, where the kids are. There have not been enough kids to get a private Facebook group, but there are enough of us old timers that can nudge the old timer kids to maybe join. There are some other Facegroups popping up, but a teen or young adult group would be wonderful. They may feel awkward if we are in that group. There are success stories and for many surgery IS absolutely the closest thing to a quick fix, but in the hands of an inexperienced doctor, it can help, but then issues can pop up later. There are many Moms and Dads here that might be able to nudge their kids to a Facebook group and they find each other. It can be a closed/private group so their posts aren't visible to the rest of their friends. Sandy > > > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > > Thanks for your help. > > Maureen Young > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Maureen,my daughter had the heller myotomy and the fundo wrap six years ago. it saved her life. it was done at ucsf, and was a laproscopic procedure. it is the right thing to do with a young achalasia victim, keeping the distention of the esophagus to a minimum. does it cure things? no. but it gives them more time. without the heller, there is no swallow, no matter what the diet is. there is no medication to fix this, the only intervention is surgical. think about it. our doctor was william snape, at california pacific, and the bay area pediatric surgical team did the surgery. no complications from the surgery, the issues we deal with now are the normal awful progression of achalasia. you will be buying her some " normal " time with the surgery. don't fear it. without it the progression of the disease will be unrelenting and the damage severe. From: Mike Young <mmyoung5758@...> Subject: Re: Re: New to Forum " achalasia " <achalasia > Date: Monday, May 16, 2011, 4:47 AM  Thank you for your replies...its nice to be able to reach out to others who are going through the same thing. She is tired of her diet. We have always been a family who ate a wide variety of foods and she out of my 2 daughters loves to eat and cook so the irony of her getting this disease is even more upsetting to her. I have noticed that she is not really losing weight the last few months in fact she has gained. I think the high carb diet with her lack of excersise and living in Wisc. during the winter months has something to do with that although she is vomiting. So to a certain degree I have come to the point that I need to follow her lead as she is the one going through this. My concern is that she is looking for a quick fix like what the surgery provided and all will be well. I need to call the gastro doc today to let them know the balloon treatment from 2 wks ago has not really altered her digestive problems. Where would I find support groups in my area that she may attend....are there such a thing? Maureen Young ________________________________ From: " stovall.h@... " <stovall.h@...> achalasia Sent: Monday, May 16, 2011 12:03 AM Subject: Re: New to Forum  my daughter is 17 and was diagnosed at 12. We have gone through similar experiences with her, anger, resentment, mad at her dad and I because we couldn't fix this. the best advise I can give you is this, be emotionally wherever she is, change your expectations of what is ok behavior, and what the future is going to look like. She will get there, just not at the same rate as her healthy friends. OUr leigh is a beautiful girl, but extremely fragile physically and at times emotionally. antidepressants help a lot, find a good clinical social worker to help her through. monitor her stress at school and take steps to lower it. We put our daughter in independent study at a local charter school in her junior year. spend as much time with her as she will let you, but make sure to let her take the lead emotionally, don't bring up the illness unless she does, when she is feeling awful, just be there, don't try to fix it, but let her know you are her partner in this journey. occasionally let her see you cry, not often but sometimes they need to know we feel their pain. And when you are feeling overwhelmed by this, call another one of the parents who deal with it everyday. I was talking to a close friend today and I told her I can't remember the time before Leigh was sick. She has been frail for so long, and as we approach that time when most kids move on to college, as her sister did, it has become obvious that she will not be leaving the nest soon. I think about it like Holland. let me explain. say you have planned a trip to Italy, you learned the language, traded in your money for lira, and have a map of the countryside. but when the plane lands, it is in Holland. Now Holland is not Italy and you are initially not prepared to travel in this country. you must learn the language, and find a map to get around. and after a while you learn to live in Holland. it isn't where you thought you were going, but it is where you landed, so make the best of it. Achalasia is something our kids will deal with for the rest of their lives. we can't fix this, but we can give them as many tools as possible to survive and flourish in their own way. my email is helenestovall@..., and my cell number is 5309410706. call if you need to talk. Helene > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > Thanks for your help. > Maureen Young > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 She had that done in March of 2010. She did fine for 9 months. ________________________________ From: helene stovall <stovall.h@...> achalasia Sent: Monday, May 16, 2011 12:11 PM Subject: Re: Re: New to Forum  Maureen,my daughter had the heller myotomy and the fundo wrap six years ago. it saved her life. it was done at ucsf, and was a laproscopic procedure. it is the right thing to do with a young achalasia victim, keeping the distention of the esophagus to a minimum. does it cure things? no. but it gives them more time. without the heller, there is no swallow, no matter what the diet is. there is no medication to fix this, the only intervention is surgical. think about it. our doctor was william snape, at california pacific, and the bay area pediatric surgical team did the surgery. no complications from the surgery, the issues we deal with now are the normal awful progression of achalasia. you will be buying her some " normal " time with the surgery. don't fear it. without it the progression of the disease will be unrelenting and the damage severe. From: Mike Young <mmyoung5758@...> Subject: Re: Re: New to Forum " achalasia " <achalasia > Date: Monday, May 16, 2011, 4:47 AM  Thank you for your replies...its nice to be able to reach out to others who are going through the same thing. She is tired of her diet. We have always been a family who ate a wide variety of foods and she out of my 2 daughters loves to eat and cook so the irony of her getting this disease is even more upsetting to her. I have noticed that she is not really losing weight the last few months in fact she has gained. I think the high carb diet with her lack of excersise and living in Wisc. during the winter months has something to do with that although she is vomiting. So to a certain degree I have come to the point that I need to follow her lead as she is the one going through this. My concern is that she is looking for a quick fix like what the surgery provided and all will be well. I need to call the gastro doc today to let them know the balloon treatment from 2 wks ago has not really altered her digestive problems. Where would I find support groups in my area that she may attend....are there such a thing? Maureen Young ________________________________ From: " stovall.h@... " <stovall.h@...> achalasia Sent: Monday, May 16, 2011 12:03 AM Subject: Re: New to Forum  my daughter is 17 and was diagnosed at 12. We have gone through similar experiences with her, anger, resentment, mad at her dad and I because we couldn't fix this. the best advise I can give you is this, be emotionally wherever she is, change your expectations of what is ok behavior, and what the future is going to look like. She will get there, just not at the same rate as her healthy friends. OUr leigh is a beautiful girl, but extremely fragile physically and at times emotionally. antidepressants help a lot, find a good clinical social worker to help her through. monitor her stress at school and take steps to lower it. We put our daughter in independent study at a local charter school in her junior year. spend as much time with her as she will let you, but make sure to let her take the lead emotionally, don't bring up the illness unless she does, when she is feeling awful, just be there, don't try to fix it, but let her know you are her partner in this journey. occasionally let her see you cry, not often but sometimes they need to know we feel their pain. And when you are feeling overwhelmed by this, call another one of the parents who deal with it everyday. I was talking to a close friend today and I told her I can't remember the time before Leigh was sick. She has been frail for so long, and as we approach that time when most kids move on to college, as her sister did, it has become obvious that she will not be leaving the nest soon. I think about it like Holland. let me explain. say you have planned a trip to Italy, you learned the language, traded in your money for lira, and have a map of the countryside. but when the plane lands, it is in Holland. Now Holland is not Italy and you are initially not prepared to travel in this country. you must learn the language, and find a map to get around. and after a while you learn to live in Holland. it isn't where you thought you were going, but it is where you landed, so make the best of it. Achalasia is something our kids will deal with for the rest of their lives. we can't fix this, but we can give them as many tools as possible to survive and flourish in their own way. my email is helenestovall@..., and my cell number is 5309410706. call if you need to talk. Helene > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one balloon treatment then we had the surgery. She was good for 9 mos and started have trouble again this past Dec. Since Jan we have had 2 balloon treatments and she said neither of them have worked. > She is now just turned 14 and I try to talk to her about the disease and how she will need to manage it as it will never go away. She has it in her head she needs another surgery...I talked to her gastro doc and he did discuss her case with the surgeon and was told surgery would be a last resort as it would be hard on her. She being 14 is not the easiest to speak with right now but her anger at the disease is playing a part in this. How should I approach her with some coping skills and the reality of how she will need to deal with it. Medically I put it in the hands of her docs but psychologically how do I approach it. > Thanks for your help. > Maureen Young > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Welcome to this group, Maureen. Maureen wrote: > > ... She has it in her head she needs another surgery...I talked to her > gastro doc and he did discuss her case with the surgeon and was told > surgery would be a last resort as it would be hard on her. > How many patients with achalasia does that GI and that surgeon have? Do they understand how hard it is to live with achalasia that has not been successfully treated? Have they discussed with you what may happen to the esophagus if a successful treatment is not done? That may be hard on her too. Being a teenager is hard. Being a teenager suffering with achalasia is hard on her. There are adults in this group that have risked risky surgeries, even risking death, because achalasia was hard on them. If you go back and check the old messages you will find a number of messages from adults that said they cried when they found this support group. You can also find some messages where people said they didn't know if they could continue living as they were. There are probably others that have had those thoughts but repressed them and never talked about them. How does the surgeon define hard? I can tell you how many people here spell hard, a c h a l a s i a. Often our doctors and families, even when they know what we have don't understand how hard it is. I am not saying you don't understand. I don't know you, but I know most people around us can't imagine what it is like and we couldn't have if we didn't go through it. People around us want to tell us how to deal with it and how we should feel and how we should live. They aren't qualified to advise because they just don't get it, and we know it. Even some doctors that treat achalasia probably should keep some of their advise to themselves because their lack of empathy disqualifies them. It is hard to imagine that something as simple as eating, something people can do without even thinking about it while they do it, could be so much trouble to live with when it doesn't work right. It would seem like a little effort and one could achieve a way to compensate for such a simple, easy thing. Not generally the case! > She being 14 is not the easiest to speak with right now but her anger > at the disease is playing a part in this. > Frustration, anger, depression are par for the course. Let her know these are normal and not something to be ashamed of. Together, look forward to the day when these may not be so intense. Like achalasia, we learn to live with these things. Not learning to behave well even with the conditions may be cause for shame but not having the conditions. Learning how to live and behave is of course what being a teenager is about. This just makes it harder but if the lessons are learned they can be applied in other difficult times. > How should I approach her with some coping skills and the reality of > how she will need to deal with it. > Think of it like having a dog. If she has a dog, she owns it, but the family still has dog. Your family has achalasia, but your daughter owns it. You all need coping skills but she has some extra responsibility because she owns it. You also need to listen to her because she does own it. Her GI doesn't own it. Her surgeon doesn't own it. She owns it and knows it better than they do. What does she want to do about it? Does she want to wait until surgery is not hard? Would she like to see a more qualified surgeon? Is she willing to take some responsibility? > Medically I put it in the hands of her docs but psychologically how do > I approach it. > Here is a bit of insight that may or may not help you. One of the joys of growing up is finding control. When we are little we learn to control things with our bodies. We also learn we have some control on people emotionally. These things can be a lot of fun. When we are little we are often told what to do, where to go, what to think. As we get older we expect to take more control of these things and often we enjoy being able to successfully do so. With achalasia we loose control of something fundamental to our emotional well being. We can't eat what we would have chosen. We can't enjoy events that we would have chosen to partake of. We have lost control. I think one of the ways of coping with achalasia is extending and using our control in other areas to help make up for losses caused by achalasia. We should choose to get involved other kinds of events. Choose to treat ourselves to comforts other than food. Choose to make what we can do, and even what we can eat, fulfilling. One more thing, probably obvious, but I want you hear someone say it. Achalasia is not your fault, or your daughter's fault. There was nothing you could have known to avoid it. You are being a good parent. You are looking for answers because you, like the rest of us, don't have all the answers. When it comes to achalasia no one has all the answers. Doctors don't even all agree on many things about it. I imagine that you are doing the best you can with what you do know. I also expect that however things turn out you will all have some comfort in that you tried take this on the best you could. I tell people to learn as much as they can, then with their doctors try to make the best guessed they can, and never look back. We are all different in the way achalasia deals with us. There are no guarantees, but we can find comfort in that we tried the best we could. BTW: I am doing very well now after my surgery. Life is much easier after a successful treatment, though I know there are no guarantees about the future. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 I agree with Sandy and having gone through the mental, emotional, and physical torture Achalasia has to offer, I appreciate her words. I had a VATS heller myotomy a month ago and now I am a new person. All of my friends say they are so glad to have me back. They couldn't believe I handled my disease so well, but thought I was a completely different person! Before surgery, I didn't even want to get out of bed...why? When you can hardly eat and you have very little energy, what's the point. Food and life loses appeal. I actually felt like starving myself because I didn't want to live like that. My doctors here in my home-town did not give me any help or support in finding a solution to my problem. I received all of my information from this group...THANK YOU everyone! Keep " googling " your questions and ask people in this group. It is tough going through this alone, so don't be nervous about letting people from this group help you! Marci Northern California On Mon, May 16, 2011 at 10:36 AM, notan ostrich <notan_ostrich@...>wrote: > > > Welcome to this group, Maureen. > > Maureen wrote: > > > > ... She has it in her head she needs another surgery...I talked to her > > gastro doc and he did discuss her case with the surgeon and was told > > surgery would be a last resort as it would be hard on her. > > > > How many patients with achalasia does that GI and that surgeon have? Do > they understand how hard it is to live with achalasia that has not been > successfully treated? Have they discussed with you what may happen to > the esophagus if a successful treatment is not done? That may be hard on > her too. Being a teenager is hard. Being a teenager suffering with > achalasia is hard on her. There are adults in this group that have > risked risky surgeries, even risking death, because achalasia was hard > on them. If you go back and check the old messages you will find a > number of messages from adults that said they cried when they found this > support group. You can also find some messages where people said they > didn't know if they could continue living as they were. There are > probably others that have had those thoughts but repressed them and > never talked about them. How does the surgeon define hard? I can tell > you how many people here spell hard, a c h a l a s i a. Often our > doctors and families, even when they know what we have don't understand > how hard it is. I am not saying you don't understand. I don't know you, > but I know most people around us can't imagine what it is like and we > couldn't have if we didn't go through it. > > People around us want to tell us how to deal with it and how we should > feel and how we should live. They aren't qualified to advise because > they just don't get it, and we know it. Even some doctors that treat > achalasia probably should keep some of their advise to themselves > because their lack of empathy disqualifies them. It is hard to imagine > that something as simple as eating, something people can do without even > thinking about it while they do it, could be so much trouble to live > with when it doesn't work right. It would seem like a little effort and > one could achieve a way to compensate for such a simple, easy thing. Not > generally the case! > > > > She being 14 is not the easiest to speak with right now but her anger > > at the disease is playing a part in this. > > > > Frustration, anger, depression are par for the course. Let her know > these are normal and not something to be ashamed of. Together, look > forward to the day when these may not be so intense. Like achalasia, we > learn to live with these things. Not learning to behave well even with > the conditions may be cause for shame but not having the conditions. > Learning how to live and behave is of course what being a teenager is > about. This just makes it harder but if the lessons are learned they can > be applied in other difficult times. > > > > How should I approach her with some coping skills and the reality of > > how she will need to deal with it. > > > > Think of it like having a dog. If she has a dog, she owns it, but the > family still has dog. Your family has achalasia, but your daughter owns > it. You all need coping skills but she has some extra responsibility > because she owns it. You also need to listen to her because she does own > it. Her GI doesn't own it. Her surgeon doesn't own it. She owns it and > knows it better than they do. What does she want to do about it? Does > she want to wait until surgery is not hard? Would she like to see a more > qualified surgeon? Is she willing to take some responsibility? > > > > Medically I put it in the hands of her docs but psychologically how do > > I approach it. > > > Here is a bit of insight that may or may not help you. One of the joys > of growing up is finding control. When we are little we learn to control > things with our bodies. We also learn we have some control on people > emotionally. These things can be a lot of fun. When we are little we are > often told what to do, where to go, what to think. As we get older we > expect to take more control of these things and often we enjoy being > able to successfully do so. With achalasia we loose control of something > fundamental to our emotional well being. We can't eat what we would have > chosen. We can't enjoy events that we would have chosen to partake of. > We have lost control. I think one of the ways of coping with achalasia > is extending and using our control in other areas to help make up for > losses caused by achalasia. We should choose to get involved other kinds > of events. Choose to treat ourselves to comforts other than food. Choose > to make what we can do, and even what we can eat, fulfilling. > > One more thing, probably obvious, but I want you hear someone say it. > Achalasia is not your fault, or your daughter's fault. There was nothing > you could have known to avoid it. You are being a good parent. You are > looking for answers because you, like the rest of us, don't have all the > answers. When it comes to achalasia no one has all the answers. Doctors > don't even all agree on many things about it. I imagine that you are > doing the best you can with what you do know. I also expect that however > things turn out you will all have some comfort in that you tried take > this on the best you could. I tell people to learn as much as they can, > then with their doctors try to make the best guessed they can, and never > look back. We are all different in the way achalasia deals with us. > There are no guarantees, but we can find comfort in that we tried the > best we could. > > BTW: I am doing very well now after my surgery. Life is much easier > after a successful treatment, though I know there are no guarantees > about the future. > > notan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Marci, We are in redding. Where in northern California are you? Who is your doc? Sent from my iPhone On May 16, 2011, at 11:53 AM, Marcene Rainey <marcenerainey@...> wrote: > I agree with Sandy and having gone through the mental, emotional, and > physical torture Achalasia has to offer, I appreciate her words. I had a > VATS heller myotomy a month ago and now I am a new person. All of my > friends say they are so glad to have me back. They couldn't believe I > handled my disease so well, but thought I was a completely different > person! Before surgery, I didn't even want to get out of bed...why? When > you can hardly eat and you have very little energy, what's the point. > Food and life loses appeal. I actually felt like starving myself because I > didn't want to live like that. > > My doctors here in my home-town did not give me any help or support in > finding a solution to my problem. I received all of my information from > this group...THANK YOU everyone! Keep " googling " your questions and > ask people in this group. It is tough going through this alone, so don't be > nervous about letting people from this group help you! > > Marci > Northern California > > > > > > On Mon, May 16, 2011 at 10:36 AM, notan ostrich <notan_ostrich@...>wrote: > >> >> >> Welcome to this group, Maureen. >> >> Maureen wrote: >>> >>> ... She has it in her head she needs another surgery...I talked to her >>> gastro doc and he did discuss her case with the surgeon and was told >>> surgery would be a last resort as it would be hard on her. >>> >> >> How many patients with achalasia does that GI and that surgeon have? Do >> they understand how hard it is to live with achalasia that has not been >> successfully treated? Have they discussed with you what may happen to >> the esophagus if a successful treatment is not done? That may be hard on >> her too. Being a teenager is hard. Being a teenager suffering with >> achalasia is hard on her. There are adults in this group that have >> risked risky surgeries, even risking death, because achalasia was hard >> on them. If you go back and check the old messages you will find a >> number of messages from adults that said they cried when they found this >> support group. You can also find some messages where people said they >> didn't know if they could continue living as they were. There are >> probably others that have had those thoughts but repressed them and >> never talked about them. How does the surgeon define hard? I can tell >> you how many people here spell hard, a c h a l a s i a. Often our >> doctors and families, even when they know what we have don't understand >> how hard it is. I am not saying you don't understand. I don't know you, >> but I know most people around us can't imagine what it is like and we >> couldn't have if we didn't go through it. >> >> People around us want to tell us how to deal with it and how we should >> feel and how we should live. They aren't qualified to advise because >> they just don't get it, and we know it. Even some doctors that treat >> achalasia probably should keep some of their advise to themselves >> because their lack of empathy disqualifies them. It is hard to imagine >> that something as simple as eating, something people can do without even >> thinking about it while they do it, could be so much trouble to live >> with when it doesn't work right. It would seem like a little effort and >> one could achieve a way to compensate for such a simple, easy thing. Not >> generally the case! >> >> >>> She being 14 is not the easiest to speak with right now but her anger >>> at the disease is playing a part in this. >>> >> >> Frustration, anger, depression are par for the course. Let her know >> these are normal and not something to be ashamed of. Together, look >> forward to the day when these may not be so intense. Like achalasia, we >> learn to live with these things. Not learning to behave well even with >> the conditions may be cause for shame but not having the conditions. >> Learning how to live and behave is of course what being a teenager is >> about. This just makes it harder but if the lessons are learned they can >> be applied in other difficult times. >> >> >>> How should I approach her with some coping skills and the reality of >>> how she will need to deal with it. >>> >> >> Think of it like having a dog. If she has a dog, she owns it, but the >> family still has dog. Your family has achalasia, but your daughter owns >> it. You all need coping skills but she has some extra responsibility >> because she owns it. You also need to listen to her because she does own >> it. Her GI doesn't own it. Her surgeon doesn't own it. She owns it and >> knows it better than they do. What does she want to do about it? Does >> she want to wait until surgery is not hard? Would she like to see a more >> qualified surgeon? Is she willing to take some responsibility? >> >> >>> Medically I put it in the hands of her docs but psychologically how do >>> I approach it. >>> >> Here is a bit of insight that may or may not help you. One of the joys >> of growing up is finding control. When we are little we learn to control >> things with our bodies. We also learn we have some control on people >> emotionally. These things can be a lot of fun. When we are little we are >> often told what to do, where to go, what to think. As we get older we >> expect to take more control of these things and often we enjoy being >> able to successfully do so. With achalasia we loose control of something >> fundamental to our emotional well being. We can't eat what we would have >> chosen. We can't enjoy events that we would have chosen to partake of. >> We have lost control. I think one of the ways of coping with achalasia >> is extending and using our control in other areas to help make up for >> losses caused by achalasia. We should choose to get involved other kinds >> of events. Choose to treat ourselves to comforts other than food. Choose >> to make what we can do, and even what we can eat, fulfilling. >> >> One more thing, probably obvious, but I want you hear someone say it. >> Achalasia is not your fault, or your daughter's fault. There was nothing >> you could have known to avoid it. You are being a good parent. You are >> looking for answers because you, like the rest of us, don't have all the >> answers. When it comes to achalasia no one has all the answers. Doctors >> don't even all agree on many things about it. I imagine that you are >> doing the best you can with what you do know. I also expect that however >> things turn out you will all have some comfort in that you tried take >> this on the best you could. I tell people to learn as much as they can, >> then with their doctors try to make the best guessed they can, and never >> look back. We are all different in the way achalasia deals with us. >> There are no guarantees, but we can find comfort in that we tried the >> best we could. >> >> BTW: I am doing very well now after my surgery. Life is much easier >> after a successful treatment, though I know there are no guarantees >> about the future. >> >> notan >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Adam, who was 17 also had VATS @ Cedars, and I touch bases with his Dad every once in a while. He is doing really well, last time I heard. The kids don't post often.. maybe a Mom will start a special safe place for our beloved achalasia kids. I'm thinking there are about 20 of them I've heard about here over the past few years. They all facebook, no disrespect to any othe groups, but if that group is private and their friends can't see, they might really find some good friends. Knowing the withdrawal, depression, misery when you can't eat I can't express strongly enough the need for parents to do all they can to keep finding treatment for their young kids so they can get a good start. I think I would sell anything... do anything, even worse case scenario, I'd go for an ectomy if the alternative was just living with it as a teenager. The froth, difficulty in swallowing saliva, makes us not want to even talk if there isn't somewhere to spit it out, if we aren't well treated. They would recover in 1/3 the time us middle aged people take. Every month to them is like years to us. The actual part of not being able to eat is not so bad in public, it is the rest that goes with it, that is miserable. Marci... so glad to hear you are doing well. That recovery is a little longer it seems from VATS, but the results have lasted me well. Sandy > > > > > > ... She has it in her head she needs another surgery...I talked to her > > > gastro doc and he did discuss her case with the surgeon and was told > > > surgery would be a last resort as it would be hard on her. > > > > > > > How many patients with achalasia does that GI and that surgeon have? Do > > they understand how hard it is to live with achalasia that has not been > > successfully treated? Have they discussed with you what may happen to > > the esophagus if a successful treatment is not done? That may be hard on > > her too. Being a teenager is hard. Being a teenager suffering with > > achalasia is hard on her. There are adults in this group that have > > risked risky surgeries, even risking death, because achalasia was hard > > on them. If you go back and check the old messages you will find a > > number of messages from adults that said they cried when they found this > > support group. You can also find some messages where people said they > > didn't know if they could continue living as they were. There are > > probably others that have had those thoughts but repressed them and > > never talked about them. How does the surgeon define hard? I can tell > > you how many people here spell hard, a c h a l a s i a. Often our > > doctors and families, even when they know what we have don't understand > > how hard it is. I am not saying you don't understand. I don't know you, > > but I know most people around us can't imagine what it is like and we > > couldn't have if we didn't go through it. > > > > People around us want to tell us how to deal with it and how we should > > feel and how we should live. They aren't qualified to advise because > > they just don't get it, and we know it. Even some doctors that treat > > achalasia probably should keep some of their advise to themselves > > because their lack of empathy disqualifies them. It is hard to imagine > > that something as simple as eating, something people can do without even > > thinking about it while they do it, could be so much trouble to live > > with when it doesn't work right. It would seem like a little effort and > > one could achieve a way to compensate for such a simple, easy thing. Not > > generally the case! > > > > > > > She being 14 is not the easiest to speak with right now but her anger > > > at the disease is playing a part in this. > > > > > > > Frustration, anger, depression are par for the course. Let her know > > these are normal and not something to be ashamed of. Together, look > > forward to the day when these may not be so intense. Like achalasia, we > > learn to live with these things. Not learning to behave well even with > > the conditions may be cause for shame but not having the conditions. > > Learning how to live and behave is of course what being a teenager is > > about. This just makes it harder but if the lessons are learned they can > > be applied in other difficult times. > > > > > > > How should I approach her with some coping skills and the reality of > > > how she will need to deal with it. > > > > > > > Think of it like having a dog. If she has a dog, she owns it, but the > > family still has dog. Your family has achalasia, but your daughter owns > > it. You all need coping skills but she has some extra responsibility > > because she owns it. You also need to listen to her because she does own > > it. Her GI doesn't own it. Her surgeon doesn't own it. She owns it and > > knows it better than they do. What does she want to do about it? Does > > she want to wait until surgery is not hard? Would she like to see a more > > qualified surgeon? Is she willing to take some responsibility? > > > > > > > Medically I put it in the hands of her docs but psychologically how do > > > I approach it. > > > > > Here is a bit of insight that may or may not help you. One of the joys > > of growing up is finding control. When we are little we learn to control > > things with our bodies. We also learn we have some control on people > > emotionally. These things can be a lot of fun. When we are little we are > > often told what to do, where to go, what to think. As we get older we > > expect to take more control of these things and often we enjoy being > > able to successfully do so. With achalasia we loose control of something > > fundamental to our emotional well being. We can't eat what we would have > > chosen. We can't enjoy events that we would have chosen to partake of. > > We have lost control. I think one of the ways of coping with achalasia > > is extending and using our control in other areas to help make up for > > losses caused by achalasia. We should choose to get involved other kinds > > of events. Choose to treat ourselves to comforts other than food. Choose > > to make what we can do, and even what we can eat, fulfilling. > > > > One more thing, probably obvious, but I want you hear someone say it. > > Achalasia is not your fault, or your daughter's fault. There was nothing > > you could have known to avoid it. You are being a good parent. You are > > looking for answers because you, like the rest of us, don't have all the > > answers. When it comes to achalasia no one has all the answers. Doctors > > don't even all agree on many things about it. I imagine that you are > > doing the best you can with what you do know. I also expect that however > > things turn out you will all have some comfort in that you tried take > > this on the best you could. I tell people to learn as much as they can, > > then with their doctors try to make the best guessed they can, and never > > look back. We are all different in the way achalasia deals with us. > > There are no guarantees, but we can find comfort in that we tried the > > best we could. > > > > BTW: I am doing very well now after my surgery. Life is much easier > > after a successful treatment, though I know there are no guarantees > > about the future. > > > > notan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Great Story JC! Glad that you found the help you needed at such a young age! My story was symptoms appeared at age 30, and I was not able to find a correct diagnosis for many years. I suffered for 22yrs until last August when I finally (through the help of this group and specific members), was able to get the proper tests done and have surgery! It has changed my life, I am near normal now and agree with you that surgery with an expert doctor can be successful. I am happy to hear your story, I hope other young people who need help will see this and learn! Take care, Julee So Calif. ________________________________ From: Godsgirl <elder_jc@...> achalasia Sent: Tue, May 17, 2011 9:15:52 AM Subject: Re: New to Forum  Hello All, Just a note, I has lots of problems from 9 to 16. I was properly diagnosed when I was almost 17 and weigh about 65 pounds. My mother (a RN) threatened to sue our one local GP if he did not find out what was wrong with me. They actually made a bet that if she was wrong and just a worried old hag of a mother (his words) she would pay for the xrays. If she was right and he was an idiot doctor (her words) he would pay for whatever treatment was needed. Well I had one xray followed by a barium swallow and the local home town Gastro (actually a retired Prof. of Gastroenterology) said it was " classic Achalasia normally only seen in people much older " . I first had a stretching. NO ballons then just a solid rubber tube. ugh then all the motility tests we all love and then off to Denver for a consult with another Gastro who specialized in Pediatrics. In the end it was decided the best outcome for me would be surgery. Now folks this was NOT laproscopic!! It was the full open surgery. It was the only option in 1976. They were correct. It was the correct thing for me. I am now 50 and I have lived a full life, been a missionary, lived around the world and I am still going!! Its not just that the surgery is a easy option, it is the best option for most people!! Now it can be done laproscopiclly and I just read the other day they are now doing myotomies through the endoscope!! You people got it easy. There is really no reason to put off surgery, especially with a young person. BTW, My mother held the doctor to his words even though we had insurance. Blessings, JC -------------------------------- www.healingcommunities.org Cool people with Achalasia http://www.facebook.com/home.php?sk=group_200707803300303 & ap=1 > > > > > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one >balloon treatment then we had the surgery. She was good for 9 mos and started >have trouble again this past Dec. Since Jan we have had 2 balloon treatments and >she said neither of them have worked. > > > > She is now just turned 14 and I try to talk to her about the disease and >how she will need to manage it as it will never go away. She has it in her head >she needs another surgery...I talked to her gastro doc and he did discuss her >case with the surgeon and was told surgery would be a last resort as it would be >hard on her. She being 14 is not the easiest to speak with right now but her >anger at the disease is playing a part in this. How should I approach her with >some coping skills and the reality of how she will need to deal with it. >Medically I put it in the hands of her docs but psychologically how do I >approach it. > > > Thanks for your help. > > > Maureen Young > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I just called up my insurance and have been approved to go to #1 rated gastro hospital according to us news and world...yeah!!! ________________________________ From: Montoya <medhelpinfo@...> achalasia Sent: Tuesday, May 17, 2011 2:53 PM Subject: Re: Re: New to Forum  Great Story JC! Glad that you found the help you needed at such a young age! My story was symptoms appeared at age 30, and I was not able to find a correct diagnosis for many years. I suffered for 22yrs until last August when I finally (through the help of this group and specific members), was able to get the proper tests done and have surgery! It has changed my life, I am near normal now and agree with you that surgery with an expert doctor can be successful. I am happy to hear your story, I hope other young people who need help will see this and learn! Take care, Julee So Calif. ________________________________ From: Godsgirl <elder_jc@...> achalasia Sent: Tue, May 17, 2011 9:15:52 AM Subject: Re: New to Forum  Hello All, Just a note, I has lots of problems from 9 to 16. I was properly diagnosed when I was almost 17 and weigh about 65 pounds. My mother (a RN) threatened to sue our one local GP if he did not find out what was wrong with me. They actually made a bet that if she was wrong and just a worried old hag of a mother (his words) she would pay for the xrays. If she was right and he was an idiot doctor (her words) he would pay for whatever treatment was needed. Well I had one xray followed by a barium swallow and the local home town Gastro (actually a retired Prof. of Gastroenterology) said it was " classic Achalasia normally only seen in people much older " . I first had a stretching. NO ballons then just a solid rubber tube. ugh then all the motility tests we all love and then off to Denver for a consult with another Gastro who specialized in Pediatrics. In the end it was decided the best outcome for me would be surgery. Now folks this was NOT laproscopic!! It was the full open surgery. It was the only option in 1976. They were correct. It was the correct thing for me. I am now 50 and I have lived a full life, been a missionary, lived around the world and I am still going!! Its not just that the surgery is a easy option, it is the best option for most people!! Now it can be done laproscopiclly and I just read the other day they are now doing myotomies through the endoscope!! You people got it easy. There is really no reason to put off surgery, especially with a young person. BTW, My mother held the doctor to his words even though we had insurance. Blessings, JC -------------------------------- www.healingcommunities.org Cool people with Achalasia http://www.facebook.com/home.php?sk=group_200707803300303 & ap=1 > > > > > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one >balloon treatment then we had the surgery. She was good for 9 mos and started >have trouble again this past Dec. Since Jan we have had 2 balloon treatments and >she said neither of them have worked. > > > > She is now just turned 14 and I try to talk to her about the disease and >how she will need to manage it as it will never go away. She has it in her head >she needs another surgery...I talked to her gastro doc and he did discuss her >case with the surgeon and was told surgery would be a last resort as it would be >hard on her. She being 14 is not the easiest to speak with right now but her >anger at the disease is playing a part in this. How should I approach her with >some coping skills and the reality of how she will need to deal with it. >Medically I put it in the hands of her docs but psychologically how do I >approach it. > > > Thanks for your help. > > > Maureen Young > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Mike wrote: > > I just called up my insurance and have been approved to go to #1 rated > gastro hospital according to us news and world...yeah!!! > Hopefully this will not be an issue but you may want to check on the Usual, Customary and Reasonable (UCR) charges policy of your insurance and the hospital. Ask both if they have any idea about how charges between them have gone in the past. Better to have warning ahead of time. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 Good luck to you.......I went to Dr. Katzka at Mayo Clinic in Rochester. He is wonderful, very patient and explains everything very clearly. This is a wonderful clinic, well organized and accommodating to all patients. Keep up updated on your progress. Barb > > > > > > > > After 5 mos of testing my daughter was diagnosed with Achalasia and had one > >balloon treatment then we had the surgery. She was good for 9 mos and started > >have trouble again this past Dec. Since Jan we have had 2 balloon treatments and > >she said neither of them have worked. > > > > > > She is now just turned 14 and I try to talk to her about the disease and > >how she will need to manage it as it will never go away. She has it in her head > >she needs another surgery...I talked to her gastro doc and he did discuss her > >case with the surgeon and was told surgery would be a last resort as it would be > >hard on her. She being 14 is not the easiest to speak with right now but her > >anger at the disease is playing a part in this. How should I approach her with > >some coping skills and the reality of how she will need to deal with it. > >Medically I put it in the hands of her docs but psychologically how do I > >approach it. > > > > Thanks for your help. > > > > Maureen Young > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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