Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 Thats how I feel!!! The specialist said he can have multiple dilations as long as he can handle them. He has so much scar tissue that when he has a Heller it takes alot longer so my nerves be on edge. I would like to know what the record is also. ________________________________ From: lindsayaus <lindsay_kite@...> achalasia Sent: Thursday, March 1, 2012 12:04 AM Subject: Re: My son has achalasia  OMG....19 dilations! I didn't know they could do that many. Anyone know what the record number is? > > Hello everyone. > > On this day I would like to thank the group for all of the support given to me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of 10. He has had one Heller and 19 dilations. This summer he will have another Heller to make it through his senior year. I usually read the post from my email daily but I do not respond I like to know whats going on and keep up with the new information. > Take care, > > Monicqua- Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 I just posted last week about my 15 y/o is dd having another dilatation coming up. My fear is the weakness and possible tear of the esophagus . No one has really answered me but kids with A are unusual. I think I will go forward with the dilatation as she needs to eat and see if we should get the HM repaired. So the amount your son has had is interesting. Glad to hear he is doing great! From: lindsayaus <lindsay_kite@...> Subject: Re: My son has achalasia achalasia Date: Thursday, March 1, 2012, 12:04 AM Â OMG....19 dilations! I didn't know they could do that many. Anyone know what the record number is? > > Hello everyone. > > On this day I would like to thank the group for all of the support given to me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of 10. He has had one Heller and 19 dilations. This summer he will have another Heller to make it through his senior year. I usually read the post from my email daily but I do not respond I like to know whats going on and keep up with the new information. > Take care, > > Monicqua- Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Mike wrote: > > I just posted last week about my 15 y/o is dd having another > dilatation coming up. My fear is the weakness and possible tear of the > esophagus . No one has really answered me but kids with A are unusual. > I think I will go forward with the dilatation as she needs to eat and > see if we should get the HM repaired. So the amount your son has had > is interesting. Glad to hear he is doing great! > I would be interested in what Dr.Patti had to say when you talk to him. Did he think dilatations every three months was good? Did he think surgery would help and reduce the number of dilatation. Is all this time when needing dilatation taking a toll on the esophagus? As you said children can be different. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 The unofficial record is held by a woman in Australia, who has probably passed 50 by now. She shows up here once in a while to say hi. She takes it all in stride. Sent from my Verizon Wireless Phone ----- Reply message ----- From: " lindsayaus " <lindsay_kite@...> Date: Thu, Mar 1, 2012 1:04 am Subject: Re: My son has achalasia <achalasia > OMG....19 dilations! I didn't know they could do that many. Anyone know what the record number is? > > Hello everyone. > > On this day I would like to thank the group for all of the support given to me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of 10. He has had one Heller and 19 dilations. This summer he will have another Heller to make it through his senior year. I usually read the post from my email daily but I do not respond I like to know whats going on and keep up with the new information. > Take care, > > Monicqua- Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 When I had our appt. in June Dr. Patti he specifically said not very many docs are proficient in dilatation's and referred us to Philly. We did call but the doc was moving his practice to Florida. He did say he could repair the HM so after this dilatation we will be looking into it. Our Childrens Hospital said they would do everything in their power to not do surgery again. That is not comforting to me as obviously it has failed that she has had 4 dilitations done since the HM 2 yrs ago. > > I just posted last week about my 15 y/o is dd having another > dilatation coming up. My fear is the weakness and possible tear of the > esophagus . No one has really answered me but kids with A are unusual. > I think I will go forward with the dilatation as she needs to eat and > see if we should get the HM repaired. So the amount your son has had > is interesting. Glad to hear he is doing great! > I would be interested in what Dr.Patti had to say when you talk to him. Did he think dilatations every three months was good? Did he think surgery would help and reduce the number of dilatation. Is all this time when needing dilatation taking a toll on the esophagus? As you said children can be different. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Mike wrote: > > When I had our appt. in June Dr. Patti he specifically said not very > many docs are proficient in dilatation's and referred us to Philly. > When I see these dilatations every 3 or 4 months I wonder if they are using a large enough dilator. With children it would be temping, or more temping, to use one too small. Or, it just may be that their bodies repair the effects of dilatation. A lot of doctors believe, and have published, that myotomy is the way to go with children. There are others however, as there are alway others when it comes to achalasia on every issue, that say dilatation for children is the way to go. You would think that the ones that publish in favor of dilatation in children did better than needing to redo it every 3 - 4 months. You have tried both. The doubts must be terrible. I would be going with whoever has the most experience. I wish we had more input in this support group from parents and their children. Some seem to have left for facebook. Kind of a shame. As I understand it facebook can delete old posts making it hard to find what others have said in the past. One nice thing about this site is that you can search through years of messages. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 What a horrible thing to deal with at such a young age. Perhaps kids are different and can tolerate more dilitations? Have they considered botox? Kim ________________________________ From: Mike Young <mmyoung5758@...> achalasia Sent: Thursday, March 1, 2012 7:23 AM Subject: Re: Re: My son has achalasia  I just posted last week about my 15 y/o is dd having another dilatation coming up. My fear is the weakness and possible tear of the esophagus . No one has really answered me but kids with A are unusual. I think I will go forward with the dilatation as she needs to eat and see if we should get the HM repaired. So the amount your son has had is interesting. Glad to hear he is doing great! From: lindsayaus <lindsay_kite@...> Subject: Re: My son has achalasia achalasia Date: Thursday, March 1, 2012, 12:04 AM  OMG....19 dilations! I didn't know they could do that many. Anyone know what the record number is? > > Hello everyone. > > On this day I would like to thank the group for all of the support given to me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of 10. He has had one Heller and 19 dilations. This summer he will have another Heller to make it through his senior year. I usually read the post from my email daily but I do not respond I like to know whats going on and keep up with the new information. > Take care, > > Monicqua- Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 I had replied a few times. My daughter, Leigh, was diagnosed 7 years ago at 11. We could not do anymore dialations because narrowing was not the problem. Spasms were. Her heller was intact the fundoplication still in place. But the nerves up and down the esophagus were misfiring, sending her into spasms continuously. Doctors refused to do any more dialations because her esophagus had become fragile and the risk of a tear was great. We took her to university of south Florida, swallow center. All they could offer us was more of the same medications thar hadn't worked. We went to see dr rosemurgy at Tampa general who had developed a procedure to remove the esophagus, pulling her stomach up and turning it into a conduit. She was in the hospital 3 weeks, a difficult recovery. But now she is in college and feels hopeful for the future. She has some digestive issues, gluten intolerance, lactose intolerance. But she has gained weight and is not in constant pain anymore. I understand your fear and concern. I have lived with it for years. We are never quite sure if we have made the right decision, and our children's lives depend on our research and decisions. If you would like to talk with another achalasia mom with battle scars feel free to call. 5309410706. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2012 Report Share Posted March 6, 2012 I cannot count the number of dilations I have had.  I was diagnoised in 1978 and had the first pneumatic balloon dilation in May of 1979 with 2 or 3 more pheumatic dilations to follow to fully open the LES. From that point I had about 1 per year for the next 5 or so years and then it became to be 2 each year and then it became to be 3 per year and when it was reaching 4 per year in 1999 I had my HM without the wrap and was good for couple of years and now have about 1 per year and this past year it was 2 per year. Seems like there is a pattern to this. There are more than one type of balloons as far as my doctor has told me. I will not ever have the pneumatic balloon dilation again.   I think it depends to the degree of the disease you have. I seem to have the vigorous version which means lots of spasms. My e does seem to open and close but very spastically.   Good luck.  SharonCline    From: lindsayaus <lindsay_kite@...> Subject: Re: My son has achalasia achalasia Date: Thursday, March 1, 2012, 12:04 AM  OMG....19 dilations! I didn't know they could do that many. Anyone know what the record number is? > > Hello everyone. > > On this day I would like to thank the group for all of the support given to me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of 10. He has had one Heller and 19 dilations. This summer he will have another Heller to make it through his senior year. I usually read the post from my email daily but I do not respond I like to know whats going on and keep up with the new information. > Take care, > > Monicqua- Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 That is good to hear she is doing well now! ________________________________ From: Helene Stovall <stovall.h@...> " achalasia " <achalasia > Sent: Thursday, March 1, 2012 11:37 AM Subject: Re: Re: My son has achalasia  I had replied a few times. My daughter, Leigh, was diagnosed 7 years ago at 11. We could not do anymore dialations because narrowing was not the problem. Spasms were. Her heller was intact the fundoplication still in place. But the nerves up and down the esophagus were misfiring, sending her into spasms continuously. Doctors refused to do any more dialations because her esophagus had become fragile and the risk of a tear was great. We took her to university of south Florida, swallow center. All they could offer us was more of the same medications thar hadn't worked. We went to see dr rosemurgy at Tampa general who had developed a procedure to remove the esophagus, pulling her stomach up and turning it into a conduit. She was in the hospital 3 weeks, a difficult recovery. But now she is in college and feels hopeful for the future. She has some digestive issues, gluten intolerance, lactose intolerance. But she has gained weight and is not in constant pain anymore. I understand your fear and concern. I have lived with it for years. We are never quite sure if we have made the right decision, and our children's lives depend on our research and decisions. If you would like to talk with another achalasia mom with battle scars feel free to call. 5309410706. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.