Guest guest Posted June 23, 2011 Report Share Posted June 23, 2011 great to hear from Patty.. please post her doc's info on the surgeons info page. Todd... did you ever contact Pellegrini or Patti?? Carolyn mom of Cameron myo'd and fundo'd in 05 From: pATTY cHILDERS <pacjm20@...> Subject: Re: Re: 17 year old needs esophagectomy achalasia Date: Thursday, June 23, 2011, 11:01 AM  Hello Todd, I have not revisited this group in several years, but let me share my daughters story with you. She just turned 18 in March, and she has been 5 years post Myotomy surgery this week. When she was diagnosed with A, she lost 50 lbs, litteraly over nite almost. We initially had botox injections which helped right away, but her gastro Dr, said she would probably have to have them every 3 months, well at that time that didn't sound like fun for any one especially a 13 yr old. So after much research which included this Group, we opted for the Myotomy. Dr Rosemurgy in Tampa, FL was her surgeon, he and his team are absolutely out of this world. has put back on all the weight she lost and them some. The two things she continues to suffer from are Esophogeal spasms, and the Dumping syndrome. The Dumping syndrome basically can be controlled by is she chooses, what seems to make her react is a high amount of sugar intake, so 1 piece of candy or 1 cookie is more than she should have, so if she has more, well needless to say I don't have to deal with it she does. It took me a while to stop nagging her about it, but she's the one that learned just how much is too much. Ok, the one that has really caused her the most grief is NCCP, we were told that with time they would minimize. Well let me tell you, like children NCCP's have a mind of their own. LOL, can go for days/weeks perfectly fine. Then BAAM, she's attacked if you will, sometimes it's just 1 and their gone, sometimes their can be several anytime of the day or night, and then other times she can have them all day/night every 15 minutes, which really sucks, cause she can't concentrate in school having heart attack like chest pains. I will tell you though what works to subside her pain is usually drinking cold milk. Which as you read a lot of the post's here that's definately not usually the norm, but then again we are talking about Achalasia, which is far from normal. She has tried prilosec, nitroquick and warm liquids and none of these work for her. Over the years she has not always had access to cold milk, and has tried other beverages, like water, tea, soda or whatever is available. They don't always work, but then again sometimes they do. Bottom line Todd, I know you hate seeing your child go thru this, trust me I'm living it everyday like you, I don't really know a whole lot about esophagectomy's, but from what I'm reading from the other posts, I would really do my homework and make sure this is a step you want to take. I know it's tough, but hang in there, I'm hoping and praying that my will never have to have another procedure or surgery ever again for this disease/disorder, but at least we have this group to help get us all educated, including the Medical personal that seriously have no clue. I apologize for my rambling, but this is a subject that I am very passionate about in helping the world get educated on, so best of luck to your family. Patty ________________________________ From: <vickilynne1@...> achalasia Sent: Fri, June 10, 2011 10:13:13 AM Subject: Re: 17 year old needs esophagectomy  Hi Todd, As the mother of an 18 year old with Achalasia, my heart goes out to you. On the topic of her pain, it sounds like she's having esophageal spasms, which can be unbearable. Does she have anything to help with the pain, like nifedipine? Just curious. You can look through previous posts to see what other people do to help with them. Also, if you seek a 2nd opinion, I highly recommend Dr. Rice at The Cleveland Clinic. Not a peds surgeon, but did my son's myotomy when he was 14. Vicki > > > > Dear Todd, > > > > I'm so sorry to hear that your daughter is going through this at such a young > > > age. It would help to know who the surgeon was that did the myotomy? If >it was > > > not done right, that could be why this has happened? Having an ectomy is > > serious, make sure that you get to the best of the best surgeon and/or second > > > opinion, maybe they can save her esophagus for awhile longer. I have lived >with > > > this disease for over 23 years, I know it's a rough road. Please give us >more > > > info and we can all put our heads together and help you sort this out. We >are > > > not doctors, so we can only offer our own advice, but many here are very > > knowledgeable. > > > > > > Julee So. Calif. > > > > > > > > > > ________________________________ > > From: husky112 <husky112@> > > achalasia > > Sent: Thu, June 9, 2011 2:15:27 PM > > Subject: 17 year old needs esophagectomy > > > >  > > > > Our 17 year old daughter had the usual symptoms of achalasia for about 2.5 >years > > > before she was diagnosed with achalasia in Dec. 09. Her first treatment was a > > > dilation then in March of 2010 she had a myotomy. From our research and > > expectations from her doctors we assumed the myotomy would last 5 - 15 years. > > > For the first 2-3 months after the myotomy she was doing fine she could >swallow > > > again and had gained 12 lbs. Then the typical symptoms started to return, she > > > has had 3 more dilations which resulted in a small tear in the esophagus. Her > > > condition has regressed and she went to her surgeon 3 days ago to discuss a > > second myotomy, her surgeon is now convinced that the only option that will >help > > > her situation is an esophagectomy! We knew eventually this may need to be >done > > > but not so soon. She is a very positive kid and has handled all the pain, > > treatments, tests and surgery like a trooper. Sometimes I wonder where she >gets > > > her strength. In the past 1.5 years since her diagnosis we have been focused >on > > > her diet and learning about the dilations and myotomy. We have not done much > > research on the ectomy as we thought we would not have to face that until >much > > > later. Her surgeon can perform the ectomy one week from now and its hard to >get > > > our heads wrapped around it since we dont feel we know all the options. She >is a > > > very active athletic teenager with a dream of playing university level female > > > hockey, a dream that is within reach for her as she has the skill plus a >passion > > > unmatched by others. Does living with the ectomy normally inhibit intense > > physical activity like sports? We know this is a big surgery with a difficult > > > recovery period, but it looks like there are very limited options. Any advice >or > > > support is greatly appreciated. > > > > Todd > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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