Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Thank you for the info on Chiari malformation and the web sites. I am grateful that we found this before Crystal's surgery, Crystal's curves at 46 degrees at the top and 43 degrees at the bottom don't usually require surgery according to the orthopedic surgeon. He was going to do the surgery mainly because of her everyday chronic pain that was disrupting her life then she began to have the severe acute pain that could not be explained. It was getting more and more frustrating to hear doctors say she should not be hurting, when she was hurting. Now that we have found out what is causing the pain we may not have to have the scoliosis surgery, for now, unless her curves get worse, which they have every Xray. But the orthopedic surgeon saids she isn't going to grow much more according to her long bone Xrays. which is a shock since she is only 4'11 " and everyone in our family is over 6 feet tall. I was told that if she wasn't growing anymore the curve should stabilize, does anyone know how true this is ? to me it seems she could have problems later in life? Thanks again for everyones help Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Sure Barbara, can email me at cnwill1231@... The first parent I contacted with this condition lived in the UK. Her son was just about to have the BMT with a sibling donor. Last I hear he made a full recovery. That was 3 years ago. My husband and I tried IVF to have a matched sibling, however the procedure was unsuccessful and we ran out of money to try again. We are from the bay area as well which is why we have been seen by Dr. at Stanford. He is a very nice man. We have good nurses and doctors here in Washington too and one day soon I would like to try the IVF again. had done so well on the IVIG that sometimes we forget he even has a problem, but time is not on our side. I would love to talk to , to let her know that while this condition carries serious implications, it is bearable and - at least for us - it could be a lot worse. Take care, Crystal, 's mom X-linked H-IGM Syndrome > > Crystal, do you have an email address that I could give my daughter? I think it would be very beneficial > for her to have contact with another mother whose son has Hyper IgM since you seem to be following the > same course we are following. Like you, there is no sibling to do a bone marrow transplant and my research > has not been very encouraging on the matter because BMT's for Hyper IgM seems to be so experimental at > this point. I do know USC has done one on an 11 year old boy that seems to be doing fine.We are > considering moving to California within the next couple of years to be closer to either Stanford or USC > but have not made any permanent decisions about it. ly, being a native to the bay area, it wouldn't take much > to convince me to move back to palm trees and the ocean and get out of the snow and cold temps of Colorado. : ) > > I see so much loneliness in my daughter sometimes because I think she believes she is in this all alone (even though > her husband is a good guy) and I would really think it be so much help for her to have another mother to > talk to. Please let me know if an email address is an option. > > Barbara - grandmother to Ethan, 19 months old, X-linked Hyper IgM > mother to , age 25, > mother to , 17, mild CREST syndrome in remission > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Hi Crystal, I was wondering how it went at the pdoc? I wish I could say the W gave me the motivation you are seeking but it hasn't solved all those problems for me. I am in the same boat as you with the house. It has helped me get thru my workday though...so maybe it will help you with your motivation toward the house. It is my understanding that only high doses may cause seizures so don't worry too much about that. If you decide to try it, and it makes you feel too anxious or hyper, you can always go off it. Let me know! > > Thanks for this info . The reason I am seriously considering the Wellbutrin is for lack of motivation myself. My house is a mess, I can't get myself to stay on task with anything at all, I'm always feeling tired and sluggish, and something has to give! I just don't want the W to cause an increase in my blood pressure, or make me too hyper and anxious or cause a seizure or anything. I hate meds, and this is really hard for me, but I can't go on like this. My poor kids want to invite friends over the house and I am too embarrassed! I know kids don't really care, but what if the parents come in and all. I can't even have my sister over half the time because of the embarrassment, even though she used to be quite messy herself. She is now the Queen of Clean because she married a hubby who won't take any less. Anyway, I see my psydoc on Friday and I'll discuss it more with him then. Thanks again !! I'm off to try to do something around here which I've been procrastinating about, just don't feel the get up and go, someone needs to light a fire under my rear end, LOL! :-D > > Hugs, > Crystal > > > Hi Crystal, > It is so hard to tell....who knows what is from the other meds and what could be from the Wellbutrin. > > I believe it definitely perks me up at times...but not in a negative way...because I need that. I usually am dragging myself thru the day. I have had to limit my caffeine (sp?) during the day to no more than three caf. drinks, or I really get hyper and dizzy. > > I have not had the increased anxiety that it is sometimes said to produce -thank God, because that is a problem for me. It has not affected that at all. I do take the last dose at lunchtime because I was warned by my Dr. that it could interfear with sleep. > > When I first started it I lost 5lbs too, but thanks to Paxil I put it back on pretty quickly and then some. > > Hope that helped! > > > >>Hi , > > May I ask, have you had any side effects with the > Wellbutrin? > > Crystal > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 Crystal- I am so sorry about your jerky husband. I was in shock when I was reading it becuz it sounds alot like my life. My husband and I were married a year and a week when I got sick. I was in the hospital in ICU for 2 months, almost died. We have a 2 year old son which makes things a bit harder, But he had left me twice, The first time I was in my wheelchair, I thought that, that was it. That is/was the lowest but after a couple of months we got back together. I couldn't help it I felt worthless and unwanted. Then we just split up again in April and I thought for sure that that would be the end but he did a total 180 and we are getting along so well, he is taking care of me and my son very well. Lets hope that it stays that way. My whole family and friends probably think that I am nuts. But of course they won't say anything cuz they don't want to upset me or make me stressed. I just really think that we had a rough start and if we could just start over it would work. We love each other very much, but we are frustrated with this disease to say the least. It had robbed me of my life. But it is something I/we have to live with for the rest of our lives. We need to make the best of it. Anyway I wanted to tell you Hi and that you and I have alittle more in common then the dragon. I am glad that your parents are taking care of you. My parents are great also. They lived with me for the 1st year I was out of the hospital. To help with my son and to take care of my of course. I was in a wheelchair for a year. Anyway if you ever need to talk. I would love to hear from you. Take care and keep your head up. Love and support, Keri in CACrystal Newell <c_a_newell@...> wrote: Hello, my name is Crystal. I have just this month been diagnosed with Stills disease. My onset was in November of last year. I"m currently taking Methatrexate, Prednisone, Folic Acid, Temazepam, Paxil, Fosamax, Protonix, Iron, Vitamin C, Melatonin, and Fiber. A lovely little cocktail in the evening. =) It seems to be helping though, so I'm not complaining.When my onset started, I was married, living in an appartment, and had a job. After about the frst month of so much pain, and not being able to do anything, my husband said he didn't want to take care of me anymore, I lost my job, and fortunately, was 'kidnapped' by my mom. She took me back to live with her and my dad, and they have been wonderful to me. My dad has made so many little modifications around the house, from elevating the coutch, to making extra steps so that I can move easier from one room to another. I have been so grateful to them. And by the way, I just got the confirmation that my husband has been served his divorce papers. =)So, right now, I'm just starting on the methatrexate, and I'm sure there will be many ups and downs before this dragon is under control. But it has given me a lot of opertunity for personal growth, and reflection. And my outlook right now, is to take the good days and do what I can with them, for tomorrow may be a bad day.Crystal Newell_________________________________________________________________Add MSN 8 Internet Software to your current Internet access and enjoy patented spam control and more. Get two months FREE! http://join.msn.com/?page=dept/byoa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Thank you for your response, it is good to know that you had no regrets. I got a little nervous today when my doctor called to tell me they had scheduled me for my botox injenction and I hadn't even made up my mind yet which treatment I was going to use. The more I read, I feel that the surgery i sthe best route...however, any suggestions for GI's would be helpful. I live in the southern tier or NYS and there are not many options here. I have checked with Strong Memorial Hospital in Rochester, Crouse Irving in Syracuse & Packard in Sayre, PA, without much success. If anyone has any positive suggestions for physicians...I would truly appreciate them. Thank you all. It is very heartening to read all of the posts and know that eventually, I will be able to eat again. Crystal Good Luck to everyone!!! > Hi Crystal, > > I was diagnosed January of 2004. I was given the usual 3 options - Botox, > Dilations, or the Lap Heller Myotomy. I chose the surgery because I was > told that it is supposed to be the longest " fix " for achalasia. I had > surgery in Sept of 2004 and have had no regrets. Swallowing is fairly close > to normal, I just have to make sure I have water on hand for some foods, > which is good for us anyway!! If you have any other questions, feel free to > ask, that's what we're here for! :-) Where are you from, maybe someone can > recommend a GI/surgeon to you! > > Hugs, > > in BC > > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf > Of Crystal > Sent: September 22, 2005 12:15 PM > achalasia > Subject: Just Diagnosed > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > suffering for well over 6 months with not being able to eat. I am > worried about options and choices. I have yet to meet with the > gastroenterologist about the options, but as you all can guess, I have > been very busy reading up on this. Any help in the decision making > process will be much appreciated. I am only 38 years old and not one > to " stomach " being sick!!! All the options I have read about seem to > have down sides to them. Is having the surgery the best way to avoid > long term problems? Thank you in advance for any insight from those > who know best! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Hi Crystal, You’re very welcome, that’s what we’re here for, right! I can’t believe that your GI scheduled you in when you hadn’t even decided yet. Are you planning on going ahead with the botox…or…? I might be wrong here, but I do think that you have a few good options if you are in or near NY. I know I have heard of at least 4 around you. Katz, Jaffin (or is he just a GI?), Divino, Salky, and then a few others in PA that Cindi has good words for. Just some things to look into, but I’m sure some NYers will pop in here too! Hugs, in BC (too far from NY to give an opinion I guess) From: achalasia [mailto:achalasia ] On Behalf Of Crystal Sent: September 26, 2005 6:27 PM achalasia Subject: Re: Crystal Thank you for your response, it is good to know that you had no regrets. I got a little nervous today when my doctor called to tell me they had scheduled me for my botox injenction and I hadn't even made up my mind yet which treatment I was going to use. The more I read, I feel that the surgery i sthe best route...however, any suggestions for GI's would be helpful. I live in the southern tier or NYS and there are not many options here. I have checked with Strong Memorial Hospital in Rochester, Crouse Irving in Syracuse & Packard in Sayre, PA, without much success. If anyone has any positive suggestions for physicians...I would truly appreciate them. Thank you all. It is very heartening to read all of the posts and know that eventually, I will be able to eat again. Crystal Good Luck to everyone!!! > Hi Crystal, > > I was diagnosed January of 2004. I was given the usual 3 options - Botox, > Dilations, or the Lap Heller Myotomy. I chose the surgery because I was > told that it is supposed to be the longest " fix " for achalasia. I had > surgery in Sept of 2004 and have had no regrets. Swallowing is fairly close > to normal, I just have to make sure I have water on hand for some foods, > which is good for us anyway!! If you have any other questions, feel free to > ask, that's what we're here for! :-) Where are you from, maybe someone can > recommend a GI/surgeon to you! > > Hugs, > > in BC > > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf > Of Crystal > Sent: September 22, 2005 12:15 PM > achalasia > Subject: Just Diagnosed > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > suffering for well over 6 months with not being able to eat. I am > worried about options and choices. I have yet to meet with the > gastroenterologist about the options, but as you all can guess, I have > been very busy reading up on this. Any help in the decision making > process will be much appreciated. I am only 38 years old and not one > to " stomach " being sick!!! All the options I have read about seem to > have down sides to them. Is having the surgery the best way to avoid > long term problems? Thank you in advance for any insight from those > who know best! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 I had several rounds of the Botox and when I finally did have the Lapro Hellers I think it did hinder the outcome. I just had a redo open Heller's about four months ago. I would say try and advoid botox that way you lessen your chances of going back for a redo operation. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Dear Crystal, Stop stop...I can't keep my fingers from typing. Forget the 80/20 bantering, but I don't think there is a doctor that any of us in the group goes to that would recommend botox for a basic achalasia patient. It is generally accepted by all (okay maybe there is an odd duck out there, but I don't know which one) that would recommend botox. Unless you are complicated with other severe health problems or have something else besides achalasia. Please reconsider. Call or email ANY of the doctors on the list and I'd bet you they all advise you to stop. You may have to travel a little but it will be worth it. Please others, help me here so I don't look like a raving maniac. Check out this website: My favorite, it has articles from all the medical or 80% of them, summarized. Type in achalasia and botox and see what comes up. Be careful of the dates of the articles. Botox was thought to be a good solution for us in the late 90's and 2000 or so, but it didn't work out. There are thousands of articles, updated daily about achalasia. Type in the teaching hospitals at all close to you and look up the gi department, minimally invasive departments etc. Here's the website: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed Stay up all night or skip work tomorrow and you will know more about achalasia than most any gi you run into. There are discussions about dilatations vs. surgery and then the type of surgery and type of wrap or even if there is a wrap. Any choice you choose there is fine with most of us, even me. Whatever choice you make in those areas I'll support but botox isn't on my happy list. Raving Sandy in So Cal > > Hi Crystal, > > > > I was diagnosed January of 2004. I was given the usual 3 options - > Botox, > > Dilations, or the Lap Heller Myotomy. I chose the surgery because > I was > > told that it is supposed to be the longest " fix " for achalasia. I > had > > surgery in Sept of 2004 and have had no regrets. Swallowing is > fairly close > > to normal, I just have to make sure I have water on hand for some > foods, > > which is good for us anyway!! If you have any other questions, > feel free to > > ask, that's what we're here for! :-) Where are you from, maybe > someone can > > recommend a GI/surgeon to you! > > > > Hugs, > > > > in BC > > > > > > > > _____ > > > > From: achalasia [mailto:achalasia ] > On Behalf > > Of Crystal > > Sent: September 22, 2005 12:15 PM > > achalasia > > Subject: Just Diagnosed > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > suffering for well over 6 months with not being able to eat. I am > > worried about options and choices. I have yet to meet with the > > gastroenterologist about the options, but as you all can guess, I > have > > been very busy reading up on this. Any help in the decision > making > > process will be much appreciated. I am only 38 years old and not > one > > to " stomach " being sick!!! All the options I have read about seem > to > > have down sides to them. Is having the surgery the best way to > avoid > > long term problems? Thank you in advance for any insight from > those > > who know best! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Sandy is wise -- be careful about making choices about botox -- literature talks about scar tissue that affects the outcome of surgery if you need it in the future. It is better to make a careful decision after reading the research. You won't be sorry. > > > Hi Crystal, > > > > > > I was diagnosed January of 2004. I was given the usual 3 > options - > > Botox, > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > because > > I was > > > told that it is supposed to be the longest " fix " for achalasia. > I > > had > > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > fairly close > > > to normal, I just have to make sure I have water on hand for some > > foods, > > > which is good for us anyway!! If you have any other questions, > > feel free to > > > ask, that's what we're here for! :-) Where are you from, maybe > > someone can > > > recommend a GI/surgeon to you! > > > > > > Hugs, > > > > > > in BC > > > > > > > > > > > > _____ > > > > > > From: achalasia > [mailto:achalasia ] > > On Behalf > > > Of Crystal > > > Sent: September 22, 2005 12:15 PM > > > achalasia > > > Subject: Just Diagnosed > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > > suffering for well over 6 months with not being able to eat. I > am > > > worried about options and choices. I have yet to meet with the > > > gastroenterologist about the options, but as you all can guess, I > > have > > > been very busy reading up on this. Any help in the decision > > making > > > process will be much appreciated. I am only 38 years old and not > > one > > > to " stomach " being sick!!! All the options I have read about > seem > > to > > > have down sides to them. Is having the surgery the best way to > > avoid > > > long term problems? Thank you in advance for any insight from > > those > > > who know best! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 It is very frustrating trying to find a good doctor. I think that is one of the scariest parts about this – is being confident that you are making the right decision with the right doctor. I keep hearing about the Cleveland clinic, and I believe from my area (around Binghamton, NY) it is estimated to be a 5 ½ - 6 hour drive, which really isn’t too bad at all. Then there’s the next issue – insurance coverage. The surgeon I just had my consult with, Dr. s, is at Strong in Rochester, although he has only been there for about a year. He used to be at USC in CA and comes with great reviews – I believe he was quite a bigwig out there. From what I have heard, quite a few people were very upset when he left to come east. That being said, I have only had one consultation with him, and while I liked him (gut instinct), I have a ton more questions for him. As for my insurance ironically Dr. s does fall into my coverage as a participating doctor. I’m not exactly sure how to go about getting approved to see someone else though, but I am going to call my insurance company and also set up an appointment with my primary doctor to talk about this, along with his thoughts on surgery. Just know that you are not alone, Crystal. We are all here for each other, and although I have just recently started posting (last week, actually), I have already found this group to be extremely supportive. Hang in there and let’s keep in touch. in NY From: achalasia [mailto:achalasia ] On Behalf Of Cindi Wilmot Sent: Tuesday, September 27, 2005 7:26 AM achalasia Subject: Crystal Hi Crystal. I grew up near Buffalo; my husband is from Syracuse and we currently live in South-Central PA. I'm very familiar with NY and still miss it. We visit family often (near Syracuse and Olean) and I'd love to get together with you when I'm up there sometime. Tracey is new on the board & lives near Binghamton and has had your frustration with finding a doc. If you are in south western NY, I would recommend checking out the Cleveland Clinic. Since you have been to Roch/Syr and not Buffalo, my guess is that you are further east. Does Cornell have a teaching hospital? Of course Strong in Rochester is one of the best teaching hospitals in the state, but not known for treating Achalasia. I went to Hershey Medical Center in PA. My surgeon was Randy Haluck and I think he is GREAT. He deals a good bit with Dr. Ouyang (oo-ang) at Hershey, whom he says is the best GI in the state. Maybe you and should hook up, carpool down here and visit these guys together....I'll come meet you and take you on the chocolate factory tour!!! Let me know if you want Dr. Haluck's email address. And I'd love to know what town you are in (you can email me off site - cindiscandles@...) Cindi in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 I live in Horseheads...we are neighbors. This is so cool that there is someone nearby. So far I am very nervous about any doctors in our area. It seems such a foreign subject that I don't know where to look! Good to have you close! Crystal for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 , your response is similar to many I've read. That is too bad that the botox was not successful and that it might of hindered the Hellers....I hope all goes well with your redo. Crystalm4myjn5@... wrote: I had several rounds of the Botox and when I finally did have the Lapro Hellers I think it did hinder the outcome. I just had a redo open Heller's about four months ago. I would say try and advoid botox that way you lessen your chances of going back for a redo operation. in Suffolk__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 I think everyone here is wise...I am definately avoiding the botox. Just the thought of injecting a true poison into my system gives me the creeps! I sooo appreciate all the advise, it helps make these decisions especially when it feels like no one around here actually even believes that I have a problem, or else, somebody else has the same thing....then they describe an older person with dyspasia. Not quite. I wish it were that simple. Thank you everyone for everything, keep it coming I am learning so much and feel so much better reading these posts! Hugs, CrystalPeggy Cordero <pegster@...> wrote: Sandy is wise -- be careful about making choices about botox -- literature talks about scar tissue that affects the outcome of surgery if you need it in the future. It is better to make a careful decision after reading the research. You won't be sorry.> > > Hi Crystal, > > > > > > I was diagnosed January of 2004. I was given the usual 3 > options -> > Botox,> > > Dilations, or the Lap Heller Myotomy. I chose the surgery > because > > I was> > > told that it is supposed to be the longest "fix" for achalasia. > I > > had> > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > fairly close> > > to normal, I just have to make sure I have water on hand for some > > foods,> > > which is good for us anyway!! If you have any other questions, > > feel free to> > > ask, that's what we're here for! :-) Where are you from, maybe > > someone can> > > recommend a GI/surgeon to you!> > > > > > Hugs,> > > > > > in BC> > > > > > > > > > > > _____ > > > > > > From: achalasia > [mailto:achalasia ] > > On Behalf> > > Of Crystal> > > Sent: September 22, 2005 12:15 PM> > > achalasia > > > Subject: Just Diagnosed> > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > > suffering for well over 6 months with not being able to eat. I > am > > > worried about options and choices. I have yet to meet with the > > > gastroenterologist about the options, but as you all can guess, I > > have > > > been very busy reading up on this. Any help in the decision > > making > > > process will be much appreciated. I am only 38 years old and not > > one > > > to "stomach" being sick!!! All the options I have read about > seem > > to > > > have down sides to them. Is having the surgery the best way to > > avoid > > > long term problems? Thank you in advance for any insight from > > those > > > who know best!> > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 -Hi Crystal, Sandy is not raving. I agree with her. I am at the same point as you. Have just been diagnosed as A and botox in Australia is now very rarely used as I can see. From what I have read on this group it is a short term fix. I certainly do not want to unnecessarily pump toxins into my body whenI have multiple medical conditions. My surgeon is not looking at botox as a solution at all. He does not do it any more. My dilation only has lasted me 2 months. I spoke to Dr Bessell yesterday by phone and he is booking me in for the surgery next month. I believe my surgeon is very experienced in this condition and am confident with his knowledge and ability. I also learned this week we have the latest technology for manometry testing here in Australia. The conputer programme for it was made here as well. Hope this is of help. All the best in Australia -- In achalasia , " toomuchclutter " <sandycarroll@c...> wrote: > Dear Crystal, > > Stop stop...I can't keep my fingers from typing. Forget the 80/20 > bantering, but I don't think there is a doctor that any of us in the > group goes to that would recommend botox for a basic achalasia > patient. It is generally accepted by all (okay maybe there is an odd > duck out there, but I don't know which one) that would recommend > botox. Unless you are complicated with other severe health problems > or have something else besides achalasia. Please reconsider. Call > or email ANY of the doctors on the list and I'd bet you they all > advise you to stop. > > You may have to travel a little but it will be worth it. > > Please others, help me here so I don't look like a raving maniac. > > Check out this website: My favorite, it has articles from all the > medical or 80% of them, summarized. Type in achalasia and botox and > see what comes up. Be careful of the dates of the articles. Botox > was thought to be a good solution for us in the late 90's and 2000 or > so, but it didn't work out. There are thousands of articles, updated > daily about achalasia. Type in the teaching hospitals at all close > to you and look up the gi department, minimally invasive departments > etc. > > Here's the website: > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed > > Stay up all night or skip work tomorrow and you will know more about > achalasia than most any gi you run into. > > There are discussions about dilatations vs. surgery and then the type > of surgery and type of wrap or even if there is a wrap. Any choice > you choose there is fine with most of us, even me. Whatever choice > you make in those areas I'll support but botox isn't on my happy list. > > Raving Sandy in So Cal > > > > > > > > Hi Crystal, > > > > > > I was diagnosed January of 2004. I was given the usual 3 > options - > > Botox, > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > because > > I was > > > told that it is supposed to be the longest " fix " for achalasia. > I > > had > > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > fairly close > > > to normal, I just have to make sure I have water on hand for some > > foods, > > > which is good for us anyway!! If you have any other questions, > > feel free to > > > ask, that's what we're here for! :-) Where are you from, maybe > > someone can > > > recommend a GI/surgeon to you! > > > > > > Hugs, > > > > > > in BC > > > > > > > > > > > > _____ > > > > > > From: achalasia > [mailto:achalasia ] > > On Behalf > > > Of Crystal > > > Sent: September 22, 2005 12:15 PM > > > achalasia > > > Subject: Just Diagnosed > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > > suffering for well over 6 months with not being able to eat. I > am > > > worried about options and choices. I have yet to meet with the > > > gastroenterologist about the options, but as you all can guess, I > > have > > > been very busy reading up on this. Any help in the decision > > making > > > process will be much appreciated. I am only 38 years old and not > > one > > > to " stomach " being sick!!! All the options I have read about > seem > > to > > > have down sides to them. Is having the surgery the best way to > > avoid > > > long term problems? Thank you in advance for any insight from > > those > > > who know best! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Thank you, I've enjoyed reading your posts, you are so positive and help bring us up! I've already connected with one that lives minutes away, well close to an hour, but that is very interesting! I have decided against the botox for sure! Thank you! CrystalBrent & Bleasdale <abdale@...> wrote: Hi Crystal, You’re very welcome, that’s what we’re here for, right! I can’t believe that your GI scheduled you in when you hadn’t even decided yet. Are you planning on going ahead with the botox…or…? I might be wrong here, but I do think that you have a few good options if you are in or near NY. I know I have heard of at least 4 around you. Katz, Jaffin (or is he just a GI?), Divino, Salky, and then a few others in PA that Cindi has good words for. Just some things to look into, but I’m sure some NYers will pop in here too! Hugs, in BC (too far from NY to give an opinion I guess) From: achalasia [mailto:achalasia ] On Behalf Of CrystalSent: September 26, 2005 6:27 PMachalasia Subject: Re: Crystal Thank you for your response, it is good to know that you had no regrets. I got a little nervous today when my doctor called to tell me they had scheduled me for my botox injenction and I hadn't even made up my mind yet which treatment I was going to use. The more I read, I feel that the surgery i sthe best route...however, any suggestions for GI's would be helpful. I live in the southern tier or NYS and there are not many options here. I have checked with Strong Memorial Hospital in Rochester, Crouse Irving in Syracuse & Packard in Sayre, PA, without much success. If anyone has any positive suggestions for physicians...I would truly appreciate them. Thank you all. It is very heartening to read all of the posts and know that eventually, I will be able to eat again. CrystalGood Luck to everyone!!!> Hi Crystal, > > I was diagnosed January of 2004. I was given the usual 3 options -Botox,> Dilations, or the Lap Heller Myotomy. I chose the surgery because I was> told that it is supposed to be the longest "fix" for achalasia. I had> surgery in Sept of 2004 and have had no regrets. Swallowing is fairly close> to normal, I just have to make sure I have water on hand for some foods,> which is good for us anyway!! If you have any other questions, feel free to> ask, that's what we're here for! :-) Where are you from, maybe someone can> recommend a GI/surgeon to you!> > Hugs,> > in BC> > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf> Of Crystal> Sent: September 22, 2005 12:15 PM> achalasia > Subject: Just Diagnosed> > > > Hi everyone, I was just diagnosed yesterday with achalasia after > suffering for well over 6 months with not being able to eat. I am > worried about options and choices. I have yet to meet with the > gastroenterologist about the options, but as you all can guess, I have > been very busy reading up on this. Any help in the decision making > process will be much appreciated. I am only 38 years old and not one > to "stomach" being sick!!! All the options I have read about seem to > have down sides to them. Is having the surgery the best way to avoid > long term problems? Thank you in advance for any insight from those > who know best!> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Wow, makes me wish I could get to Austrailia! I do not want the botox after reading all the posts. I think my best bet is the surgery! Thank you Crystalykosworks <ykosworks@...> wrote: -Hi Crystal,Sandy is not raving. I agree with her. I am at the same point as you. Have just been diagnosed as A and botox in Australia is now very rarely used as I can see. From what I have read on this group it is a short term fix. I certainly do not want to unnecessarily pump toxins into my body whenI have multiple medical conditions. My surgeon is not looking at botox as a solution at all. He does not do it any more. My dilation only has lasted me 2 months. I spoke to Dr Bessell yesterday by phone and he is booking me in for the surgery next month.I believe my surgeon is very experienced in this condition and am confident with his knowledge and ability.I also learned this week we have the latest technology for manometry testing here in Australia. The conputer programme for it was made here as well.Hope this is of help. All the best in Australia-- In achalasia , "toomuchclutter" <sandycarroll@c...> wrote:> Dear Crystal,> > Stop stop...I can't keep my fingers from typing. Forget the 80/20 > bantering, but I don't think there is a doctor that any of us in the > group goes to that would recommend botox for a basic achalasia > patient. It is generally accepted by all (okay maybe there is an odd > duck out there, but I don't know which one) that would recommend > botox. Unless you are complicated with other severe health problems > or have something else besides achalasia. Please reconsider. Call > or email ANY of the doctors on the list and I'd bet you they all > advise you to stop.> > You may have to travel a little but it will be worth it.> > Please others, help me here so I don't look like a raving maniac. > > Check out this website: My favorite, it has articles from all the > medical or 80% of them, summarized. Type in achalasia and botox and > see what comes up. Be careful of the dates of the articles. Botox > was thought to be a good solution for us in the late 90's and 2000 or > so, but it didn't work out. There are thousands of articles, updated > daily about achalasia. Type in the teaching hospitals at all close > to you and look up the gi department, minimally invasive departments > etc. > > Here's the website: > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed> > Stay up all night or skip work tomorrow and you will know more about > achalasia than most any gi you run into. > > There are discussions about dilatations vs. surgery and then the type > of surgery and type of wrap or even if there is a wrap. Any choice > you choose there is fine with most of us, even me. Whatever choice > you make in those areas I'll support but botox isn't on my happy list.> > Raving Sandy in So Cal> > > > > > > > Hi Crystal, > > > > > > I was diagnosed January of 2004. I was given the usual 3 > options -> > Botox,> > > Dilations, or the Lap Heller Myotomy. I chose the surgery > because > > I was> > > told that it is supposed to be the longest "fix" for achalasia. > I > > had> > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > fairly close> > > to normal, I just have to make sure I have water on hand for some > > foods,> > > which is good for us anyway!! If you have any other questions, > > feel free to> > > ask, that's what we're here for! :-) Where are you from, maybe > > someone can> > > recommend a GI/surgeon to you!> > > > > > Hugs,> > > > > > in BC> > > > > > > > > > > > _____ > > > > > > From: achalasia > [mailto:achalasia ] > > On Behalf> > > Of Crystal> > > Sent: September 22, 2005 12:15 PM> > > achalasia > > > Subject: Just Diagnosed> > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > > suffering for well over 6 months with not being able to eat. I > am > > > worried about options and choices. I have yet to meet with the > > > gastroenterologist about the options, but as you all can guess, I > > have > > > been very busy reading up on this. Any help in the decision > > making > > > process will be much appreciated. I am only 38 years old and not > > one > > > to "stomach" being sick!!! All the options I have read about > seem > > to > > > have down sides to them. Is having the surgery the best way to > > avoid > > > long term problems? Thank you in advance for any insight from > > those > > > who know best!> > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 responded back to me and let me know of a doctor at Strong Memorial. New there, but he sounds promising! I'm gonna have my doctor try to get a referral for me. I live in Horseheads, in between Corning and Elmira. I am glad that I have found people nearby that also are going through this, even though I wish we all met outside of the A group! Not a fun place to have to visit, but everyone makes it soooo much easier! Thank you all!!!! CrystalCindi Wilmot <cindiscandles@...> wrote: Hi Crystal. I grew up near Buffalo; my husband is from Syracuse and we currently live in South-Central PA. I'm very familiar with NY and still miss it. We visit family often (near Syracuse and Olean) and I'd love to get together with you when I'm up there sometime. Tracey is new on the board & lives near Binghamton and has had your frustration with finding a doc. If you are in south western NY, I would recommend checking out the Cleveland Clinic. Since you have been to Roch/Syr and not Buffalo, my guess is that you are further east. Does Cornell have a teaching hospital? Of course Strong in Rochester is one of the best teaching hospitals in the state, but not known for treating Achalasia. I went to Hershey Medical Center in PA. My surgeon was Randy Haluck and I think he is GREAT. He deals a good bit with Dr. Ouyang (oo-ang) at Hershey, whom he says is the best GI in the state. Maybe you and should hook up, carpool down here and visit these guys together....I'll come meet you and take you on the chocolate factory tour!!! Let me know if you want Dr. Haluck's email address. And I'd love to know what town you are in (you can email me off site - cindiscandles@...) Cindi in PA for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Yeah ! Yeah Dr. Australia! > > > > Hi Crystal, > > > > > > > > I was diagnosed January of 2004. I was given the usual 3 > > options - > > > Botox, > > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > > because > > > I was > > > > told that it is supposed to be the longest " fix " for > achalasia. > > I > > > had > > > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > > fairly close > > > > to normal, I just have to make sure I have water on hand for > some > > > foods, > > > > which is good for us anyway!! If you have any other questions, > > > feel free to > > > > ask, that's what we're here for! :-) Where are you from, maybe > > > someone can > > > > recommend a GI/surgeon to you! > > > > > > > > Hugs, > > > > > > > > in BC > > > > > > > > > > > > > > > > _____ > > > > > > > > From: achalasia > > [mailto:achalasia ] > > > On Behalf > > > > Of Crystal > > > > Sent: September 22, 2005 12:15 PM > > > > achalasia > > > > Subject: Just Diagnosed > > > > > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia > after > > > > suffering for well over 6 months with not being able to eat. I > > am > > > > worried about options and choices. I have yet to meet with the > > > > gastroenterologist about the options, but as you all can guess, > I > > > have > > > > been very busy reading up on this. Any help in the decision > > > making > > > > process will be much appreciated. I am only 38 years old and > not > > > one > > > > to " stomach " being sick!!! All the options I have read about > > seem > > > to > > > > have down sides to them. Is having the surgery the best way to > > > avoid > > > > long term problems? Thank you in advance for any insight from > > > those > > > > who know best! > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Thanks. I am doing really well in eating now and for the first time in a really long time I have been able to sleep flat. I have to take Prilosec everyday but that I can do so I can eat...lol THe only other problem I am haveing now is that I had all my wisdom teeth taken out on the 22nd of this month and it appears that one of the disks in the jaw has slipped out. So I can only open my mouth about a half on inch. That makes it hard to stuff food in...lol The oral surgeon also wants me to not eat any tough food either so I am back on a semi soft diet... Oh yeah...lol in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Ok. Sandy, I’m TOTALLY agreeing with you on the botox issue. I was just too scared to say it. Crystal, botox is not used often and really should not be used to treat achalasia, unless you’re not a candidate for dilations/surgery, etc. Botox was more popular years ago, but as time and research goes on, it is found that it is NOT as successful etc as they thought. Botox causes scarring which, as time goes by, can negatively affect the outcome of any future dilations and/or surgery. If your doc was willing to botox without you even saying you WANTED it…you really need to find another GI, IMHO. Sorry if I’m being negative here, but I want you to get the BEST TREATMENT out there available to you. There are other opinions/facts out there, and I’d really love to hear about them…everyone else…what do you guys think re:botox? Good luck Crystal!! BIG hugs, in BC From: achalasia [mailto:achalasia ] On Behalf Of toomuchclutter Sent: September 26, 2005 9:41 PM achalasia Subject: Re: Crystal Dear Crystal, Stop stop...I can't keep my fingers from typing. Forget the 80/20 bantering, but I don't think there is a doctor that any of us in the group goes to that would recommend botox for a basic achalasia patient. It is generally accepted by all (okay maybe there is an odd duck out there, but I don't know which one) that would recommend botox. Unless you are complicated with other severe health problems or have something else besides achalasia. Please reconsider. Call or email ANY of the doctors on the list and I'd bet you they all advise you to stop. You may have to travel a little but it will be worth it. Please others, help me here so I don't look like a raving maniac. Check out this website: My favorite, it has articles from all the medical or 80% of them, summarized. Type in achalasia and botox and see what comes up. Be careful of the dates of the articles. Botox was thought to be a good solution for us in the late 90's and 2000 or so, but it didn't work out. There are thousands of articles, updated daily about achalasia. Type in the teaching hospitals at all close to you and look up the gi department, minimally invasive departments etc. Here's the website: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed Stay up all night or skip work tomorrow and you will know more about achalasia than most any gi you run into. There are discussions about dilatations vs. surgery and then the type of surgery and type of wrap or even if there is a wrap. Any choice you choose there is fine with most of us, even me. Whatever choice you make in those areas I'll support but botox isn't on my happy list. Raving Sandy in So Cal > > Hi Crystal, > > > > I was diagnosed January of 2004. I was given the usual 3 options - > Botox, > > Dilations, or the Lap Heller Myotomy. I chose the surgery because > I was > > told that it is supposed to be the longest " fix " for achalasia. I > had > > surgery in Sept of 2004 and have had no regrets. Swallowing is > fairly close > > to normal, I just have to make sure I have water on hand for some > foods, > > which is good for us anyway!! If you have any other questions, > feel free to > > ask, that's what we're here for! :-) Where are you from, maybe > someone can > > recommend a GI/surgeon to you! > > > > Hugs, > > > > in BC > > > > > > > > _____ > > > > From: achalasia [mailto:achalasia ] > On Behalf > > Of Crystal > > Sent: September 22, 2005 12:15 PM > > achalasia > > Subject: Just Diagnosed > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > suffering for well over 6 months with not being able to eat. I am > > worried about options and choices. I have yet to meet with the > > gastroenterologist about the options, but as you all can guess, I > have > > been very busy reading up on this. Any help in the decision > making > > process will be much appreciated. I am only 38 years old and not > one > > to " stomach " being sick!!! All the options I have read about seem > to > > have down sides to them. Is having the surgery the best way to > avoid > > long term problems? Thank you in advance for any insight from > those > > who know best! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Hi Crystal… Ok, I see this email now. PHEW!! Thank you. HUGE relief off my shoulders JJJ Hugs, From: achalasia [mailto:achalasia ] On Behalf Of Crystal Rodbourn Sent: September 27, 2005 5:19 PM achalasia Subject: Re: Re: Crystal I think everyone here is wise...I am definately avoiding the botox. Just the thought of injecting a true poison into my system gives me the creeps! I sooo appreciate all the advise, it helps make these decisions especially when it feels like no one around here actually even believes that I have a problem, or else, somebody else has the same thing....then they describe an older person with dyspasia. Not quite. I wish it were that simple. Thank you everyone for everything, keep it coming I am learning so much and feel so much better reading these posts! Hugs, Crystal Peggy Cordero <pegster@...> wrote: Sandy is wise -- be careful about making choices about botox -- literature talks about scar tissue that affects the outcome of surgery if you need it in the future. It is better to make a careful decision after reading the research. You won't be sorry. > > > Hi Crystal, > > > > > > I was diagnosed January of 2004. I was given the usual 3 > options - > > Botox, > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > because > > I was > > > told that it is supposed to be the longest " fix " for achalasia. > I > > had > > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > fairly close > > > to normal, I just have to make sure I have water on hand for some > > foods, > > > which is good for us anyway!! If you have any other questions, > > feel free to > > > ask, that's what we're here for! :-) Where are you from, maybe > > someone can > > > recommend a GI/surgeon to you! > > > > > > Hugs, > > > > > > in BC > > > > > > > > > > > > _____ > > > > > > From: achalasia > [mailto:achalasia ] > > On Behalf > > > Of Crystal > > > Sent: September 22, 2005 12:15 PM > > > achalasia > > > Subject: Just Diagnosed > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia after > > > suffering for well over 6 months with not being able to eat. I > am > > > worried about options and choices. I have yet to meet with the > > > gastroenterologist about the options, but as you all can guess, I > > have > > > been very busy reading up on this. Any help in the decision > > making > > > process will be much appreciated. I am only 38 years old and not > > one > > > to " stomach " being sick!!! All the options I have read about > seem > > to > > > have down sides to them. Is having the surgery the best way to > > avoid > > > long term problems? Thank you in advance for any insight from > > those > > > who know best! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 No worries Crystal, How was your day today. Mine was average with the eating but did not care much whether I did or not. I spent most of the day at surgery and hospital. My daughter 16yo had abdomen pains. She ended up having a cyst on her ovary and had an laperoscopy ( did I spell it right?), very late this afternoon. I would have rather it been me. It is so hard being the bystander parent. I really feel for the parents with kids with A. The staff were great at the hospital, I could stay with her right up until see was fully aneasthetised (spelling again)in the theatre while they were preparing. My daughter was much happier with this option as she was pretty scared. All went well and I can bring her home in the morning. She will be a bit sore for a while. So now I am sitting and drinking a thickshake from macdonalds I picked up on the way home, and online. Have a good day. achalasia , Crystal Rodbourn <chrissyl67@y...> wrote: > Wow, makes me wish I could get to Austrailia! I do not want the botox after reading all the posts. I think my best bet is the surgery! Thank you > > Crystal > > ykosworks <ykosworks@y...> wrote: > -Hi Crystal, > > Sandy is not raving. I agree with her. I am at the same point as you. > Have just been diagnosed as A and botox in Australia is now very > rarely used as I can see. From what I have read on this group it is a > short term fix. I certainly do not want to unnecessarily pump toxins > into my body whenI have multiple medical conditions. My surgeon is > not looking at botox as a solution at all. He does not do it any > more. My dilation only has lasted me 2 months. I spoke to Dr Bessell > yesterday by phone and he is booking me in for the surgery next month. > I believe my surgeon is very experienced in this condition and am > confident with his knowledge and ability. > I also learned this week we have the latest technology for manometry > testing here in Australia. The conputer programme for it was made > here as well. > Hope this is of help. > All the best > in Australia > > -- In achalasia , " toomuchclutter " <sandycarroll@c...> > wrote: > > Dear Crystal, > > > > Stop stop...I can't keep my fingers from typing. Forget the 80/20 > > bantering, but I don't think there is a doctor that any of us in > the > > group goes to that would recommend botox for a basic achalasia > > patient. It is generally accepted by all (okay maybe there is an > odd > > duck out there, but I don't know which one) that would recommend > > botox. Unless you are complicated with other severe health > problems > > or have something else besides achalasia. Please reconsider. Call > > or email ANY of the doctors on the list and I'd bet you they all > > advise you to stop. > > > > You may have to travel a little but it will be worth it. > > > > Please others, help me here so I don't look like a raving maniac. > > > > Check out this website: My favorite, it has articles from all the > > medical or 80% of them, summarized. Type in achalasia and botox > and > > see what comes up. Be careful of the dates of the articles. Botox > > was thought to be a good solution for us in the late 90's and 2000 > or > > so, but it didn't work out. There are thousands of articles, > updated > > daily about achalasia. Type in the teaching hospitals at all close > > to you and look up the gi department, minimally invasive > departments > > etc. > > > > Here's the website: > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed > > > > Stay up all night or skip work tomorrow and you will know more > about > > achalasia than most any gi you run into. > > > > There are discussions about dilatations vs. surgery and then the > type > > of surgery and type of wrap or even if there is a wrap. Any choice > > you choose there is fine with most of us, even me. Whatever choice > > you make in those areas I'll support but botox isn't on my happy > list. > > > > Raving Sandy in So Cal > > > > > > > > > > > > > > Hi Crystal, > > > > > > > > I was diagnosed January of 2004. I was given the usual 3 > > options - > > > Botox, > > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > > because > > > I was > > > > told that it is supposed to be the longest " fix " for > achalasia. > > I > > > had > > > > surgery in Sept of 2004 and have had no regrets. Swallowing is > > > fairly close > > > > to normal, I just have to make sure I have water on hand for > some > > > foods, > > > > which is good for us anyway!! If you have any other questions, > > > feel free to > > > > ask, that's what we're here for! :-) Where are you from, maybe > > > someone can > > > > recommend a GI/surgeon to you! > > > > > > > > Hugs, > > > > > > > > in BC > > > > > > > > > > > > > > > > _____ > > > > > > > > From: achalasia > > [mailto:achalasia ] > > > On Behalf > > > > Of Crystal > > > > Sent: September 22, 2005 12:15 PM > > > > achalasia > > > > Subject: Just Diagnosed > > > > > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia > after > > > > suffering for well over 6 months with not being able to eat. I > > am > > > > worried about options and choices. I have yet to meet with the > > > > gastroenterologist about the options, but as you all can guess, > I > > > have > > > > been very busy reading up on this. Any help in the decision > > > making > > > > process will be much appreciated. I am only 38 years old and > not > > > one > > > > to " stomach " being sick!!! All the options I have read about > > seem > > > to > > > > have down sides to them. Is having the surgery the best way to > > > avoid > > > > long term problems? Thank you in advance for any insight from > > > those > > > > who know best! > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 , I hope all is well with your daughter. That is nerve wracking, waiting for a child in surgery with nothing to do but wait. I know, my son had surgery at 9 mos. old. The worst thing to do was to walk away from him after they put him under. I was crying the whole way down the hall, it was a wonder I didn't walk into a wall!!! But all works out, it has to, right! My day was pretty average too, Chicken noodle soup, most consistency today that I had. I actually got pretty psyched today. I had an appointment with my GI and he prescribed procardia for me to take to try to relax the esophagus & LES to help ease things prior to surgery. Unfortunately no pharmacy stocks it so I have to wait until tomorrow. I thought for sure I could eat a true lunch. Oh well, maybe dinner tomorrow night. I plan on letting everyone know how it works and if there are any side affects. That worries me too, as it actually works on lowering blood pressure and mine today was only 100/65. Low enough. My prayers are with you and your daughter as well as the rest of your family. Stay tough and good luck on the food for tomorrow! Crystal > > > > > Hi Crystal, > > > > > > > > > > I was diagnosed January of 2004. I was given the usual 3 > > > options - > > > > Botox, > > > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > > > because > > > > I was > > > > > told that it is supposed to be the longest " fix " for > > achalasia. > > > I > > > > had > > > > > surgery in Sept of 2004 and have had no regrets. Swallowing > is > > > > fairly close > > > > > to normal, I just have to make sure I have water on hand for > > some > > > > foods, > > > > > which is good for us anyway!! If you have any other > questions, > > > > feel free to > > > > > ask, that's what we're here for! :-) Where are you from, > maybe > > > > someone can > > > > > recommend a GI/surgeon to you! > > > > > > > > > > Hugs, > > > > > > > > > > in BC > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > > > From: achalasia > > > [mailto:achalasia ] > > > > On Behalf > > > > > Of Crystal > > > > > Sent: September 22, 2005 12:15 PM > > > > > achalasia > > > > > Subject: Just Diagnosed > > > > > > > > > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia > > after > > > > > suffering for well over 6 months with not being able to eat. > I > > > am > > > > > worried about options and choices. I have yet to meet with > the > > > > > gastroenterologist about the options, but as you all can > guess, > > I > > > > have > > > > > been very busy reading up on this. Any help in the decision > > > > making > > > > > process will be much appreciated. I am only 38 years old and > > not > > > > one > > > > > to " stomach " being sick!!! All the options I have read about > > > seem > > > > to > > > > > have down sides to them. Is having the surgery the best way > to > > > > avoid > > > > > long term problems? Thank you in advance for any insight > from > > > > those > > > > > who know best! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 -Thankyou Crystal, My daughter ended up staying in hospital over night. The gas in her chest was causing a lot of pain. She is home now and resting. We both thank you for your kind thought. I managed to eat some this morning and have a camomile tea now. It was slow going but I am getting it down. All the best to you today too and hope your appointment becomes fruitful. Will be waiting to see how you go., -- In achalasia , " Crystal " <chrissyl67@y...> wrote: > , I hope all is well with your daughter. That is nerve > wracking, waiting for a child in surgery with nothing to do but > wait. I know, my son had surgery at 9 mos. old. The worst thing to > do was to walk away from him after they put him under. I was crying > the whole way down the hall, it was a wonder I didn't walk into a > wall!!! But all works out, it has to, right! My day was pretty > average too, Chicken noodle soup, most consistency today that I > had. I actually got pretty psyched today. I had an appointment > with my GI and he prescribed procardia for me to take to try to > relax the esophagus & LES to help ease things prior to surgery. > Unfortunately no pharmacy stocks it so I have to wait until > tomorrow. I thought for sure I could eat a true lunch. Oh well, > maybe dinner tomorrow night. I plan on letting everyone know how it > works and if there are any side affects. That worries me too, as it > actually works on lowering blood pressure and mine today was only > 100/65. Low enough. My prayers are with you and your daughter as > well as the rest of your family. Stay tough and good luck on the > food for tomorrow! > > Crystal > > > > > > > > Hi Crystal, > > > > > > > > > > > > I was diagnosed January of 2004. I was given the usual 3 > > > > options - > > > > > Botox, > > > > > > Dilations, or the Lap Heller Myotomy. I chose the surgery > > > > because > > > > > I was > > > > > > told that it is supposed to be the longest " fix " for > > > achalasia. > > > > I > > > > > had > > > > > > surgery in Sept of 2004 and have had no regrets. > Swallowing > > is > > > > > fairly close > > > > > > to normal, I just have to make sure I have water on hand > for > > > some > > > > > foods, > > > > > > which is good for us anyway!! If you have any other > > questions, > > > > > feel free to > > > > > > ask, that's what we're here for! :-) Where are you from, > > maybe > > > > > someone can > > > > > > recommend a GI/surgeon to you! > > > > > > > > > > > > Hugs, > > > > > > > > > > > > in BC > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > > > > > From: achalasia > > > > [mailto:achalasia ] > > > > > On Behalf > > > > > > Of Crystal > > > > > > Sent: September 22, 2005 12:15 PM > > > > > > achalasia > > > > > > Subject: Just Diagnosed > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone, I was just diagnosed yesterday with achalasia > > > after > > > > > > suffering for well over 6 months with not being able to > eat. > > I > > > > am > > > > > > worried about options and choices. I have yet to meet > with > > the > > > > > > gastroenterologist about the options, but as you all can > > guess, > > > I > > > > > have > > > > > > been very busy reading up on this. Any help in the > decision > > > > > making > > > > > > process will be much appreciated. I am only 38 years old > and > > > not > > > > > one > > > > > > to " stomach " being sick!!! All the options I have read > about > > > > seem > > > > > to > > > > > > have down sides to them. Is having the surgery the best > way > > to > > > > > avoid > > > > > > long term problems? Thank you in advance for any insight > > from > > > > > those > > > > > > who know best! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 Dear , Am at my stepson's house in Atworth in Wiltshire at the mo and saw your reply to Crystal and had to say hello. Your sense of humour is great. You are right in being an expert in the soft diet regime. It was a bit of a risk having all your wisdom teeth taken out wasn't it? Does this mean you will now be dafter than ever? I will write you a more serious letter (like we are supposed to) when I get back home, but for now, keep well my friend. Lots of love from Ann m4myjn5@... wrote: Thanks. I am doing really well in eating now and for the first time in a really long time I have been able to sleep flat. I have to take Prilosec everyday but that I can do so I can eat...lol THe only other problem I am haveing now is that I had all my wisdom teeth taken out on the 22nd of this month and it appears that one of the disks in the jaw has slipped out. So I can only open my mouth about a half on inch. That makes it hard to stuff food in...lol The oral surgeon also wants me to not eat any tough food either so I am back on a semi soft diet... Oh yeah...lol in Suffolk To help you stay safe and secure online, we've developed the all new Security Centre. Quote Link to comment Share on other sites More sharing options...
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