Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Hello, all. My sister (47) has just been diagnosed with achalasia and had a botox injection (Mayo Clinic - ville). She has had severe spasms since. They recommend a myotomy and we are gathering all the information we can. Would like to hear from those of you who have been in the same situation....female, 40-50's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hi I had my surgery nearly 6 months ago now although I am a bit younger than the age you are looking for women to get back to you with information If I can help let me know. I had open surgery so a bit harder to get over than key hole maybe Ann over here is the UK will be able to help as she had her surgery last year too and by key hole. Pippa (England) -- [Norton AntiSpam] Heller's Myotomy Hello, all. My sister (47) has just been diagnosed with achalasia and had a botox injection (Mayo Clinic - ville). She has had severe spasms since. They recommend a myotomy and we are gathering all the information we can. Would like to hear from those of you who have been in the same situation....female, 40-50's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hello, I am a bit younger as your sister (33 y.) and I have had achalasia for quite some time now. I can anly recommend to find your sister the best doctor you can. Ask him/her questions: how many myotomies performed already, complications, succes rate etc. etc. etc. Furthermore ask people on the forum, if they know the doctor who is going to perform the surgery. That brings up so much valuable information for you, I am sure! Isabella p_geddes <pgeddes@...> wrote: Hello, all. My sister (47) has just been diagnosed with achalasia and had a botox injection (Mayo Clinic - ville). She has had severe spasms since. They recommend a myotomy and we are gathering all the information we can. Would like to hear from those of you who have been in the same situation....female, 40-50's. Bored stiff? Loosen up...Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hi, and welcome to the board. I am so sorry to hear your sister has been diagnosed with achalasia. It is a horrible thing to have and the symptoms sometimes disgusting and painful. There is no cure, but certainly the symptoms can be treated and she can live a near normal life. Read my mail to Tig about getting the best doctors, and I'd suggest you go back and read as many as you can of the other messages. I am glad they have recommended surgery for her rather than more Botox. But before she does, she needs to know that her doctor is the best. If you have specific questions, fire away, someone or many may respond. Let your sister know she has our support. Maggie Alabama AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 G'day! I wanted to reply to you so you can pass on the information to your sister. I had the operation one month ago here in Germany (myotomy with Dor wrap). I was diagnosed in September 2006 after a long road of misdiagnosis, which is very common with this rare illness. I also had the Botox injection first, actually as part of the diagnosis. Afterwards I had the most HORRIFIC spasms (thought I was going to die; having a heart attack). They only were like that for about a week, then subsided, but it is a result of the injection. The same thing happened after the operation, but this time I was expecting them. They have virtually disappeared now. If you want to read my history, the appropriate message numbers are: 39273: road to my diagnosis 40203: why I wanted the operation 40835: report after the operation I wanted to write another report in the next couple of days to let everyone know how I am doing one month post-op. I was sick last week (not related to the operation) and am just getting back into things again, so the update will have to wait a little. But in a nutshell, I AM SO GLAD I HAD THE OPERATION. Please, if I can help in any way, let me know. Ask me any questions! Greetings across the miles Anita in Germany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Dear Marsha and Sister of p.geddes, Welcome to the Group. You and I are all in the grey area when it comes to treatment. (I am talking about a middle-age area and not referring to our hair!). Younger patients are usually advised to go for the surgery. Older patients (perhaps in their 60s,70s and above) or those who are unfit for surgery are usually prescribed a dilation to stretch the LES mechanically. Those of us in the middle have to discuss the best treatment with our Consultants. When I made my decision I was a little lost as to which to do, and so I asked my Consultant outright what he would do if he was the patient and he said he would opt for the surgery. So I made my decision right there and then and did not allow myself to ever doubt it. Being England, I had to then wait 6 months for the actual admission and had the surgery on 31st May 2006. Statistics say that the myotomy is 85-90% successful and I am pleased to say that I fall into that category. I can now eat "normally" with care and my only regret is the length of time that I struggled on alone before asking for this help. It seems that the general opinion of the people in this Group is to forget the botox. At best it gives temporary relief and at worst makes the surgery a little more difficult. Also many others say that they can manage this condition with herbal medicines and accupuncture, etc. In my opinion, this is just exactly that- "managing the symptoms". The only way to improve this condition (hopefully permanently) is to rely on the tried and tested treatments. There are some very well-informed people here. (I am not one of them! lol). Whether it is medical knowledge or support you need, you will find it and need never feel alone again. Best Wishes to you both From Ann in England. p_geddes <pgeddes@...> wrote: Hello, all. My sister (47) has just been diagnosed with achalasia and had a botox injection (Mayo Clinic - ville). She has had severe spasms since. They recommend a myotomy and we are gathering all the information we can. Would like to hear from those of you who have been in the same situation....female, 40-50's. What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Championship. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Has your sister consulted with Dr. Rosemurgy at USF in Tampa, Florida? http://hsc.usf.edu/medicine/surgery/gensurgery/rosemurgy.html Here's a link to an article he coauthored: http://www.annalsofsurgery.com/pt/re/annos/abstract.00000658-200505000-00006.htm\ ;jsessionid=F1QKyMHkV1nhq8Qtn024jqQhKSRJF9zxJVqLQQC61p925Hq9Lr6h!1570379021!-949\ 856144!8091!-1 It describes his experience with a large number of patients. After laparoscopic Heller myotomy, " Eighty-eight percent of patients felt their symptoms were greatly improved or resolved, and 90% felt their outcome was satisfying or better. Ninety-three percent felt they would undergo myotomy again, if necessary. " in Lancaster, PA Heller's Myotomy > Hello, all. My sister (47) has just been diagnosed with > achalasia and > had a botox injection (Mayo Clinic - ville). She has > had severe > spasms since. They recommend a myotomy and we are gathering > all the > information we can. Would like to hear from those of you who > have been > in the same situation....female, 40-50's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi All just some info- my daughter was diagnosed w/achalasia when she was 8- it started out kind of subtley and then got really bad really quickly- she was aspirating at night and had to be propped up on pillows- stuff would come through her nose and everything...Dr.s were kind of slow moving in the beginning-kept saying it was GERD- was seeing a pediatric gastroenterologist- I surfed the net plugging in her symptoms and came back to him with the possibility of it being achalasia? he said he thought I was right- had the endocope which was inconclusive- after I diagnosed her(ha) we did the barium swallow which showed the classic " bird's beak " and then had to do the lovely manometer test which by the way they didn't have a pediatric sized tube so the poor kid had an a big ole adult sized tube shoved up her nose and down her esophagus....that was not a fun test- but it confirmed the achalasia without a doubt- they wanted to admit her right away- like we were walking out of the manmometer and he was calling for a room-it was all happening too fast- he wanted to have her Heller's Myotomy done asap-(we had asked about balloon dialtion-he said it was obsolete and the myotomy was the way to go) our heads were spinning- they had never done a child's myotomy laproscopically before at the hospital she was being admitted to-and fortunatley they couldn't get a bed for her right away so we had time to digest it all for a couple days- was able to meet with the surgeon who was going to attempt the procedure laproscopically as she would have to have an incision going from her collar bone to her belly button if they couldn't do it that way..... got my daughter into surgery-the surgeon was assisted by the head of the laproscopic dept. of the hospital- she had four tiny incisions- they discovered that her LES was " over developed " or kind of bulging (?)-made their little slit in the muscle wall - my daughter was on morphine for two days and nothing by mouth until another barium swallow was performed to ensure no leaking- can you imagine having nothing by mouth for days and the first thing you get is barium? poor kid! anyway it was a success- she hasn't had any reflux-sometimes has problems with dry things like muffins but for the most part is symptom free-she had spasms for the first year or so which was to be expected....she is now 10 will be 11 this summer and is doing great...gained a bunch of weight once she was able to keep stuff down.... hope this helps anyone with questions? > > Has your sister consulted with Dr. Rosemurgy at USF in Tampa, > Florida? > http://hsc.usf.edu/medicine/surgery/gensurgery/rosemurgy.html > > Here's a link to an article he coauthored: > http://www.annalsofsurgery.com/pt/re/annos/abstract.00000658- 200505000- 00006.htm;jsessionid=F1QKyMHkV1nhq8Qtn024jqQhKSRJF9zxJVqLQQC61p925Hq9L r6h!1570379021!-949856144!8091!-1 > > It describes his experience with a large number of patients. > After laparoscopic Heller myotomy, " Eighty-eight percent of > patients felt their symptoms were greatly improved or resolved, > and 90% felt their outcome was satisfying or better. Ninety-three > percent felt they would undergo myotomy again, if necessary. " > > in Lancaster, PA > > > Heller's Myotomy > > > > Hello, all. My sister (47) has just been diagnosed with > > achalasia and > > had a botox injection (Mayo Clinic - ville). She has > > had severe > > spasms since. They recommend a myotomy and we are gathering > > all the > > information we can. Would like to hear from those of you who > > have been > > in the same situation....female, 40-50's. > 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.