Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hello, my name is Will, and I've got Achalasia. I live in Sydney Australia and I'm struggling. I got diagnosed in JAN 08 after having suffered since OCT 07. I had two dilations within a month in America (in Nashville with Dr. Vaezi who was good ). I've since returned to Australia for full-time University study, and my symptoms have returned with me. I've been told that I need the Heller Myotomy with Anterior Fundoplication, and I want to. The problem is the cost has left me with a choice. There's two options in Australia - go to a private hospital and get surgery done by nsen ( http://au.messages./lifestyle/lap-band/66239/ ) who has done 50 Heller Myotomys. I will likely be able to get it done within a month. I expect the cost out of my pocket to be between 3-8+ thousand dollars. - go to a public hospital and get the surgery done by another GI surgeon, or possibly nsen. I don't know how long I would have to wait, but likely it would be 2-4 months. Cost out of pocket after insurance would be ~$500. I'm more concerned about waiting time, as opposed to the experience of the surgeon. I have to say, I'm not terribly impressed by the surgeon I've spoken to, other then the number of cases he's done, he wasn't very confidence-inspiring, and the treatment I've received from his staff and staff at the facility (private hospital) hasn't been great. I've had to chase them about things I feel they should be able to tell me easily ( ie scheduled fees, appointments ). Overall, I'm feeling pretty down-trodden about the whole thing. I really just want to get the surgery over with, and get on with my life, which I'm finding is being incredibly disrupted (now more then previously). This next month, at the very least, will be hell, as I've got to present my Thesis to the aeromech school in early SEP, all the while, trying to get treatment sorted. As for more information on my symptoms: I get the spasms often. It's usually in the morning, after 5am until I get out of bed. When they happen, they're very painful, and I have to sit up and drink water (very slowly). I have a lot of trouble swallowing food. I find that fruit is hard to eat, and sweets are hard to eat. Bread is very hard. When I swallow food, it can take up to a minute to get to my LES and fail to pass through. This makes it very hard for me to tell whether the food will cause me to regurgitate. Sometimes I don't bother eating slowly if I'm having a lot of trouble at a meal. I will take a large mouthful of food, chew it very well, and swallow it all at once. Then, I'll sit up very straight, take deep breaths and hit my chest hard, and with some pain, can swallow the food. Otherwise, I'll have to regurgitate. Water doesn't help me swallow, but if I can feel I have small amounts of food stuck, sometimes it will help it go down at the end of the meal. Sorry for going on. If anyone else has had experience with Achalasia in Australia, I'd love to hear more. Cheers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi,I'm Kathy from maryland...I really understand what you are going through.....when I get spasms or chest pain,I drink ice cold coke..so when you first start to notice discomfort,try drinking that...the carbonation really helps...good luck and God Bless Achalasia in Australia Hello, my name is Will, and I've got Achalasia. I live in Sydney Australia and I'm struggling. I got diagnosed in JAN 08 after having suffered since OCT 07. I had two dilations within a month in America (in Nashville with Dr. Vaezi who was good ). I've since returned to Australia for full-time University study, and my symptoms have returned with me. I've been told that I need the Heller Myotomy with Anterior Fundoplication, and I want to. The problem is the cost has left me with a choice. There's two options in Australia - go to a private hospital and get surgery done by nsen ( http://au.messages. / lifestyle/ lap-band/ 66239/ ) who has done 50 Heller Myotomys. I will likely be able to get it done within a month. I expect the cost out of my pocket to be between 3-8+ thousand dollars. - go to a public hospital and get the surgery done by another GI surgeon, or possibly nsen. I don't know how long I would have to wait, but likely it would be 2-4 months. Cost out of pocket after insurance would be ~$500. I'm more concerned about waiting time, as opposed to the experience of the surgeon.. I have to say, I'm not terribly impressed by the surgeon I've spoken to, other then the number of cases he's done, he wasn't very confidence-inspirin g, and the treatment I've received from his staff and staff at the facility (private hospital) hasn't been great. I've had to chase them about things I feel they should be able to tell me easily ( ie scheduled fees, appointments ). Overall, I'm feeling pretty down-trodden about the whole thing. I really just want to get the surgery over with, and get on with my life, which I'm finding is being incredibly disrupted (now more then previously). This next month, at the very least, will be hell, as I've got to present my Thesis to the aeromech school in early SEP, all the while, trying to get treatment sorted. As for more information on my symptoms: I get the spasms often. It's usually in the morning, after 5am until I get out of bed. When they happen, they're very painful, and I have to sit up and drink water (very slowly). I have a lot of trouble swallowing food. I find that fruit is hard to eat, and sweets are hard to eat. Bread is very hard. When I swallow food, it can take up to a minute to get to my LES and fail to pass through. This makes it very hard for me to tell whether the food will cause me to regurgitate. Sometimes I don't bother eating slowly if I'm having a lot of trouble at a meal. I will take a large mouthful of food, chew it very well, and swallow it all at once. Then, I'll sit up very straight, take deep breaths and hit my chest hard, and with some pain, can swallow the food. Otherwise, I'll have to regurgitate. Water doesn't help me swallow, but if I can feel I have small amounts of food stuck, sometimes it will help it go down at the end of the meal. Sorry for going on. If anyone else has had experience with Achalasia in Australia, I'd love to hear more. Cheers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Dear Will,  I am not from Australia - in fact I am from the opposite side of the world, female and older than you. We do have members here from Australia but because we all have this disease in common there are lots of American, English, Europeans, etc, all willing to help you.  If it is the time of waiting that is vital, then your choice is made. But personally I don't think that wait of 2-4 months will do much harm at all. It's not like cancer, where every day counts. If you can find some coping strategies (and that's one way we can help you, with suggestions), that time will seem like nothing in the grand scheme of things.  Bread and fruit? That sounds familiar. Fruit can be difficult, especially if you attempt to eat the skin, as in apples. And because we loose our peristalsis with this condition heavy things can be better, so bread is difficult. Try something crunchy like crispbreads - forget the things you know you can't eat, until afterwards. What is the point? And we are all different in what we can get down pre-myotomy, so eat what YOU can.  And please don't bang away at your chest! There are gentler methods. Try shrugging your shoulders or running up and down the stairs or walking about in the back garden for 5 minutes. I am sure that the others can chime in with some suggestions.  That's how it is - food goes down slowly and stops at the junction of your stomach because the valve there only opens when " it feels like it " . I know that this is hardly a medical description (LOL) but I want to show you that we care and empathise and you have found a good place to come for friendship and understanding.  All the best for your studies and decisions, From Ann. From: tchiseen <tchiseen@...> Subject: Achalasia in Australia achalasia Date: Thursday, 7 August, 2008, 9:00 AM Hello, my name is Will, and I've got Achalasia. I live in Sydney Australia and I'm struggling. I got diagnosed in JAN 08 after having suffered since OCT 07. I had two dilations within a month in America (in Nashville with Dr. Vaezi who was good ). I've since returned to Australia for full-time University study, and my symptoms have returned with me. I've been told that I need the Heller Myotomy with Anterior Fundoplication, and I want to. The problem is the cost has left me with a choice. There's two options in Australia - go to a private hospital and get surgery done by nsen ( http://au.messages. / lifestyle/ lap-band/ 66239/ ) who has done 50 Heller Myotomys. I will likely be able to get it done within a month. I expect the cost out of my pocket to be between 3-8+ thousand dollars. - go to a public hospital and get the surgery done by another GI surgeon, or possibly nsen. I don't know how long I would have to wait, but likely it would be 2-4 months. Cost out of pocket after insurance would be ~$500. I'm more concerned about waiting time, as opposed to the experience of the surgeon. I have to say, I'm not terribly impressed by the surgeon I've spoken to, other then the number of cases he's done, he wasn't very confidence-inspirin g, and the treatment I've received from his staff and staff at the facility (private hospital) hasn't been great. I've had to chase them about things I feel they should be able to tell me easily ( ie scheduled fees, appointments ). Overall, I'm feeling pretty down-trodden about the whole thing. I really just want to get the surgery over with, and get on with my life, which I'm finding is being incredibly disrupted (now more then previously). This next month, at the very least, will be hell, as I've got to present my Thesis to the aeromech school in early SEP, all the while, trying to get treatment sorted. As for more information on my symptoms: I get the spasms often. It's usually in the morning, after 5am until I get out of bed. When they happen, they're very painful, and I have to sit up and drink water (very slowly). I have a lot of trouble swallowing food. I find that fruit is hard to eat, and sweets are hard to eat. Bread is very hard. When I swallow food, it can take up to a minute to get to my LES and fail to pass through. This makes it very hard for me to tell whether the food will cause me to regurgitate. Sometimes I don't bother eating slowly if I'm having a lot of trouble at a meal. I will take a large mouthful of food, chew it very well, and swallow it all at once. Then, I'll sit up very straight, take deep breaths and hit my chest hard, and with some pain, can swallow the food. Otherwise, I'll have to regurgitate. Water doesn't help me swallow, but if I can feel I have small amounts of food stuck, sometimes it will help it go down at the end of the meal. Sorry for going on. If anyone else has had experience with Achalasia in Australia, I'd love to hear more. Cheers. __________________________________________________________ Not happy with your email address?. Get the one you really want - millions of new email addresses available now at http://uk.docs./ymail/new.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I don't know how far you are willing to travel, but here are the names of two other doctors. Cade, based at the Epworth Eastern and St. 's in Melbourne (Box Hill) http://www.easternhealth.org.au/boxhill/giSurgUnit.html Dr Bessell, Adelaide Australia, http://www.gisurgeon.com.au/ You can search the group web site for more about these doctors. Both are suppose to be good and experienced with achalasia. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 G'day Will, my name is Ray, I'm a member of the group, but don't get here very often. I had my Heller Myotomy back in October 2006. My surgeon was , he works from the Epworth Eastern also. I was 's first patient he had performed this op on, he was assisted by a colleague, I think his name was Said Hussein. I would without any doubt whatsoever recommend to anyone. I have not had any real problems to talk about, thus being the main reason I don't show my face so to speak within the group. Any thing I may be able to help you with ,please don't hesitate to contact me. Regards Ray. Geelong, , AUS. achalasia@...: notan_ostrich@...: Thu, 7 Aug 2008 22:44:58 -0700Subject: Re: Achalasia in Australia I don't know how far you are willing to travel, but here are the names of two other doctors. Cade, based at the Epworth Eastern and St. 's in Melbourne (Box Hill)http://www.easternhealth.org.au/boxhill/giSurgUnit.htmlDr Bessell, Adelaide Australia, http://www.gisurgeon.com.au/You can search the group web site for more about these doctors. Both are suppose to be good and experienced with achalasia.notan _________________________________________________________________ Shout your Messenger buddies to the movies http://www.livelife.ninemsn.com.au/compIntro.aspx?compId=4590 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Hi I live in Melbourne, I am 33 years and was diagnosed Dec 2005. I had my surgery done in May 2006. My Surgeon was Mr Cashin. He works at both a Private and a Public Hospital. He was very confident and positive about the surgery. I had a myotomy with anterior fundiplication. I am about 5-10 per cent away from where I should be, but I am really happy with the way it has worked out. Occasionally I still get food sticking but not often, more so when i am stressed. I still have to chase my food with water, but that is a part of life, I accept this as there is no muscle function there. I still get spasms but they seem to be less extreme than in the early days. I had my surgery performed at a public hospital, which turned out to be a nightmare. I waited for about 5 months, they called me in twice but cancelled my surgery at the last minute. I was in an article in the Herald/Sun which caused a stir. I was then given a special appointment time to get the surgery done with my surgeon. It took a little while for me to start feeling human again, both mentally and physically. But I got there. I have just recently seen my surgeon and will have a follow up gastroscopy next week. He said that I need to have a gastroscopy every 4 years to make sure that everythings ok. Let me know how you go. It has certainly been a journey for me. -- In achalasia , " tchiseen " <tchiseen@...> wrote: > > Hello, my name is Will, and I've got Achalasia. I live in Sydney > Australia and I'm struggling. I got diagnosed in JAN 08 after having > suffered since OCT 07. I had two dilations within a month in America > (in Nashville with Dr. Vaezi who was good ). I've since > returned to Australia for full-time University study, and my symptoms > have returned with me. > > I've been told that I need the Heller Myotomy with Anterior > Fundoplication, and I want to. The problem is the cost has left me > with a choice. > > There's two options in Australia > > - go to a private hospital and get surgery done by nsen ( > http://au.messages./lifestyle/lap-band/66239/ ) who has done > 50 Heller Myotomys. I will likely be able to get it done within a > month. I expect the cost out of my pocket to be between 3-8+ thousand > dollars. > > - go to a public hospital and get the surgery done by another GI > surgeon, or possibly nsen. I don't know how long I would have to > wait, but likely it would be 2-4 months. Cost out of pocket after > insurance would be ~$500. > > I'm more concerned about waiting time, as opposed to the experience of > the surgeon. > > I have to say, I'm not terribly impressed by the surgeon I've spoken > to, other then the number of cases he's done, he wasn't very > confidence-inspiring, and the treatment I've received from his staff > and staff at the facility (private hospital) hasn't been great. I've > had to chase them about things I feel they should be able to tell me > easily ( ie scheduled fees, appointments ). > > Overall, I'm feeling pretty down-trodden about the whole thing. I > really just want to get the surgery over with, and get on with my > life, which I'm finding is being incredibly disrupted (now more then > previously). This next month, at the very least, will be hell, as I've > got to present my Thesis to the aeromech school in early SEP, all the > while, trying to get treatment sorted. > > As for more information on my symptoms: > I get the spasms often. It's usually in the morning, after 5am until I > get out of bed. When they happen, they're very painful, and I have to > sit up and drink water (very slowly). > > I have a lot of trouble swallowing food. I find that fruit is hard to > eat, and sweets are hard to eat. Bread is very hard. When I swallow > food, it can take up to a minute to get to my LES and fail to pass > through. This makes it very hard for me to tell whether the food will > cause me to regurgitate. Sometimes I don't bother eating slowly if I'm > having a lot of trouble at a meal. I will take a large mouthful of > food, chew it very well, and swallow it all at once. Then, I'll sit up > very straight, take deep breaths and hit my chest hard, and with some > pain, can swallow the food. Otherwise, I'll have to regurgitate. Water > doesn't help me swallow, but if I can feel I have small amounts of > food stuck, sometimes it will help it go down at the end of the meal. > > Sorry for going on. > > > If anyone else has had experience with Achalasia in Australia, I'd > love to hear more. Cheers. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2008 Report Share Posted August 13, 2008 I remember and have a cut out of your story in the Hearald/Sun. Sitting eating a bowl of 2 minute noodles? A staple in my diet always too. You kept on getting put off at Monash wasn't it? The thought of Monash makes me feel sick. I was supposed to be transfered there a little over a week ago for the start of the Ketamine infusion. The Private section. Thank God the Brighton Rehab said they could handle it. With the recent tear to my fundoplication, after some research, it's in part like I have had a un-official myotomy done anyway. I think that is why things have changed for me in the last 5 weeks since my 50th dilitation. Even though my diet is back to 'mush' and liquids. Eating once a day, if that. I have lost over 5kg's in muscle so VERY weak. I now weigh what I did in high school. I am glad that things finally seem to have improved for me. It's good to hear, after reading the story, that it all worked out for you. Australia > > > > Hello, my name is Will, and I've got Achalasia. I live in Sydney > > Australia and I'm struggling. I got diagnosed in JAN 08 after having > > suffered since OCT 07. I had two dilations within a month in America > > (in Nashville with Dr. Vaezi who was good ). I've since > > returned to Australia for full-time University study, and my symptoms > > have returned with me. > > > > I've been told that I need the Heller Myotomy with Anterior > > Fundoplication, and I want to. The problem is the cost has left me > > with a choice. > > > > There's two options in Australia > > > > - go to a private hospital and get surgery done by nsen ( > > http://au.messages./lifestyle/lap-band/66239/ ) who has done > > 50 Heller Myotomys. I will likely be able to get it done within a > > month. I expect the cost out of my pocket to be between 3-8+ thousand > > dollars. > > > > - go to a public hospital and get the surgery done by another GI > > surgeon, or possibly nsen. I don't know how long I would have to > > wait, but likely it would be 2-4 months. Cost out of pocket after > > insurance would be ~$500. > > > > I'm more concerned about waiting time, as opposed to the experience of > > the surgeon. > > > > I have to say, I'm not terribly impressed by the surgeon I've spoken > > to, other then the number of cases he's done, he wasn't very > > confidence-inspiring, and the treatment I've received from his staff > > and staff at the facility (private hospital) hasn't been great. I've > > had to chase them about things I feel they should be able to tell me > > easily ( ie scheduled fees, appointments ). > > > > Overall, I'm feeling pretty down-trodden about the whole thing. I > > really just want to get the surgery over with, and get on with my > > life, which I'm finding is being incredibly disrupted (now more then > > previously). This next month, at the very least, will be hell, as I've > > got to present my Thesis to the aeromech school in early SEP, all the > > while, trying to get treatment sorted. > > > > As for more information on my symptoms: > > I get the spasms often. It's usually in the morning, after 5am until I > > get out of bed. When they happen, they're very painful, and I have to > > sit up and drink water (very slowly). > > > > I have a lot of trouble swallowing food. I find that fruit is hard to > > eat, and sweets are hard to eat. Bread is very hard. When I swallow > > food, it can take up to a minute to get to my LES and fail to pass > > through. This makes it very hard for me to tell whether the food will > > cause me to regurgitate. Sometimes I don't bother eating slowly if I'm > > having a lot of trouble at a meal. I will take a large mouthful of > > food, chew it very well, and swallow it all at once. Then, I'll sit up > > very straight, take deep breaths and hit my chest hard, and with some > > pain, can swallow the food. Otherwise, I'll have to regurgitate. Water > > doesn't help me swallow, but if I can feel I have small amounts of > > food stuck, sometimes it will help it go down at the end of the meal. > > > > Sorry for going on. > > > > > > If anyone else has had experience with Achalasia in Australia, I'd > > love to hear more. Cheers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2008 Report Share Posted August 13, 2008 Some more doctors in Australia have been added at http://achalasiadoctors.wetpaint.com/page/Oceania+%26+Australia I found a few of them by searching the websites of Australian medical journals and associations and finding the authors of articles on achalasia. Several who apparently have quite a lot of experience with achalasia are at Flinders Medical Centre, which seems to be public. in PA Quote Link to comment Share on other sites More sharing options...
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