Hello friends, I want to use this thread to connect with other Achalasia patients in Canada and especially to let them know about the availability of POEM (Per Oral Endoscopic Myotomy) in Toronto.
A bit about myself to begin with: I am a 31 yo female who started experiencing swallowing difficulties about a year and half back. With time, my symptoms got worse and I could not keep down any food that I ate. I would like to let fellow sufferers know that eating only when standing did help me with this. I could eat soft foods and keep most of it by eating while standing and then walking for next 10-15 mins.
I would consume a lot of green smoothies and other type of smoothies fortified with protein powders. This was instrumental in helping me not loose too much weight and keep up my energy levels overall.
The need to get treated intensified for me when the cardiospasm episodes started becoming more frequent. They would hit without any notice or trigger and leave me completely exhausted and awefully fearful of the next episode. It caused a lot of self-imposed social isolation as well.
I researched online for an Achalasia expert in Toronto/Ontario and I learned that Dr. Gail Darling and Dr. Andrew Pierre (at Toronto General Hostpital) were the authorities on the subject (along with other GI disorders). I was able to get an appointment with Dr. Pierre who is an exceptionally smart and kind individual. After a number of medical tests, we were able to make a formal diagnosis of Achalasia. While explaining the various options to me, he kindly let me know that he speacilaizes in Heller's Myotomy which is a tried and tested procedure. When asked about POEM, he suggested I speak with one of his collegues at TGH Dr. Eran Shlomovitz. After speaking with Dr. Shlomovitz, I was convinced that a minimally invasive procedure done endoscopically was the one for me. We were able to secure a surgery date within next 40 days.
I went through the procedure last week and I am happy to report that my initial observations are great. I am able to eat soft foods without any trouble now and there's no pain associated with swallowing. I do experience mild chest pains sometimes but I believe its due to my body receovering yet. These should vanish as the time goes by. I would also like to mention the worry free experience of the surgery and in hospital care at the TGH. Dr. Shlomovitz's team and the extended nursing team showed amazing professionalism and empathy in taking care of me.
I'd be happy to provide additional information to anyone. Please reach out to me on this forum. I hope you and your loved ones too find a good doctor and relief from your symtoms. Much Metta, take care!
Thank you for the information and the good news that you are feeling well afterwards. One aspect that does arise when people discuss POEM is the extent to which people might suffer afterwards from reflux, so it would be interesting to know whether you have such problems, and whether / how the sirgeon took this into account.
Hey Alan, hope you are doing well. It's been more than a month now since my procedure and thankfully, I am still feeling great. Just like you, I too was worried about reflux and associated chest chains. In the first 2-3 weeks after the surgery, I was taking a Nexium everyday. After consulting with my surgeon, I have stopped taking these too and I have yet to had an unpleasant episode. I too take a number of precautions to ease my life - 1. I do not eat after 9 pm and try to sit upright for at least 2 hours before retiring to bed. 2. I do not eat foods that'll unnecesarilly tax my esophagus such as breads/naans etc. 3. I try to remain active. After last meal of the day, I go for an evening walk for 10-15 mins. I do hope others benefit from these tips. Take care!
I'm a fellow Canadian (Edmonton AB) that has been suffering with symptoms for quite some time now, I had a gastroscopy last week which showed low esophegeal function, so my dr is sending me for a motility test next week. I'm hoping to find out answers soon. If it is a diagnosis of achalasia, I will definitely talk to him in regards to the POEM, and see if that's an option. Thanks for the info, I hope your recovery continues to go well!
Hi my name is Amanda Chaisson. I live in London ON and I was diagnosed with achalasia today (I've been speculating I have this for weeks). I would really love to chat with you if you would be willing to. My cell number is 226 268 2643... shoot me a text or give me a call if you want.
Hi Shrutin How are you feeling these days after your POEM? I hope that you are doing well.
I was diagnosed with Achalasia via manometry in late June and I was supposed to see the specialist who runs the Motility Clinic at Toronto General - Dr. Liu but I waited and waited and got worse and worse as I waited and never heard from the dr's office. My gastro's office was calling there daily to no avail.
So .. by early Oct after I'd lost about 25 lb in two months, was regurgitating regularly, having trouble at every meal and having to eat only soft food, or pureed food - quite a bit of soup etc .. I did my own research and discovered that there was a POEM trial going on in Toronto by two dr's one of which is Dr. Eran Shlomovitz. I asked my GI dr and Internist about getting refered to one of the dr's doing the trial instead and they said yes and refered me to Dr. Shlomovitz on Oct. 20th. I heard from his receptionist Oct 24th and the next week I met him at Toronto Western for an Endoscopy. He is very nice - at least in the brief, slightly drugged time that I've met him.
I had a barium swallow this past Friday - Nov. 11 at Toronto General .. and oddly enough it was normal??? I do have type three Achalasia though and that is the odd ball one .. In my research I've discovered that yes sometimes it can show normal barium swallows for type three, so I'm hoping Dr. S has an open mind and doesn't put me back in limbo. I meet with him at the end of the month to discuss the test results and treatment options. I guess I'll know soon enough if I'm a surgical candidate ...
BTW I've had symptoms for more than 10 years. it's come on slowly for me, perhaps because I've had to eat a fairly low residue softish diet due to crohns and tend to eat slowly anyway .. but either way it started for me with sitting up in bed in the middle of the night choking on my own saliva, then slowly having more and more trouble drinking water - getting terrible spasms as I drank, then spasms eating rice and other foods to severe spasms at any time of the day full or empty stomach feeling like a heart attack. These spasms I relieved by drinking three quick glasses of water. This usually worked but not always. Now as I said I'm having trouble with every meal and drink and have to have very soft food or smoothies. I'm regurgitating a lot and have lost quite a bit of weight. I also have milder but fairly constant chest spasms that get worse after a meal when my diaphragm and back will also hurt for a few hours. Fun stuff.
I'm also interested in following this post and hearing from fellow Canadians. Trish
I am 2 weeks post POEM done by Dr. Schlomovitz. I have just started on solid foods and it feels great! I am able to eat everything although I am being cautious and eating softer foods for a while longer. The whole experience of surgery was great too as they have a very good team there. Good luck meeting Dr S and hope you find the relief!
Hey Amanda I've seen your posts on the main Achalasia group on Facebook. I'm there too and responded to one of your posts. Feel free to either PM me here or reply or message me there. I'd love to talk to a fellow Achalasian. That goes for other Canadian sufferers as well!
Hi Ddbr I'm glad to hear that your POEM went well and that at two weeks you were very happy with it. How are you doing now 2+ months after? I hope you are doing very well.
I have news!!! I met with Dr. S. in late Nov and he is so very nice isn't he? We decided at the time to do my POEM in the new year - they didn't have dates at the time but called at the beginning of January and I'm having it done Feb 1st. I'm a bit scared and nervous and excited. Tired of living on blended soup and smoothies. My spasms are quite bad - constant really - I have Type 3 Jackhammer Achalasia and Dr S says my whole Esophagus is spasming so he's going to do a much longer than normal cut for the POEM. We'll see how that works out for reducing or getting rid or the horrible spasms. I'll try to update sometime after my POEM.
Well, finally, I am reading posts from a number of Canadians, who have Achalasia. I am about 10 weeks post-Heller Myotomy & Fundoplication surgery. I would love to hear from those with Achalasia...your stories and experiences. I am type 1, which means my esophagus is paralyzed - done. My surgeon, Dr. Hugh Taylor, is the only surgeon in Manitoba that does the Heller-Myotomy surgery. And like 'Shrutin's surgeon, Dr. Taylor is a very sympathetic and kind person. I have been part of this Forum since June 2016. Most of the discussions that I've been involved in, are with people in Great Britain, and especially Alan [OPA], who is very wise, and knowledgeable. Since September, I have been 'mentored' by a couple in England, who have answered questions, shared experiences, given advice. So, if any of you have questions, etc., I am only too willing to share my experiences, if this would be of help.
I was wondering if you knew who the leading achalasia doctors are in toronto. I used to see Dr Diamont who was phenominal and he has retired. Do those two doctors see Patients after a sugery is done (mine was done when i was 12 years old 35 years ago)
Thank for you help and i hope you are feeling good!
I have had a heleery myotomy and fundoplication surgery as well. I havent met many that have had these two surgeries as well. I have a paralyzed esophogus as well and have the surgers 25 years ago. It is nice to meet you.
My Heller Myotomy & Fundoplication was this past November. Today, I had a follow-up endoscopy & balloon dilation done. I well know what it is like to have an absolutely paralyzed esophagus, and you are right, there aren't many of us! Not exactly the 'unique' club we would like to belong to! I live in TO. As I mentioned in a previous post, in MB we have only one surgeon who does the Hellery Myotomy etc., and he is an amazinging compassionate man, as well as a good surgeon. My surgery needed some 'tweaking,' and so we will see if this helps that darn esophageal sphincter muscle to open up better, as I haven't had much improvement with the surgery. Time will tell. It is nice to meet you as well. Did you have improvements right away after your surgery 25 years ago? And, how could you 'tell' when food/liquids went down into your stomach? Would like to hear some of your experiences.
I was 12 so I dont fully remember how long it took. I had old school surgery. They went through my back and I was in the hospital for 2 weeks and off school for a couple months. WHat I can say is the surgery has been remarkable for me. Water pushes down most things without a problem. The only things I stay away from are seaweed salad, and overeating raw veggies and fruit. I do sturggle with Heartburn issues that I need to get adressed and some spasms,but I usually know what causes them.
I can tell 80 percent of the time when food goes down because I feel it move. the other 20 percent of the I find out when I have water an hour later and feel it go down.
Hello! I think I saw you posting on the FB groups today as well? Are you interested in being reassessed by a surgeon - are you having symptoms again? The doctor that I saw does POEM surgeries but if you look at this page for "POEM for Spastic Esophageal Disorders - Full Text View" (search for that term if this post doesn't include the link!!!) https://clinicaltrials.gov/ct2/show/NCT02425033 You can see that there is a POEM trial going on here in Toronto at the Toronto General Hospital - but there are a number of doctors associated with it and some of them also do Heller Myotomy (HM) surgery so you could contact one of those doctors.
My doctor is Dr. Eran Shlomovitz and he is extremely nice, smart and very compassionate and skilled. I had my POEM surgery Feb 1st. It was an extremely long myotomy - as in almost my whole esophagus (above the aortic arch) - so it took quite a while for me to heal but I feel so much better now. I have Type three with Jackhammer so my whole esophagus was spasming. It isn't spasming now and I can swallow quite well. I'm quite pleased with how things have turned out and it's not even a full month!
If you are interested in Heller Myotomy I've heard that Dr. Gail Darling is quite good. She's also listed on that page but there is not contact number for her. I'm sure you could do a search to find it.
I also keep hearing about Dr. Paul Kortan - who's a GI doctor out of St. Mikes. He doesn't do surgeries - he does dialations. i saw him for GI issues in the early 90's long before I knew I had Achalasia. I only saw him briefly ..
Other than that I'm not familiar with any other doctors for A in Toronto other than the ones listed on that POEM trial page.
Best of luck with your search - maybe let us know how it goes!
Donna - I'm sorry to hear that your HM needed tweaking. I hope that the dialation that you had today works for you and that you don't need anything more for a LONG long time!
Thanks, Natalie, I really appreciate what you have shared, about the sensations you feel when that darned muscle opens up. Its also helpful to know, that even 25 years post-surgery, liquids are required to 'wash stuff down.' That's what my surgeon said last month, that everything has to pretty much be 'washed down,' as the esophagus is paralyzed. He said there would be no 'miraculous' thing that would happen...the esophagus is finished. I apparently have had Achalasia type 1 for 'decades,' but it was only diagnosed at the end-stage [last June]. I do get the odd spasm, and food/liquids have been just sitting in the esophagus, post-surgery, so I'm hoping that today's 'tweaking' is going to improve things. So far, I've never had heartburn.
Just like you, I too was worried about reflux and associated chest chains. In the first 2-3 weeks after the surgery, I was taking a Nexium everyday. After consulting with my surgeon, I have stopped taking these too and I have yet to had an unpleasant episode. I too take a number of precautions to ease my life - 1. I do not eat after 9 pm and try to sit upright for at least 2 hours before retiring to bed. 2. I do not eat foods that'll unnecesarilly tax my esophagus such as breads/naans etc. 3. I try to remain active. After last meal of the day, I go for an evening walk for 10-15 mins. I do hope others benefit from these tips. Take care!