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POEM available in Toronto

Posted , 18 users are following.

shrutin
shrutin

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!

1 like, 49 replies

49 Replies

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  • donna15310
    donna15310 shrutin

    Posted

    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.

    • natalie19081
      natalie19081 donna15310

      Posted

      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. smile

    • donna15310
      donna15310 natalie19081

      Posted

      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. 

    • donna15310
      donna15310

      Posted

      Sorry, I meant to say, that I do 'not' live in TO., but in MB

       

    • natalie19081
      natalie19081 donna15310

      Posted

      Hi Donna,

      Yes not teh best club, but glad I am not alonesmile

      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. 

      I hope you will get relief sooN!

       

    • donna15310
      donna15310 natalie19081

      Posted

      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.

  • natalie19081
    natalie19081 shrutin

    Posted

    Hi There,

    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)    smile

    Thank for you help and i hope you are feeling good!

    • tricia57736
      tricia57736 natalie19081

      Posted

      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! smile

      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! 

    • donna15310
      donna15310 tricia57736

      Posted

      Thank you, Tricia.  Do you know if there is any kind of support group in Canada, like this Forum we are on?  Its only been 24 hours since the endoscopy/balloon dilation, so it is too early to tell anything.  I picked up a cold in the hospital, and am non-stop sneezing [there was a ceiling vent above my bed, blowing cold air down on me].
    • tricia57736
      tricia57736 donna15310

      Posted

      Hi Donna I'm sorry to hear that you seem to have picked up a cold in the hospital or just before you procedure. I'm sure sneezing doesn't feel great right now!  If you do think it's a cold maybe take some vitamins and some zinc to help it pass more quickly.    

      There are several Achalasia related support groups on Facebook. Are you on Facebook?  The largest one I believe ends in the number  77953468660 in it's address it's just called Achalasia and has about 2495 members .. I'm not posting a link because that delayed my last response LOL  the second largest I believe on facebook is called Achalasia Support Group .. but there are several of varying sizes and some have several posts a day and some only have a few posts a month or less.  There is also a Yahoo Achalasia group but it's not very busy at all.    None of these groups are "Canada" orientated  but they all seem to have people from around the world. Since this disease is so rare I think a group just for Canadians would be very small and have sporadic posting but it would be nice. 

      How's your swallowing now after your procedure - is it a little better? I've heard your throat might be a little sore for a couple of days.  I hope it works well for you. smile 

       

    • donna15310
      donna15310 tricia57736

      Posted

      Throat was sore yesterday, but not today.  Just the endless sneezing, which I'm beginning to think has also something to do with the sedation drugs and the oxygen hose down my nose yesterday!  Because I'm type 1 Ach., all food goes down by gravity and by being 'washed' down with liquid.  I've actually felt a couple of times today, stuff going down into the stomach, so this is hopeful.  Thanks for the suggestions for other groups, I shall look into this.

  • rico48999
    rico48999 shrutin

    Posted

    Hello Shrutin i hope you are doing well. I am so glad to find your post as we have no direction for my son's treatment and it looks like myotomy is on the list of his procedures

    So how are you now after your treatment?

    • shrutin
      shrutin rico48999

      Posted

      Hello Rico, its been almost 2 years since my surgery and i am happy to tell you that i am as healthy as can be. I have no issues with eating any type of food. Just one case of very mild cardiospasm last year. But thats about it. My level of physical activity and social life are absolutely normal too. I have regained a healthy amount of weight. I do hope your son gets care from one of the many great doctors mentioned in this post. Do not worry. The surgery is really quite safe and effective. Take care.
  • huda67703
    huda67703 shrutin

    Posted

    Hi. I need help for my aunt. She is currently in Abu Dhabi. She has been diagnosed with Achalasia 5 years ago and she had a type 1 surgery done in India. Recen She is diagnosed with Type 2 and I need help if someone can help her with the treatment provided in Canada. How to go about this treatment procedure 

    Please help 

    • shrutin
      shrutin huda67703

      Posted

      Hello Huda! Please get in touch with Dr. Andrew Pierre or Dr. Eran Schlomovitch at the Toronto General Hospital. They will provide excellent care to your aunt.
    • huda67703
      huda67703 shrutin

      Posted

      Hello! 

      Thank you for getting back to me. I just have a quick as I live in Edmonton and my aunt is out of country I just need to know how can I contact the doctor and would he be able to reply back if sent all the case details. Getting a referral wouldn’t work in this case I’m assuming as I am away from Toronto. 

      How are feeling now and is the surgery helping you with Achalasia now 

      Thank you again 

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