POEM available in Toronto
Posted , 18 users are following.
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
AlanJM shrutin
Posted
shrutin AlanJM
Posted
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!
AlanJM shrutin
Posted
That's good news! Long may it continue! Thanks for letting us know.
Ddbr shrutin
Posted
I am going through this procedure tomorrow with the same doc. Too bad I didn't find you earlier. Wish me luck!
sheila17721 shrutin
Posted
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!
shrutin sheila17721
Posted
amanda99139 shrutin
Posted
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.
Thanks
tricia57736 amanda99139
Posted
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!
shrutin amanda99139
Posted
Hello Amanda, I apologise for not having replied sooner. My email id linked to this forum was frozen. I would love to my share recovery story and help you any way I can. I do hope though that you have already received the required treatment and are feeling great. In any case, let me know if you'd like to hear back from me. I will text you my number. Take care.
tricia57736 shrutin
Posted
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
Ddbr tricia57736
Posted
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!
tricia57736 Ddbr
Posted
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.
natalie19081 tricia57736
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I was seeing Dr Lui and have the same problem. They never call back
leanne87511 tricia57736
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Hi there. I am just wondering how you are doing now after the POEM. I'm assuming you had it a few months ago.
amanda99139 leanne87511
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Yes, I had POEM in April and I am doing pretty good. I find it is less uncomfortable to eat but is still pretty painful to eat. Food goes into my stomach and drinks too, so that is good. I go for my manometry and PH24 tests in November and I am anxious to see the results of that. Overall I am happy with my surgery, but definietly not back to "normal". I know I am having issues with motility in the stomach and I would bet anything in my intestines too. When my POEM surgery was over my surgeon said everything went well but they were surprised to see food in my stomach as it had been well over 48 hours since I had last eaten. Now that my Achalasia has been "dealt with" I am needing to figure this stomach issue out. I'm full very easily, and almost always feel gross aster eating. Hope all is well with everyone!