POEM Surgery for Achalasia

Posted by evgenimat @evgenimat, Jan 8, 2018

Hi everyone,
I’ve had achalasia that progressively got worse over the course of three years, to the point where I almost couldn’t eat without throwing up, and drank at least a liter of water with every meal. I just had a POEM surgery done in November (2017) with Dr. Robert Bechara in Kingston, Ontario. I wanted share my experience because, like many people here, before my surgery I scoured the web for hours trying to get an idea of what I should expect. I ended up being very anxious about the surgery, afraid that it wouldn’t work or even make things worse. I now know I fell victim to confirmation bias, since people are much more likely to post a bad experience rather than a good one, and I want to dilute that a bit.
Like many, I was first diagnosed with GERD and took Proton Pump Inhibitors, which obviously didn’t work. After a barium swallow, endoscopy, and mamotomy (ugh), I was correctly diagnosed with Type I achalasia and was lucky enough to be scheduled for POEM only three months later. Dr. Bechara and his staff were incredibly friendly, communicative, and accommodating to the fact that I lived out of province. Dr. Bechara studied in Japan, where the procedure was developed, and had a success rate of 100% from 100 patients that he’d done the operation on. Contrasting to how nervous I was, he seemed to almost be bored. In fact, the day I had my operation, he had another person getting it too. So, he’s a total expert. Do ask your doctor how many operations they’d done and if they had any complications, if nothing else it’ll put your mind at ease.
Three days before the operation I was on a fully liquid diet, which isn’t bad but really drains your energy. All I wanted to do was lay in bed and watch TV, so don’t plan any marathons. The morning of the surgery I was put on IV and right before the surgery I was knocked out and put on anaesthetic. All I remember is the count down, and the next thing I knew I was coming to in the post-op room. At first the anaesthetic was still working so I felt sleepy but great. As it wore off though, I started feeling a pain in my chest. Getting up was out of the question for at least a few hours, but they gave me a fantastic pink numbing liquid (Lidodan 2%) which worked wonders. I was pretty much bedridden for the next three days, and had almost no energy for anything. So take that week off work is my advice.
This pain remained for about three weeks, and, I’ll be honest, it really sucked. At first it was a constant dull pain that inhibited my breadth of movement and would only be subdued by the pink stuff. After about a week the pain became acute, which was worse. I would feel almost totally fine, and then this sharp stab would suddenly come on and I had to lie down wherever I was; always have your pink stuff (or Tylenol) on hand. I thought these was the spasms some people wrote about in blogs and was afraid it wouldn’t go ever away. I definitely had thoughts that this wasn’t worth it, and I should’ve just lived with the swallowing issues rather than inhibiting spasms. BUT, the pink liquid was awesome and it would calm the pain in about 30 minutes, and it did go away after three weeks. It became less and less frequent, and now totally gone. The pain is not that surprising really, they put a 17cm incision inside your body – its gonna hurt. After a week after the surgery I was able to work just fine.
Right now, two months post-surgery, I feel so incredibly grateful that I had the operation done. I can eat all my favourite food not only without throwing up, but with consuming only a small amount of water (often not even necessary). I’ve started feeling thirsty again, can eat until I’m full, and have finally started regaining the weight I’d lost. If you have a chance to do this operation, do it. And I would highly recommend Dr. Bechara if you have the opportunity. Good luck, and don’t give up hope!

Interested in more discussions like this? Go to the Digestive Health Support Group.

Day 19 post POEM - still having trouble sleeping as heartburn often wakes me up. I'm still sleeping on a 45 degree angle. Eating is still painful in the morning, it's hard to swallow, and I have chest pain but gets a bit better through the day. Still on purees. Surgeon started me on Sulcrate. Another scope is scheduled to see what's happening.

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Had poem procedure 35 days ago. Think surgery went well. No gerd. Able to swallow without spasms but have intermitant pain in area of rib cage, both sides and also occasional shoulder pain which I am told is from the CO 2 gas. Still staying on soft foods for now, no desire for anything else. Dr didn't seem that concerned about pain issue so I am hoping it will eventually ease up. Has anyone experienced pain in this location?

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@bexgm

Thanks for this! I'll ask my surgeon. I can certainly feel reflux all of the time. Very uncomfortable when I attempt to drink fluids, eat pureed food or lay down! The pain from the C02 insufflation during the procedure was awful the first 3 days I was home and now the pain is related to any eating or drinking I do from the reflux. Sure hoping this gets better. I struggled to eat prior to the surgery due to always feeling full and stretched. I also felt like I was having constant reflux, which was painful if I ever ate too close to bedtime, despite the PPIs I was on. So I'm used to some of this, just hoping for it to get better 🙂 The surgeons deal with the disease, but it's helpful hearing from others about their personal experiences.

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How is your recovery? I had the POEM procedure in June 2020.

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@hopeful33250

Hello @margaretmary and welcome to Mayo Connect,

I am so pleased that you posted about the good results from your surgery. I hope your progress continues to go well.

Was the swallowing problem the main symptom you had prior to surgery or were there voice problems as well (like hoarseness)?

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I definitely had hoarseness. Quite bad

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@candidough47

I definitely had hoarseness. Quite bad

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Last 6 months before Poem I couldn’t eat only liquids and even had a hard time keeping down. It was awful

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I have achalasia and had balloon dilation two years ago. It seemed to work at first, but lately I'm having
pain across upper chest. I went back to doctor who listened to my chest with stethoscope and said everything
sounded fine. That was about six weeks ago. Pain remains. No one in my area performs POEM and I'm 80 years
old, perhaps too old for operation. Just wondered if anyone had similar experience with balloon.Was thrilled
with initial results. Getting discouraged now. Also had botox shot before balloon. That was also wonderful but
only lasted about three months. Can't be repeated I'm told because it causes scarring which makes POEM
more difficult to perform. Any input appreciated. Glad all the POEMS seemed to produce proper results.
One additional question, what were ages of POEM people. Don't see much information about this.

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@petuniamom567

I have achalasia and had balloon dilation two years ago. It seemed to work at first, but lately I'm having
pain across upper chest. I went back to doctor who listened to my chest with stethoscope and said everything
sounded fine. That was about six weeks ago. Pain remains. No one in my area performs POEM and I'm 80 years
old, perhaps too old for operation. Just wondered if anyone had similar experience with balloon.Was thrilled
with initial results. Getting discouraged now. Also had botox shot before balloon. That was also wonderful but
only lasted about three months. Can't be repeated I'm told because it causes scarring which makes POEM
more difficult to perform. Any input appreciated. Glad all the POEMS seemed to produce proper results.
One additional question, what were ages of POEM people. Don't see much information about this.

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Young 74.

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@fourof5zs

@evgenimat ,
Thank you for sharing your experience. So far ablation is working for me, but I know down the road it will not. It is nice to know of other's experiences. You are correct.. one finds more negative than positive when researching. It is nice to read of a positive outcome. I pray it continues.

Zaroga

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What type of ablation? My GI wants to do Botox however I’m not seeing a lot of results.
Thank you Cheryl

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@cheryl46

What type of ablation? My GI wants to do Botox however I’m not seeing a lot of results.
Thank you Cheryl

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@cheryl46

I probably should have used the word dilation instead of ablation. I have had ablations for Barrett's esophagus that I have.
This article explains the ablation:
https://www.mayoclinic.org/diseases-conditions/barretts-esophagus/multimedia/radiofrequency-ablation/vid-20084711

ZeeGee

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I have recently been diagnosed that I have Zenker Diverticulum and need to see a doctor who can perform the Z-Poem. I have been to 5 doctors so far and have been told that I am a high risk do to 3 necks surgeries with plates and screws in my neck. I have one more doctor I can see in Charleston, SC who has performed several z-poems, I'm just not sure due to the high risk that I am a candidate. I am in the process of referral. I have been going through this since January 2022 and its now July. It's getting old! Any advice?

Sue

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