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.

Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @suetileston and welcome to Mayo Connect. I can understand your concerns regarding treating Zenker Diverticulum. The type of surgery needed to correct this problem is one that needs a specially trained physician. You mention that you were at high risk because of previous neck surgeries. Is that correct?

I found a video on Mayo Clinic's website where Mayo Clinic gastroenterologist Ryan J. Law, D.O., discusses the approach he uses in performing this surgery. I would encourage you to look at this video,
https://www.mayoclinic.org/medical-professionals/digestive-diseases/videos/minimally-invasive-treatment-advances-for-zenkers-diverticulum/vid-20528952

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Teresa,
Thank you for taking an interest in my case but after seeing 5 doctors I am so frustrated. Yes, I have had 3 neck surgeries one is at level C6 and C7 and that is where I have the Zenker Diverticulum. I am told I am at a high risk due to scaring, perforation and infection. I'm also told that this can grow, and I can be put on a feeding tube if not fixed. I read about the Z-POEM but can't find a doctor in SC to do it. I watched the video you recommended and sent a note off to Mayo Clinic in Jacksonville. I hope they answer me. Thank you so much for your caring.

REPLY
Profile picture for denisepowell @denisepowell

So glad your experience with the POEM procedure was positive however mine was not so good. It unfortunately did not work for me.
I do not think the procedure can be repeated any time soon. As with you the after surgery time was not very pleasant and with that still fresh in my mind I am loathe to repeat it any time soon.
Hope you have a very fulfilling life path from now on.
Kind regards
Denise

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Hello @denisepowell and welcome to Connect. I am sorry to hear that your POEM surgery was difficult.

If you are comfortable doing so, could you please share more about the problems you were having prior to the surgery? Were you diagnosed with Zenker's diverticulum or something else?

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Profile picture for suetileston @suetileston

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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Hello @suetileston and welcome to Mayo Connect. I can understand your concerns regarding treating Zenker Diverticulum. The type of surgery needed to correct this problem is one that needs a specially trained physician. You mention that you were at high risk because of previous neck surgeries. Is that correct?

I found a video on Mayo Clinic's website where Mayo Clinic gastroenterologist Ryan J. Law, D.O., discusses the approach he uses in performing this surgery. I would encourage you to look at this video,
https://www.mayoclinic.org/medical-professionals/digestive-diseases/videos/minimally-invasive-treatment-advances-for-zenkers-diverticulum/vid-20528952

REPLY
Profile picture for jenniferb @jenniferb

I am so happy this POEM procedure worked well for so many. I am sitting here next to my husband. He just had the procedure. He would be released fr his overnight stay in the hospital here soon. Just like everyone else, my husband was diagnosed with Gerd. He knew this wasn't the case, that he was dealing with a type of mobility issue. He is only 34, so doctor's stated that he was too young for Achalasia. It ended up progressing to Type ll. He lost 30 pounds in a few months. Prior to the surgery, he couldn't even keep water down. Even though he was on a liquid diet for days prior to the procedure, when they went in to do the POEM, they had to clear food from the esophagus. It had been sitting there for over 3 days.

We are hoping and praying that this procedure helps him be able to live again. However, upon going down and doing the Barium Swallow, they stated that some of the liquid was still sitting at the bottom of the esophagus. Has this happened to anyone else? We are terrified it didn't work. His esophagus is twisted and turned now, due to the ongoing condition. The doctor said it is "bag like", not a straight path. Has anyone else had the Barium not go down all the way, but had success with the POEM? If so, please let me know. We need some sort of hope!

Also, he felt pain upon drinking a sip of water. I am hoping this is because of the surgery, not the same pain he was getting. All feedback is appreciated!

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There is a certain amount of pain and discomfort afterwards. That gets better after a while and also everyone is different. I am sure he will be fine so good luck. Mine unfortunately at 74 did not work but your husband being so young has that on his side.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @evgenimat and welcome to Mayo Connect!

We appreciate your sharing your story of achalasia and about your successful surgery. We are so glad that you have experienced so much help after 2 months post surgery.

I'm sure your experience will encourage others who are considering surgery as treatment for achalasia. We all learn from each other at Mayo Connect and we are glad that you have added to this learning.

How much follow-up will you have now?

Teresa

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So glad your experience with the POEM procedure was positive however mine was not so good. It unfortunately did not work for me.
I do not think the procedure can be repeated any time soon. As with you the after surgery time was not very pleasant and with that still fresh in my mind I am loathe to repeat it any time soon.
Hope you have a very fulfilling life path from now on.
Kind regards
Denise

REPLY

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

REPLY
Profile picture for cheryl46 @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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Profile picture for ZeeGee @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

REPLY
Profile picture for petuniamom567 @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.

REPLY

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.

REPLY
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