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POEM Surgery for Achalasia
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!
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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
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.
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
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?
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.
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2 ReactionsI'm glad that you found the video interesting. The Mayo doctor sounds like an expert in this type of surgery. I hope that you hear back. After contacting five surgeons it certainly won't hurt to talk with a sixth one.
Caring for each other is something that happens on Mayo Connect and I'm glad for the opportunity to encourage you.
Will you keep in touch with any other concerns or questions? Also, will you let me know if you are able to get an appointment at Mayo? I look forward to hearing from you again.
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1 ReactionI went to my Gastroenterologist after having very bad swallowing issues she did a Gastroscopy and a Motility Test which disclosed that the nerves/muscles were no longer working. She then arranged for me to see a colleague who then did four Gastroscopies and four Anaesethics, three using a balloon of 20mm, 30mm and 40mm dilations and then had another Motility Test which showed a diagnosis of Achalasia which could be caused by a viral infection or autoimmune.
The tablet Motilium which is used to help this condition has Sulphur in it which I am allergic to.
In the meantime I have had a few trips to hospital as the blockages in the aesophagus were being pushed back into the lungs with some really terrible results.
I was then sent to a surgeon who operates with the POEM procedure who informed me that I have Achalasia Type 2 and that with Type 2 the Dilations were never going to work.
I thought I felt comfortable with this surgeon so he operated. The time after the surgery is not very pleasant either especially after you get a nurse who notices that the date on my pain patch written by another nurse earlier is out of date and just rips it off my arm without finding whether I have a new one and not caring.
Unfortunately the operation was unsuccessful so now I am just living from day to day. Life goes n!
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1 ReactionSo sorry to hear of the difficult disorder and problems post-surgery. Any other thoughts on how to correct this problem?
I thought I had a motility issue, it appears that I do not, well in a way, but more blockage obstruction, I know of one woman that said that she is going to need like a "pacemaker" for her GI, not her heart, there are valves that open and close, kind of a wave effect, that moves through the GI, before I found out I didn't have a motility issue, I bought a quality tenz unit, THIS IS NOT MEDICAL ADVICE, I am not an MD, check with your MD, before trying, and I would put the tenz in and/on various parts of my tummy, to get it to fire those neurons and pump the food through, at times, it seemed to work or aid in working, again, THIS IS NOT MEDICAL ADVICE...seek out a good GI, and I mean a good one, check their ratings/reviews, and seek out a good surgeon, again, check thier ratings/reviews, and best of luck to you. Oh yes, one more, potassium, increase, decrease sodium, I read, and some folks mention magnesium, one time I added electrolytes, potassium and sodium ion exchange are involved in neurons firing, and my tummy starting chugging and gurlgling, and within a short time I "pooped' when I hadn't in a long time, and about an hour later, farted in the bathtub, when I hadn't, giggled like a little boy, cause it was so good to do that, when nothing but enemas and duralax, prior....NOT MEDICAL ADVICE, but the latter sure helped me at that time in my life, a year ago.
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1 ReactionThank you to everyone who has posted here. I am 22 and was diagnosed with achalasia last year after having increasing difficulties swallowing for 4 years. I am terrified out of my mind for my POEM, which after 2 barium swallows, 3 endoscopies, 2 botox injections, and 2 horrible esophageal manometry tests I am finally being allowed to have. I am so excited to drink cold liquids again, to each bread without being afraid of throwing up, and to feel comfortable going out with friends again. Your descriptions of your experiences are really helping me get a grasp on what's coming up. <3