Scared achalsia newby 😢

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Hi all,

I first started getting the choking feeing 7ys ago. After going through the usual tests I have been diagnosed with type2 achalsia and schedualed for POEM in 3 weeks time. Can anyone reassure me? My surgeon told me noone has died on him but he has only done 80 surgeries with this method.

Im so terrified, esp of anesthetic awareness. Yes I know its not common but neither is achalsia.

Thanks in advance for any help or advise you can offer.

Una 😷

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17 Replies

  • Posted

    If your surgeon has done 80 of these procedures he is experienced, because it is a relatively new procedure, and achalasia is a rare condition.   POEM is a method of cutting the muscles that clamp tight the lower oesophageal sphincter by passing an instrument through the lining of the oesophagus, rather than actually cutting through the lining itself.   It is only the experienced surgeons who would contemplate the POEM procedure as it takes a lot of training to be able to undertake it correctly.

    POEM is an alternative to a more orthodox operation of a myotomy (cutting the muscles) and a fundoplication wrap where the top of the stomach is stapled around part of the base of the oesophagus to re-create a lower oesphageal sphincter to act as a valve to stop reflux rising.   I do not know how POEM achieves this effect; I presume that it is a matter of judgement how many muscles are cut during the POEM procedure.   It is a question that you could ask your surgeon (ie will I suffer from reflux after this operation?)

    Good hospitals have modern procedures for surgery regulated on patient  safety issues.

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  • Posted

    Hi,

      I underwent POEM around June 2013. I had so much of relief after the surgery. So you ll definitely find some relief. But there are certain things you need to follow to have your swallowing functioning smoothly. How is your swallowing now btw? Are you able to eat little by little or its very tight? Good that you're getting POEM done. You ll find much relief after the surgery for sure. Yes and as Alan says if the doctor had done 80 surgeries then he would be a very experienced person. So talk to him about it and say how you feel. 

    Here I give you some tips and advices. Any queries, feel free to ask.

    Make sure you exercise regularly. Have an active life now and then. Why I say this is that, when you exercise well your appetite will improve and I have experience that your swallowing would function more better when you have good appetite to eat. make sure you split your meals well. 5 meals a day with a gap of 3 hours in between will be fine. You can have smaller quantity every meal. 

    And don't do anything while eating. Like watching tv or doing something while eating. Don't have any conversations while eating either. Instead focus on what you eat. Relish every bite you take. Chew well and swallow well before taking another bite. What most achalasia people tend to do is they try to take the food and just push it down by taking another bite. Don't do that. Instead have your consious on eating alone and chew your food, relish it and swallow well. Seperate yourself so you can focus on what you eat.

    Make sure you eat more calories than you burn a day. Don't try to eat heavily when you have appetite. When you feel you had sufficient amount of food that would be well enough. Instead of going on and eating because you love the food. Try to avoid that. 

    Have a regular eating pattern. And dont worry.

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  • Posted

    I have gone through this operation which was a great success for a year but then I started eating bread which did not help at all. I now have botox every six months a n d doing fine. Just be careful what you eat and make sure you chew everything. You will be absolutely fine. Please don't rush to eat after the operation, just stick to soft food & liquids for about a month. I do not eat any bread now & ice drinks cause a problem. Milk is a great help. I have now put on weight & it's nice to be able to eat out at restaurants although I always ask for extra sauces.

    Please don't worry you will be fine.

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  • Posted

    Hi all,

    I have had the POEM surgery. Must say that I expected to bounce back the following day but its now 5 days later and im still exhausted. I have little pain though which is great and I can swallow now but im very weary.

    I will start a new thread discussing it further.

    Thank you all for your help.

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  • Posted

    I am newly diagnosed and am going in for my POEM Procedure on April 15th. I have done a ton of research on POEM and am feeling very confident and actually excited to have this done. A doctor who has done this surgey 80 times is considered to be very experienced. The best advise i can offer is do exactly what they tell you. Think of the joy you can have afterwards being able to drink glasses of water without having them as i put it fall the F&*K out. That is what I am looking forward to. Toiday is the last day i can have any food that is not a clear liquid, not that i do too well with food but you know, its the thought....i have to take an actibacterial mouthwash 4 times a day for the next three days and then i am off to the table. They said if things go really well i will be out same day or may have to stay one night and then home. I will report back as soon as i am able.
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    • Posted

      Best wishes and we hope that all goes well for you. Do let us know how you get on and we look forward to rejoicing with you at the result.
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    • Posted

      Hi Abigail,

      All the best with the op. - and look forward to hearing more positivity ;o)

      Cheers,

      Mick

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    • Posted

      Best of luck to you abigail. Just remember each day you will get stronger after the surgery. Make sure to have plenty of rest. This may be a factor that hindered my recovery slightly as I have two small kids. Wishing you all the best.
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  • Posted

    Hi Una,

    I'm sure you'll have little to worry about, since your surgeon is clearly expeirenced in this area of surgery.  After all, once you've done something complicated 80 times, don't you feel pretty confident about doing it the 81st time...

    All the best,

    Mick

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  • Posted

    Update for everyone including Una. First of all thanks to everyone who wished me luck. So my surgey is scheduled for this Friday. They put me on a clear liquid diet starting on Tuesday with 5 mls of a anti bacterial, anti fungal mouth rinse that you swallow 4 times per day. so far so good. The clear liquids diet has been less than delightful and its been werid to have a pure liquid diet give you the same symptoms as solid foods. For what its worth here is my list of clear liquids that kind of give me the sensation of actual food.

    1. Clear beef broth mixed half and half with clear vegatable broth that includes onions. I heat it up in a copu and sip it.

    2. Clear chicken broth done the same way.

    3. Jello cups ( i always say jello does not have flavor just colors LOL)

    3. Frozen clear fruit juice, apple cranberry or those cheap popsicles

    4. Pedia lite oir some such similar product made for babaies comes in a weord variety of flavors like strawberry kiwi and has electrolytes in it.

    If anyone else has any clear liquids suggestions opn to hearing about it. one more day after today of the clear liquids and then off to surgery...

    Will post afterwards.

    Thank you you again to everyone for their kind wishes and for those getting ready to go through the surgey i hope this helps. 

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    • Posted

      I guess so. But since i have never had the  weight loss part of this hit me yet i could stand to lose a few poiunds....I have another post out there that has the full story of my journey to this diagnosis. Wont reapeat all the stuff here. I see you mentioned you have kids. I dont have kids but I do plan to be back to work on Monday. I am a self employed consultant so I cannot take a lot of time off but at least most of my work is done in front of a PC and on the phone. so it should not be too bad. 

      I am curious how has the surgey worked out for you so far?

      BTW I am in the USA

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    • Posted

      I think everyone is different but as long as you get to rest as much as you can I think work may be managable, just dont push yourself too hard 😉

      So far I can eat and finding the relief from choking incredible. However Im still finding my feet with it. I ate some soup(habit from having achalsia for 7 odd years now), anyway i put pepper on it and hours later I woke up with bad chest pain so avoid the likes of cauliflour, pepper and spices at all cost. Other than that everything is perfect. Theres just alot I need to learn when it comes to the new dietary requirements.

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    • Posted

      Hopefully that will get better with time. My biggest issue at present is not being able to drink the amount of water i used to be able to drink. I was always a huge water drinker. Ten to twelve glasses per day now i am lucky if i can do four. I have never had the heartburn like other people have so perhaps that may not be an issue for me. I dont know., I wish you all the best and look forward to your updates.

      Take care

      Best

      a

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    • Posted

      Hi Abigail,

      I never had the heartburn either but i did get the spasms 😕

      Anyway how are you? How did your surgery go?

      I really hope your feeling ok.

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    • Posted

      The surgery went well. It was supposed to take 1.5 hours but ended up taking 3.5 hours. Apprently when they got in it was far worse than they expected. I went in Friday came home Saturday to both their and my suprise. They actually told me they were expecting complications. So far so good i can drink glasses of water and have progressed to mostly solid foods. Last week i was tired a lot and could not put in a full days work. Today I seem stronger but its early in the day. I have several medications I have to take for the next 30 days and I see my surgeon this Thursday. How are things going for you?
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