Can't make up my mind on surgery: None, Heller, POEM

Hi Brian i am waiting to see a surgeon to discuss the operation, i had a dilation 15 months ago and was great for a while ...though never as before (normal) .The last couple of months have been  hit and miss again,2 good days 1 bad one. When i have the good ones i think leave well alone then when the bad ones come (which drain me something chronic) i think have the operation.I have to say i am worried , this damn condition has been a curse on my life.Has any one who has had this op got advise?.

Hi Brian.  You echo my concerns exactly.  I'm also at a standstill trying to figure out what to do.  My symptoms are relatively mild so if I get the surgery it would primarily be as a preventative from further stretching out (and eventual megaesophagus). Have you been monitoring your esophagus for this?  A timed barium swallow test can measure your esophagus and you can compare over time.  

I'm leaning more toward POEM than Heller, only because I've heard they can more easily go back in if there are future problems and because I'd rather not deal with the wrap if I can avoid it. But, I am concerned about reflux and trading one problem for another! And some believe that POEM carries a greater risk for reflux!  My biggest concern, as with you, is the risk of cancer.  My grandfather died of esophageal cancer and now that I have Achalasia (he did not), I fear being at even greater risk.  Since reflux can add to that risk, I worry about adding that symptom to my poor esophageal list!  

So....between a rock and a hard place.  Right now I'm committed to gathering as much information as I can to make the most informed decision.  Of course, people hold biases and each individual is unique.  So surgeons will tell you to get the surgery, people following alternative health paths will advise you to make lifestyle changes rather than get surgery.  I'm just confused at this point and so the process of gathering information and moving toward the eventual leap of faith decision goes on. I hope some people respond to your inquiry here with some helpful information.  Amy

hi, my english not so good but trying to explain this thing

i also serching lots of dr. and consulting more than 6 specilist dr. all are sugesting me that go for poem not helers because there are more cases that after helers some are still not clearly oprated and poem is very esy and use full for e.cardia because when endoscopy gets under esophaguse dr. can see how many area that need to be cutting so it is the best way. i also feeling very well 4th day after my sugery. and there is no out side cutting are hole in body. so dont be hasitate so many go for poem..

 

Hi Brian

Ive just read your post its seems like your at a similer place i was a couple of months

ago trying to decide weather to have the Hellers with wrap or just carry on as i was.

I to have had this condition for many years and been able to manage it until recantly it became apperant things where getting worse when eating which promted me to seek help.

When i was advised to have the surgery i wasnt sure if i needed it at this point in time as i could eat some foods unlike some who are struggleing to eat anything and need to have it done.

After having a barium swallow it showed my esophagus had started to dilate so this was something i had to take into consideration i had to start thinking about the long term affects of having Achalasia. after trying to find out as much as i could about differant treatments as you are now i decided to go ahead with the Hellers surgery. I am only two weeks post op so i cant realy answer your questions altough i havnt had any reflux.

About the cancer risk i know its there but i think everyones at risk of developing so many differant cancers anyway i tend not to think about it.

No one can give you the answer on what to do you have to do whats right for you if you feel you can manage as you are then just keep having check ups but if your achalasia is starting to have an inpact on your body than you may have to start thinking about having something done i know its a hard decision to make.

I hope you can get the anwsers you are looking for.

 

Hi Brian , I have only had this for 4 years but it has now progressed to a point where I have chosen Hellers and am waiting for a date for surgery . I am not an expert but believe that regurg is part of the problem with cancer in the oesopagus so heller may actually help decrease this risk - but again not an expert - i have taken this choice as belive it as the best choice for me . Ca I suggest you go on facebook and search achalasia as there are several very valuable support groups with lots of very knowledgable people ready and able to give you advice and support .  good luck with your journey

Thanks for the replies... I finally found the two more active FB groups.

I had my first consult for the traditional Heller on 9/2. Went well. Doctor said on a scale of 1-10 (one being perfect esophagus and 10 being full blow out) that I'm a 2 to 3 as far as dilation, but that I should have a surgery sometime next year at least. I'm good enough to where relieving the restriction should allow it to undiate. She was also a big fan of the POEM but they were not going to start offering them until next year as she was just starting her training.

I have a consult for the POEM at UVA on 10/27. My GI and the Heller surgeon are both saying I'm an ideal candidate for POEM in that I'm younger, healthy, and not horribly advanced with the deterioration of my esophagus.

I have an endoscopy (EGD) on 9/10 to re-check for anything of of the norm. Feeling a little better about it all and currently excited to talk more about the POEM.

My main hangup with the Heller is the dissection to the diaphragm needed. This increases the risk of hernia with weight lifting. I'm very active and lift 3-4x a week. The POEM leaves all those structures intact.

~Brian

I am not medically qualified but I have been involved with the Oesophageal Patients Association and have spoken to many people who have had oesophageal cancer; and more recently have helped to organise groups of achalasia patients.

Firstly, achalasia is rare, and is much more unusual than oesophageal cancer.   I have never heard of achalasia presenting a specific risk for oesophageal cancer, but it is feasible, and I am not in a position to dispue the article.   All I can say is that I have heard a respected surgeon dismiss achalasia as a cancer risk for all practical purposes to a group of achalasia patients.   What may be a cancer risk is prolonged exposure to acid reflux.   The answer to that is that persistent reflux can lead to Barrett's Oesophagus which is not cancer, but does raise the risks, especially when dysplasia has developed.   The risk of oesophageal adenocarcinoma for a 30-year-old with newly diagnosed Barrett's is probably between 11 and 25% by the time that patient reaches the age of 80.   There is more information on the Action Against Heartburn website.

The overwhelming priority, it seems to me, is to improve the quality of life and nutrition if you have achalasia.   The earlier you get it diagnosed and then go for substantive treatment, the better.   The longer you leave it, the longer the food hangs around and creates a baggy oesophagus that is difficult to treat and may eventually lead to it having to be removed (oesophagectomy).   I know lots of people who have had this operation (oesophagectomy).  Many of them have a good quality of life, but if you can avoid this very major surgery you should. A Heller's myotomy is far easier to cope with.

Surgeons do criticise POEM because it does not create a valve by wrapping the top of the stomach around the base of the oesophagus to re-create a functioning lower oesophageal sphincter to prevent stomach acid rising.  I do not know enough about POEM but my complete guess is that it may be possible to cut enough of the muscles inside the lining of the oesophageal sphincter to improve the flow of food by gravity, and there may still be sufficient tension to stop some acid rising, but this seems unlikely to stop the acid rising at night.   It is an experienced surgeon's judgement, much like the number of degrees of the wrap of the fundoplication.

There are medications like omeprazole that are very commonly used to suppress stomach acid.   There are pros and cons like all medication but these proton pump inhibitors are widely prescribed and safe.

I do not think it is possible to really come to a conclusion about this on your own.   It needs to be done with a specialist surgeon and with a view for the long term good health and well being of the patient.   Waiting until things become unbearable may reduce the chances of a successful surgical outcome.   Regardless of how successful the surgery is, your system will probably only work in the future through gravity (ie there is little or no motility / peristalsis from the digestion muscles);  and you will always have to reduce the tension and stress surrounding eating for digestion to work as well as it can.

So my advice would be to see an experienced Upper GI (gastro intetsinal tract) surgeon at a specialist centre and trust their advice.