This is just a general post. Hi, I'm living in France. My daughter is 19 and has just been operated on for achalasia at a hospital in Lyon by the POEM method. She came home the day after the operation just yesterday. The medical team said they were happy with the way it went, with no problems at all. She started to have problems swallowing in the middle of 2015, and we saw 3 generalist doctors (we live in the country, and frankly French generalists - well sometimes I'm not at all happy with their knowledge) before the last one had the sense to admit that she didn't have a clue what my daughter's problem was and admitted her to see a specialist. That was around November 2016, and that's the first time anyone mentioned the term. So we lost about 15 months getting her condition correctly diagnosed.
Now she is at home, and following a liquids-only regime for 8 days, she has started to have fairly severe acid reflux problems. She is taking esomeprazole, 40 mg 2 x per day (for 1 month, then instructed to reduce this to 1 x 40 mg per day). However, for the moment this doesn't seem to be controlling the acidity problem. The only way for the moment is simply drinking a solution of bicarbonate - the old-fashioned remedy - which is very effective and rapid. I am worried about it obviously, and will probably call the hospital tomorrow to seek advice. It is true that it is early days, being only the second day after the op. While the medical team was great, and the op apparently went well, I did not have a chance to talk to the doctor who performed it, and there are still many questions that I want to ask, especially regarding the functioning of the lower oesophagus sphincter following this surgery. It is not clear to me whether this really stays open all the time. The fact to have incised muscle layers below, as well as superior to, the cadia region is not something I understand. And I wonder if she will now have to be on proton blockers for years (rest of life?). I hope we have made the right choice, but I have a doubt that perhaps the Heller method, finally, is better, if the acid resurgence becomes a big problem. Still, there's no going back.
Hello, unless they do something different there with POEM the procedure is to completely remove the sphincter so nothing blocks the food from entering the stomach. It is true that this being the second day is rushing it. I still take 40mg of Pepcid twice a day and 60mg of dexilant twice a day
From my understanding the will use the LES to make a valve so as to try and prevent acid reflux. They have not perfected this surgery as of yet and there are many advantages and disadvantages of having it. GERD being one disadvantage. I am having Botox injections till I have to have the surgery. Right now I'm just aspirating nightly. And I will sleep sitting up till I find a surgeon I am comfortable with. I tell all of my patients to write down ALL their questions for the doctor so you will not forget to ask him something. And most people forget to ask what was one of the most important questions for them. Keep a list and don't leave until each of your concerns/questions have been answered to your satisfaction. If you don't, you may regret it afterwards.
They removed 98% of mine and only left the piece they did because he couldn't tell if it was my esophagus tissue or diaphragm tissue. But did take it all. Hence my acid issues
Yes. Thanks for your comment. It's one of the problems - I don't know exactly what they've done. Thanks. I'll keep this thread informed on my daughter's progress in the weeks/months that follow. I need to find more about the surgery method used. POEM is a technique that is evolving very rapidly. Almost everything we read on the Internet is already out of date.
The Dr. you mentioned in NY that's done 400, are you referring to Dr. Stavropolis? He has done the most procedures in the US. Close to 500 now. I am getting my POEM done by him next month!
My symptoms are like others' symptoms here. I started having chest pains about 4 years ago and water elevated the pain. Or eating something quickly as soon as they started. Other times, no amount of water got rid of them. I'd just have to wait about half a day for it to resolve.
It wasn't until years later, the last 6 months or so, that swallowing got difficult. I'm a Type II, Stage 1. I feel discomfort every time I eat or drink. Hot tea is usually ok.
Right now as I type this, it's 1:07 am and I can't go to bed because whatever I ate at 7 pm is still sitting in my chest and won't go down. Maybe spicy soup. It's horrible.
I'm scheduled for the POEM and can't wait!! To be able to drink again.... ahhhh..... Just to eat without feeling nausea. Yes!!
Yes, he is the doctor that lied to me and used me as a lab rat without my knowledge. Before my procedure he spent an hour telling me how he was traveling all over the world and many stops in USA training doctors how to perform this new procedure. I know I did assume , which was wrong but he made it sound like he had done hundreds of this procedure. When I asked if it was fda approved I was told it was too new!
I was sitting with my wife in recovery and my wife spotted him across the room and motioned him to come over. First he made pretend he didn't see her then came over and made this statement. " I should be very happy man because he did a much better job on me than he did on the person that went before me, then laughed"
When I went for my follow up after the procedure I asked why i was not told in advance that i was only the second person he had done this to his face turned red and he asked me point blank if i was his adversary? I said yes , I am! I said you not an honest person and you are no longer my doctor. He had promised me he would fix me. When he did his handy work i was worse than before i met him.
Four months later i went to NYU Hospital.and had a toupee fondoplication done and the surgeon said what he had done was doing nothing for me.
I also thought that because he had done so many procedures he must be the best. At my post op visit he was bragging to me how fast he could do one. Are you kidding?
I spoke to a lawyer because i wanted him to stop him but he would not proceed due to the fact that it would cost his firm 100k to bring it to trial and it would end up my word against his and we could lose.
Maybe hes ok for a simple sphincter removal. I had a very bad experience with him and will never completely trust another doctor as long as i live . On my post op visit i handed him a sheet of paper with 22 questions on it that i wanted answers to but never got them.
I know many people love him and I'm sure he's very good. I'm sure he will do a great job for you , I just don't trust him and would never under any circumstance use him again. If you ever want a referral let me know.
Hi, I can really relate to the problems of food or, in my case thick shake supplements. Everything just lies in my gullet and, takes forever and, a day to even reach my stomach. The chest pain is unbearable at times and, has become constant. I am bloated beyond belief to the point it’s affecting my breathing. I have been told that an oesophegetomy is all they can do now as I’ve had Achalasia for 35 yrs and, Barrats has now been diagnosed. I had two open surgeries the last being in 91 and, suffered from GERD ever since. Terrible pain now and, until I see my constant nobody can seem to tell me why I look like I’m about to give birth to a baby elephant. I can’t sit up as my ribs are cutting me in half, I’m out of breath just talking. I can’t remember the last time I slept, it’s like Groundhog Day with no improvement whatsoever
I imagine that it might be the weight of undigested food lying in your oesophagus that triggers the pain through the nerve system, or possibly acid reflux, and you are right that this can eventually affect your lungs, especially if you have to cough anyway.
I cannot explain the bloating other than suggesting that this might be an effect of your condition further down your digestive system (unless it is something else - which sounds a bit stupid to say).
The place with most experience of people having their oesophagus removed is the Oesophageal Patients Association who have a website and helpline 0121 904 7860. 90% of their members have the surgery because of cancer, but there are a number who have had an oesophagectomy because of achalasia. The digestive issues suffered by them are not as serious as what you describe, but it is major surgery and takes a long time for recovery.
The swelling does seem to be an unknown entity at the moment, hopefully the consultant will be able to throw some light on it. All I know 100% it isn’t a baby elephant 😊. I feel very raw inside almost burning feeling and, the only way I can describe it someone wringing my intestines out. It’s awful. The chest pain is definitely spasms I feel as eating or, drinking makes the pain worse. It’s different to acid reflux pain. I’ve noticed that I am surrering from the acid reflux almost all of the time now, whereas I was a silent refluxer. My partner will come in from work, give me a little kiss and, he says hot lips. He can actually taste the acid on my lips. I think that my system is inflamed by probably undigested food and, stomach acid. I do have problems with my bowels also as the Achalasia has travelled there in pretty much the same way as my oesophagus. Floppy, and sphincter muscle won’t relax. They call that Anismus, I definitely know I am not constipated as X-rays have shown. I have to work at that to prevent that happening. It’s all a mystery at the moment and, very uncomfortable but, hopefully the Gastro surgeon will throw more light on it when I am scheduled to see him on the 5 th March. Thank you once again Alan, I hope you are in a good place. Take care
HI Alan J M, understood your answer, everyone has a different problem/situation down in the esophagus, P.O.E.M. is a less invasive procedure, or way to perform surgery.
Achalasia is not the cause of reflux. the reflux in my case is from a HIATAL Hernia,
Hopefully POEM will resolved my main issue, My friend in the UK had the POEM, He is a new man!
1.- IDENTIFY your issues: ACID REFLUX, is not from Achalasia, I had acid reflux ( A HIATAL HERNIA) was worst when I used to eat bread made with American flour, I switch to French flour.. no more problem with flour/wheat.
2..-CAN’T have fast food, preservatives hurt me, I eat fresh made food.
3..-I DONT feel the burning sensation, YES I have to sleep with the head elevated ,(taking an acid reflux -ZANTAC) right at bed time.
4.-Does LIFE tensions makes it worst? YES, Those trigger PAIN!! came to a point I couldn’t eat… visited DR. MARK LAMET, from MEMORIAL REGIONAL in Hollywood, FLORIDA, His son ARI LAMET M.D. performed the ENDOSCOPY, they have explain me the whole situation, they did a biopsy too, removed some Dysplasia cells. (laser). a surgery (botox and enlarge with a balloon) will be done in 10 days.
5.-They checked for bacteria, H Pylori and everything, LOVE these wonderful doctors, They care A LOT. all their personnel too.
6. personal “remedies” drinking 3 oz of ALOE VERA with 1 tablespoon of honey, every morning.
7. eating when I can, tiny portions with liquids NOT sitting at the table, but standing up!!
8. -If I get bloated, (on my stomach) I take 1/2 teaspoon of baking soda with 1/4 cup of water, IT WORKS!!
9. I’m drinking Alkaline water too.
Hi i had a poem procedure done in 2015 . It has been good for eating but have just recently started getting spasms really bad in the last year. I was really ill before having the procedure as lost a massive amount of weight down to 6 stone and could just about take fluid . I am now a healthy weight but having trouble coping with these spasms. Talk to your surgeon about the spasms and hopefully he could give you some idea about them
I recently Dec 27th had the Poem. I have Acalasia. My Esphagus is also very dilated. the surgery took 3 hours. My Dr. is a jewel. it was a difficult procedure in my case. Here it is Dec 30th Friday. I have minor sourness and pain. still on a liquad diet for a few more days. stomach is grumbling alot. I was only in the hospital 24 hrs The next morning I passed the swallow test and came home. Tramadol and Antibiotics. I’m just healing up.
my Dr. said the same thing 25 to 30. also they don’t want to answer post op questions. Now I will have to chase them down. I will blast them on social media soon. This could get ugly. I’m feelin like this was a mistake.
