Posted , 16 users are following.
Has anyone gotten a POEM done? My doctor suggested for me to get it done now that my my throat has been starting to close up again after my ballon dilation. I'm due for another dialation in the meantime as I wait to see the surgeon who specialIes in POEM procedure. My doctor said said that this as more success than all my other opinions with the downside being acid reflux.
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Robert13450 callmesonia
Posted
Yes, I had POEM done last June so little less than a year. I use to get severe chest pains and terrible difficulty swallowing food. The procedure was supposed to take 45 minutes and took 3 hrs. I found out that the doctor lied to me and told me he had done over 65 of these procedures when I found out later he had only done 25-30 at the time. What I can tell you now is I am suffering terrible acid reflux. I just had another Bravo ph acid test done and I have tissue damage the entire esophagus and has gotten up to my vocal cords so I'm headed back into the hospital for another new procedure to basically do a wrap but with no surgery. Someone in Israel invented a machine that can tell the doctor everything he needs to staple part of the stomach and create a new sphincter. I sleep on a foam wedge with 3 pillows on top, my back is killing me from sleeping like this but I don't sleep very long. Whatever time I go to sleep I wake about 2 hrs later and can't talk , I walk around in terrible burning pain drinking a half gallon of milk , nothing helps. Now keep in mind I take 60 mg of dexilant before breakfast and before dinner and take 40 mg of Pepcid before lunch and bedtime plus eat tums like they are m&ms. My procedure is so new there isn't even a name for it.
The best thing I can tell you is grill your doctor and find out how many he has done. If it's under 25 run!!! My doctor was at a big Manhattan Hospital and I felt like I was just a notch on his belt. I'm now dealing with the doctor that brought the POEM procedure over from Japan 8 years ago and has done over 400. If you live anywhere near New York City contact me and I'll give you his info. I'm being told that worse case I'll have to take one pill a day instead of 4. Best case is I'm cured and have to take nothing and can sleep like a normal person. Worse part about these procedures is there is no long term info past 7-8 years. I wish you luck and follow instructions to the letter. Don't rush after to eat your regular diet. Take your time, I didn't start eating my normal foods for about 3-4 weeks. I had 6 clips inside holding the incision closed, ask if he is using clips or staples ? ASK A LOT OF QUESTIONS DON'T BE SHY. ITS YOUR LIFE . Good luck
shehnaz5 Robert13450
Posted
Can you please provide that doc details to me as well...I have many questions but my doc hardly have to answer them..
Maybe this will help me..
Thanks
DJ-RN Robert13450
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DJ-RN shehnaz5
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If your not getting EVERY SINGLE QUESTION answered to your satisfaction by your surgeon, you need to find another one. Too many people are quick to shy away from their Dr. or surgeon when it should be the other way around. You MUST take control of your health first hand because if you think your PCP will do it better or a surgeon, you couldn't be more wrong. You should feel totally comfortable with the person who is going to be cutting on you. And like I said, if he's the arrogant type or doesn't answer ALL of your questions find another. I have always told my patients to write every single question down before an appointment and don't leave there till you've got a satisfactory answer to each of them. It sounds like you are intimidated by your Dr/surgeon. Don't be.
MarylandGirl Robert13450
Posted
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!!
Hang in there, everyone!
Robert13450 MarylandGirl
Posted
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.
Nettie_Noo_Noo MarylandGirl
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AlanJM Nettie_Noo_Noo
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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.
Nettie_Noo_Noo AlanJM
Posted
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
poo68614 Robert13450
Posted
Can you please let me know the doctor whom you consulted for POEM.
I had balloon dilation recently and would need surgery in near future.
Thanks
scott88835 Robert13450
Posted
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.
AlanJM callmesonia
Posted
As with all variaions of this operation it is important that the surgeon makes a good judgement about how far along to cut the muscles, amd analyses the picture properly with high resolution manometry, if possible.
So POEM is a variation on the conventional myotomy of cutting the muscles though the oesophageal wall.
Either way, the relaxation of those muscles allows food to go down, but it also stops the sphincter valve from preventing reflux moving up. With conventional surgery, this is achieved by a fundoplication wrap, where part of the top of the stomach is wrapped around the oesophagus to create a valve effect. How far round this is taken depends on the judgement of the surgeon.
I am not sure whether the POEM is indeed more successful than conventional surgery. There must be some criteria for success and you could ask the surgeon for details of where this is published in medical journals. There are a good many people who have been happy with POEM, but the big issue is reflux, and many of the patients will need to be on PPI medication afterwards - indefinitely. PPI medication is taken long term and it is generally safe, but there have been recent controversies about the long-term effects, much as there would be about the long term effects of any other medication.
Exposure to reflux in the long term is a health risk in itself.
DJ-RN AlanJM
Posted
I agree that exposure to reflux long term is not good, but no matter what type of Fundoplication that you have, should it be a Dor, Nissen, etc. etc. Most of them run the risk of developing GERD afterwards. And almost always with a POEM or Heller Myotomy, you're going to get it. So damned if you do, damned if you don't. I personally feel that A Dor/Anterior Fundoplication is the best route to go.
Robert13450 DJ-RN
Posted
Just thought I would chime in here. I had POEM last June developed severe acid at night so 6 days ago had a Endoscopic Plication via Overstitch . I was told that I am only the second person to have this done. If that statement is true then there should not be a number 3. I'm six days since and still on soft foods and woke this more with the worst acid attack yet. I am beside myself . Before this issue I called the doctors office to make follow up appointment and they changed it from one week to 3 weeks and also told me I was seeing a different doctor for follow up. This really ticks me off. You want to experiment on me and after toss me around like a like a hot potato. There are 49 doctors in the gastro department at the hospital so maybe I can meet each one so all can get a piece of the cash cow (me) anyone reading this learn from my trusting mistake
DJ-RN Robert13450
Posted
Robert, your story really p*sses me off as well. You were good enough to trust them and they have the nerve to treat you like that? I'd be up there demanding to see that Dr. NOW. I'm sorry it hasn't worked out for you. Last Monday, the 10th I had Botox for the first time. I was assured it would last me several months and I wouldn't aspirate in my sleep. The morning before last, 6 days post Botox I aspirated severely in my sleep and thought I was going to choke to death. I was hoping with my new post that I started people would all come together and help each other out. But you have some here some there. This rare disease needs a forum so we can all talk about it together. I don't know what I'm going to do now. I'm not a candidate for pneumatic dilatation or anything else accept a Myotomy and Fundoplication. Listening to everyone has only confused me more. My surgeon wants to do a robotic Dor on me. I don't know if that's the best fundo for me or is it the best one he knows how to do. It seems as though everyone is having problems with every type that's being done. I'm about ready to climb the walls. How in the hell am I going to find out which I need? A Dor, Nissen, toupet', etc etc. Anyone with any answers that may help me would be appreciated. I can't keep aspirating every night just about. I know that it's doing a number on my lungs then I'll have that to worry about. I honestly don't know what to do at this point.
pilar40606 AlanJM
Posted
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.
AlanJM pilar40606
Posted
Glad that you have had good treatment.
scott88835 AlanJM
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you can do things to control reflux. more importantly At least now I can eat. Maybe its only been 4 days.