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.
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
POEM is a relatively new procedure, and it involves an endoscopic cutting of muscles inside the wall of the oesophagus to release the ension in the lower oesophageal sphincter. This then allows the food to go down intoi the stomach with gravity.
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.
I would truly hope that if your Dr is asking you to have the POEM procedure done he at leSt explained what it entails? To add to my story just a bit , my doctor could not remove the entire muscle because he was confused and couldn't tell if it was my diaphragm or the esophagus so he left a small piece. Also on 4 Ct scans it showed a hiatal hernia but my doctor swore up and down in 3 upper Endoscopys he never saw it. My point is that doctors are human and not always perfect and neither are their results. I'm not saying any of this to make you nervous just so you are informed. There are many videos online where you can watch the procedure being done. Any questions feel free. Good luck
Hi,
I am from India I had POEM recently on March
10th. I can assure one thing this procedure is
Helping me in keeping up food atleast.
Before procedure I did meet people who had this procedure 2 years ago and they are happy with the results.
I am still on soft diet but yes I am facing big time
Acid reflux and chest pains often. .
My doc did not expain me how many clips I have inside..but I am going to ask on my next review.
Wish you good health dear..
Hey,
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
I'm in Birmingham Alabama USA. UAB is a world renown hospital institution. I worked as an RN there. We haven't started doing POEMS yet but about to. I hear the place to go is Cleveland Ohio. I hope you get your probs worked out. I'm right there with you. We all are. That's what makes these sites so nice. Please visit my discussion as well.
DWJRN
Well said. GREAT advice
I'm so sorry to hear you are still having problems. I don't know much about the POEMS. I know they do not differ much from Heller Myotomys. The thing about it is more likely than not, if a Fundoplication is not done with a Myotomy you are probably going to developed GERD and esophageal spasms. And we all know how that type of chest and in my case jaw pain mimics that of heart anomalies/problems. Many actually have heart problems such as ischemia and MI's and write it off as chest pain related to their Achalasia. As a Cardio Thoracic RN I can tell you this. Don't EVER assume it is pain from your Alchalasia. If you have on going chest pain that radiates to your jaw or left arm seek medical attention immediately.
DWJ
DWJRN
Your Experience With Alchalasia
Hi, I want to thank you for your advice about chest pain. That was the main reason I had POEM done in the first place I can't tell you how many times I had severe chest pain for no reason at all and I would look at my wife and say , "should we go to the hospital?" we never did because like a fool I assumed it was my Achalasia. I told my doctor that at my age the fear of not knowing if you were having a heart attack or spasms was almost as bad as the pain itself. Thinking back I wish I would have gone.
I am going back into hospital tomorrow for a wrap with an overstitch. A new procedure done during Endoscopy . Had a Bravo test done last month and showed extreme acid with tissue damage. I hope I didn't wait too long.
We need more people on here from the medical field and also who have been through these procedures to tell their stories so people thinking about it have a better idea of what's ahead. I also found out that my doctor lied to me when I asked him how many POEM procedures he had done prior to mine and he told me 65 when in fact I found out it was more like 20-25, to me that's a huge difference and if I thought for one minute another doctor would tell the truth I would try for discipline be applied. I still to this day have been unable to find out why mine took over 3 hrs but hey at least I'm here to talk about it. Thanks again
I hope that you find the relief that you deserve. Not knowing if it's truly a cardiac issue vs Alchalasia is one of the toughest things. I think one has to really know their body and their symptoms in order to differentiate them from other medical anomalies. It's a hard call and I don't know what the right answer is. I too gamble often whenever I have them. More likely than not I don't seek medical attention. But again, I think if the pain differed in any way or I became diaphoretic, nauseated and perhaps had numbness or tingling in my arm going on I would definstely go ASAP. Even as a RN, Alchalasia is new to me. I was misdiagnosed some 15 years ago with GERD even though it was my LES the entire time. Where I went through
five unnecessary esophageal dilatations. All of those years suffering when I could have had treatment for it. I'm thinking seriously about speaking to an attorney. I don't know why additional testing wasn't done. Moreover, I don't know why I myself didn't catch on sooner. I just trusted what I was being told. Let me know how your wrap goes. They'll get you straightened out. Everyone is different so by no means don't compare yourself to what everyone else is saying. It has a lot to do on exactly how hypertensive your LES is amongst other things. What might work well for some may not you and I.
DJ
Thank you, I also was misdiagnosed for 6 years . The first doctor told me it was all in my head and I needed to be retrained to swallow properly. The next told me to put peppermint oil in a cup of tea each night and it would relax the esophagus and my troubles would be over. Being in the medical field can you believe the incompetence? I think it's a very tough call on your part to get a lawyer involved . I don't know about where you live but I would be careful unless you are very secured in your job. Just continue to be an advocate for us and be a watch dog at work to make sure people receive the care they need. You can be an important piece of the puzzle. Keep up the good work. I will let you know how it goes.
The POEM procedure does take a lot longer than the alternative procedures, but perhaps an element of that is a learning curve effect where it gets quicker with more experience.
I do not think any surgeons under estimate the numbers of operations they have done. I am not sure about counting rules but they may have been present at quite a few more than those they were in charge of, perhaps?
That may be true but when you ask a doctor how many of this procedure have you done you expect an honest answer and not one that they think will make you more comfortable to proceed with them. There were no other doctors around the area that I was aware of so I would have used him anyway. .
You're probably right. Sometimes I just get so frustrated and angry because I wasn't taken seriously over all of these years. I doubt seriously if I seek legal counsel. Sometimes I think most everyone just feels the need to blame someone else at times. It doesn't surprise me to hear what some doctors have told you. Sometimes I feel that Dr's need to experience some things first hand before they make some of the comments that they do. But, for the most, they truly try to understand what their patients are going through and will do whatever they can to diagnose and treat them accordingly.
Alchalasia effects everyone in different ways. That's why it's imperative that we not compare ourselves with others. Just because one experienced something doesn't mean that's what's going to happen to us. Again, everyone's body is different and each case of Alchalasia is not always the same. Mainly due to the differences and the degree of hypertension in the LES. Mine is extremely high and I'm classified as type 3 spastic. Unlike others, I'm not a candidate for pneumatic dilatation. But many are and might find this less invasive procedure something that they might want to consider having before they jump into a surgical procedure that alters the anatomical structure forever. What might work for me may be just the opposite with someone else. I like to hear what things (such as diet, food and liquids) people have found that works for them. Because those are things that certainly want hurt us to try and perhaps benefit us as well. That's what makes this forum and others like it so useful. Listening and learning from others is one way to help us cope and deal with this rare disease that only effects only 1 to 2 people out of a 100,000 annually. I personally suggest that everyone get a 2nd or 3rd opinion before they undergo any surgical procedure. It's imperative that we have the best surgeon to do what we truly need to have done and not just something that one particular surgeon does best. The type of Fundoplication that we have along with the Heller Myotomy or POEM will determine how well we progress afterwards. I've seen two surgeons thus far and each had an entirely different approach as to how they wanted to treat me. One wanted to do a Nissen and the other a Dor Fundoplication. So, I'm still on the fence as to which I will choose to have done. I don't want a surgeon who just happens to be good at doing one particular type a procedure, I want the correct procedure done that will benefit me most. So, how I'm going to decide which is best for me will be by seeing 2 to 3 different GI specialists who can tell me why they suggest one particular way over another and who do not have any personal stakes in the equation. With that, along with my own research and listening to other people's experiences will play a role in how I reach my decision.
I wish all of you the very best and would like to hear more from all of you.
DWJ
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.
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.
Well said!
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
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.