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
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
DJ-RN Robert13450
Posted
shehnaz5 callmesonia
Posted
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..
DJ-RN shehnaz5
Posted
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
Robert13450 DJ-RN
Posted
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
DJ-RN Robert13450
Posted
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
Robert13450 DJ-RN
Posted
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.
AlanJM Robert13450
Posted
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?
Robert13450 AlanJM
Posted
DJ-RN Robert13450
Posted
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
DJ-RN callmesonia
Posted
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
JohnGex callmesonia
Posted
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.
Robert13450 JohnGex
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DJ-RN Robert13450
Posted
Often with a POEM, they will use the tissue to make a makeshift valve to prevent GERD. I've never heard of them removing it in its entirety.
DJRN
DJ-RN JohnGex
Posted
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.
DJRN
Robert13450 DJ-RN
Posted
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
JohnGex DJ-RN
Posted
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.