Posted , 40 users are following.
Hi, its been 14 months since i have had my POEM surgery and have been very happy with the results. Is there anyone who has had it done longer than 2 to 5 days. I am curious to know if they had to repeat the surgery or do they contiue to be ok.
1 like, 97 replies
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pratik20 wendy83249
Posted
Hi Wendy,
I read that you had your POEM in NY. Would you please mind sharing your story about the approval from insurance? My case is little bit different. I initially was planning to do Heller and i got the approval as well. Few days before surgery after meeting with my doctor, i decided to do POEM. Doctors office said they sent the necessary documents to their pre-cert department to get the approval for POEM. I followed up with the insurance after few days and came to know that surgery date has been updated for Aug 11 but the procedure code was same as for Heller. I became nervous and called doctor office and they said my POEM has been approved. I mentioned what my insurance said but they said not to worry about - both procedures are myotomy so insurance might have got confused. I persisted with my doubt and had the pre-cert of my insurance talk with pre-cert of the hospital. They finally had the new code for POEM added to my case on July 28th. I even called my doctor's office asking for teh code and at that point the lady flipped. She just hng up saying " I don't know about the code." On July 31st, the pre-cert department of my hospital and my doctors were notified that the new procedure code was denied. I haven't heard anything from my hospital and it is august 2nd. I found all this information from my insurance. Now I am really not sure what to do. surgery is still scheduled for 11th and I don't know what the doctor's office is thinking.
Was your procedure approved on first attempt?
amy56547 pratik20
Posted
pratik20 amy56547
Posted
Hi Amy.
My surgeon is Dr Roman Petrov. He didn't know about all this work around or loop hole. I guess the pre cert department of the hospital do like this. They tried to keep the word myotomy vague. But when i got the letter from insurance I had same procedure code as my previous approval for Heller which I had postponed. I got scared and confused and then anxious about the american health care horror stories. I did couple of follow ups and when the procedure code was updated, it got denied. My surgeon said he would appeal. but i was not in a condition to wait. i was having trouble with liquids as well and I went for heller. after 2 weeks i am on soft food diet with no major issues. I have occasional heartburn or chest pain(when i am awake during the day. can't differentiate what it is.has happened twice which eventually goes away after some time. i m just taking notes so that i can discuss during follow up. Did you experience anything like that?
Jacci1959 wendy83249
Posted
Hi Wendy,
I had the POEM surgery almost 3 months ago my stomach started hurting today. This all started last year I had a cyst taken out of my neck and 6 weeks later I couldn't swallow my medicine. I've acid reflux for years after lot's of test I found out I had achalasia. I can't eat much because I have muscle damage at the top of the esophagus on the side where the cyst was. Still have to crush my medicine and I have a lot of mucus in my throat. I can't get it up and it doesn't go down. Most anything I eat hangs in my throat goes down after awhile sometimes hours. The bottom is working great. Like most people I didn't lose weight I gained which is crazy cause I eat very little. My doctor is in Dallas and did a good job on the POEM the ENT I think messed up the top part of my throat. Very depressing.
jessica68329 wendy83249
Posted
Hi. I'm scheduled to have a consultation with a surgeon in Seattle to do a POEM procedure on me. 10 years ago I was told surgery was not an option, due to the fact that I had undergone radiation treatment for non-hodgkins lymphoma on my chest, making the tissue more difficult to heal. This makes me very nervous, even though it is a relatively non-invasive procedure, it sounds like many of you have suffered a lot afterwards.
I have battled with the vomiting, the spasms, the inability to enjoy going out to eat because I can tell my esophagus is not going to cooperate, but I have managed somewhat, and many of the posts I've read here sound almost more terrible than what I've already been living with, and I've lived with days on end of not being able to keep liquids down.
I'm scared to undergo something that could actually end up making me worse off...no real food anymore? No bending over? I have a physically demanding job that require me lifting 50+pounds routinely, which I have managed to keep up with even in rough times with my acholasia...I get good results from botox, but they only last 3 months on me, and every treatment means more scare tissure which means greater risk during surgery.
If anyone has experience with this procedure who has also had radiation in that area, I'd love to hear from you. This is a scary road to go down, especially after being told it's too risky for me, but now being told it's the best option. It's scary and confusing, and any words of advise are extremely welcome.
pamelaj jessica68329
Posted
Hello,
From what I understand POEM surgery is the newest surgery procedure to treat achalasia, with the shortest down time, and the best long term effects. But, since this procedure is only about 12 years old we
have to listen as we go for the true long term effects . But From what Ive read the success rate is good! I just had the POEM surgery done a week ago after throwing up everything I ate and drank and losing over 40 pounds. I went from over 160 to 115. It is a serious desease and I know you need a team of experts.
I am Hoping your Seattle Surgeon is good, and just as importantly, has a good team behind him. When I
had my surgery there was a GI doctor, off course , an Anesthesiologist, and I believe a heart doctor (although I could be wrong but we were in a major hospital downtown), and of course the surgeon himself.
My surgeon and his team have performed well over 200 Poem surgeries successfully here in Houston. He's with UTMist. Hopefully you have not developed too much scar tissue which could cause you to not be a good candidate for surgery. Make sure your surgeon is a specialist , will perform the surgery in a major hospital, and has a good team.
Please keep us updated.
Wishing you the best!
Robert13450 wendy83249
Posted
Wendy please tell me that
Dr Stravrolopolus didn't do your surgery? He used me as a human trial without my knowledge or consent. When I asked him why his face turned red and left the room. I hope if it was that you find a different doctor for your follow up care. I had a toupee fondoplication 6 weeks after he told me he "fixed"me. My current Dr stated what he did had no benefit to me at all.
I'm sorry if he was not the doctor but I can't state stronge enough to stay away if him. I'm doing well now after having 3 surgeries in one year after 7 years of doctors not k owing what it was.
I am glad you are doing better. Achalasia is a very tough disease to live with. Feel good. Let me know if you want to talk more and I will give you info to reach me. Take care Happy New Year !
pamelaj Robert13450
Posted
I am so sorry to hear this happened to you. Achalasia is a serious enough illness on its own and not the time for doctors to
play mad scientist. Glad to you found a good surgeon.
pamelaj wendy83249
Edited
Hello Everyone,
I had POEM surgery on Feb 9 2022 and a follow up visit today Feb 15 2022. I was put on clear fluids the first days after surgery then I progressed to soft foods on the 3rd day. I actually ate watery grits with butter the day after surgery while in hospital. But, I had no problems until I got home and failed to blend the chicken in my Thai soup well enough on the 5th after surgery and experienced the worse chest pains of my lifetime.
I told my doctor about failing to blend my chicken soup well enough and the pain I had experienced, and to my surprise, he said I could eat whatever I could tolerate. So on the same day, day 6 post poem surgery for achalasia 2, I went to a soul food restaurant and ate oxtails, steak, mashed potatoes with gravy, mac n cheese, greens, green beans, and banana pudding. Yes, it was awesome!
I ate it slowly with small sips of water. And the pain after swallowing, is still there but seems to be getting better as I eat more and more regular food. At least I hope so! I also drank decafe and orange banana juice on day 3 or 4 post surgery with little to no pain, so it must have been the Thai chicken curry and coconut soup that is causing the severe pain. Probably the curry! Since I had little to no pain at all until I ate the chicken curry soup (up to 5 days post surgery) without blending the chicken well enough, I'm pretty this is what caused the sever pain in my chest. Don't do it!
I guess everyone is different though. I had lost too much weight to stay on a liquid diet for too long. .. over 40 Ibs in less than a year, the first 20 lbs slowly and the second 20 lbs very quickly. I did have tube feeding, for about a month prior to surgery, but tube feeding does not allow a complete diet or allow me to gain my weight and stamina back fast enough if at all. . However, the feeding tube did keep me hydrated and allowed me to stay somewhat nourished prior to surgery. .
I am hoping that eating a regular diet will not always cause chest pain, especially not this badly!And I am hoping that I will not have to sleep sitting upright for the rest of my life! Its practically impossible to stay up 2-4 hours after diner each night (which I read I should do), especially when you have to be up early the next morning for work.
I will see my Surgeon again in three months,
for a follow up visit and will post again with an update then.
My Surgeon is thorough, explains everything, has a great bedside manner, is bery patient and kind, with a great team behind him. He is with UTMist here in Houston TX.