Botox or POEM?

Posted , 6 users are following.

Botox was not a cure all, but it did help relieve some of my symptoms. Spasms are back in full swing and so is my regurgitation. Can't sleep due to choking on my own saliva. Gastro told me yesterday she is recommending POEM. I also have a swallowing disorder, so I am not sure this is the route to take.

Any thoughts on a 2nd round of Botox vs surgery?


0 likes, 20 replies

20 Replies

  • Posted

    i was told by gastro that botox actually makes surgery more difficult. Don't know why though. also seems only short term relief perhaps.

    • Posted

      Thank-you. Obviously, my gastro didn't mention this. Have you had any treatments which were successful?

    • Posted

      Take domperidone 5 mg 10-20 minutes before eating. Pantoprazole 40 mg once/day. Need to be sure sitting very straight when eating or drinking. But still careful of what I eat....beef, certain breads, salads are out. Lots of soups, meat pies and liquids generally. Generally soft foods. Plus Ensure once a day.

  • Posted

    I have the same issues and had the POEM in 2015 and it did not help at all. My symptoms are so bad now that is impacting my ability to take a deep breathe because of the spasms.

    • Posted

      One of the things that is recommended is a follow up after surgery and other procedures, so you should definitely consider returning for an assessment.The spasms are sometimes caused by reflux, sometimes by an impact on the nerve system, and sometimes they are just unexplained. But, on the basis that there is a possibility that reflux could be to blame, it would be prudent to seek advice regarding medication. Meanwhile you might try Gaviscon in fairly liberal doses as this can be bought over the counter and works differently from other antacids and PPIs like Esomeprazole. Try sleeping propped up at night.Try some form of relaxation therapy. A lot of this will be trial and error. The deep breaths might be creating some form of pressure on the lining of the oesophagus but this is something that you will need help with because it is a big health issue. There are some medications that may be able to help with spasms like Buscopan. You definitely need some specialist advice pronto.

    • Posted

      I am so sorry to hear your symptoms got worse. It was my pulmonologist who sent me to a medical university to see a specialist in esophageal disorders. Have you tried any meds for the spasms?

      The first time I got Botox my GI doctor used too much and I had really bad reflux. It finally settled down. My fear now is the POEM will be permanent and the reflux may never go away. I could end up with regurgitation, spasms, reflux and a swallowing disorder.

      Have you tried isosorbide dinitrate or a calcium blocker for spasms?

      The nitrates help me some.

      Thanks for answering.

  • Posted

    I think you need to be assessed by a surgeon before doing anything else. It needs a thorough diagnostic process to clarify exactly where the issues arise in your oesophagus. Botox is a simple procedure but it is not unusual for the benefits only to be short-lived. It is normally better to go for a proper solution, that may well involve surgery, straight off because the surgeons would say that if the oesophagus has been stretched by dilatation / botox a number of times the surgery is far less straightforward. So the idea of gradually escalating up the ladder of serious interventions may not be the best long term.

    If you have achalasia, this may be the cause of your swallowing problem and the surgical procedure may well relieve it and the need for regurgitation. It sounds urgent in your case. The general results from well-trained experienced surgeons are very good.

    Spasms are more difficult. There is a poll on the Achalasia Action community on HealthUnlocked which indicates that spasms can sometimes continue after surgery. But some people say that they are improved or different and not so intense afterwards.

    • Posted

      My GI is a surgeon. I've had multiple, tests including the Barium swallow, the PH Manometry, and others. I was told I had a esophageal motility disorder, a swallowing disorder and esophageal spasms. My doctor has done made two separate dilation's, and then the Botox.

      The Botox gave me reflux at first and nothing stayed down. I got so dehydrated at one point I had to get IV fluids. Once it settled down I was able to eat and drink as long as I was careful and followed certain rules which I had learned from experience. I don't eat or drink after 4:00 pm this way I do not regurgitate as much at night; just my saliva.

      At my last appointment my GI looked at me like I was an alien. After some awkward silence she recommended POEM surgery. She wants to repeat all of the tests I have had before prior to surgery and can't promise I will be better.

      When I asked about Botox again she wasn't sure whether that was a good option. She is suppose to be a specialist in the field of esophageal issues. ?????

      Have I climbed high enough to warrant surgery, or should I try Botox again? I currently travel 3 hours one way to see this specialist.

      Thanks Allan.

    • Posted

      I do not think it is a bad thing to repeat the tests, depending on how long ago they were done. There are motility disorders that are not achalasia as such so the description of the diagnosis may just be being technically correct.

      Surgery does seem to be easier the fewer interventions that have taken place beforehand like dilatation and botox. Also, if you had a bad reaction after botox before, perhaps this might be repeated if you have it again?

      I suppose this is also an issue of how much you trust your surgeon's judgement. The recommendation for treatment may be technically sound even though on personal communication the conversation was not that good.

      You could try a second opinion.

      If you feel that your symptoms are reasonable enough to live with, and you have come to terms with how careful you have to be with eating and drinking, then I can sympathise with you if you thought that you would want to go longer without surgical intervention, and just wait ad see what happens. There is not a cure for achalasia as such; the treatments cut the muscles to ensure that the lower oesophageal sphincter is sufficiently relaxed to allow food to fall into your stomach through gravity and whatever peristalsis you may still have. So you will still have to be careful about eating whatever happens.

    • Posted

      Good advice Alan.

      Previously, I had seen two GI doctors in my local town. It wasn't until I began to have serious pulmonary issues that I was referred to a major medical center. The doctor I first saw was instrumental in the creation of the pH/Impedance and manometry. MUSC is a teaching hospital.

      Unfortunately, he retired after our first encounter and I am a patient of his understudy.

      During the first barium swallow the pill got stuck and they had to end the test. That was at least 2 years ago.

      I am assuming, people diagnosed with achalaisa have undergone the ph manometry test to confirm their diagnosis. I agree I should repeat this very uncomfortable test. The test I did required a tube in my nose for 24 hours.

      My doctor also wants to repeat the esophogram. I think I understand her reluctance to repeat the Botox injections, now that you have explained how this may cause problems with future surgeries.

      She just always looks at me with this puzzled look when we meet. I sincerely appreciate your time and advice. Staying hydrated and maintaining the proper nutrients have been one of my biggest concerns of late.

      There is much to consider. I will begin with retesting. Thank-you Allan.

  • Posted

    Hi Donna,

    I don't really have any specific advice re Bottox, but just wanted to say Hi and wish you well.

    There may be something in the achalasia handbook; its 39 pages long!:) If you google 'achalasia action charity' you will find it on the info hub page...

    Warmest as ever,


    • Posted

      ...Further to Alan's... I thought I would add that I am waiting for a Hellers myotony. I think it is fair to say that the attraction to poem seems to be the fact that it is seen as less invasive. I do know that poem relies on having a fairly straight section of oesophagus to work with, so is not suited to all. Some interesting poem vids on youtube.. A Hellers is done laproscopically so is still fairly non-invasive. The operation can involve a wrap to reduce gerd post op. POEM does not offer this...

      Do have a look at said booklet! I would also ask yr Doc why they recommended poem; and see if that sheds some light on the situation...


    • Posted

      Hi! I had the Robotic Heller Myotomy last October 25th. I have 7 scars but almost invisible now. Over all it hasnt been the best decision but I can say it improved the regurgitation. I have to eat smaller meals and chew very well or its not going down. The travel time for the food is still very slow so I stopped stopped taking omeprazole but keep it handy as I do get the occasional heartburn. I only stopped taking it because it seems like it gets stuck for a bit before I eat so food gets stuck. Just a learning process I guess. Breads and dry meat such as pork or chicken breast are tough to eat. Soft foods no problem. But before the surgery I coundnt eat or drink even water without regurgitating. Im pretty sure I had pneumonia before my surgery but was diagnosed over the phone with bronchitis. I had a botox injection 3 months before my surgery. It worked so well that I wasnt even waiting for my surgery anymore. But anyway the surgery isnt perfect but it helps for the most part

    • Posted

      Thanks Carol.

      I can't eat bread, beef, or pork. Fish is soft enough. This is a hard decision to make. Surgery sounds so permanent. Currently, I'm regurgitating everything and feel tired and very dehydrated; including water.

      My doctor has prescribed Isosorbide dinitrate for the esophageal spasms which help, but leave me nauseated.

      Wonder if I could just keep getting Botox forever. Hmm...

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