Type II Achalasia- Anyone self managing without surgery?

Hi

I started struggling with swallowing in 2009. It steadily got worse until in 2013 every time I eat it would bearly go down. I saw an Endoscopy specialist and luckily for me, he was very experienced with knowing the signs of Achalasia. He referred me for tests ( manometry ) and that confirmed his diagnosis. At this stage, we discussed the options of dilation. Botox, HM , Poem. I decided to go with Botox while I considered the options in more detail. I responded well to Botox and go between 9 to 15 months before it wears off. In this period I have seen a HM consultant and a POEM consultant. At this stage, I self-manage with a the Botox top up when required.

I eat quite slowly with a few sips of water and this works. I read somewhere that dark chocolate (70% Cocoa ) relaxes the oesophagus and I eat half a bar each day. I am 70 years old and if I can continue to manage this way I will for the rest of my life.

We are all different and your age could have a bearing on which route you decide to take. Don't forget it your body and your choice. Good luck with whatever route you decide on.

There are people who manage on the basis of not having surgery and having a dilatation every so often.   It all depends on how serious it is.   You do need to watch your general health and nutrition levels, not to mention general quality of life such as an ability to eat meals with others without regurgitation and so on.   

?You can alleviate symptoms to some extent with relaxation, avoiding tension and possibly some medication (eg Buscopan, nitrates etc) as well as being very careful about what and how you eat.

?But aside from the above, it will probably not getter of its own accord, and to some extent, the longer you leave it, the more your muscles get trained out of being used, and the more strain will accumulate on your oesophagus.   If it gets really serious, the surgical options start to reduce.   It is not unusual for people to try a dilatation or botox as the first step to see how things go, but repeating these procedures frequently can be counter productive.   There is a health prize for getting a real thorough diagnosis and substantive treatment as early as you can.   

?There is a booklet 'A Patient's Guide to Achalasia' that you can download from the website of the Oesophageal Patients Association under The Oesophagus and Achalasia.

Good luck with it!

Jdbax: Hi. I too would prefer not to have POEM and refuse to consider the HM. Specifically, due to the results but if we were to think about both the surgeries. They are palliative (they help for a short time but do not treat the cause so I am thinking we have to work with the vagus nerve since it controls the swallowing. The problem lies within the esophagus enlarging.

I'm not sure really what to do but am scheduled for a POEM in January in Brazil. In the meantime, I am practicing Qi gong, meditation, yoga to have my parasympathetic and my sympathetic nervous system work better together.

Stopping the fight or flight issue and the improving the rest and digest nervous system.

Anna

Thank you all for the great advice and information. I am 57 y/o and thankful for the years before without digestive issues, but hopeful to live many more years with A. I really feel for the young people with a lifetime dealing with it. Good to see some ongoing clinical trials to help others down the road. My diagnosing doctor in Dallas said that he believes the diagnosis is more common than current statistics.  It's been an interesting journey for sure. When I do decide to have the surgery, I will go to Mayo or Winthrop or one of the bigger facilities with much experience for such a complicated procedure. In the meantime I will try some of the things you all suggested and keep doing a ton of research. So thankful for the internet and the resources available at our fingertips! I may have more questions after "digesting" all of your comments! Kind regards.

Your symptoms are similar to mine. Mine stayed the same for ages then got worse in jumps, until I was on 500ml of Gavascon every week and even that wasn't helping. I had POEM treatment 5 weeks ago and so far it has been a bloody miracle!

I have a blog on here which I'm updating regularly.

https://patient.info/forums/discuss/achalasia-and-poem-treatment-in-uk-619741

If your GP Doc has recommended HM then it would be best to be referred to a specialist asap. As someone who has had this crap for a Really long time, I wouldn't want to go through it again.

All the best.

Started having trouble swallowing with lump feeling in throat 1 1/2 yr ago. Found thyroid nodule 7mm. 3 weeks ago had trouble swallowing again. Was just diagnosed with silent oral pharangeal disphasia 2 weeks ago. Had a barium swallow and egd done. Local ent feels it is being caused by my reflux disease. I was referred to have the fundeplication surgery 2 years ago. I opted out. My father had the sugery 9 yrs ago with no sucess from a lical dr. Now my doctor is recommending me back to the gastrointestinal specialist to be re- evaluated for surgery. Had a biopsy done during egd. Haven't heard anything yet. Hoping it has not progressed to barrets. Also have a thyroid nodule 9mm, found a yr and half ago, which has not been biopsied. Needs to be addressed in this situation. I have been on acid reflux prescription meds for 20 yrs. I do believe I have hit the end of medicine and food management. I hope u can keep treating yours without surgery.