Hi all. Thank you for taking time to read my post. I’m newly diagnosed and trying to figure out the options. Must have caught this fairly early as my symptoms are manageable with smaller meals and not eating within a few hours of bedtime. I have nighttime or early morning spasms but they quickly go away with burping and\or gavascon. Although doctor has recommended HM within six months, I’m struggling with surgery option after reading so many negative outcomes and wondering if it is prudent to wait and have tests regularly to monitor esophageal dilation (minimal at present). Thanks for your thoughts. I’m especially curious to know if anyone at my level of illness is self managing and for how long. I know everyone is different, but I appreciate your thoughts and feedback. Maybe I’m missing something. It’s also difficult to explain to family who don’t necessarily see me struggle with eating that I need surgery. Five years ago, I only had trouble eating fruit. It has progressed to other foods, but again, manageable. Thanks again.
Hello....I, too, suffered for a long time before finally having the surgery. I had symptoms in my early 20's, but just dealt with them. They finally got bad enough that I went to see a specialist who diagnosed me with Achalasia and suggested HM surgery with dor fundoplication. I had the surgery in 2012 at the age of 40 and though it helped some, I still have symptons and was diagnosed with Barretts Esophagus Disease last May. I think it's truly your choice as to whether or not you want the surgery. It depends on how bad your symptoms are and how advanced your achalasia is. Go with your gut! Best of luck!!
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.
I managed for about a year and a half but symptoms have got increasingly worse. Solids and liquids are problematic and my esophagus is getting baggy. I made the call to have the HMw/DF surgery and am scheduled in the morning. I wish you the best and agree that monitoring how you are doing works for a bit but if things change, be open to surgery.
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!
Hi JoyAsh,
May I ask if the Barretts was due to acid reflux, or just irritation caused by foodstuff pre opp? Or of course unknown... Like you, I have put up with A for decades, and am always considering Surgery...
Hi Jdbax,
I have managed untreated A for a long time and I know others that have too. I learned to adopt a movement to aid swallowing, that involves breathing in, raising my arms or shoulders and gently forcing down with my diaphragm. I even saw it work during a Barium Swallow - confused the doc LOL... Plus I use Magnesium/VB and found that Calcium Channel Blockers (Tildeum brand) work well for me (prescription drugs of course). Meditation and acceptance are important to me too. None of these are a cure of course and need support from a GP at least. The risks of not having surgery are inflated Oesophagus (but that can happen quickly anyway) and of course worsening of swallowing. Bizarrely my actual symptoms slightly improved over the years, but I know that could still change. My gut feeling tells me that wont be overnight so am happy for now to carefully proceed... Biggest caveat on this site is always to have medical support in your decisions, but most people on here do take multiple medical opinions..
Healthy Karma to all..
N
N
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
Thanks for that helpful post.
Barrett's oesophagus is invariably caused by the long term exposure of the oesophageal lining to reflux. There are more details on the website Action Against Heartburn.
If the lower oesophageal sphincter is tending to be closed, there is less likelihood of reflux; but if the sphincter has been stretched, or there has been a myotomy (subject to how good the fundoplication is) / POEM, the chances of reflux are much higher, I believe.
POEM does take quite a long learning curve for the surgeons to be able to do it well. Both involve cutting the muscles and relaxing the lower oesophageal sphincter; it is just that POEM does it internally within the oesophageal lining and they can do it with an endoscope down your throat. I think that both surgery options would present a far longer (indefinite in time)solution than, say, botox or dilatation.
You are right about the cause, which seems to be failure of the nerve endings that drive the muscles performing the swallowing action / peristalsis. So when the surgery has been done it may well be gravity that is causing food to progress down into the stomach.
The vagus nerve does indeed control the digestion system, and it may well be the twanging of part of these nerves that cause spasms.
Many people do indeed find relaxation-type techniques helpful.
Hi again Alan,
(We met at the last Achalasia large group meet-up) ... I have heard medical advice (only from one source) re that lining damage from lingering food chemicals (for the untreated case) is a key risk; but I am yet to find anyone that has suffered that to any great degree; most seem to have suffered greater acid issues post op... Swallowing aside, it is just a point of interest, and relevent to the original thread, and my question.... Personally I avoid citric acid, caffeine etc, and drink plenty of water; I also chew double action gaviscon tabs as apparently they will neutralise food acids too... Nothing is simple it seems..
But grateful for the few positives and good days...
Best
Neil
As Alan has already stated, Barretts is normally caused by long term acid reflux which is the case with me.
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.
I have dropped an email to a Barrett's Oesophagus specialist and to our surgeon contact to gather what advice they may have on this point. My unqualified reaction, for what it is worth, is that pills and medication can cause damage to the oesophageal lining if they stick there and do not get passed into the stomach in the normal course of events (which is why sometimes medication taken in liquid or other forms / routes eg under the tongue / suppositories might be beneficial); and I imagine that some kinds of lingering food might cause irritation, or worse, also (eg very spicy food or something with a very strong chemical element.). I am not sure that the damage of Barrett's Oesophagus is entirely acid, in that there are other stomach chemicals that contribute to reflux (eg bile, pepsin), but I do not know for sure, but anti stomach acid medication is the predominant methid of treating these type of problems.
If food is fermenting in the oesophagus and is thereby creating a strong chemical reaction, then it would be logical that it could cause irritation and soreness / oesophagitis.
You are quite right that the reflux problems are predominantly post surgery after the lower oesophageal sphincter has been loosened. I would think that having Barrett's oesophagus at the same time as achalasia is rare but that is an assumption on my part.
It would be possible to test the food residue for acid content, but I suspect that a doctor would probably say that it is best to concentrate on getting the oesophagus to clear properly regardless of the chemical content of the food residue (I know this is easier said than done). It might be interesting to try to test your saliva or regurgitated food yourself. There are devices like Qimius test strips for pH testing that can be obtained fairly easily and inexpensively from Amazon or perhaps from pharmacists. You would need to be careful about conclusions and readings though.
If I hear back from somebody with a proper qualified opinion I will update this post.
Thanks Alan, very kind,
All makes logical sense to me; a very useful reply...
N
Alan,
Thanks for the information. Risk of Barrett’s and subsequent cancer risk is the reason given me for getting the surgery for Achalasia early to protect the esophagus (the “health prize” to which you or someone here referred?). The confusing part is that the surgery comes with risk of reflux and Barrett’s or lifelong PPI use. I don’t yet know that risk, although I do know some people are on PPI for life without Achalasia. I think likely the long-term PPI risk is less than the serious risk of damage to the esophagus and potential esophagectomy. Sort of rambling here (and I probably know the answer), but I wonder if it is possible to be so conscientious and careful of food chewing that it doesn’t get stuck. Or, to always eat several hours before laying down to ensure esophagus is cleared. This might be possible with Type II Achalasia where there is still some lower esophageal pressurization.
JBax
Yes... The whole situation can feel like something of a paradox. Obviously physical treatment or surgery becomes essential if one cannot eat at all; so those risks are fully justified - a no brainer I guess...
Just thinking out loud now: If however one can eat (albeit not perfectly), doesn't feel relux or aspiration, but has a risk of food irritation, then to me the risks/benefits of treatment/surgery seem to cancel each other out somewhat as acid then enters the equation (or a life on PPis if they work). Sorry, answering my own question now - I think a Dr would say every case is different depending on state/shape of the Oesophagus and one should have regular surveys. That I am sure is right, but just out of scientific interest I am yet to find an answer to the basic question re if retained food chemicals alone can cause Barretts or other issues. As Alan suggested an acid test may be the only way to tell, but I just wondered if there was any experience or data already out there to help this thread...Still thinking aloud I have heard of Alcoholics that get similar issues without acid reflux so I guess it depends on what one might put in their mouth. Probably only a Bio chemist would know what foods can cause the most toxic mixes, so maybe that is what is required..
Obviously ones own damage can be concluded by an Endoscopy/other tests, so it is maybe a pointless question; but I find it interesting, possibly for advising patients early on - pre treatment... See if Alan gets anything new from the experts...
Warmest all,
N
I'll let you know any medically qualified responses I receive.
As far as the health of the oesophagus is concerned, the priority is to be able to take in nutrition and to eat as well as you can for the sake of the rest of your body and, as far as possible, a quality of life. Then, in the longer term, trying to ensure that the condition does not deteriorate to the point where a) the better options for surgery start to close down because it has been left too late or there have been too many dilatations; or b) you have to have your oesophagus removed surgically, which is the ultimate surgical option that will not be relevant except to a minority.
Only, say, 10% of those with persistent heartburn / reflux develop Barrett's. And then, if one does develop Barrett's Oesophagus it is normally a very slow moving thing. Most people die with it rather than from it. The risk of developing oesophageal cancer from it are low. It is about 0.3% in any one year, and cumulatively, if somebody aged 30 years develops Barrett's there may be an 11-25% risk of developing cancer by the time they reach 80 years of age. It all depends on whether dysplasia develops or not. But being diagnosed with Barrett's and then being monitored, more or less indicates that any cancer is detected at an early stage when the outcomes are good. Barrett's can be treated with radio frequency ablation nowadays, so the prospect of automatically having the oesophagus removed when high grade dysplasia is found, no longer applies. There is an issue of uncertainty about which patients progress to cancer or not, and there is a certain amount of help from genetic analysis that accounts for some of the risk. PPI medication does, I believe reduce the risk of progression to cancer.
So thinking through all that, and all other things being equal, I do not think that one should worry overmuch about developing Barrett's. It is quite easily seen with an endoscopy, and can be addressed if and when it happens.
The worries about PPI medication are probably overblown. There are a lot of people on them that should not be. They do tend to reduce the absorption of calcium, so one might need to take countermeasures if one is worried about osteoporosis long term, an they can change the balance of bacteria in the gut, so there may be some issues around that, but if one takes them without immediate side effects, and has them reviewed every so often, it should be OK, and the benefits in reducing reflux should outweigh any disadvantages. This is the kind of risk that prescribing doctors should do with us.
So my instinct, with apologies for the long post, would be to concentrate on reducing the symptoms from achalasia as far as possible as the threat to health and well being is greater from that direction.
Thanks as always Alan..Good info for everyone!
I will digest (no pun intended and see if any further thoughts arise..
Warmest,
Neil
It seems there is a delicate balance between a) waiting until symptoms are bad enough for surgical intervention and b) getting the surgical intervention while the esophagus is "healthy" enough for the best surgical outcome.
Thank you so much for all the responses in this thread as it will be helpful to have things semi sorted when discussing further with my physician.
Best,
Jeannie
I'll tell you what gives me the worst kind of heartburn. Frosty types who can't imagine that not all peoples share their national lack of warmth and mistrust. The same types who must construe friendly interest as "surely wanting something" and respond with the deep-freeze of "ignore". Those who exchanged one organization for another and now can't start the day without a liberal dash of horrid illness in their morning cuppa. :-(