After nine years + of heartburn, painful swallowing, regurgitation, choking etc I was recently diagnosed with type 2 achalasia. I was prescribed domperidone & nefedipine which I later discovered was not very helpful as apparently they have contadictory effects. I have now stopped both. I found nefedipine had me running to the lou all night although I did not realise this until I stopped it. It also lowered my blood pressure so that I often felt quite giddy.
I have been offered balloon treatment but have put this off as I was knocked down by a car a year ago & have had major surgery. I feel I can't face any more pain etc.
My achalasi is getting worse & I feel I will not be able to eat at all soon. It is very paiful to eat & the food stacks up until I feel panicky that I will choke. I understand from the consultant that the ballon treatment will help with the swallowing but not with the regurgitation & heartburn. Regurgitation is a big problem as I wake choking & sometimes my trachea goes into spasm which means I cannot breath at all.
Has anybody had the ballon treatment successfully? Do the effects last?
I feel very depressed about the whole business .
Hi there,
Try to thnk positive and not get depressed, I always think there are people out there wth far worse things!
I have been diagnosed for about 8 years now, and I quickly had a balloon dilatation. I am still relatively ok, and can manage to eat pretty well most of the time. I do cough again now at night but after 8 years i dont feel that is too bad, I am part of a meetup group for Achalasia and we meet in London every month or so if that interests you.
I hope you get relief soon as there is lots of help out there for us Achalasians!
Hi
Thanks for your positive reply, it's encouraging
Have you not been asked to consider surgery? I had a myotomy in May last year and life has changed completely! It is not painful and neither is the recovery. I can completely relate to your current state as I was unable to eat and had severe swallowing problems. I got the impression from your message that surgery is not currently possible. Why?
I also have type 2. I had a myotomy and things are much better - I still have to take tables and there has been a major life stye change - stick with easy to swallow foods - rice pudding is great - and consider taking nutrient rich food drink supplements. Swallow small amounts at a time, and wait for it to go down - never gulp. I avoid things like chips and bread, but can eat these if I eat small mouthfulls at a time. Soup is also very good, as is pasta if it has lots of sauce on it - the surgery really has changed my life although it was very painful
Hi jardin,
I'm in the same situation like you. I have been suffering for past one year and diagonised with Achalasia type 2 , six months back. I have severe burning sensation in my stomach , burps which brings my salaiva to my mouth which is stagnated in my esophagus. Apart from this I also experience night time chest pain. I'm on esomeprasol 40 mg twice a day. I have undergone a balloon dialatation (30 mm)which was insufficient, my doctor is advising me to go for another dialation(35 mm).I'm planning for it now, I read many articals dilatation can be compared with surgery and the results are excellent. And I say ,
1.Take a PPI it helps in heartburn after consulting with your Dr
2.Elevate the head rest of your bed to 6 inches, it helps a lot in back flow of gastric contents.
3.Have your food 3 hours before sleep, don't drink water before 2 hours . it really helps to have a good night sleep.
4. Avoid spicy foods especially for dinner.
5 . plan for the treatment asap, balloon dialatation is a also a good option i read many people were treated successfully. It is a very simple procedure same like your endoscopy.
There is a page on Achalsia on the website of the Oesophageal Patients Association under Oesoaphagus.
Also google Meet Up groups for Achalasia.
The balloon stretch will relieve the toghtness of the valve between the oesoaphagus and the stomach. I know how you feel about surgery, but this would be done endoscopically - it is like a miniature tube inserted down your throat with a miniature camera attached. I had had three operations and had been in hospital for 10 weeks so I was worried, but I had a sedative and did not feel a thing.
It is true that having a stretch may not be a permanent solution for a number of people; and that the looser the sphincter valve between oesopahgus and stomach the more you have suffer from reflux, but the effects of stale food fermenting in the bottom of your oesophagus will be a worse problem.
So my advice would be to follow the guidance from your doctors and have the stretch, but with a realistic view that you may have to retunr after a few months for a more permanent solution. The sooner you get something done about it, the better.
Hi Nithyam
Thanks for your reply. I am also taking 40mg Esomeprazole twicw a day but still get horrendous heartburn sometimes. I do all the things you suggest and they do help.
I have been putting off having the dilatation but your comments reassure me although I don't think they help with the heartburn or with the regurgitation. I will have to have it done though as eating is now so difficult & painful
Cheers
Thanks very much AlanM your reply was very helpful.
Thanks for your helpful reply Jody76982. I am not sure what a myotomy is but will google it. I imagine it's surgery. I have initially been offered a dilation which is done with an endoscope.
It is surgery and mine had 2 aspects - part of the oesophegius was removed to make swalling easier, then the sphincter is permanenty opened by wrapping it around the stomach. It was painful, but it really is so much better now. I hear a lot of people have had success with dilation. The problem is that due to its rarity, there are only a few specailists in the country but you shoudl be asked to be referred to one.
The surgery is to do with adjusting the valve at the bottom of the oesophagus and the top of the stomach so that it no longer clamps shut. I think it involves cutting the muscles so that it is much more relaxed and lets food pass through OK. The 'wrap' involves stapling / fixing part of the top of the stomach around the bottom of the oesophagus to ceate a natural valve to prevent the stoamch acid rising (reflux). There are variations in relation to how far round the oesophagus this is done.
These operations are done at centres for Upper GI (upper gastro-intestinal tract) surgery and ot does indeed need a specialist to do it.
Hi Jody76982
Thanks for the information. It is not something I would have done unless I really had to. I will try dilation first & hope it improves things. I am glad it has worked well for you. If I do ever have to have the surgery I will be sure to ask to be referred to a specialist as I din't want a botched job leading to more problems
Thanks
Thanks OPA_AlanM
I really appreciate you taking the time to explain the op to me. It is not something I will rush into as it sounds horrid. It would be a last resort I think
It certainly is not a thing that you would want to do unless you had to, but you also have to think that the longer you leave things, the more your oesophagus gets slacker, and if it ends up getting baggy, this in itself can close off options for getting it properly resolved in the longer term. So you are quite right to find a good specialist and be guided by their advice.
Thanks. This is obvioulsy something I will have to think seriously about. I have already had this , undiagnoed for about 10 years & it is getting worse
I have only recently been diagnosed after suffering for about 10 years. I guess they want to try the least invasive treatment first & if that doesn't work go on to surgery. I am certainly in no hurry for surgery if the ballon endoscopy works.
HI Jardin, like yourself i had all the symptoms. I was only diagnose with dysplagia and gerd for a number of years, then i saw a mystery diagnose show and told my GI doctor about it, so i was diagnose with Achalasia. I took every meds you could think of, including the ones you were taking, those only acelarated my heart and made me very agitated. I went to multiple doctors and tried everything from acupunture to chiropractic, ayurvedic oils & herbs, nothing helped. When i started loosing weight at least 5 lbs a weak and was always tired and dehydrated, not to mention afraid to eat out in public. I hardly slept, i went to see GI doctor who knew a physician that did POEM surgery. I went to see this doctor, and spend 3 hours with him, and booked my surgery the same day. 2 weeks later i had the surgery. The preparation was not easy, especially i was angry and depressed at the same time, how i got this illness, no one i knew ever heard of it. I work with a team of close to 50 providers, when i finally approached a few of them and asked if they had ever seen a patient with it, their answer was no. 2 of the providers who are close friends was very supportive all the way and read and advised me on everything i needed to make a decision on. Please look into having the POEM surgery. It has changed my life. I gained back my weight, i can sleep. I do not throw up anymore. I take 40 mg of Pantoprazone SOD twice a day, and have learned to change my diet, eliminating spicy food, and fry food, which was very difficult. I have gained my life back. I still have to do a upper endoscopy, and a bravo ph testing where a capsule is placed in your esophagus and data collected for 2 days and a manometry done. i was scheduled for these on 1/13, but the capsule malfunctioned as the procedure was to start, so it was cancelled, i am waiting to have it rescheduled. I was a bit depressed this happen, so i went on line a found this forum. I am happy to find that i am not alone, but sad that we are all suffering with this condition. From lots of the blogs i have read, patients have been able to have an active life where they do the POEM, dialation, botox, heller myotomy or balloon dialation. Which ever you choose, i wish you the best. Do not get depressed, there are treatments and with the internet there are a lot of successful stories out there. I hope this helps.
Hi wendy83249
Thanks for your reply. It is good to hear from other people who have achalasia because those who don't have it have no idea of how horrid it is. it is difficult to get a diagnosis because I think it is rare & so doctors may not have experience of it and just go for the obvious GERD. I asked my consultant if there was a known cause for achalasia but he said 'no'. I am pleased you are doing well after your POEM. I do not know what that is. I have just been offered a ballon dilation but am even reluctant to have that done. I will have to though because I have real trouble eating & am losing weight. I feel very depressed that I cannot enjoy food as I used to.
Hi Jardin,ask the consultant on p.o.e.m surgery and research it. It is gaining recognition world wide, it was developed in in Japan. Its is a 8 hour surgery where all the muscles are cut inside the body.