painful oesophageal achalasia

I don't think I can help much but I was sorry to read of your son's problems and to see the lack of replies. I used to have severe achalasia but had Heller's myotomy 28 years ago, which greatly improved my swallowing. I sometimes get acid reflux at night. However, keeping my weight down and not eating just before I go to bed help. When does your son's reflux occur?

Thank you for replying. My son's reflux happens as soon as he is awake from having the dilitation and then it comes and goes throughout the days and nights, and this lasts for 3-4 weeks which then he gets a couple of days break then has to go through the whole proceedure again. He has had so much time of school and having a normal teenage social life. He has now been given a 2 month break to see if the pains go, this isn't working and the pains are still there. It's just horrible watching and not being able to do something about it all.......

I have recently been diagnosed with Achalsia. After reading comments on similar sites, I found many people go undiagnosed for years (it seems mainly in the States). Luckily, the consultant I had leads on this in the UK and has recommended an op. It seems the dilatations work for a short while in most but usually an op is then required. The problem is that due to the scarring of the previous treatments, the op is trickier and the outcome is not as good as if it was carried out without previous interventions. Now I realise I need to be careful, as everyone is different but I've also researched a lot of medical papers and they bear out my comments. Is there a reason they don't operate e.g because they want him to 'grow a bit' first? Do you have confidence in your medical adviser (he doesn't seem to be advising you why they're taking this path - a bit vague too)? You can always ask for a second opinion and don't be shy asking loads of questions. I wrote all mine down. Really hope you find a solution too. PS I haven't suffered any pain, just regurgitation mainly, yet the op was deemed to be the best option

Hi Mandy,. I dont know whether or not this will help your son but I will go on my own personal experience as a child suffering pain with acahalesia. In my early years I used to take a product available from the chemist called Asilone. It was available in both powder and tablet form, the powder you mixed with a small amount of cold water. If you read through the forum my account is headlined "Am I the longest sufferer on here" but Im in the minority regarding treatments since Ive never had any form of medical proceedures carried out. The pain I endured was always in the area just under my breastbone and I know it was the result of me forcing my food down with water, the payoff being trapped air resulting in severe indigestion. It was at times extremely excruciating. Of course I have no idea how serious yours sons condition is and whether or not his pain occurs in the same area. Likewise it is difficult to know from your posting what procedures your son goes through to help his food go down. As has been suggested so many times with Achalesia it can effect the sufferer in many ways and what works for some will not work for others.

regards Mike

To Maz and Mike, thank you so much for your concerns regarding my son. Every month he has a balloon put down his food pipe to try and stretch it out, this only works for a period of 2-3 wks. He does have the option of the operation, however in saying that, he has still yet to grow, so he will have to under go a few ops before he can have a life without so much pain and so much water. His doctor is a good one, but they are quite baffled in wy my son is suffering so badley from these pains. He looks like he is going through a heart attack everytime. It's so distressing to watch a young boy go through so much suffering and not being able to do anything much! We are in the hospital more times now than at home. I 've done some research on the Hellers op, and I've heard some people say that it has made things better, but there are the cases where it hasn't!! We have to trust in Our Lord and hope and pray that salvation comes for my son. Thank you again, it's good to hear other peoples stories, it makes my son feel that he is not alone.

Mandy.

Hi Mandy, really sorry to hear your story.

You might find this useful ....

Before I had the Hellers operation (10 years ago) I too was suffering similar symptoms ... pain when eating, pain at night.

I decided to carefully study the foods I ate and drinks I had, recording, what and when. What became very apparent, and is still true today after the operation, is that certain foods caused pain even up to 2 days later. For me, fried food causes pain, often as soon as I try and eat it but also anything up to 24 hours later. The worst food is chips (fried potatoes).

You might find this a useful excercise (although I'm sure there are experts that will say it makes no difference, it absolutely worked for me).

In addition, I always have cold water to hand, the colder the better. When the pain strikes (either when eating or when in bed at night) I drink ice cold water to alleviate the pain. It works for me.

Hope this helps. It's not a pleasant condition, expecially for a 14yr old boy but something that can be dealt with, you and he just have to work out how.

Kind Regards, Richard

Hi, What medicines have they tried your son on? There is evidence to suggest that dilatation works better in people aged 40 years plus, as the bodies healing ability slows down.

I was diagnosed with Achalasia in Oct 2010 after 9 months of tests and a total weight loss of 3 stone.. I was 33 years old at the time. I had suffered with Gastric reflux for approx 16 years prior to this, which was treated intermittently with acid regulators when things "flared up".

My GP was a waste of time, would not prescribe me any supplements, telling me that I needed to eat a high fat diet, pork pies, pasties etc, even though I was telling her that I could not swallow. It took her 2 months to refer me to see a specialist, but only after I threatened to report her for patient neglect as she wasn't listening to what I was saying.

My consultant was brilliant and had queried this diagnosis from the onset, mainly as I could describe my symptoms so well, but needed to rule out other causes first

My symptoms were so severe towards the end that I was living on a liquid diet of complan made with milk and then mixed with dry milk powder and hot chocolate to make 800 calories in just 350ml of fluid (on a good day this is all I could tolerate in one go, and could manange 3 drinks a day) however I could go 2-3 days with not keeping anything down.

I had a balloon dilation in dec 2010, and have been told that I need to remain on Proton Pump Inhibitors for the rest of my life, I take Omeprozole.

The reason for this is that it not only regulates the acid in your stomach but it relaxes the lower sphincter, therefore ensuring it stays open.. Achalasia is when the sphincter cannot relax.

It took me 12 months to regain my weight, and I have gradually regained confidence with eating, and now eat a normal and full diet. I find that drinking at least a pint of water with every meal, to help flush food through, and a litre bottle of water throughout the day, keeps everything clear.

I do occassionally get symptoms (food feels stuck and horrendous chest pain, usually at night) but find that sitting back, relaxing and taking a few deep gulps and then some water deals with the swallowing problem and bicarbonate of soda (a heaped teaspoon) in 200ml of milk takes away the chest pain in an instant, even if it does taste horrible.

Hi, my name is Yole, i'm italian, and I'm new in this website. I'm 47 and my Acalasia story started 5 years ago. I had 3 dilatation in 2 years,and last November a Heller Myotomy. Of course my medical process before dilatation and operation was bean similar at yours stories, so I know exactly what you all are talking about. My condition supposed to get better after Myotomy, although I must admit that to get back a nearly regular life after this I needed near 3 months. Now my problem is another one : to know what's the next step after Myotomy.

I started to eat near normally ( it needs anyway some cares about kind of food to eat and the diet to follow, always) and I put on several pounds very quickly, I was 43 kg for 165 cm high, before first dilatation, now I'm 65 kg). I told ''supposed'' before, because my life will not be 'never again' the same as before, anyway. The sphincter and always open so even if I use to sleep on an edge of 20 cm ( pillows are not good especially for back pain), I traced the rising of acid from the stomach during the night and wake up 10-15 times a night to drink water. No more Gym or any kind of activity in which it needs fold, jump, pull or lie down. Very limited jogging because Omeprazole ( and all the others similar medications) give me terrible pain and swelling in the legs. No soft drinks, no alcohol, no smoke, no fried foods, no sauces, no pastries ( too heavy to digest), no chocolate, no coffee, no black tea, no hot spices, no drugs. Otherwise the acid level into the stomach rice up quickly with all the disconfort and pain we knew.

So at this moment I ask my self why I'm still got terrible pains in anytime (doesn't matter if day or night), without any apparently good reason? why my pain when comes up is so much terrible then before? It starts from the middle of the stomach, rice up by breast and shoulders and now take me also nerves along neck, teeth and sides of the head. What's going on? I spoke with my doctor and he told me that it's all right and in some cases happen this too. But i'd like to know why. Is there anyone who is living with my same kind of problem? Thank you so much for your time. Good luck to anyone!

Yole

Hi Mandy

I commented on this a year ago and had my op last June. I have to say, I feel wonderful. The op went smoothly - Heller Myotomy with Dor Fundoplication. The myotomy is a procedure where the outer wall of the oesophagus is cut lengthways to allow for expansion and the fundoplication is a wrap using part of the stomach to help prevent reflux. I was on a soft diet gradually introducing more solids.

As it was done by keyhole surgery, my recovery was rapid - didn't have any pain! Of course, I took things gently and so only had one day where for a couple of hours, I felt a bit rough. I had been out for friends for lunch (my first day out) and had pureed food but it was so nice, I probably ate too much hence why I later felt unwell. It's all a learning curve. I eat normally now but smaller portions. Chips and bread are the only foods which occasionally seem to stick in my gullet.

I exercise and do everything else just as I did before but I have done this carefully, allowing everything to heal and at first, taking it slowly. I don't need medication.

I have to say I had the utmost confidence in my surgeon from the beginning. The tests (manometry and barium meal) were conclusive for Achalasia even though I hadn't been symptomatic for long and only rarely suffered minor pain which I thought was heartburn and treated as such. Nevertheless, I'd probably had Achalasia for years so he recommended the op. If left untreated for a long time, the food remaining in the oesophagus can progress to a condition called Barratt's syndrome which can lead to even more serious consequences.

I don't want to be alarmist; remember the condition varies from person to person and I'm a fit 65yr old not a young teenager. All I'd recommend is that you research your consultant (I did it online) and ensure he has a lot of experience in this particular condition then if you're reassured, you can can be confident in following his advice. I really hope your son gets the treatment he needs so he can enjoy the rest of those special teenage years.

Good luck to you both

Maz

Hi Maz,

nice to meet you.

I'm really happy to know about your experience, surely better and easier than mine, cause I am happy to know there are people living with this illness also in nice condition. Unfortunately my experience is been absolutely painful since the first stadium, I don't know why, still continue on this way also after Heller’s, so not positive like yours.

I don't know if Mandy's son proceeded with Heller’s or still is holding on with dilatations, in any case is important to know if you have the Heller’s Myotomy when the oesophagus is still healthy and elastic the recovery will be short and easy and with a good general condition, which is very important to continue your life normally as you did before.

As I told you I didn't have a nice experience because my oesophagus lost elasticity very soon and at the second dilatation I already had a tear which is very dangerous condition.

For this reason after Heller Myotomy, I needed 6 months to heal completely the tear. The walls of the oesophagus are made of soft tissue and always wet then very slow to heal. Of course, the persistent inflammation cause continuously terrible pain until complete healing. After 1 year and 4 months since had the Heller’s I started with inflammation and severe pain in the sternum, in the middle of the chest, behind the shoulders up and down the neck and rise up to the teeth. I fear that the general condition of the oesophagus has worsened and more than anything I fear Barrett's Syndrome. So I am starting again in the short-term monitoring, ( I take part of group under observation to help medical research). It needs repeat endoscopies and tests to see what is happening to the internal tissue of the oesophagus. I'll keep you updated if this can help you especially if it can be useful to avoid mistakes and wrong procedures, and obviously, unnecessary pain. Of course I wish for all of you and especially the young Mandy's son all the best as possible. See you soon!

I am 69 years old and have developed achalasia over the past 20 years .It is extremely painful and I take oxazepam to relax the muscle spasm and tramadol and gabapentin for pain. I have tried amitriptyline but that makes me swell up. I live in a constant brain fuzz because of all the tablets I take.

There are a few questions I have:

Has anyone got extreme rib pain with this condition.?

I have to take cold showers as warm water makes me swell up and aggravate the rib pain. Does this happen to anyone?

Most important of all can anyone recommend a good specialist for this condition.

Thank you

Do any of you have experience with rib pain associated with this.? I have a 13 yr old daughter who has been diagnosed since last August. We have done the myotomy, and just recently the dilation because

her symptoms were coming back. She has had "rib pain" since January of this year. Our GI doc is

insistent that it is unrelated to her condition. I am not in agreement. This didn't start until she

Had the first procedure. Also it has steadily progressed to the point her pain scale is at a 10+ and lasts anywhere from 20 min to a couple of hours the GI were unhelpful but our GP was. He is working with us with calcium channel blockers and pain meds to help her deal while we find some more help. Has anyone had this

Problem?

Hi Jennifer, nice to meet you.

I am very sorry for your daughter, 'cause she is so young and have to face so hard experience in her life!

I think doctors they already told you that Acalasia condition is not temporary, unfortunately, and it can develop more or stay dormant for a while, but after a while start again in another point, making life harder to anyone have to face this illness. Perhaps is your daughter case. But many doctor who never had face this illness before in other patients can not tell you about all the others problems going rising up beside.

Just to let you know, personally discover my Acalasia 8 years ago, after 3rd dilatation had a tear along Esophagus so needed to have a Hellers Myotomy, but unfortunately it did not stop there. Since at the first it is been extremely painful and insidious especially at the nights. When I was lying on the bed the acid reflux rice up by the esophagus and by the throw making 3 dangerous problems :

Problem 1) Along the time develop a the chronic inflammation along esophagus walls with terrible burning feeling and very hard pain in the chest all the time, plus the ugly sensation to have a hard piece of wood in the chest which press up all the nerves from the chest along the neck till the temples. ( Seriously I wished to die in that moments just to stop to feel that terrible pain)

Problem 2) The acid which ascend up by esophagus leaks down in the breathings channels, arrive to the the bronchial site and inflame all around giving chest infection ( I already took 3 in the last year), hoarseness and aphonia in the voice ( I was a professional singer and I lost my voice on this way, I can not profess anymore ).

Problem 3) The acid in the mouth along the time destroys tooth enamel, making teeth weak, painful, inflamed gums and creates sores on the walls of the mouth ( because of this I needed to devitalize 10 teeth in the last 3 years). Now I lost my teeth whiteness, brightness and the original shape.

Well, the image which I gave you is not great I know, but more you know about, more you can prevent and help better your daughter in the future. She is so young and despite the case she needs to enjoy her life like all the other teens like her.

So as you see the most important problem is how neutralize damage by acid reflux.

By my experience I can tell this : For a while she needs to continue to eat light soft food and drink a lot, first to help food to slide down easily and avoid sore especially in the narrow points, second, water dilute acid in the stomach with less burning sensation. I know now after a Hellers she's going to feel like a overflowing barrel every time she full up with water. Time by time she will learn which one is her limit with small portion of food and water at time.

Essential is avoid all kind of food which can rise up likely level of acid in the stomach : like, coffee, black tea, chocolate, cocoa, soft drinks, sauces, spices, candies, fried, cooked fat, citruses, sweets and salty snacks. Eat at the least 2-3 hours before go to bed, slip on a anatomical edge under her back ( around 15-25 cm in the highest point ) to avoid night reflux, and keep a bottle of water beside bed all night.

I know at the first for her will be like a punishment not be able to eat chips or chocolate, by time by time she will understand her needs and she will stop to complain. Eat regularly every small amount of food every 4-5 hours, or split normal quantity from 1 meal in more smaller meal. So stomach not overwork, not overfull of acid and reduce the risk of reflux.

Slip enough, not less then 6-7 hours par night. Tiredness rise tension and tension accelerate acid production.

Another point is EMOTIONS. Living strong emotions or stressful situation rise up the level of acid in the stomach with all the consequences of the above.

Adrenaline and tension favourite the hardness along Esophagus and Acalasia get worse more quickly.

If she use to practice a competitive sport, she needs to chose with something more quiet and less adrenaline.

As I told you before my personal experience is been very hard and painful. After every dilatation I needed 2-3 months to calm down the pain enough to be able to slip a normal night and go to work the day later normally, and not like a zombie. After myotomy did not get much better the pain but at the least I am been able to feed me near normally. At the first blendig every food with a good amount of water, later eating soft normal food but chewing a lot at every bite. Before I use to take a lot of painkillers every day and night, and some times did not worked at all, so not able to work, not able to study, not able to sing, not able to go out with friends to enjoy life a little, not support from NHS. Just me and the bed for some months after every surgery. I was tired and frustrated, at some moment desperate 'cause nobody was able to help me enough to have back a normal life. So I decide to help my self as much as I was able to observe my body, my physical and mental condition. A very stressful life, linked me to this tunnel of agony, so I realized the only way to get off was find the way to get rid from all kind of stress situation in my life and start again in another way. I started to practice yoga and then meditation. Finally, suddenly, my life started to change in better. I was more quiet especially inside, more aware what my body was asking me time by time, and at the same time more relaxed. Finally I reduced my painkillers, day by day, dose by dose ( my GP followed me all the time in this challenge). Now I quid painkiller use, except before menstrual period because as you know pre-menstrual syndrome give unwitting tension. This tension create hardness in Acalasia and then strong pain in the chest for 3 to 5 days before menstruation come. Later calme down again and leave me alone. I could not sing any more, I found a job not competitive, with minimum stress, and stay far away from every kind of tension.

In some way I just accepted my condition quietly and this had gave me back my life, even if I need to live together with my Acalasia for rest of my life.

I wish my story and my tips could be useful for you and for your young daughter and help her to get rig from the pain as soon as she can. Life like this especially for a teenager is not fair at all, and people around her suffer with her too, of course. I know that very well.

For any other information you need, if you trust me, please do not esitate to contact me.

Good luck!