Achalasia Meeting

I would very much like to attend the meeting but not able to as my son, who is the achalasia sufferer is having a review endoscopy that day and I have to be with him. I would be interested to hear about what was discussed. For the record., my son was diagnosed with Achalasia when he was 10years old (very young to have this problem) and had three balloon dilatations to the sphincter. He's been struggling on with this until now (he's 24) and sometimes has good patches and sometimes bad. It seems to be very much affected by stress. He is careful with what he eats and avoids certain foods...difficult for a young lad! recently he has been having sore throats and has dysphagia and has gone back on Lanzoprazole which helps but we feel it is now time to look at alternatives. He was offered a myotomy and fundoplication when he was younger but the surgeon we saw had never operated on a child before and there were some hesitations owing to his age and would the surgery only last a while. Also we were told that once this op was carried out it would be very difficult to vomit (say in cases of food poisoning etc)...is this true I wonder? anyway, good luck to you all and I hope the meeting goes well and I am looking forward to hearing about the forum discussions.

I spoke to somebody at the meeting who had had the procedure and said that vomiting was OK (well, you know what I mean!).But there are variations in how well the 'wrap' is positioned, and this might affect things.

There are people aged 10 or so who have been diagnosed with it, and one of the medical papers put the age range involved in their study as 10 - 92!

The message I took away was that it is important to go to a centre where they are dealing with a good number of these cases (albeit they are rare), and you have to put up with the fact that appointments are regarded as non urgent as compared with cancer cases etc. Ideally they would do all three tests (endscopy, barium meal; manometry) because it is important to analyse precisely where things are not working, because that will affect what kind of procedure they do.

The condition does seem to be caused by damage to nerve endings that control the progressive wave of muscle contractions that pass the food down through the oesophagus, through the lower oesophageal sphincter (by the diaphragm) and into the stomach, so it would not be surprising that stress / tension creates extra pressure in the muscles that make the condition worse.

I think it might be worthwhile trying to get extra advice about having the operation whilst young. If he is not improving, perhaps the longer he is left, the more entrenched the problem becomes medically, but it is a technical surgical issue. Going to a centre where they have a lot of experience would definitely be worthwhile. The surgeon who gave the talk was Mr Majid Hashemi from University College Hospital.

I think that there is also a cross-over / collaboration on some kinds of surgery between surgeons who operate from Great Ormond Street childrens hospital but I do not know to what age that arrangement applies.

The great prize is to have the right procedure done well at the right time so that the maximum benefit can be obtained. There will probably always be a certain amount of compromise in eating / swallowing, but for some people it seems that after the procedure they manage things in a very acceptable fashion indefinitely, notwithstanding that their swallowing is not perfect compared to normal, and you can never rule out the risk of an element of deterioration.

Many thanks for the reply..I am really grateful for info. My son had the endoscopy and there was nothing sinister to see from that procedure other that affirmation of his condition. We were rather worried at the time as his syptoms were pretty bad. However now that the procedure is behind him he seems to be less stressed about it and is now managing to eat. It is incredible how stress can affect this! I think we will wait for the review in a few weeks and perhaps see if we can be referred to Mr Hashemi for advice. We are local to London so travel not a problem. Thanks for the onfo and I hope the meeting went well!

One of the issues discussed at the meeting was that stress is almost certainly a thing that makes it worse, so as well as the medical / surgical approach there is also another track of trying to relax with the digestion, and possibly lifestyle issues that can help. The nerve endings often do not drive / signal the muscles properly, so tension might make that worse. Easier said than done though!

Hello, I have not posted here for a long while now.

I was dianosed with achalasia in 2007 and have had a balloon dilation only. I have to be careful what I eat and how I eat - and I never eat when I am stressed - the food won't go down.

I am very interested in the meeting you have had. You never meet anyone with the condition, so it would be good to know you are not alone.

Please can you tell us all if and when the next meeting is?

Many thanks

We are thinking of holding another one in due course, perhaps around Easter time but have not got round to sorting out the details yet.

Hi,

I have been diagnosed with Achalasia and would appreciate any information on how people cope with this condition and would like to be kept informed of any further meetings you might be holding regarding this condition.

Many thanks,

Ian

If you to to the website of the Oesophageal Patients Association, then Oesophagus and then Achalasia you will see some information that may be helpful.

Having the tests and being diagnosed is the first big step forward. There is a medical treatment track, and also a track that tries to reduce stress that might also help.

We will announce the details of the next meeting in due course.