We have set up a meeting for anybody affected by achalasia in order to discuss issues surrounding the condition. It will be held on Thursday 12 December 2013 from 5pm - 7pm at
3rd Floor, Brampton House
Hospital of St John and St Elizabeth
60 Grove End Road
London
NW8 9NH
Majid Hashemi, an Upper GI surgeon will be there to answer questions and explain things. It will also be an opportunity for people to discuss their condition with others who suffer from the same thing. It is the first time we have done this, and we do not know how it will go, but we are hoping for an informal approach so that people can be at ease. And we will be guided by those present about any future meetings.
If you cannot attend, we will try and summarise the event for those who cannot make it.
And if you have questions that you would like the answers to, and either cannot make the meeting, or would like the question to be asked on your behalf, please let us know.
We would also appreciate knowing how many people are likely to to turn up so that we get the accommodation right.
I would like to go to the meeting but live too far away. I don't know if I have Achalasia, yet, because I am waiting for a Barium Swallow. Could you tell me how was your Achalasia diagnosed (if you don't mind) and what was your symptoms.
Best Wishes
I won't be able to attend as I live in Australia!
I would like to know what surgical options are available?
Apart from the Myotomy.
Cutting the Cardiac Sphincter. The opening of the stomach.
then doing a relux repair.
And a Oesophagomyotomy. Which I want to avoid at all cost.
I also have Gastroparesis so my stomach doesn't work. So with this surgery, they remove the whole oesphagus & pull the stomach up.
Won't work & my stomach doesn't work.
I'm a real problem.
But I really would like to hear anything this guy has to say.
The computer decided there was a 'Spybot' in the system & played up with the page & put my reply twice.
Sorry. 
MERRYL I will answer your question about how they found out I had Achalasia in the other section. Ok?
Hi, Redrecks
That will be okay, Thank you.
Dear Redrecks
We will try our best! We'll try and put out a useful summary, but it will be in very general terms because each patient is different.
My brother is suffering from this condition and I would like to persuade him it come along.he is struggling with this condition and I feel this informal way of discussing his options would be of benefit to him.
He can bring you along as well if you wish. He can sit there and simply listen, or become more involved if he likes.
Hello,
I would like to attend your meeting; I have suffered with Achalasia for about 4 years now. I underwent the Laparoscopic Heller myotomy with Fundoplication procedure in July 2013 and this hasn’t cured the symptoms.
You will be most welcome!
I think we will have a great mixture of patients who have had various treatments and perhaps none.
To BrianP
Could you tell me if you had dry retching/gagging on an empty stomach or after eating, before you had your operation. I have not been diagnosed yet and still waiting for a Barium Swallow. My Dr referred me nearly 7 weeks ago as urgent but still no appointment.
Sorry to hear your operation was not worked. This must be so frustrating.
I think if you have not had any date for your appointment yet, try and chase things up via your GP.
Achalasia is something that specialist Upper GI (ie gastro-intestinal tract) surgeons become involved with
as a relatively small percentage of their caseload, and I am wondering whether your GP could refer you direct? The Upper GI surgeons are usually based in and around the specialist cancer centres because it happens to be cancer that provides the most common reason for the operations that they do; but there is also this element of complex, benign surgery that they do. A surgeon's job is often finding other means of curing the problem rather than simply going for surgery as a first resort; you really need to see somebody with the experience of seeing the whole range of patients.
Thank you for replying AlanM (I think you meant me)
I had an Endoscopy 4 months ago and nothing bad was found. My Dr referred me to Speech and Language and I was told by my Dr, I will be having a Barium Swallow.
I asked my local surgery for the phone number of the clinic, but when I phoned on Friday afternoon, a message came up saying they were closed. I am going to phone on Monday morning and hope to find out when my appointment is due. My Dr have chased them up twice now but still nothing.
Dear Merryl
Yes, Sorry! It ended up in a funny place! Hope you get it sorted OK!
Alan
Hi, I have been diagnosed with oesophageal motility disorder and would like to come to this meeting. I have been searching for people with my disorder for a while
You will be most welcome!
Alan
We have set up a meeting for anybody affected by achalasia in order to discuss issues surrounding the condition. It will be held on Thursday 12 December 2013 from 5pm - 7pm at
3rd Floor, Brampton House
Hospital of St John and St Elizabeth
60 Grove End Road
London
NW8 9NH
Majid Hashemi, an Upper GI surgeon will be there to answer questions and explain things. It will also be an opportunity for people to discuss their condition with others who suffer from the same thing. It is the first time we have done this, and we do not know how it will go, but we are hoping for an informal approach so that people can be at ease. And we will be guided by those present about any future meetings.
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!