Achalasia and understanding

Hi Neil, you are absolutely right. Achalasia can not be cured and, managing the symptoms does become part of everyday life. I have used little technics to get food past that danger zone for many, many years but, have reached the point where I am completely unable to get even water down without a fight. I have had no function in my oesophagus at all since 2014 but, it has deteriorated severely and, I am now awaiting to have an orsphegetomy as Barrats syndrome was diagnosed just before Christmas. My oesophagus is like a carrier bag blowing in the wind, not even positioned where it should be. The Manometry swallow test is the key to diagnosis and, of course shows exactly how your oesophagus is or, not working. I had two open surgeries 89 & 91 and, the second has served me well up until 2014 when I began to have difficulties in swallowing again. I have had no treatment in between. When I joined this forum I had never spoken or, knew of anybody else that had Achalasia and, I’m amazed and, a little saddened by what procedures can be done today without major surgery and, I wish that mine had come later as I feel that had I not had such aggressive surgery all those years ago I may not have had to face an orsophagetomy, I wonder. I do feel that whilst it’s great if you can manage it as I have for many years but, the way I am now I also wonder if I’ve managed it for too long without treatment. I really don’t know but, my symptoms have hit me fast and, hard with a whole array of different problems to manage as it has travelled to my bowel now and, the sphincter does not relax which is a huge problem in itself. I can’t honestly say, if it’s not broke then don’t fix it but, all the acid over the years has caused the Barrats and, of course that can potentially cause pre cancerous cells in the oesophagus and, I have no idea when or, how long ago that occurred. All I know is that I didn’t have it in 2014 so I have no idea how badly damaged my oesophagus is until I have the final test, an endoscopy on Thursday and, I meet with the consultant on the 5th March and, he has all the results in front of him. All I can say is that it wasn’t in good shape in 2014 and, it was a case of having to manage it until this time came when it isn’t manageable that radical surgery is the only way forward for me. Take care x

I have followed several of your accounts on this forum. They are always beautifully written, and full of food for thought...I often wish some good luck your way over the air waves when contemplating fellow sufferers. So good luck again!  

I hope the Tests pan out well for you!

N. 

Thank you Neil that is so kind of you. I have found this forum to be a great support over the last few weeks as I have never spoken to anybody else who suffers with Achalasia. I’ve certainly learnt a great deal from other people’s experiences and, I’ve been amazed at the less invasive treatments that are available to patients now. It’s interesting to me as I had very aggressive surgery in 91 and, I feel almost Jurassic now ha ha. I have noticed that a large number of people that have had the Hellers procedure done laparoscopically seem to be returning in as little as a year later and, having to have further dilatations and, I wonder whether I’ve been lucky that my procedure lasted me for all those years but, on the other hand after learning so much more I feel that had I have not had such an aggressive procedure it may have left the surgeons with a lot more wriggle room so to speak 😊 than they have now. It has as I said been a great support and, like everything else I wish I’d of found the forum sooner as it can be an isolating condition when it’s at its worst. Thank you and, I will be sharing my news with you all. Take care x

Hello, I am presently under the care of Professor Goldstein and, Mr Goldsmith at the Manchester Royal Infirmary. My symptoms are at best complicated at the moment and, have been told I will need an oesophegetomy at this stage. I must admit to feeling a little apprehensive as I have only seen them once before Christmas and, I have no idea yet whether they are treating many patients like myself. I had the barium and, manametry swallow prior to Christmas and, was scheduled to have another endoscopy on the 3rd January but, infuriatingly it has been cancelled every week and, rescheduled. So I have therefore not been seen my the consultant since. I have another arranged for this Thursday and, an appointment to see a Dr Li on the 5th March if it dosnt change between now and, then. It has been appalling really as I attended one appointment, was booked in asked to take a seat. I sat there for over 2 hrs before I went across to the same lady that booked me in, drew a highlighted line through my name and, told her that I needed the bathroom and, that is where I would be if they called me through. She asked me my name and, said Oooh your appointment was cancelled!!! I was furious, the same lady who had booked me in had let me sit there for over 2 hours before realising. I had the first two tests very quickly after the initial consultation but, this last hurdle has been a complete nightmare. It doesn’t fill me with confidence as I am neither familiar with these surgical consultants. Are you aware or, has anybody else been under their care 😊