Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 Seeing as there hasn't been a message posted for a while I show below what I've been able to put down in words regarding my achalasia. Perhaps it will help someone... " I only found this group a few weeks ago. When I was first diagnosed I had a trawl round the net and found the odd article but nothing particularly relevant. Thank you whoever for starting it. I am male, 40 years old and live in the UK, My symptoms started with difficulties in swallowing (I think in July or August 1998)(although I couldn't think about that rationally and tell my doctor or consultant at the time). Soon after, every now and then, I felt pains in my oesophagus which died down in a few minutes - I attributed these to stress. Then I felt sick lying down (particularly at night), felt like running to the bathroom but it went away as soon as I sat upright. I thought this was reflux and the doctor treated it as such. Trying to sleep with pillows to hold my head up didn't work particularly well for me, but I now have a good 'fix' ( see below). I slept thought the night on Christmas Day. I attributed this to not eating at all in the evening, so I often just had a light early snack in the evening which sometimes helped - but not always. Probably as with everyone else the symptoms were hard to pin down and various treatments were prescribed at first including Losec, Gaviscon etc. They had no effect. One of my mother's friends still dabbles in GI as a surgeon and he was able to see me between Christmas and New Year 1998. As my uncle had had bowel problems and as I had never heard of achalasia when he mentioned 'achalasia' as a possible cause of the symptoms it completely passed me by. He mentioned it again at the second appointment. As soon as I had a barium swallow the radiographer was able to tell me that it was definitely achalasia - classic symptoms and X-ray. When I went through the symptoms it all fell into place. I felt that I hadn't been able to explain them properly in the first place. He performed a GI scope soon after under a light general anaesthetic [at the Chiltern Hospital] to confirm it and rule out any other potential problems (ulcers etc) in the stomach area. He referred me to a consultant in Oxford, Mr Maynard, who was familiar with achalasia. He explained it in layman's terms and plotted out a course of procedures and what-ifs for me. He first had to be absolutely sure that it was achalasia. I had a second scope [at the Acland in Oxford] by him to count out any possibility of cancer or some such causing the same symptoms. I then had oesophageal manometry (no anaesthetic required) at the Radcliffe, Oxford to confirm loss of stalsis (?) as I drunk sips of water. These two procedures confirmed achalasia. He discussed the options that I had being: dilatation, botulinum injection (botox) and surgery. He did not do botox nor did he promote it. It may be performed in the UK but he gave the impression it wasn't. Surgery seemed a bit severe for what to me was lack of ability to get a good night's sleep so we went down the balloon route. He would be on hand in case the LES ruptured/perforated and would by default do a myotomy. I was booked in to the Radcliffe to have a 3 cm balloon dilation by Dr -. Again this was under a light general anaesthetic and I was out for an hour or so and then was able to go straight home. There was immediate relief from the night time problems and I was able to get some good nights rest. Eating became easier - not perfect but not too much of a problem. However after a while the problem re-occurred and it was decided to do the next size up dilation. Dr repeated the 'stretch' but to 3.5 cm. Again the problem died down and it lasted a lot longer than before. I didn't need a hundred pillows to keep my head propped up and stop the reflux problem. I noticed it return in October 1999. And it got worse again. I don't think it was ever as bad as the first time but I was losing a lot of sleep and we went for the full 4 cm 'stretch' knowing that it was the largest that could be performed without really risking a perforation. That was in January 2000 and my condition now (July 2000) is fairly stable. We have analysed my 3 stretches and concluded, that as I am relatively young, my muscles have been repairing themselves a bit quicker than standard and the stretch which is designed to break the muscles to loosen the restriction at the base of the oesophagus, has become less effective relatively quickly. My consultant and I have agreed that I won't go back to see him unless the situation deteriorates and a myotomy will have to be considered. My consultant has not performed any laparoscopic myotomies yet, so in a sense I am biding my time. I had a big doubt that cutting all the muscle at the LES won't just leave a big hole for the food to flow out of at night. I feel my sleeping problems could return. The group messages suggest this is not the case so I shall be more positive about a myotomy now. I have the odd moment at night - particularly if I eat late. I'm sure the same applies if I drink late but it may just be the way I feel rather than a true physical difference. By co-incidence I found that wearing a pair of long johns at night prevented me slipping down the bed, off the pillows, and so gave me more restful sleep. Toast has always been the hardest food to go down. Thanks to the info gleaned elsewhere from this group I am not alone in this. I thought I found drinks hard to swallow as well but this maybe a feeling again rather than reality. I can certainly drink a pint of tea pretty quickly. Fizzy drinks aren't quite as easy, but certainly not impossible, and there is no food I can't eat and nor do I try to avoid anything. After reading the woes of other members I appreciate that I have got off lightly so far. I have had no noticeable weight loss and I can keep up with most other diners (except for my wife and kids who wolf their food down at an alarming rate!). When I am stressed mentally my oesophagus sometimes hurts - does anyone else have this? In fact it was so bad after my 3rd dilation that they checked I didn't have a perforation. One of the most frustrating things is not knowing what caused it. Any tips on foods to avoid and to try would be appreciated. The `movements' to help the food go down have worked well. Walking around always sorted it pretty quickly and the worst thing is eating in the car which does not allow the food to go down. As soon as I considered that it was food vs gravity I felt better! As soon as I knew that liquid would encourage the food down I felt better (a problem shared, perhaps?) but strangely it doesn't seem to help me. I can feel it backing up and I have to wait a considerable time for it to go down. The relief when it goes down is immense and, in an odd way, quite satisfying. If I ever feel that this isn't going to work then I will have the op........... " Wemyss Quote Link to comment Share on other sites More sharing options...
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