Feeling Desperate

Hi Thank you for the advice. What are your reasons for not opting for the surgery? Is it possible to live with achalasia long term without surgery?

Dpending on how bad the condition is, I think it is possible to live with achalasia without surgery, but the longer you leave it, the more likely it is that the oesophagus starts to lose shape and becomes resistant to surgical intervention, and if that happens one is then faced with the prospect of an oesophagectomy, where the oesophagus is removed and the stomach pulled up into the chest and joined to the remaining oesopahgus 'stump'.   That really is major surgery.   And the other factor is that having repeated attempts to stretch the lower oesophageal sphincter can make the cells more fibrous and less liely to respond to surgery.   So if things are bad in relation to quality of life and so on, the earlier you see a specialist, get a good detailed diagnosis, and then opt for the best treatment first time round, the better.

It all does sound pretty grim!! My diagnosis is based on manometry findings I have a barium swallow coming up to confirm it . The last barium swallow I had three years ago was normal. According to the specialist I am in the early stages  but my symptoms are awful don't think I could stand it if got any worse ! If they offer me the op think will have to have it! Do you think you will need an op eventually and do you have regular checks to monitor the condition?

Sorry just realised I got your reply confused with barrym wasnt concentrating       

I also wanted to ask you if you know how the different types of achalasia are classified as I have seen type 1,2 and 3 mentioned? n

I do not know enough about the types 1,2 and 3 except that I believe that they depend on whether there is peristalsis or not (ie the muscle contractions that move the food through the system), whether there is spasm and pain or not and so on.   I am not sure that all doctors recognise or use those categories.   As far as I am aware, it also depends on whether the lower oesophageal sphincter (the valve beteen gullet and stomach) sticks open or clamps shut;  and whether the problem with the nerves / muscles occurs further up the oesophagus or not.   I also believe that as well as a medical apsect to how well the nerves / muscles work, there is a mental / relaxation / stress element that can make the nerves work worse, or better, and the more that one can try and relax and take pressure out of eating situations, inlcuding posture, timing of meals, avoiding problem diets and so on, the better the improvement is likely to be  maintained.   But you don't need to tell me that this is easier said than done.

Thank you Alan all your information really helps. What do you think about accupuncture? I have had one session but obviously too soon to notice any benefit.

If it does you good, go for it!

Wow really interesting about the coke a cola!!

Hi Alan I hope you don't mind me contacting you again I  wondered if you could help . My manometry results show a high pressure in my lower oesophageal sphincter which I know is related to achalasia and my barium swallow showed hardly any peristalsis and a very slow passage of barium into the stomach which I also beleive to be indicative of achalasia? However my manometry also showed a high pressure in my upper oesophageal sphincter which after reading through lots of things cant see this as connected to achalasia ?? So many of my symptoms are up in my throat with lots of pain irritation globus sensation feeling of something stuck there. I could only have liquids and nothing with any flavour anything with a flavour burns my throat and I feel like there is alot of damage to back of my throat is this connected to achalasia? I also wondered if I had the heller myotomy  still awaiting second opinion for this if this would releive pressure in the upper oesophageal sphincter or would that remain the same and throat symptoms still be there? I hope you don't mind these questions my GP most unhelpful and not sure who else can help Thank you

The reason why the doctors do the manometry test is so that they can analyse whereabouts the problems are occurring.   Indeed it is not always around the lower oesophageal sphincter (between stomach and oesophagus), for instance.   That is why the specialist centres do all the tests and then work out what the best treatment would be.  

It might be that the pain and sensation are being transferred from other locations through the nerve system, most of the nerves being connected together in the vagus nerve system.   It is still a form of motility disorder, and sometimes people use achalasia interchangeably with the disorder.   The globus sensation can be caused by a number of things.   It really needs an expert to look at the test results and to interpret them properly, but your pain is not normal and something must be driving it.   It sounds like there is some sensitive soreness in your throat which gets triggered off unless you are swallowing something very bland.  

Does it make a difference when you eat very soothing food, or something like Manuka honey?   Do you suffer from reflux?   Is your mouth normally moist?  Are yor taste buds normal?  How is your dental hygiene?  Does it make a difference if you have over-the-counter medication like gaviscon?   or antacids?  I am thinking through various things that might make a difference to how your throat and oesophagus feel, and what might make a slight difference.   It is possible that you may have more than one issue, which may or may not be inter-connected.

 

I have tried lots different proton pump inhibitors with no mprovement in symptoms in fact some even irritated my oesophagus and I was in agony. If I take gaviscon feels like I am on fire. the impedence test I had showed no episodes of reflux over the 24 hours, I have good dental hygiene and mouth is moist I drink so much water to try and wash the feeling burning aggravation away but nothing really helps.  it feels like A grazed feeling all down my throat in my mouth and sometimes feels like its in my chest as though I have inhaled something It definately makes me wonder if there is something else wrong I just feel like i am getting nowhere with the gp at all and I havent seen these symptoms described by anyone else with achalasia

An ear, nose and throat specialist might help (if you have not already tried one?).

Thank you I think I will try and get referred 

 

Thank you so much for coke tip , tried it hlast night and felt so much better x