Feeling Desperate

Thank you for your response I definately think stress makes this condition worse. What is your experience with achalasia.

I helped run a meeting in London last year for achalasia sufferers, the report of which is on the website of the oesophageal Patients Association under The Oesophagus and Achalasia.  We have been trying to set up another meeting.    There have been logistics difficulties but people are working to overcome them.

I have just looked it up and it sounds really interesting, hopefully there will be another one arranged in the future. I will keep a check on the website. Thank  you.

Hi Alan I hope you don't mind but would be really grateful for your opinion on my latest consultation with the upper GI surgeon. I have found the information you have provided me with previously very helpful. In September I saw a private upper GI surgeon with the view to having LINX treatment for reflux disease which is what I was being treated for during the last three years . After reviewing my manometry and 24 hr ph study  the consultant informed me  I had no evidence of any acid reflux and that the pressure in the upper and lower sphincters were high he gave a diagnosis of early onset achalasia and this was backed up by barium swallow which showed hardly any peristalsis and very slow drainage of barium into the stomach three years previously my barium swallow was reported as normal. The surgeon recommended a heller myotomy as he thought with a patient of my age 33 this would give me best outcome. he referred me back to my local nhs consultant as he was based out of my area and thought would be able to get the heller done on the nhs. I was seen by my NHS upper GI surgeon yesterday who doesnt agree with the diagnosis of achalasia and would not be prepared to carry out the heller myotomy he didnt think my symptoms fitted with achalasia. He has advised i try amitryptiline and metoclopromide I have previously tried metoclopramide before with no success so don't understand why this has been advised again, I have a masssive anxiety about taking any medication the only food I can tolerate is weetabix with lots milk The back of my throat is so aggravated and all down my oesophagus Im too scared to take the medication swallowing is really difficult too. It doesnt feel like anything goes down properly and i am worried that taking this medication may cause me more problems although it is in liquid form. I am a little confused as to why one surgeon has diagnosed achalasia and would operate and another hasn't my anxiety levels have gone up completely and my life is an utter misery. i just wondered if  you had any thoughts on it and would appreciate any advice you could offer.

Hannah

As I understand the Linx device, it is a magnetic bracelet that fits round the lower oesophageal sphincter and holds it shut, thereby keeping the stomach acid in its normal place, but allows it to stretch to allow food to pass through.   I understand it to have not been used much yet, and it is intended, at the moment, for patients where other methods of suppressing acid reflux (eg through medication) have not worked. 

The diagnosis that you describe through the private doctor sounds logical, and it seems to have involved the usual tests (but perhaps not an endoscopy, unless one was done earlier?).

The NHS surgeon is probably being cautious.   The myotomy might increase reflux, and as you say yourself, you have a high level of anxiety about your condition, understandably, so the NHS surgeon is probably thinking that trying to reduce the tension in the nervous system might help the situation.

It does happen that some experts have a different approach to each other, so my inclination would be to try and see the private doctor again, to try and resolve the difference (they might even do this on the telephone perhaps).   They might write to the other doctor in advance to help the process?  Everyone is entitled to a second opinion and doctors should be used to discussing these issues with each other. 

There is a thought that sometimes these things do get caught up with NHS practice as opposed to private practice, but it is probably best to try and separate out the best medical option for yourself as the first priority;  there may be some rubbing points from having gone private first (or even what one doctor thinks of another!).   I think the general principle is that one should have a thorough testing process and proper diagnosis, and then go for the best option as early as posisble rather than escalating through different options just because they may be easy to try medically.

Reducing your anxiety levels about it would almost certainly help things.   I hope this gets sorted out for you.  

  

Thank you for responding I am very grateful for your advice. I have had two previous endoscopsies which did not show anything up. How would I get a second opinion on the NHS? I felt confident about what the private dr said with regards to the heller and he also said if i was referred to him on the nhs he would put  me forward for the op but as i was out of the area he thought one of my local surgeons would be able to provide the same. I do not feel the NHS dr in my area really understood and the fact prescribed metoclopramide again when i had previously tried this and domperidone  two years ago with no effect really highlighted this . i have had a quote for the heller myotomy privately and would be willing to get into debt to fund it. I feel like i have been going round in circles with this condition for years ! 

I think I would contact your private doctor's secretary, explain the situation and ask for your private doctor's recommendation on somebody to approach for your NHS second opinion.   Where do you live?

I live in Gloucester so upper GI NHS surgeon is based at Gloucester Royal. The surgeon I paid to see is based in Exeter. Thank you for the advice I will contact the secretary next week.

Hi Alan I hope you don't mind me asking you more questions but wondered if you could offer any advice. As I have previously said I have been suffering with ongoing problems and don't seem to be getting anywhere. I saw a private dr in september and after reviewing manometry barium swallow and endoscopy diagnosed achalasia and recommended heller myotomy and referred me back to my local NHS upper GI surgeon. I saw the nhs gi dr in october and he did not agree with the diagnosis and said surgery would not help said i had a complex motility disorder which there was no treatment for. I then went back to private dr who did seem to be a bit more specialist in this area and he then took my case to his complex MDT meeting and has now come back to me and said they do not think it totally fits with achalasia but there is a definate problem going on between the oesophago-gastric junction and did not think any surgical intervention could help my symptoms. I just seem to be going round in circles I am in so much discomfort I can only eat a very small amount of liquid diet with no taste or flavour I am losing weight always hungry but feel fullat the top feel like i am going to choke food gets stuck in my throat my throat keeps not swallowing like im forcing it against a pressure. I feel like there is a lump awful pressure feeling in my throat everything i swallow seems to go up back of my nose i feel like i have inhaled something like my lungs are affected my throat feels raw and grazed and irritated all down my oesophagus just feels awful painful like it wants to turn itself inside out there is no power in my swallow. i have no energy and feel unwell I am only 33 and i just don.'t understand how there os nothing the drs can do to help yet i feel so unwell every aspect of my life is affected by it. the tests i had done were back in july and my symptoms have gone rapidly downhill since then do you think the tests need repeating? the only hope i have left is my gp has referred me to another gi surgeon on nhs as second opinion and at your previous recommendation A ENT consultant who i will see next week as my throat feels so bad almost not like there is enough room to get air in . Thank you any advice would be appreciated. Hannah

I think that going to the ENT consultant ought to be helpful, especially if they work together.

Thank you Alan just hope they can help im counting the days down to the appointment!

Hi Roz thank you for your response. It helps to know other people experience the same sort of symptoms despite trying to remain positive some days it really does get you down! Are you going to have any more investigations done?

Well I'm now got to wait a year , well it's been 2 months since I've seen the consultant , he wants to see if it gets better or same or different ! Not sure if he thinks it's a stress related problem but I'm not convinced as I've had more stressful times in my life and I think it's a case of waiting to see how things develop , in the mean time I'm going to go back and talk to my GP and maybe maybe plan with him possible chest ex ray and barium swallow test for nearer when I go back to consultant , and ask about pain management maybe acupuncture or something , I'm keeping to Gluten free diet which helps , what are you going to do now ? Are you on PPl s tablets like omoprazole or so , I was thinking of asking doctor for antidepressant as it's a relaxing for the oesophagus it might work ? What do you think ? It's a tough thing , with what seems to be not a lot of treatment , but there is some treatment luckily , but it's not overnight unfortunately , I've decided to get on with it ! But I hate the fact I'm changed ! And it's daily ! On wards and upwards ! Any tips on anything your doing to help let me know , I'm always around to chat too ! Cheers Roz

Thank you Roz. I have tried an antidepressant but did not help at all. I have just started accupuncture only had one session so far so not sure if this will help but am hopeful as I have read positive things about it. I tried reflexology and hypnotherapy previous but didnt feel much improvement from it. I was made to feel as though my problem was psychological and caused by stress but my stress was coming from all the symptoms I was having. I was on omeprazole for about three years and have tried various others but with little effect since my diagnosis of achalasia have stopped the omeprazole my manometry result showed high pressure in lower and upper sphincters i am having a barium swallow on thursday although I did have one three years ago with a normal result. After my barium swallow Im going to get referred to surgeons and may be able to have the heller myotomy. It must be frustrating for you with no diagnosis how long have you had your symptoms? 

Hi Hanna , i have had my symptoms a year now , the consultant seemed to think he wouldnt want symptoms to continue but never stressed why , its just so awful , im going to try accupuncture too why not eh, what is heller myotomy that sounds like an op! yes i feel as if tablets are no good had some sucess with omprazole in the very beginning but not now ,have you had a chest xray they say to have this done to get the bigger picture ! you have suffered ffor a long time , thats to long and i know what you mean with how the consultants they think its stress related they have all mentioned that stress this and stress that could be a factor in this, ,  yet before this happened to me i was happy with my life completly , business , kids , good husband , very lucky , now im only concerned because im tired and its sore and i cant eat and certainly cant be a socialble as i was , its crap, but saying all that im a positive person and i dont like what is happening to me but i have to acept it , you must of had a lot  of time to think and resource all your information its great that we can talk on these forums so that its a helpfull way to hopefully feeling better, so if you had a normal result with the barium swallow , is that what can happen and will that then decide what is to happen next for you ?  

Hi Roz I agree these forums great doesn't make you feel like you are the only one . I havent had a chest x-ray as yet I think when I had the barium swallow three years ago I was probably too early in the condition for it to show up anything but three years on they think will show something especially with the manometry result showing the problems with the tight sphincters. the heller myotomy is where they cut sphincter bit complicated I think! like you though im tired its difficult to socialise eating is a massive problem as its painful and hard to swallow it really does change you as you can't get away from the problem. I hope the accupuncture will help you I have my second session tomorrow. For you its just waiting then have you had an endoscopy?