Five weeks ago I had a gastroscopy with botox injection which didn't work. Yesterday, I went for a balloon dilation, after telling both the consultant and doctor who was to carry out this procedure that their conscious sedation did not work on me, as throughout the four gastroscopies endured I had suffered flash backs of what I consider a most invasive procedure. I asked once again for a general anaesthic because of the time balloon dilation would take. When I arrived in the treatment room I found just sedation was to be used. I had a job to even swallow the tube initially. Then I heard something about the wire being incorrect (all this time I was fully conscious of the tube being twisted and turned inside me) and the squirting of liquid at both sides of my mouth. Then I heard the doctor say the balloon won't dilate. There was then such a severe pain in my chest I thought I was having a heart attack. I was dragging at the mouthpiece whilst the nurse was pushing it home all the time. I was trying to turn to get away from this tube in my oesophagus causing me such terror and the relief when he finally started pulling both tubes out and utter dismay when I heard him say, we'll try again. When told this next attempt would take another 30 minutes I withdrew my consent in abject terror and broke down and sobbed like I haven't sobbed since I was a child.
I will never willingly consent to this procedure again without anaesthetic. I would rather die slowly of starvation, as I am doing. I wouldn't put an animal through this barbaric procedure unless it was fully asleep and yet NHS staff were willing to put a 72 year old lady through it and then wanted to continue on for another 30 minutes when it must have been quite obvious to everyone in that room I was completely distressed.
Has anyone else experienced this treatment?
Hello
I am so sorry that you have had such an awful experience.
I can only speak about what happened to me -I have achalasia- and I am not an expert.
I had an endoscopy with sedation - which I slept through - luckily by the sound of it. I then had a balloon dilation under general anaesthetic as they said they needed to take biopsies and photos etc and it would be too uncomfortable under sedation - I would need a general anaesthetic.
I am surprised they did not give you a choice of sedation or anaesthetic.
Have you tried going to your GP and asking for advice? Maybe he could suggest an anaesthetic would be more appropriate.
I do hope things improve for you. Can you manage meal supplements like ensure or fortijuice? They give some of the nourishment you need. Please do not give up - I am sure other people with more experience than me will offer you advice.
Best Wishes
Sandra
Thanks for the encoouragement Sandra. I do have ensure drinks (only one a day prescribed) but I have reached the stage now when everything I try by mouth, smooth yoghurt, creamed soup etc makes me feel sick and after last week's experience I am beginning to give up on ever feeling any better.
I am, however, taking a nurse's advice to take someone with me when I visit the consultant again next week. She said it was quite obvious they were not listening to me alone.
Wish me luck for Thursday.
Jean
Hello Jean
I am so glad that you are taking someone with you when you see the consultant next week - good luck for Thursday.
I did not see a consultant before I had any treatment - they just went ahead and did it. I think everyone has different experiences - and it depends on your consultant - I was just glad that mine knew what it was!
Maybe ask your consultant if he would consider a general anaesthetic for you as it would make it so much easier for you -- and for the doctors as you would be more relaxed.
I do hope that things go well for you - are you sure that 1 ensure a day is enough to keep you going? There is also a juice version called fortijuice which has all the vitamins and minerals you need in it.
I also hope that someone else sees your post and has more experience than me - and can help more.
Very Best Wishes for Thursday - let us know how you get on.
Sandra
Hello Sandra
All the meeting produced was a referral back to the original consultant for possible surgery.
I went along, accompanied by a friend once again, last Tuesday after a New Year spent in hospital because of fear of dehydration to be told the surgery wouldn't be sooner than March. I don't think I will last until March without having to be constantly admitted to hospital as it is evening painful getting water down now and I feel sick all the time.
Contact PALS who are now in touch with surgeon's secretary and I hope to hear from them with a firm, early date for surgery.
Reading the experiences of others, I gather, in my case it has progressed rapidly to the unmanageable state as my first indication of anything wrong was just 16-1/2 months ago.
Thanks for your interest.
Jean
Helo Jean
I am sorry you are having such a rough time. Lets hope the secretary to your surgeon realises that you need something doing immediately.
Does your GP help at all?
Get back in touch with the secretary and explain your problems - and lets hope you have better news very soon
Best Wishes
Sandra
Iam newbie, 47 years old and a mother of one
I have recently been told that I have Achalasia, I have lost considerable amount of weight. I've been living on Complan for the last 3 months, and only recently via a source was I able to be given Ensure. I've been quite lucky in that the consultant pointed out four possibilities of syptoms which included Achalasia. Yesterday, I had the ballon diliation. I'm just a bit scared to eat anything. During the night I'd experienced pains across my chest. Called the NHS direct to advise as to why I was experiencing these pains. It has now stopped, but no one has given me any painkiller tablets, or mentioned any outcome from the operation.
I'm glad that I've found this forum, at least everyone are in a similar situation and you do not feel that your isolated.
Love to know the london group.
Welcome Audrey,
Don't worry about the pains, they are a common symptom of the condition.
Most people find ways to deal with the pain, and it can last from a few minutes to a few hours (and beyond in some extreme episodes).
For me ice cold water helps the most.
My GP tried me with Nitrate spray (used by angina patients) but the side effects of that, for me, were worse than the chest pain so I stopped.
You'll probably find foods that aggrevate it the most and avoid them.
Hope this helps.
Hi Richard
Thank you for that, since the ops, I've now having to drink water with every mouthful of food, just so that it can go down.
But like you say this is part of my life now. Do you know what cause this, I've tried to approach my GP about this but was told that this is just a rear virus!!
Hello Audrey
Had keyhole surgery for this complaint 5 weeks ago and I am now a normal person again. Able to swallow tablets and eat anything I wish (I don't however eat red meat anyway). All the medical men I have asked about the reason for this complaint say the only suggestion forthcoming is a virus contracted long before the symptoms appear. Guess it's anyone's guess then.
Good luck with your management of the symptoms.
Jean
TO NORTHEAST96.I to had a bad experience i woke up half way through a balloon dialtion it was horrific when i opend my eyes i remember feeling a pinching sensation on my tounge i then tried to pull the tubes out half out on what ever they gave me and i remember him hitting my hand away i started to panick then the next thing i remember i was being woken up so i can only prosome sorry bout the spelling.That they put me with the fairys again.I was told by one sergeon that he couldntgive me anasetic as he neede to see my reaction as he was doing the dialation.I have got to go in again next week and i am terrified i want to be out cold when they do it again.I think its barbaric i get so nervous and panick so much.During my 5 week stay in hospital i had 6 or 7 endoscopies and i think i was getting used to the medication anyway love i can only imaging the stress you suffered.GOD BLESS.DAVID777 :shock:
TO DAVID777. Since writing about my balloon dilation experience, I transferred to Newcastle and the surgeon there agreed to operate on me the following week. As it turned out that didn't happen because the test results I'd had at Hartlepool did not confirm the diagnosis so he had to do his own. Within three weeks he did operate however and I have never looked back. I take no medications whatsoever, apart from Gaviscon now and again. I can eat anything I want with no problems and I quickly returned tn my fit, health self. I was walking a mile a day within a month and am completely back to normal now. I see the surgeon again next week for discharge although I will need to have gastroscopy once a year, which I'm dreading. Good luck for next week. Have you considered surgery?
i am still having problems food and water is going down but the pain can be unbearable my sergeon said he did not want to give me a bigger balloon because of fear of perferation he did say on the day of my balloon op that another sergeon was on standby but i got worried and opted for the same size balloon as last time i know myotomy is out of the question as he told me it wouldnt work.Do you know the name of your operation as it sounds a dream.Glad to here your cured. 
Hello David777
I had the usual Heller's myotomy. As most people on this site also have fundoplication I asked my surgeon if he had carried out this procedure on me. He was taken aback that I'd asked the question but said 'No. I do not see the point in opening a valve in order that someone can eat and then partially closing it up again'. I've got to agree with him, going on my results. Even the surgeon himself is amazed I can eat anything without suffering and that I have stopped the medication (Olanzapine). I see him again in the morning, presumably for discharge, although, as I said, it will mean an endoscopy once a year to check for any unhealthy cells which may have developed because of the time food spends in the oesophagus before treatment.
I believe I had a particularly good surgeon and can only thank God for him, he has given me my life back.
Good luck all of you and I hope you all find a surgeon like the one I had eventually.
Jean
My dad had a dilation due to achalasia and he dehydrated 3 times. Ballooning went well, but they perforated his esophagus. Now we don't know what to believe as he's still not swallowing and keeping down food. He is so determined to get home he's lying. How long can he live without food and tiny bits of water? He's lost all his muscles and fat, he's irritable and irrational. The hole was .6 cm, now 'significantly smaller - but no measurement given. Is this for real? Are they sending him home to die? My sisters and I can't seem to get any answers. X thanks x
I just had ballon dilation done yesterday and had same response as you under sedation I felt like I was having a heart attack still have chest pain but drinking libidos and eating soup so far it is about 90 per ent better but time will tell I was not expecting the severe pain but yes wanted to let you know I to experienced what you was talking abour
I know how you are feeling, i went through the same thing twice, it was horrible and the dialtion didnt even work. Now i have to endure another procedure with the moat incompetent doctor ever.
This is an older post but I just found it. I, too have Achalasia and have had terrible procedures where I've woke up because I was put under twilight sleep and not totally out. Having this condition is bad enough, but all the endoscopies and testing just made it worse. I understand I had to have them, but they were repeat endoscopies and the balloon dilation did not help. I was told by the GI Specialists I'd have the surgery but instead the surgeon ordered another EGD and more tests. He didn't do the surgery, he did balloon dilation instead. It didn't help and I have been worse. His plan was to do Botox next. I don't want anymore temporary procedures. I've suffered so long from this, I want the surgery I was originally told I'd have. But he won't do it until he tries these other procedures. I've had four endoscopies since January. If I allow the Botox treatment it will be five endoscopies and now they say I have Barrettes esophagus (pre cancerous cells). So I've been trying to get in to see the original Specialists who diagnosed me but they're all in the same clinic and I'm told I have to see the surgeon.
I don't HAVE to do anything actually. I've done everything they've asked and I'm worse. Trying to get help has been such a nightmare. I just want to give up fighting for my rights not to keep having these tests. I've had them all. They all show Achalasia. But it takes just one surgeon to bring my treatment to a halt. I just don't know what to do.