How long to wait for Esophageal Manometry in the UK?
Posted , 7 users are following.
Hi,
Ive been having issues with digesting food for some time but altered my diet, avoided fatty meat, etc. Having lost some weight and struggling to eat anything i saw a doctor in october 2019. After several tests including a barium swallow and a couple of endoscopys the consultant suspects it is Achalasia with a referral for a Esophageal Manometry to confirm - that was 2 1/2 months ago and still no appointment or any advice/checkups from the doctors . I am now on an entirely liquid/puree diet and avoid meat. My weight loss has plateaued and I'm trying my best to have a balanced diet with lots of calories. Is this length of wait normal in the uk ? (North East). Is there anything i should be pushing for with the consultant ? Any tips/advice appreciated 😃
0 likes, 13 replies
donna74411 Tickletoes99
Posted
What were the results of your barium swallow and two upper GI's? Did they take biopsies? Digestion issues, avoiding fatty meats, and weight loss aren't the typical complaints of people with achalasia. Are you having problems swallowing? Regurgitating your food?
I was coughing all night because I was choking on my own saliva had to stop eating after 3 PM to avoid choking on food at night. My pulmonologist referred me to a specialist and I was scheduled for the PH impedance and manometery test withing 2 weeks. I am in the South East in the USA.
Good luck!
Tickletoes99 donna74411
Posted
Weight loss was because i couldn't keep food down. Biopsies all clear and swallow test suggested achalasia - hence the referral for the manometry. It just seems a long wait for this last test - but it seems it may be that other, more serious cases, are being priortised - which is understandable. Guess it will be soups for the time being ! Sounds like you've had quick tests and diagnosis - hope you continue to manage the condition.
cherryflower Tickletoes99
Posted
I am in the north UK, and I have the same questions as you . As a matter of fact, I was pushed back and forth between the specialist and the surgeon, and all of them say that I have to do botox first . However, after waiting for several months without giving me a definite date of botox, I decided to do botox on private which costs me a fortune. Then I presented the result of the botox to the specialist and surgeon, then, I am back on waiting again. They say I have to wait several months to gauge the effects of the botox. It is very difficult to get a surgery on NHK track.
AlanJM Tickletoes99
Posted
I think that there may be an issue in the NHS that the Upper GI surgeons tend to have their lists dominated by cancer surgery and that achalasia is not seen as a priority. Then there is the issue of how far gastroenterologists and surgeons collaborate together. Both can sometimes report back to a GP and this then consumes time until the next referral.
There is a tendency for therapy such as botox, or dilatation to be tried first, and to some extent it is not wrong in many cases to do this. But the best thing is to have the endoscopy, barium swallow and manometry for a definitive diagnosis, and then have the surgery or other procedure on the basis of the test results.
There is a booklet 'A Patient's Guide to Achalasia' that you can download from the website of Achalasia Action's charity website.
I would be inclined to gather all the information you can and then return to your GP and ask for assistance, which may include asking for a second opinion, something to which you are entitled under the NHS and would tend to concentrate minds in the system.
cherryflower AlanJM
Posted
Tickletoes99, thank you very much and how can I urge GP to expedite the process? I have all the tests done already.
Tickletoes99 AlanJM
Posted
Thank you for your reply - it makes sense that this may cause a delay. Fingers crossed I'll get an appointment soon - I'm getting a bit fed up of soups and smoothies !
cherryflower Tickletoes99
Posted
Thanks Vincent21473. I have been diagnosed as early achalasia, and I have taken Botox, the next step is surgery, but I don’t know which is a better option. Should I go for a POEM which is a less invasive, or should I go for Heller as it also does something for preventing acid reflux?
May I ask what make you choose Heller rather than POEM?
Did you do it on the private track? Is it very expensive? What is the price may I ask? How do you feel now?
AlanJM cherryflower
Posted
The POEM is to some extent the same as the Heller's myotomy except that the endoscopic instrument is inserted through the thin wall of the oesophagus to cut the muscles stopping the lower oesophageal sphincter from operating properly. The Heller's reaches the muscles by cutting more directly through the wall. The Heller's myotomy then invariably includes a fundoplication that wraps part of the top of the stomach around the oesophagus to create a valve-like facility that stops acid and other stomach contents from refluxing up into the oesophagus to combat the risk of heartburn and other long term problems with reflux. The POEM does not do this, and may rely on medication to stop the acid reflux.Some people who have the POEM say that they do not suffer from reflux. So the question to the surgeon about the options is really what will happen about reflux afterwards.
I do not know about prices for private surgery.
vincent21473 cherryflower
Posted
Heller is fine - its more about getting the right surgeon - Simon Dexter in leeds excellent - you need someone with specific and regular experience
when i was looking i would have had to travel for poem and there weren t many surgeons in uk doing it
i actually had a telephone consultation with a specialist conducting a comparison of the two types of surgery - he recommended my surgeon
i was private no idea of cost but no reason not to have it on NHS
i cannot tell you how much better - achalasia creeps up on you and you dont realise just how much it impacts until you get back to normal
i wouldnt hesitate to recommend it
neil32387 Tickletoes99
Posted
Hi there,
Please take Alan's advice and take your case back to your GP. If your GP truly suspects your case could deteriorate quickly, they can/will write to the hospital to expedite matters. My GP did; this helped greatly.
I struggled with Calories too. I got back on track by having a small (finger type) bowl of raw honey and double cream every morning. I worked out this holds almost 1000 Cals for a quite small amount; and it is lovely! Still have it everyday now. With that morning Cal boost, I worry less throughout the day, and can avoid eating too late. I also use Ensure 2.4s. Your GP can give you these on prescription or you can buy them. They taste good, and have 300 Cals for a tiny amount of smooth liquid...and guacamole guacamole 😃 - full of Cals and I love it... Lots of warm water too.....
Warmest, Neil
PS - you can also sign up for the Achalasia Action Newsletter on their website...
Tickletoes99 neil32387
Posted
Thank you for your reply @neil32387. I know you are right with going back to the GP - as always I don't want to make a fuss, particularly when the delays could be due to people more unwell being treated first. I will try the honey & cream trick and avocado too - I had avoided it as thought it would cause and issue. I have signed up for the newsletter - thanks for the tips 😃
M3987 Tickletoes99
Posted
I've just come across this website and seem to have the same problem and have been waiting for 1 year now for a Manometry Test. My hospital consultant suggests that I write into Greater Glasgow Health Board to complain about lack of resources (I am in Glasgow). He doesn't want to operate until he has the benefit of this Test result. He is leaving options up to me to choose. I would consider Private. I just don't know where to start on all this. Any advice (this to all)?
Tickletoes99 M3987
Posted
Sorry to hear you've had such a long wait. I managed to get my test around 3/4 months after it was requested. It then took another 3/4 months for the results, I am in the North East of England. I was advised the delays were due to the equipment not being readily available and often breaking so requiring maintenance meaning appointments get backed up after cancellations. I would raise it to your health board and possibly ask them if there are any neighbouring health trusts you can be referred to? Sometimes waiting lists are shorter at other hospitals if you are able to travel? The lady who did my manometry said they did try to prioritise when achalasia is suspected due to patients struggling to maintain their weight. Good luck, I hope you get the answers soon.