Achalasia or Not
Posted , 6 users are following.
I have had swallowing problems (both solid food and liquids), severe chest pain, throwing up, dilations, etc., over the last year. I have had three dilations in one year, each time when I have been unable to swallow food and liquids for 3-4 weeks. I dropped 30 pounds the first two months this started happening.
I had a modified barium swallow test done, with results that led the radiologist to suggest it may be beginning achalasia. The doctor that ordered that test ignored the comment, and said he didn't know what to do, and basically to just live with it.
I am now on my 5th doctor, who actually gave me hope when he said he was sure it was achalasia, and bullied me into a manometry test (which I had tried twice before but pulled the tube out before they could even get a measurement). I got through it but the results said only 4 out of 10 swallows showed problems, so the doc said just continue to follow the GERD diet and sort of kicked me to the curb. I've been following the GERD diet for 6 months with no change.
Has anyone had achalasia-type symptoms but found they did not have achalasia? If so, were you able to find anything that helped? (I do know that drinking water helps greatly to mitigate the chest pain when it occurs.)
And does anyone have advice on how to address the fact that doctors who can't figure it out seem to just refer you to the GERD diet? (I do have GERD, but it is controlled with medication.)
0 likes, 20 replies
Cathuk vicci24015
Posted
Sounds Mike Achalasia tbh - where abouts fo you live? Get referred to Ian Beckingham Queens Medical Centre Nottingham - travel if you have to he’s done one of the largest series of HM’s & knows more about A then anyone else. Normal doctors have no idea what to do etc only when we travelled to see him did we get help! I told him tvwas better than winning the lottery finally finding someone who gets it!
Cathuk
Posted
vicci24015 Cathuk
Posted
Thank you for your response. Unfortunately I live in the US so a trip to Nottingham is probably not in the cards. I continue to research doctors who deal with this as a profession, and not just something they come across. So maybe I'll find someone like Dr. Beckingham somewhere in the US. In the meantime, I will continue to try interventions (such as vitamin supplements) suggested to me in this forum. It is really helpful to get ideas from others who have been dealing with this longer than I have.
abbyy vicci24015
Posted
Just Google Prof.C. Palanivelu or Dr. C Palanivelu India
He invented special achalasia cutter
Top Two Great Surgeons : First Indian honourd by European Association of Endoscopic Surgeons for Significant contribution to development of Laparoscopic Surgery during World Congress of Endoscopic Surgery at Paris June 2014. 1. Prof Palanivelu India 2. Prof John Hunter US
source: https://en.wikipedia.org/wiki/C._Palanivelu
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3015830/
And so many other ref.
vicci24015 abbyy
Posted
Thank you for this (and the previous) response. I will take a look at this. It is really frustrating to not have a definitive diagnosis after the last test, as this was to be the final test that would give me an answer.
I plan to continue researching my options, as well as follow a lot of the advice I am getting in this forum. I haven't tried specific vitamin supplements (since I haven't been able to swallow them), although I am just starting to work with a dietitian to determine the supplements I should be taking to make sure I get the nutrition I need to stay healthy, and also to set out a strict diet that identifies all of the acidic and caffeinated foods. (I've been following the GERD diet, but I keep finding foods that are acidic and I had no idea they were acidic.)
Again, I appreciate your response and information. I really do hope I don't have to resort to surgery, and if dilation can be done indefinitely, I am fine with that as an option.