A few weeks ago i posted a question about a stricture at the bottom of my stomach tube and was waiting to see my surgeon as regards the test results for the Barium Swallow that i'd recently had. Well i saw the surgeon yesterday and the news wasn't good. He said that at this time there was no cancer there but that there was obviously something going on. He wants me to see a specialist Gastro doctor to have a dialatation of the pylorus sphincter or amybe have botox there. He said that since my symptoms are exactly like the Achalasia symptoms that i had pre- oesophagectomy, they can't be ignored and needs monitoring. He wants me to see this gastro doc asap and have the dilatation/botox before i see him in clinic in Liverpool on December 17th as he said that he doesn't want to loose touch with what is happening to me. If i still have a problem with the pylorus sphincter in December then he may consider an operation where he can split the sphincter as in a myotomy operation. I am most definately am having the same problems as pre- oesophagectomy but instead of a narrowing Lower Oesophageal Sphincter i am now having problems with the Pylorus Sphincter which is in exactly the same postion as where the LOS used to be.
Barium Test results not good. - Oesophageal Patie...
Good news no cancer showing.I know several who have had dilation in same place and botox and it has been successful so all in all better than the cancer back and as you may know has affected some on site so look at the positives
Thank you for pointing me in the right direction in that there is no cancer. The reason that i had the oesophagectomy in the begining was that i was diagnosed with Vigorous Achalasia and had to have the oesophagectomy to give me any kind of quality of life. When the oesophagectomy was done the stomach was made into a tube (new feeding tube) and drawn up into the chest leaving the Pyloric Sphincter behind where the lower oesophageal sphincter used to be where it goes through the diaphragm. So you see it is the pyloric sphincter that is giving me the problems now and i am scared of having a rupture there when they dilate it, that is what is depressing me. But i take each day at a time as that is the only way to cope with Achalasia and my surgeon has told me that he has extensive experience with the disease.
I was wondering how you had got on. It sounds as if you are going to see all the right people. It does delay things when you get referred on to somebody else but I do think that it is a sensible thing for them to have the collective wisdom of more than one expert. It does sound as if they have options for a procedure / surgery if necessary.
I must say that personally I do not know much about achalasia. It must be good not to have the complications of cancer, but that is not much consolation when you are having these renewed problems after the oesophagectomy.
Thank you Alan for your confidence. Achalasia is a lifelong benign disease and any surgery is ultimately only palliative in the long run. But to not be able to eat is insane isn't it, we need to eat. I am lucky in that i have the realiability of depending on my jejunostomy feeding tube for general nourishment overnight. Yes, even if i have the dilatation or botox or can i have both? Surgery is still an option in that they can perform a myotomy on the sphincter (so the surgeon told me yesterday) or remove it alltogether.
Just to reassure you I have a pyloric sphincter dilatation done by an upper GI surgeon earlier this year with no side effects. They know what they are doing, so have faith and I am sure all will be well
I should have asked my surgeon in Liverpool why he can't do the dilatation there or one of his collegues in the hospital. Why he feels the need to referre me to see this Doctor Frost who i found worked in Salsbury District Hospital i really don't know. All he told me was that Doctor Frost was a vastly more experienced doctor when dealing with patients post oesophagectomy who went on to have problems with the pylorus sphincter. It took some detective work on my part to find out where this doctor Frost worked.
Our experience of dilaton/botox has not been quite so succesful for us - and I thrown this into the mix only to give both sides of the story. My husband was diagnosed with OC in Aug2011 and had his gastrooesophagectomy in December 11. He had very little stomach left to pull up by the time they had finished and has had problems not with swallowing so much but with pain/vomiting after eating. Barium swallows showed a severe narrowing at the pylorus - he proceeded to a dilation which really helped - for about 48 hours - then back to his "normal" - another swallow showed it was even narrower and he had another dilation - no different really - he then had botox and for him - and each case of course is individual - it made things much worse - more pain, much more acid - and we could only wait for the botox to wear off - our next option would be a pyloroplasty - but would be irreversible and not guaranteed to succeed so we are going to think about that. He has just had a change of medication from Metoclopramide to Domperidone which has had truly remarkable results and we hope to avoid any more dilations and certainly any more surgery . Hope all goes well for youl.
All the best
My surgeon in Liverpool has referred me to a more experienced doctor to do the dilatation. This doctor has far more experience so i was told with Achalasia, oesophageal dilatation, pylorus strictures etc all post oesophagectomy problems. Now i never thought to ask the surgeon in clinic on Monday if this other doctor was based in Liverpool maybe at another hospital there. But no, the only details that i found for this doctor was in Salsbury miles away. I mean it takes 2 hours for me to get to Liverpool from where i live but for me to travel to Salsbury would be horrendus. I worry that the hospital where this doctor is based maybe too far for me to travel there and back in the same day. I have tried Domperidone and must admit that it does nothing for me so i remain on Metoclopremide as it helps a little and with the nausea. My surgeon in Liverpool says that he can perform the pyloroplasty for me but would be as a last resort and will be discussed in clinic in December after i have seen this doctor Frost in Salsbury?
I always think it is a good thing to follow the surgeon's advice. It is a long way to get to Salisbury, but it sounds like it is a benefit to have somebody who is more experienced with achalasia (it is not common, after all). Do hope that you get on all right with it.
It might be worth ringing the specialist nurse prior to the appointment to see if, on the off-chance, anything can be done to help with the travelling problem.
Thank you for answering my problem question. Travelling to Salisbury from my home will take 5 1/2 hours and if the appointment is mid morning then i will have to leave home about 3am! Unless i can stay somehow in Salisbury overnight before the appointment then i am stuffed!