Pylorus Sphincter very tight. What are my options?

[christinehulmes]

I have been offered a gastroscopy and during that scope the specialist will decide on whether to dilate or give me botox. I have read a lot about the botox and i don't have much faith in that it will work for long. But the specialist says that he wants to try this first and since i am due to see the referring surgeon again on December 17th for a review i will try anything. My swallowing is getting worse and the hold-up where the pylorus sphincter is situated is getting worse so i will try dilatation/botox first then if the problem is still there in December when i see the surgeon i shall ask if there is a more permanent solution. I have a cousin with the same problem but because of the nature of his work has opted for regular botox every few months for now.

[Hidden]

When surgeons perform an oesophagectomy some make an incision around the pylorus sphincter to ease the transition of food out of the bottom end of the stomach. This can be entirely dependent upon the details of each operation. Some surgeons believe in not doing it at the time because it might turn out not to be necessary, and because it is a relatively straightforward thing to 'adjust' in the light of complications afterwards.

So this issue should not be an unusual development from the surgeon's point of view.

Is the swallowing definitely connected to the pylorus sphincter problem? There might feasibly be two things going on? Is the 17 December a long standing appointment? It would be worth getting in touch with the specialist nurse, describing how things are getting worse, and then discussing whether they could fit you in earlier perhaps.

It is fairly routine for the surgeons to make the decision about the best treatment when they can see what the situation is with the endoscopy procedure. Once they have the instrument in position they can then do whatever is appropriate.

On one hand it is good to think through what the options might be, but one also has to be guided by the judgement of the surgeon on the day. They tend to try the straightforward things first and leave more complicated options until later, and there is sound medical logic in that approach, but it is frustrating when you have the problem and you wish it could be solved tomorrow!

If it is any consolation, having a stretch / dilatation is a common thing when you have had this surgery, and some people have had the procedure repeated a number of times. Personally I never liked the prospect of going through a stretch, but after the first time I am far now far more relaxed about it!

[christinehulmes in reply to Hidden]

Thank you for replying to my question promptly. You ask in your answer if my problem is with the Pylorus Sphincter and i want to tell you that the surgeon currently looking after me catagorically says yes, the problem is with the pylorus and that he is certain that there is something going on there with the sphincter as shown on the barium swallow that i had done recently.

I don't know if there are 2 things going on there only that the surgeon wants to see me on December 17th for review and a chat and that he doesn't want me to fall through the net of the system if you know what i mean. He also wants the Gastro Specialist who is based at the same hospital, a chance to do the dilatation/botox procedure before i see the surgeon in clinic. Incidently the surgeon that i am currently seeing is a partner to the surgeon who performed my oesophagectomy back in 2004. I am now noticabley eating less and less. Thank god that i have the jejunostomy feeding tube to sustain me or i am posative that i would starve. i am now posative that the surgeon who did my oesophagectomy did not do the pyloroplasty at the same time. Is it unreasonable to ask the surgeon in December if i can have the pyloroplasty done if i am not happy with the dilatation/botox results?

[Hidden]

I think that it is a perfectly reasonable thing to ask the surgeon about the pyloroplasty and/or what would happen for the next stages. 7/8 years is a long time to have to put up with something that is not working properly and it is quite right that you should not fall through the net. If they have done a barium swallow test etc it does sound as if they have got things properly lined up in a logical order.

[christinehulmes in reply to Hidden]

Again thank you for answering my question so quickly. The Gastro Unit in The Royal Liverpool phoned me this morning for an appointment this Thursday to do the dilatatio/botox procedure but i have a problem with a couple of loose teeth one of which is very loose and am booked in to see my dentist on Thursday so i had to tell the nurse who phoned from the Gastro Unit about this and she said that she'd get back to me with another appointment but so far i haven't heard anything yet. Did i do the right thing there in saying that? Am just about to puree some chicken to try and get some protein in me for lunch.

[Hidden in reply to christinehulmes]

You cannot be in two places at once can you!

[christinehulmes]

No i can't be in 2 places at the same time but i hope to have an appointment to have the dilatation/botox real soon. Have tried to swallow some pureed chicken with some veg and gray. Only managed a small potfull the size of a yoghurt pot and i was full, will have to wait a while before i can have a drink or i may put some water through my jejunal feeding tube.

[ColinT]

Christine, Alan,

I am 2 1/2 years down the road from my Ivor Lewis which went well and thanks very much for posting your blog. It has been some some time since my last update as I have been getting on reasonably well but had 3 epsiodes of further chemo and radiotherapy for related tumors and what appears to be skin surface boils. All seems to be responding to treatment but not as well as I had hoped.

Anyway to get to the point Christine I have noticed that I am also getting more problems with swallowing and wanted to know what sort of symptoms you got when you first noticed that it was getting to be a problem?

I have some trouble on the first few mouthfulls of food that I try to swallow and it gets stuck for a minute or two. My Specialist is not unduly concerned at the moment but it is getting worse now. I can drink well and have started to use Complan as a meal addition when I feel hungry. Trouble is that as i am in the last few stages of my 4th chemo I don't feel too hungry and have problems forcing myself to eat and how to get my pylorus sphincter checked out. (not even sure if I still have one at the moment)

Can you give me any pointers?

BY the way Alan, I have enjoyed reading many of the blogs over the past few years and they are really helpful. Thanks very much for being there to all of you

Best regards

Colin

[christinehulmes]

After having my Ivor Lewis in 2004 there were a few issues but i dealt with them. It is only recetly that my swallowing problems have started again. I too have troubles with food and tablets going stuck so i mentioned this to a surgeon i was seeing for jejual issues that were caused by another hospital. This surgeon recommended that i have a Gastroscopy with a view to having a dilatation done. During the gastrscopy the Gastro doc did not do a dilatation at the time and he recommended a Barium Swallow first. Having had the Barium Swallow which showed a large 'bird's beak' narrowing in my Pylorus Sphincter and the x-ray doctor told me that i need a dilatation or botox in the narrowed area. Here we go again i thought. So now i am waiting for this dilatation or botox to be done. In the meantime the problems continue. Have difficulty swallowing fluid now!

[christinehulmes]

Well i went on to have the dilatation and botox injections into the pylorus sphincter. But i am afraid that the symptoms remain. The Gastro doctor who did the dilatation and botox did warn me that it can sometimes take 2 to 3 goes for it to work and that he'd put in enough botox into the sphincter to take me to the December 17th appointment with surgeon for a review. I am a little disapointed as you can imaging but i will take some more botox if i have to and discuss the pyloroplasty as well.