3 years ago I had an lvor lewis (osphogectamy) T o since the operation l experienced occasional pains in my stomach after eating and a reffered pain to my right shoulder at xmas l was very unwell and a few weeks ago felt unwell and an ambulance was called taken to the A&E department then onto ward for observation l was experiencing nausea which made me wretch, they gave me morphine to control the pain which subsided, l was kept in over night and had a CT scan and xray they thought it might be my gall bladder causing this and said they would remove it, however the ct scan showed that there was no reoccurence and l had a hiatus hernia in my diaphram as a result of the original operation, and was advised to report any further pains , 3 weeks ago l was driving on thhe motor way and felt unwell l pulled over annd the pain intensified, l started to wretch, the sudden chage in intense pain was horrendous, l went blind and my breathing was reduced to gasping for air, l managed to dial 999 and managed to stay on the line until the ambulance arrived, they asked me what was wrong and l managed to telll them that l had stomach pains and was dying, l then lost consciouness, the next thing is l awoke to see my daughter and son who both live in canada walking to my bed,
Apparently my bwels had burst into my chest and restricted my lungs and heart, my heart had stopped in the ambulance they restarted it and it stopped again in A&E they informed my wife that it was unlikley l would survive the night and advised my children to come home as soon as they could, l had two major operations the first to restore my bowels to the their correct position l was put into an induced coma for three days, the second operation the following day involved a bowel resection, and being sewn up, the surgeons and nurses were amazed that l survived, but were iunsure if my brain had been affected due to my heart stopping, and warned my family that l may not remember them, ll remember everthing up till blacking out and have suffered no memory problems, l was removed from intensuve care and taken to a high dependency ward, 8 days later l was discharged and am at home now recovering, due to the fantastic NHS surgeons and nurses and the ambulance paramedics l would not be posfing this , if you have any symptons like pains in the bowels or stomach with combined shoulder pain then do not ignore them as l did for 2 years. I dont want to alarm any of you as this is probably an isolated case, l have nothing but praise for the care and and life saving doctors surgeons and nurses who looked after me.
Mike
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Thank you for this very helpful information. After an esophagectomy, we tend to just assume that all pains or problems are the "new normal" after such a life-changing surgery. It is important to realize that any problems that seem out of the ordinary should never be ignored, even if our doctors aren't quite sure what the cause is.
Glad you pulled through, and thanks again. /w
How awful! Thanks for sharing your story, and we are so glad that you are now well enough to tell the tale!
This is definitely not a normal risk after this surgery. I wonder if the pain in your shoulder was because of the nerves transferring the feeling from your diaphragm? Some people do suffer from shoulder pain because of the length of time that their shoulder was held above their heads during the surgery, but this sounds different?
I think I am right in saying that a certain degree of hiatus hernia can be involved with this operation, and it sounds like this was a major rupture of your diaphragm. If you have had an oesophagectomy you are very likely to need specialist surgeons to be involved if anything ever goes wrong in your chest area in the future; and you are right to praise the surgeons and others involved who did such a fantastic job on you. I hope your recovery continues well.
If you have had an oesophagectomy there are things like being laid flat that can cause problems, and there was a medic-alert bracelet that was featured in an OPA newsletter a year or two ago. I do not suppose that the paramedics had come across someone with your history before. The resuscitation obviously worked OK despite your surgically re-arranged chest.
Having less bowel will also carry a risk of giving you additional digestion and absorption problems, but you will have a see how this works out in practice and perhaps consult a gastroenterologist if the need arises.
We tend to think that everything can be avoided if we had only not ignored pains in the past, but it might also be that some traumatic events would happen anyway, so don't blame yourself for not predicting it. It is not as if you had not been in hospital for check-ups / treatment. Perhaps we all have to be a bit more careful about the pains we suffer (especially new ones), when they come and go, and how we describe and analyse them so that we give the doctors the best chance of working out what is wrong. But that confidence in knowing our own bodies does not come easily.
It will be interesting, as and when you return to see the surgeons, to see whether they believe that your problem could have been predicted or avoided, but it might be that you are the very fortunate survivor of a very rare traumatic event. It will take time to get over it all!
The OPA helpline on 0121 704 9860 should be able to give you details. I remember thinking that they were quite expensive, but cannot remember the details now.
I got a stainless steel chain bracelet from medicaltags.co.uk. It's engraved on the front "OESOPHAGECTOMY DO NOT LAY ME FLAT" but they will engrave whatever you want. I see our local Boots have brochures on their counter advertising medical bracelets and pendants.
I have a Medic Alert pendant that I wear round my neck. I found it on Ebay years ago. It says "Esophagectomy" on one side, and "Do not lie me flat"on the other. It was not expensive, it's just stainless steel. The engraving was free.
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