7 months post Ivor Lewis - pain after... - Oesophageal & Gas...

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7 months post Ivor Lewis - pain after food intake

Beena45 profile image
7 Replies

It’s been quite a journey so far and I consider being lucky with fairly good , fast recovery - ongoing. My first CT screening ( end of 6 months ) came out clean as well last week.

1. Past three weeks a pain has developed between my lower right shoulder blades and backbone ( feel like a nagging muscle pain 6 out of 10 intensity) to begin with & slightly spreading to the ribs on right side where larger incisions as part of surgery. This pain is triggered usually after having food. I tried varying portions and cuisines, but same outcomes. Has anyone been in this situation ? Any ideas ?

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Beena45
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liz_crisp profile image
liz_crisp

I have a nagging pain that is around the top of the scar, I'm told that there is often damage to the nerves on the ribs after the op. It feels like it's it's muscular and comes after sitting up in an office chair or doing things like polishing, washing, painting, etc. In the early days I attended a pain clinic and had the nerves microwaved or burnt. This eased it a lot but I think the nerves have grown back as 11 years on it's starting up again. I find pain killers and a hot pad are my best cure xx

Janashlin profile image
Janashlin

I had the very same for about the first 12 months.

Nagging pain which would turn to shooting pain when I ate or drank.

It gradually got better after a lot of Pilates and acupuncture. I still get the pain the odd time after eating but perhaps only once a month vs every time.

Popsic profile image
Popsic

Hi, i get this too, in the beginning ( I'm 8 yrs post op), the pain was excruciating, they told me it was because I was over eating, I cut my portions down and over time it's decreased. I still get it occasionally, it can last up to 3 hours, I find putting a warm hot water bottle on the area helps.

Notknowmuch profile image
Notknowmuch

Hi Beena45,

Have you tried some gentle stretching exercise?

My husband sees an Osteopath and he has given him some gentle exercises to do. He said the exercises have given him some relief from the pain at the back and side where the scar is.

Mentalmicky6 profile image
Mentalmicky6

I had the same discomfort in the shoulder blade area and was told to expect it for a couple of years or so, I'm nearly 9 years post IL and haven't noticed it for a few years

telford-hiker profile image
telford-hiker

Hi..I have a terribly sensitive nipple on the right side ,where the shark bite scar is 12 post IL..anything makes it sore and have also developed frozen shoulder,same side for the last 5 months ..which is extremely painful and could have been caused by the nerve damage

Sorry to hear about the pain. Unfortunately from what I've seen, heard & read this pain is something we all experience with various levels of intensity.

I'm 7 years post-ILO and still experience pain on a near-daily experience - during the ILO I had two drains inserted through my rib cage - the pain radiates from the 2 drainage holes and goes up to the area around the top of the incision on my shoulder blade and around to my sternum. Right nipple is a little weird - sometimes no sensation, sometimes LOADS of pain.

Pain is anywhere from 2/10 all the way up to 10/10 and varies depending on what I've eaten, how much I've eaten, how little I've eaten, etc. Too much sugar, too oily, too fatty and the pain is worse. Too much. Too many carbs. One small slice of Garlic bread is ok but two slices causes pain.

I've tried a load of different things with varying degrees of success - main issue is that the sort of pain we experience is related to nerve damage vs. muscular pain. Accordingly, the normal Paracetamol, Aspirin, Morphine, etc tend not to have any impact.

I've been to a pain management expert (anesthetist on my ILO) - he's zapped the nerves in my ribcage - Intracostal 5 and 6. Just a mild zap - tends to relieve a bit of the pain for perhaps 3 months - but the pain comes back. He's offered to kill the nerve completely but I'm not sure I'd like to have no sensation AT ALL in my rib cage.

* Pregabbalin - I'm currently taking 200mg twice daily. I had been on 300mg but didn't like the feeling so have titrated down to 200mg. I've tried to go to 150mg with a view to getting off it all together but can't get below 200mg

* Tapentadol 100mg Slow Release - twice daily. We tried to get off the Pregabbalin and thought that Tapentadol might be the answer. It definitely helps and leaves me feeling less "groggy" than the pregabbalin

If I forget to take the above (specially the Pregabbalin) or run out for a few days the pain can be so unbearable I can not move.....

Lots of options - ranging from zpping nerves through to killing them completely. Or, using medication - Pregabalin has really helpd me but I fear I'm now hooked !

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