I’m 2.7 yrs post Ivor Lewis (March 19) and subsequent surgery for a diaphragmatic hernia in May 20 and gall bladder removal in June 2021. The gall bladder removal was a gall stone no trace of cancer.
Following the surgery I occasionally felt cramps and stitch like pains in various areas of my core, sometimes near the site of surgery but often anywhere from my diaphragm down. This disappeared about 2 months ago.
Lately I’ve been getting what I’d describe as pins and needles in the same areas to the point that it can make me feel off colour. Occasionally it’s accompanied by a numbness in my side at the site of surgery.
Otherwise I’m doing ok, im 56yrs, a good weight although a victim of dumping definitely can’t drink and eat in close proximity ; and also get intermittent breathlessness…
I’ve also tried to stay positive and optimistic but this is really causing me anxiety… anybody experienced the same or similar?
Thanks in advance
K
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KfromUK
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Hi - I’m 55yr and 6yr post Ivor Lewis - to be honest it’s still a roller coaster and I think it will pretty much always will be as the surgery is huge - I still have numbness right down my right side - some days worse than others but it’s been like that since day one. The dumping should get easier - I had it constant for about 3 yrs - not so much now - if you click on my name I shared my journey and you can read it if you like - I think any new symptoms are best told to your specialist nurse - anxiety is pretty normal, you’ve been through so much - maybe your doctor could give you something to help - I really find being outdoors the most relaxing thing - it’s still very early days for you - I went for a walk every single morning after I left hospital - that really helped me - take care x
Hi MollyThanks so much for your reply, really helpful.. whilst mostly positive, sometimes it just hits you doesn’t it? And so the slightest twinges become a worry.
I read your journey and I’m humbled how positive you remain.
My care has only recently transferred to a new Trust following relocation and my new consultant sent me for a CT scan yesterday to ‘get a baseline’ of where we are. …fingers crossed all still good just ‘journey niggles’
I wish you all the best K - hang in there and take it day by day - it’s a tough journey - when I got to leave hospital my surgeon said - now look this isn’t going to be easy and you will have some ‘very’ dark days but you’ll get there - he was spot on ! All the very best xx
It sounds like you are suffering from peripheral neuropathy, which is caused by nerve damage and is common after major surgery. It will improve over time, though the numbness may persist. If you are worried, speak to your medical team. Physiotherapy can sometimes help.
With next blood work have your vitamin B 12 levels checked. Having an esophagectomy puts us at risk for malabsorption of this vitamin, can cause a pins and needles sensation.
HiThanks so much..never heard of this.. my diet is pretty poor I play safe to avoid risk of dumping but realising overall my diet is bland and pretty nutritious (not)
K
Hi I'm Martin and 7 years post op. As everyone else has said I think we all get these unusual sensations and worrying issues and is par for the course although not of much help knowing that when you really don't feel good or maybe even slightly anxious, after all not knowing if a pain or sensation is just part of the 'new normal' or not can be worrying. I get a very sharp pain in the bend of the colic flexure (mainly the right) just under the rib cage and the first time it happened I was quite worried, it was extremely painful and lasted for hours. I spoke to my consultant and he put it down to scar tissue and It's happened periodically over the last 5 years and I'm used to it now, tends to happen if I eat a meal and just sit for too long afterwards. Just like Molly I get the stiffness on the right side because of the muscle they severed and re-joined, I can only describe it as having a seat belt across my right side that is incredibly tight and being a drummer by profession was advised to get back on the kit asap as this would be one to the best methods of physiotherapy I could utilise. I also get twinges of pain and discomfort in my right shoulder from having my arm up above my head for the surgery and use Fenbid Ibuprofen gel (10% strength) on prescription for most of the physical pain, can't do a lot about the intestinal pain (apart from washing up after dinner, that helps to prevent it). Hope there's some help here for you
Hi MartinThanks for your reply. I so agree that each of us are so different making a standard post op lifestyle almost impossible to describe.
My constants tend to be a similar sensation to the seat belt you describe but the pressure is in my breast bone area.
I think my other frustration comes from the fact that I have a period of relatively good days and then clusters where I’m particularly breathless or in pain or discomfort!
How interesting that drumming helps!!
Thank you again for taking the time to reply it really has helped
Yes that is frustrating and of course as you get older we get those days from completely unrelated issues too which makes it even more annoying (I'm 65) so what I tend to do now is take the glass half empty, half full approach, every uneventful day is now savoured and enjoyed whereas on every problem day I'll try to distract myself and get through it looking forward to the next good one. By doing this a lot of the pain and irritations seem to become less noticeable as my brain learns to accept them.
I am just over 4 years since Ivor Lewis and still have constant numbness round the scar. I assume its just one of those things. I had emergency surgery for diaphragmatic hernia in Nov 19. Still get twinges on that scar. Like others I don't seem to absorb nutrition from food properly and this is still being investigated. I think life still is improving very slowly and anxiety is still ever present. Like a lot of us, I just remember I am lucky to be alive (twice over) and concentrate on what I can do rather than can't.Don't be afraid to ask your specialist nurse about any worries though.
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