I had my Ivor Lewis in June 2011 and things seemed to be getting a little better until about 6 weeks ago.

[SuzyJ]

I have started getting shooting pains and tingling sensations along the scar around my shoulder blade. I am also getting severe pain in my back all around the right shoulder blade area. If I do something as easy as brushing my hair, it feels like a crushing band around my middle which really takes my breath away. Another development occurs when I swallow food or drink. I get a very sharp stabbing pain and an almost pins and needles sensation which runs from the end of the scar under my right shoulder blade and goes along the right side of my breast to the nipple. Pain killers aren't touching it, the only thing that eases it slightly is a firm massage. I also have to take a stick to lean on when walking my dog, I need to lean on something when the back pain starts. Any ideas what is causing this and why it has suddenly developed after all this time? I am 55, not sure if age is relevant?

[Demon]

Hi Suzy

I was plagued by this for a long time, the tingling sensation are nerves trying to repair due to the deep incision. Shoulder pain is common due to the position of you arm above your head during the operation, keep it warm and keep mobilising it, I found Deep Heat or Radian B helpful. Try to stay on top of the pain using pain killers but don’t wait until the pain is unbearable. Sometimes you seem to make swift progress and other times you feel you are going backwards; it’s all part of the long recovery, alas this is not a sprint but more of a very long marathon.

Good luck with your continued progress,

Steve

[SuzyJ in reply to Demon]

Thanks Steve, I've tried zapain and co-codamol and neither of them touch the pain. A hot water bottle and massage help a little. I see my consultant next Thursday so perhaps will ask for some stronger painkillers.

[Demon]

Suzy

I would also add that in some instances a rib is removed but in the majority of cases they are cracked open during the Ivor Lewis procedure, and like any fractures this can lead to arthritic situations later on in life especially since our stomachs have been removed or reduced in size leading to less absorption of nutrients such as calcium. My pain is still quite prevalent under the right shoulder blade especially in various seating positions and even when I am walking. I will be 5 years post op next April, and I believe that I will just have to live with this particular discomfort. I do swim regularly which I find helps, but you do need to find a warm pool to swim in, and a hot tub and a steam room is a big bonus to.

Steve

[SuzyJ]

They didn't remove a rib and I'm not sure if they cracked them or not. Sitting can be uncomfortable, I'm better if I have something pressing into my shoulder blade. Can't quite work out the shooting pain in my breast when swallowing, it's very uncomfortable though. It just seems things are getting better when something else happens and it goes downhill again. As you say, a long marathon and mostly up hill.

[Demon]

They have to remove or crack your ribs open to gain access to make join the join in the oesophagus which is quite brutal but necessary. It took about 3 years for the sharp pain in the right nipple to ease up. I would get an itch or tingling sensation along the scar and as soon as I touched the area I would get that sharp slicing sensation in the nipple, I would not worry as this is defiantly nerves and no amount of pain killers are going to stop that.

[Hidden]

I am now 16 months post op and still get the pains from time to time and Steves situation very similar to myself.Yes the ribs take a battering but surgeons dont always say about ribs but if you ask they will tell you.My rib was broken.It does get better in time or more bearable but as Steve says recovery from this type of op is a long road to recovery.I dont bother as I am alive and kicking!!

[SuzyJ in reply to Hidden]

Hi Griff, 16 months post op too but these pains only started 6 weeks ago. Alive and kicking yes. I'm normally 99% positive but occasionally can't keep that up. It just seems everything is gradually on the up and life is good, then something new comes up and knocks you back down again, hey ho!

[Hidden]

It seems odd that it has started now doesn't it, but nerves are funny things. Is it a physiotherapist who gives you the massage? Perhaps they may have a suggestion?

I think you should try and continue to resolve it as it is not right to have to continue to put up with it if something can be done, regardless of how pleased you are still to be around etc. I do not think age would be relevant, but there could be tension, posture or movement issues that might be relevant eg when pain transfers to other places in the body because you are 'nursing' another part of it. And the massage therefore makes a difference?

It is the sort of thing that surgeons probably know about, but won't necessarily be able to do anything themselves intervention-wise, because it may be to do with how different nerves connect up with each other. Sometimes nerves simply do not heal properly for a long time, but it does seem that they were all right immediately after the surgery?

You have described a set of symptoms that are fairly specific so I think I would start with your specialist nurse/surgeon and physiotherapist, but also ask your GP, not just for pills, but their opinion about what might be happening. Some of them are very good at that sort of thing. I believe some hospitals have specialists in pain relief but I do not know for sure about what they do.

If you try all those, and there is still no relief, I would not rule out trying some complementary approach or even acupuncture perhaps.

If you are around next Saturday morning (20 October 2012) you could always come to the OPA meeting at the Friends Meeting House opposite Euston station in London at 10.30am and ask Keith Hunt who does a lot of massage / complementary therapy work with patients at the Royal Free hospital.

[SuzyJ]

Hi Alan, I had some acupuncture last week and it has eased the tingling actually on the scar but not in the breast area. We went on holiday to Turkey and I had 2 massages over there, so not a physiotherapist but it certainly helped.

I have been totally numb on my right hand chest and shoulder blade area until these pains started. Maybe it is just things starting to heal but it's very unpleasant. I think you could be right about the tension, I tend to find at work I hold my shoulders very stiffly when I use my computer, I have to make a conscious effort to relax.

I have an appointment with my consultant this Thursday so will certainly ask him then. A friend of mine bought a deep tissue massager from her chiropractor and I'm going to ask if that may be useful.

Won't be able to make London next week but perhaps you could mention it for me? I have had a lot of acupuncture for the digestive side of things and it does seem to have helped considerably.

Thanks.

[Demon]

I also had numbness around the shoulder blade and scar area, and it was not until the feeling came back after about a year that I strated having the same problems as you. I still have no feeling around the abdomen as these nerves have never reconnected. I also work in front of a computer and I need to adjust my seat properly or I will suffer. Yesterday I was renewing some plumbing and squeezing through some awkward spaces, I awoke at 2am in terrible agony as my right shoulder blade had locked right up and my wife had to rub it with some deep heat. At the moment I am more concerned over the stabbing pain in the left lobe of my liver, I am putting it down to eating more and exercise, but if does not clear up I will have to go to the doctor.

Steve

[SuzyJ in reply to Demon]

Where does it ever end? Lying on the sofa with a hot water bottle on my shoulder at the moment. Paying for going out and about and having a great morning. Oh to be "normal" again!

[Demon]

Suzy

At least you are on a comfy sofa; I am on a late shift with a wonky chair! We have to find our new normal and as time goes on we can be pleasantly surprised at how good the new normal gets. Providing the cancer keeps away we are still winning, I hope you feel better soon.

Steve

[James-2015]

Hello Suzy and Demon

I am now 22 months post op and didn't mind the strange numbness but it has now been replaced by a pain very similar to what you have both described in a post some 4 years ago.

In the last few weeks I have had trouble sleeping due to a pain in my shoulder and along my scar area, almost as if the scar is trying to open. The pain often moves from my shoulder blade to the right side of my chest just under my nipple, as Demon has explained.

Life is good and we try not to grumble and I was just wondering how you both are now and maybe you discovered some soothing remedy or cure.

I have never been a fan of popping pain killers and since the op I am even less keen to swallow anything that may encourage or trigger something negative.

James