pain appears to be getting worse

[olive14]

My husband Graham had his Ivor Lewis Operation 3 months ago. He has been in constant pain ever since and can barely do a thing. The thing that's worrying me is the pain on his right side has started to become even worse and he is having is pain relief increased again. None of the medical team appear to be that concerned and keep saying everyone's recovery is different, but should his pain really be getting worse. I would feel more reassured if he had a scan or x-ray as I'm worrying something more sinister is going on. he still hasn't started his post op chemo as he's been far to ill. Apparently he had 17 lymph cancerous nodes removed. Again nobody has really explained much to us , we feel kind of on our own. is it normal to not have any follow up scans after having your operation. I think we would both feel a lot better if we were reassured nothing more sinister is going on.

[haward]

No scan after the operation is normal. After all they have had a pretty good look around during the operation.

What kind of pain is it? I had intermittent pains in my lower abdomen after the op and this went on for a long time. It has got a lot better but I'm thirty two months down the line.

You should be getting more information. You could talk to someone from the OPA. Have you tried the helpline? It's 01217049860.

Haward

[olive14 in reply to haward]

Thank you for replying. Its quite low down on his right side under his ribs. He feels like he will pass out every time he stands up. Tramadol isn't touching it. He is going to the doctors this morning as he feels its a completely different pain than the pain he's since his operation. He has had a lot of post of problems. he had a leak in the join and he has had 4 dilations so he is still very weak and fragile.

[fortunatus in reply to olive14]

the Ivor Lewis procedure is major surgery (obviously) All sorts of new pains appear in its aftermath. I would counsel a degree of patience (difficult I know). It may well improve. But as I say new pain is the legacy of this procedure. I agree, however, that you need some further reassurance from those medically qualified to give it. Most of us who contribute to this site are only speaking as lay persons Our experience is valuable but not necessarily definitive.

[olive14 in reply to fortunatus]

Thank you for your reply, will pray for patience. Your shares are all so important as it gives us a greater understanding of what's happening and eases a lot of fears.

[philsayer]

Pain on the RH side could be a rib. Do you know if the surgeon deliberately broke one to improve access during the op? They often do, but not always.

A broken rib takes a long time to mend - mine still hurts 15 months after the op.

[olive14 in reply to philsayer]

Thanks for replying. No one has told us anything since the op. I think maybe because he's had so many complications we haven't had the chance to sit and have a proper chat with the surgeon. Its a new pain and his tramadol isn't touching it. If feels like he will pass out when he stands up. We are both very worried so were of to see the doctor.

[Steve101]

Hi

My wife had her op 18 months ago. She also had excruciating pain at about 6 weeks. It can be due to nerve damage (that is inevitable during the op). Normal pain killers do no control nerve pain. My wife was prescribed Gabopentin that is for nerve pain (I asked the GP for it after reading posts on this site that suggested it could be nerve pain). Gabopentin takes about a week to get in the system but it is effective at controlling the pain caused by nerve damage. After a couple of months my wife was able to reduce the dose and now rarely needs to take them.

I don't know whether the pain your husband is experiencing is due to nerve damage but it is worth while asking.

It is still very early days and you are still very 'raw' following the op. Things do get better!

God bless

Steve

[olive14 in reply to Steve101]

Thank you kindly for your reply, upper gui nurse is going to see if they can bring my husbands follow app a bit closer We have just got back from the GP who gave my husband a good check over he cant feel anything untoward which is a relief. he has told him to take his zapain and tramadol and up his amiltriptyline . just hate seeing him in so much pain. I hope your dear wife continues to make good progress. Blessing to you both Helen.

[Steve101 in reply to olive14]

Hi Helen

In the case of my wife the tramadol made no difference to the pain (as it was nerve pain). It was only when she took the Gabopentin did she get any relief from the pain.

If the pain continues I would ask your GP if it could be nerve pain and whether he / she would consider prescribing Gabopentin. But don't suffer the pain longer than you have to!

God bless

Steve

[olive14 in reply to Steve101]

Thank you Steve for your reply. I am wondering if that is why the doctor has given him Amiltriptyline as I think they can help with nerve pain. Combining the Tramadol and the Zapain has appeared to help this evening, but I will deffo make a note of the medication your wife was prescribe for the nerve pain as they seem to work best for her. What a horrible operation for anyone to have to go through, esp with post op complications aswell. I think he will be going back in hospital shortly to have another dilation as his new join just keeps closing over. Poor husband is so very fragile.

[Hidden]

The more lymph nodes you have removed, the more you are likely to have post-surgical pain in odd places. Sometimes the nerve system transfers the pain to another part of the body, so it can be very difficult to pin down. It certainly does not at all sound like something cancerous that was not found, or has developed since: but for a while you feel very uncertain about these things until you regain confidence in your new body, and it is quite natural to be worried. It is perfectly normal not to have scans after the operation, but I do understand that sometimes a scan that is negative would reassure you.

There may be some adhesions (ie bits of organs stuck together), and there will inevitably be some effects from the surgery (eg rib cutting, depending on the technique the surgeon used).

It sounds as if he is ill and weak as well as being in pain? He does need to keep up nutrition levels, but do not worry about what he eats, or the amount, as it is tremendously frustrating when he does not want to eat the food you have so lovingly prepared. If there is something that he can tolerate, just carry on with it, but be careful about anything sugary or too fatty.

Normally I would say that trying very gentle progressive exercise would be beneficial, as this starts to get the body moving again. A physiotherapist might be an idea in due course, depending on your husband's condition.

As a very rough rule of thumb (and bearing in mind everyone is different, and one should not think of 'ought' to be recovering at any stage), skin heals in 10-14 days, muscles and incisions regain strength in 2 - 3 months, and nerves heal in approximately nine months, with normal activity sometimes 18 mohths, but often longer. So in some respects the doctors would not be overyl concerned, as your husband is within the normal range of recovery to some extent. But it would be worth contacting the hospital and checking with the specialist nurse because that is what they are there for.

[olive14 in reply to Hidden]

Thank you for your informed reply it has reassured us both a lot. He has been told by his GP today to up his pain relief and take his zapain with his tramadol, and increase his Amiltriptyline. The GUI nurse is going to see if the surgeon can bring his follow up appointment a bit closer. So will just have to get on top of managing his pain in the time being. His GP gave him a good check over and cant find anything to worry about so I feel more at piece now. Its just to hard to watch someone in such pain, I feel so powerless. Bless you Helen.

[lilia]

I'm nearly nine years down the line and still get pain on my right side. I too had a leak and had a chest drain in for 8weeks which caused a lot of nerve damage. The pain is worse in cold damp weather and when it is at it's worse I find a wheat bag heated in the microwave placed on the site is a big help.

[olive14 in reply to lilia]

Thank you so much for your reply, it has helped us a lot to hear from people like yourself who have been through it and can share from your own experience. Its so upsetting to Know what you have been through and may you continue to make good recovery. My husband appears to be calmer this evening I think the doctor giving him some stronger pain relief today is starting to ease some of his pain. Will take on board the wheat bag suggestion we will try anything right now. Many thanks Helen.

[Jforgh]

Seven months on still in a fair bit of pain lower right side ribs and below also in the area of the shark bite on my back.I have had no follow up scans either on on a positive note my lymph nodes showed no cancer so no need for any more chemotherapy.I was told recovery from such major surgery could take a long time.Stay strong