Hi all,
I was hoping to get some advice from those of you that have been down this path. sorry it’s a bit of a long one.
My 46 year old husband had his TPE on the 10th April to remove his tumour, which involved also removing a good chunk of the left wall of the pelvis. They didn’t have to remove the sciatic nerve but were around that area and we were warned that he may well get nerve pain following the surgery. The first two weeks post surgery went well - he surprised everyone by how well he was able to walk and was doing circuits of the hospital within 2 weeks without support.
He had a numb left buttock initially but about 2 weeks ago this changed and instead he now has horrific pain in his left bum and leg whenever he puts weight on it. They’ve given pain meds which has helped in as much as he is now not in pain when not moving, but the moment he walks he’s then in agony for the rest of the day and isn’t able to walk more than a couple minutes a day. He’s getting very minimal physio- 2 visits a week to go for a walk, and the pain meds are reviewed weekly and have just been increased a couple of days ago.
The surgeons are telling him he needs to up his walking and he really is trying! As I said before the change in pain he was doing 4 walks a day of 15 mins+ and was at the gym 5 days a week pre surgery to try and prepare as best he could, so it’s not that he’s unwilling to try or work through pain, it’s just he’s not able to at the moment without then being in extreme pain for the next 12 hours or so.
Does anyone have any advice on what I can do to advocate for him to help get past this point, either with more pain meds or more physio? I’m not there when the staff do their rounds and I think he’s gets easily railroaded when he tries to ask for more help. This isn’t a criticism of the medical staff as I know they’re at capacity and have generally been great. I get recovery is tough but just being told to walk more with limited support is really getting him down and he’s starting to get quite despondent. He’s been so proactive and determined all through this, it’s heart-breaking to see him try so hard but not really improve at all.
sorry for the long post but any advice would be hugely appreciated.
Hi RoseInTheSun
I’m really sorry to see how difficult things are for your husband, especially after he was doing so well post surgery. Pain definitely gets you down when it’s so bad, so it may be that he either needs his pain medication increased again, or changed to something which works better-I don’t know what pain medication he is currently on, but there are many different types, and some specifically for nerve pain. If he finds it difficult to ask for more help, are you able to arrange to have a chat with his doctors outside of the ward round? You lose muscle mass in your legs very quickly when you cannot mobilise easily, and it can be hard to regain that.
Having had no physio at all while in hospital, and none when I was discharged, in retrospect I would have pushed for this, and to have a plan for ongoing physio at home plus suitable exercises he can follow on his own.
It’s a long and very difficult road to recovery, so the more help he can have from the start, the better it could be. I wish I had advocated more strongly myself at an early stage and not said everything was fine, because it absolutely wasn’t, and I didn’t get the help I should have. I know you’re keen to do all you can to help, so maybe you need to be an extra voice for him?
Sarah xx
That’s a really good update and sounds like he’s doing very well. Clear margins is a brilliant result, and hopefully he’ll be home very soon. It’s always good to get back to your own surroundings and bed!
Sarah xx
