Hi all, so was diagnosed may 2024 with sarcoma, and MPNST on the back of my head, which by the time they operated was about the size of a grapefruit. Luckily for me it hadn't invaded into the bone, however they basically had to remove all the soft tissue on the back of my head to remove it all, and then reconstruct my head by taking muscle from my back and a huge skin graft from my thigh.
Fast forward to now, I'm 4 months post op, thankfully scan show clear margins and no chemo needed. The skin graft has taken well and healing looks good they say. Am so grateful for this outcome but am now trying to adapt to my new normal and coping with the healing process and scarring.
However it covers such a large area of my head and they had to cut into my neck and remove part of the muscle there when connecting up the blood supply. So I am still incredibly stiff and sore, it pulls everytime I move, and I have a constant feeling of pressure. I still moisturise it and try to massage, but am just wondering if anyone else has had something similar and can advise what can help? Or how long before it started to feel more normal and not constantly be aware of?
I long for the day I can lay down on my pillow again and know what being comfortable feels like!!
Hi Venhen
I haven’t had the same cancer as you and I had to look up MPNST but I thought I would at least pop in a reply to say hello
I would lean heavily on any physio you can get your team to point you to it sounds like it might be hard work but I’m hoping there is help out there for you
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
