Hi everyone,
My teenage son was diagnosed with MPNST in his sacrum last November and was referred to Birmingham for pelvic surgery. In February they decided it was a benign Schwannoma. Now 12 months later they informed us last week it is actually a MPSNT after all!! We are devastated and so angry. He’s been left all this time without the correct treatment. He had surgery in June to remove part of it too and a cyst aspiration a month ago. There’s still a large tumour around his front.
We are now back to where we were 12 months ago. The surgeon has frightened my son to death about surgery which would be life changing so he’s refused that, he took his hope away too which I’m livid about. Now they’re referring across to Christie’s I believe but we are waiting on more tests. He is in agony pain wise and taking so many painkillers daily. I have just been thinking about other things we could try and thought of Acupuncture, this is very good for nerve pain. Has anyone tried it for pain relief?
Hi Bumpband
Sorry to hear about your son and I can only empathise with the struggles around the long route to diagnosis - my wife's sarcoma also took some time to get "right" but one plus in that can be that for her the cancer was growing quite slowly. Sarcoma is a bit of an issue since they are so rare many doctors will never see one in their entire career.
Janice has tried acupuncture though I think more out of curiosity than anything else. We have some information here on acupuncture that I think is mostly common sense .
<<hugs>>
Steve
