I'm 40 and have Neurofibromatosis. Up until I was 27 I really never had any issues with it whatsoever. Right around my 27th birthday I was diagnosed with MPNST and since then I've had a few recurrences - one in my leg the other in my lungs. When the oncologist said that there was a lesion in my spine I was shocked. However, I later learned that mets to the thoracic spine are not uncommon with this disease.
In a couple of weeks I'll undergo a multi-level instrumented fusion (t-9 to l-3), spondylectomy (t12) and laminectomy. My problems are a result of spinal metastases from sarcoma. There's a growing lesion in my t12 vertabrae and it has to be treated. I've already undergone stereotatic radiation and this surgery is the next step. The neurosurgeon initially refused to do the surgery due to the risks but I had a second MRI which indicated the lesion was growing and he changed his mind.
I'm obviously nervous about the operation. The thought of having long term pain or disability as a result of this surgery depresses me. About a month ago the pain from this lesion kicked in and I was stuck in bed for a day. Even if I moved a half an inch the pain was unbearable... it was worse than my first experience with cancer when I had a stage II-B sarcoma in my sciatic nerve.
Right now I'm getting around just fine. My first surgery back in 1999 left me somewhat disabled. I ride a recumbent trike (ICE Sprint) for fun and I'm hoping I can get back on it after the surgery even if I need to wait a year.