nf1

Len was born with neurofibromatosis but not diagnosed until he was 36 years old.

The journey began with pain.

Infrequent and manageable at the start, Len ignored the pain in his left shoulder and arm.  Assuming it was a pulled muscle or pinched nerve, he lived with the pain until April 2007.  The visits to the doctors started, including series of x-rays and specialist appointments.  He tried pain med after pain med, nothing making enough of a difference to be considered better.

In October 2007 Len was able to get an MRI.  The technicians immediately found two tumours wrapped around his spine at C1/C2; a few hours later we heard the word 'neurofibromatosis' for the first time.  The on-call neurosurgeon took one look at Len's torso and knew his condition, proof that NF1 is an obvious but little known disease.  Additional MRIs over the next week uncovered several larger tumours along the length of Len's spine.

A week later Len underwent a very successful surgery to remove the two tumours from his neck.  We were hopeful for an improvement in the shoulder pain, but there was none.  Back to the specialists we went - this time a neurologist - and the pain medication trials were renewed.  In August 2008 we thought perhaps we had found what we needed in gabapentin; the results were shortlived, and by March Len was in agony again.  We have since found a drug that makes the pain mostly manageable, though Len is never pain free.

The diagnosis of NF1 was a varied experience; there was the reason for his pain, but no the solution.  There were so many answers as to why his body is the way it is... the surface fibromas, his scoliosis, memory issues, learning disabilities and so many more.  Yet it has been a difficult thing to wrap the heart and mind around the existence of a progressive disease that causes tumours to grow on the peripheral nerves.

In faith we carry on, knowing that our faithful Saviour is at our side, whatever Len may face in terms of his NF1.

To learn more about neurofibromatosis, please click here.