Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Helen's Story

My operation (July 2001)  made a fantastic difference in that I could walk again - after surgery the main problem was with my right arm, as root nerves were cut out during the operation, and have been left with a throbbing pressure 24/7 in my arm and hand with some restriction in movement. Residual tumour remains but its growth rate is monitored by MRI scans and the last MRI in 2007 showed the growth was minute and no further operation is planned. However, also in 2007 I started having problems with the ulnar nerve causing muscle wastage in the pinky area of my left hand, presumably due to overuse of this hand. To rest my left hand I now have to try and write more with the damaged right hand and aim to find a balance by using each hand for different tasks to minimise damage.  I am suffering more from burning sensations in the neck and attribute this to my hand problems.

Meeting other people through this website has been humbling and has helped tremendously.  I would like to hear from others who have had a “schwannoma” tumour.

Update August 2018

I had my last MRI scan in 2010 and as far as my consultant is concerned I am not any longer ‘on the books’. The 5% tumour that remains post operation is contained in a protective sheath that my body seemingly has created and has not increased in size from 2001 to 2010. I still have pain in the shoulders and oversensitivity in my right arm and hand.

I have had a variety of health issues over the intervening years and feel my immune system doesn’t cope at times. I have optical hypertension which causes blurred vision and various arthritic complaints. In March 2018 I was diagnosed with Rheumatoid Arthritis and also have an underactive thyroid. I have suffered from fatigue problems since 2001 (post tumour op) and have had to learn to pace myself which is easier now I am retired. Like many others I don’t like taking drugs and found the first two months on Methotrexate (for RA) gruelling as I felt ill all the time. However, my body is now accepting Methotrexate and I have few side effects but the great benefit of being free of pain and swelling in my hands and feet.

I enjoy my hobbies of gardening, landscape painting and walking within the limits of
my dexterity and fatigue.