Posted 6/28/2015 3:56 AM (GMT 0)
Hi, I'm a new member - Martin. I found this site whilst searching others with Myelolamacia. But as Chronic pain is my major problem I am in the right place it seems.
I had two tumours on my spinal cord, one was pressing so hard that the cord was squashed hard against the side and was barely visible. Without removal I faced imminent paralysis. They also found a cyst in my lumbar and conducted surgery there tool.
Chronic pain is my lot. I am on so many painkillers I rattle when I walk - lol. Anyway just recently I had my second followup MRI & CT scan and it was concluded I had growing myelomalacia. Surgery is not anything they would consider unless life threatening - paralysis of breathing muscles. I expect that I will be paralysed at some point as my symptoms are getting worse. I an incontinent bowel and bladder, I cannot distinguish hot from cold, sharp from blunt - from T2 down. My arms, hands, legs etc twitch. The soles of my feet are so sensitive I can sometimes not walk on them. Occasionally it feels like I am walking through a sea of honey, other times my legs or hips feel like they weigh a tonne. Nerve damage, progressive or permanent is an ever-changing feast.
Please .... anyone considering spinal surgery ..... make sure it is absolutely necessary/last resort. I have had 3 and spent 4 months in hospital. Most of that time was in rehab learning to walk again but always always in pain.
Bottom line .... I am not scared of Myelomalacia, paralysis, death or pain. It is just nice to connect with others who understand the roller coaster that is chronic conditions. And most importantly is the fact that You often learn more from the forums than you do from a 15 min appointment with your neurosurgeon.