Originally Posted by ellijaygal

Nobody knows the severity of pain until they have had actual spinal CORD surgery/pain. No other pain I have ever felt has been worse, except possibly the CSF leak headache after my last un-tethering.

People tell me all the time "I know so and so who has a bad back..." I stop them-interrupt and say I have a bad back and it's manageable, but it's the spinal CORD damage that is excruciating.They don't listen. They keep on talking telling me how a chiropractor helped them, or exercise, meditation, etc. If I said I had brain damage they might take it as serious as it is, but they do not understand that the spinal cord comes straight from the brain. A tethered cord surgery is as serious and as risky as brain surgery. Not exactly the same as having a laminectomy and a fusion (and I have had that too) from a herniated disk. There is no way to describe the pain to someone who hasn't experienced it. No way...there are no words to describe what it feels like to have your spinal cord cut.

I came out walking after both of my tethered cord surgeries, BUT after each surgery more and more is taken away from me and more pain than a person should have to bear every day of my life. Arachnoiditis is a very real threat to someone whose dura has been ruptured or cut. I came out walking but I will not always be walking even though I have endured four horrid surgeries. I sometimes wish I could go back and learn to accept a chair and live with much less pain.

Think long and hard before you allow that or any epidural steroid shots into your spinal canal which also punctures your dura and can cause arachnoiditis. Every surgery you have creates more scar tissue and more tethering. It's unending.