Oh boy do I know what you're talking about. This nerve pain is awful, as well as the DEEP bone type pain ~ the pain that seems to go straight to your soul!!! Yes, I know what you mean. it's the kind of pain that is hard to describe.

I'm so sorry you're suffering so. One nerve medication that has helped me some is TOPAMAX. It has helped with the burning, hot-poker, water-running type pain. It's really been great. Now if it could help with the horrible PAIN, that would be wonderful!!! I was just thinking that perhaps Topamax could help you. I haven't had any side effects from it, but some people might.

Like you, I can't walk much of a distance. Sitting is a new experience in pain. Laying down isn't much better because I have "sore spots" on the back that when I lay down, it just aggravates things. Maybe I should just hang from the ceiling??? lol.

I'm going on Friday (tomorrow) for yet another MRI, as I'm almost sure I've herniated another disc. I now have sciatica in both lets instead of the right one that i've had it in for the last 24 years. Don't really know why he's doing the MRI cause I can't have more surgery ~ doc's say i'm inoperable.

So between the two of us Kalikage, we couldn't even make ONE GOOD SPINE. LOL. God bless and take care. Hugs, Lee

Wow!!! I am reading this thread and just amazed at how much we have in common. I am 47yr old and had a tethered cord release surgery in January of last yr. It was not my first surgery. In 08 I had 2 fusions L5-S1, I have never been free of pain since. It has only gotten worse. i really thought and prayed that with the last one I could get my life back...NOT! My quality of life is horrible. There is so much I use to do that I would love to do now. I go have another MRI on the 23rd and another EMG on the 1st of May to make sure they havent overlooked something. He is thinking the tether is back, but since I got no relief from surgery no need/sense in putting me thru that again. So, what does a person do? I feel like I have been given a life sentence to Pain! I wish you the best and pray you can get some relief. Please keep me updated.

I had another MRI last month and my spinal cord is tethered again along with an enlarging meningeocele and possible synovial cyst. At this point it is inoperable as I also have adhesive arachnoiditis. Fun fun. So I just live on meds and do the best I can. Good luck to all!

My MRI is scheduled for Monday and even though I have had several of them for some reason this one is the most dreaded. I am not sure if it is because the DR thinking that the spinal cord has tethered again or the unknown. I have pretty much decided that I DO NOT want to be cut on again so regardless of the results my mind is pretty much made up on that part. Just sort of stressed, confused. Prayers needed!

There is truly no reason to have surgery for a tethered cord. I have had it twice and it keeps tethering again and the more surgery you have the more likely you are to get arachnoiditis or tarlov cysts. It's not worth it to have it untethered.

I wish you luck and prayers for you. I am in the same position. Taking everything one day at a time and enjoy every moment I can because I can't take it all in at one time if I do it's entirely too much for me to handle mentally/emotionally.