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.

I can sympathize with you about the pain of the spinal cord cut! I have had 2 fusions and a tethered cord and am in excruciatiing pain on a daily basis. As you said, you can try your best to describe the pain to people but unless they experience it there is no way they can know what you are feeling. I like you have thought several times I wish I had left things alone and endured the alternative than to be in this pain everyday but then I wonder what it may be like had I done that. I suppose that is something we will not know now that we have gone the other route. I am now having to deal with problems in bth my legs and am not sure what that diagnosis is but it does not look good. My EMG did not come back very promising. Hopefully , I will get some answers on the 12th. I wish you the best and that you will fine some relief from the pain

[Hi ellijay,
I do have extreme compassion for your suffering. Nobody should have to endure that much. I know it is living like you have death pain everyday. I have had two spinal fusions, a number of injections. I will not have anymore, as you are right it is never ending, and with each one there is more and more risk. I am terrified of the very thing you must endure. i wish there was some hope to relieve your suffering to where your quality of life is better. If I cannot get enough pain help, I am not sure exactly what I would do. I am not brave like you are, more of a wimp, but I try hard. You are doing the impossibbel. I pray for you, you will never be forgotten by me. I have a prayer list, and I use it. We are all the human family and we need each other very much. I hope you have peace, and less pain today. ginnie

The other route may also have been worse, and we'll never know that either. Beating ourselves up over past decisions/events that we cannot change is common enough, and hard not to do, but serves no purpose. Borrowing from a Japanese proverb, Fix the problem - not the blame. We can only go forward from now, whatever/wherever "now" is.

Doc

Thank you for your good wishes. You never know how much you can handle until you have to. I do live in pain every day. Some days are less pain than others. I know if I have a really bad day, or week, to hang on because it will be a matter of time before I have another decent day. Besides, I have two daughters that keep me hanging on. I want to meet grandchildren before I get off this merry-go-round.

Thanks again for the nice thoughts.

I am 50 and was Dx with TCS by an MRI two weeks ago. I see a Nero surgeon next week so I have been trying to read everything I can. this post seems to have all bad experiences related to untethering Sx. however everything I have read by doctors indicate the only relief from the pain and other symptoms is surgery. Is there anyone on this site that has had a positive outcome from the surgery? I'm feeling very nervous and confused! I want relief from this pain and lack of sleep, I just want my live back I can't stand or walk more than 5 minutes and even then I pay for it with more intense pain and Norco doesn't help in the least. Please let me know if anyone has had a positive outcome (Please!)

Sue,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Click on the following forum, there you will find some dear friends to assistant you with questions.

Spinal Disorders & Back Pain:
http://neurotalk.psychcentral.com/forum22.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

I had two great years after getting over the first surgery. But ask you Dr the chances of retethering and arachnoiditis before you make a decision. AND get a second opinion from a spine center/hospital. Good luck and God bless. Ask the doctor how many her had performed. They are rare and his or her answer may be zero

And as bad as it hurts now, if you get you will miss the pain you use yup have. I didn't think it could get worse. I've stopped saying that. Things can always get worse

I just now saw this. Thank you for the prayers. Life is a daily struggle. I'm not tough. You either handle what life gives you or you get off the merry go round. I want to live to see my grandchildren. I look daily for reasons to keep going. They are there. I just have to keep looking.

So agree! Don't ever look back. It changes nothing and will only make you miserable wondering about"if."