Hi my name is Debora I am 42 and I have had the detethering procedure along with a lipo tumor between the L2-L5. I found out in Oct 08 what I had and in Dec08 I had surgery. The cord was cut and about 90% of the tumor was removed. I have never in my life experienced the utter awe and distress utter pain this condition has put upon me.

There is so much to say, Today, July 27 2010 I went to the Dr and am going to go thru yet another MRI. Just to break it down after the surgery was the worst pain I have ever experienced and it took me 2 months just to get walking again.Over the summer I had days where I could manage my pain and be productive. But....in the past 6 months the incontinence has returned, my feet are blue, legs are numb with shooting pains my lower back and hips have a deep pain and like they are on fire. sitting, walking short distance and even laying down back or side is just painful.

I am having weakness in my legs, my right leg will just drop if I apply full pressure on it in standing. Walking up stairs produces a fire burning in my legs and going down the stairs my legs are weak and wobbly. I have foot cramps like crazy at night and wake up with my legs just numb. I have not been able to drive since my surgery and just walking short distances will end in having to lie down for a few hours.

I used to be active in gardening and home projects goin to the lake, movies now my days consist of sitting or laying on the couch or in bed watching t.v. Now dont get me wrong about 6-7 months ago I could handle trips to the store, yes I was hurting but could lay down for less time and be able to keep going. I have always had symptoms from my early 20's. But I always brushed them off as I always thought I was out of shape or was always over doing everything. So here I am again going to get the MRI.

I take 10mg percocets on daily basis and most times all it does is just take the edge off of the fire in my back and legs. I have tried everything from Nuerontin to Lyrica, to Methadone and few others. I am leery about pain meds never took more than a tylenol or advil before surgery and if they would have told me I would be taking Percocet after surgery I probably would have told the no to that too.

I am not keen on meds and if it has a side effect 9 times out of 10 I am going to experience it. I dont know what the results are going to be of this scan but the way things are headed south at the moment I dont expect to be happy about it. I would so like to meet people who are going thru the same experiences as I am. I am just sick of people who either are too stupid to understand or just not care to understand what a day in my shoes is actually like, of course they never will unless they also have it but still people are just non concerning. I have had family members tell me you are ok they removed the tumor cut the cord, you just take pain pills because you like them or addicted. The one that gets me is 2 weeks after my surgery I was told I needed to start walking the neighborhood. O ya a good brisk walk is just what I need! nerve pain people! So hopefully this could get out there and someone who is in my shoes and needs someone to talk with, you can contact me {via my profile }

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

Hi, I understand everything that you are feeling. I am 39 years old and I had surgery in March of this year and I have not found much relief from any medicine or therapy. I have pretty much the same symptoms as you do,weakness in the legs, burning, muscle cramps, deep pain in the hips, low back ache and my tail bone hurts. I have seen 2 different neurosurgeons since my surgery and they both say that it could take up to 2 years to see any results if any at all. It's going to be hard to wait that time out for results.
After my second MRI I was told about a cyst that stretches from S2 to L5 and both surgeons say that this does not have anything to do with my problems. The nerves are just being over active now. I am up to 2700 mg of neurotin which maybe helping to an extent. I take pain killers but they do not always work. They definately do not work for the burning or cramping. I did have a nerve block at the L5 area for the constant pain down my left leg, which did help the majority of that pain, but I will still get a shooting pain instead of the constant throb. Its really hard to keep up on a daily basis.
If you have any updated reports it would be nice to hear them.

Nobody NOBODY can understand the pain associated with having your actual spinal CORD cut on. I have had a herniation and a fusion and that was a walk in the park compared to the tethered cord surgery. For at least a week you beg to die, and then it takes two months to walk semi-normal with a cane, and another six months to be able to lift a gallon of milk. I do hope you are feeling better. I have had the tethered cord surgery twice and it is tethered again and this time it is inoperable. I also have arachnoiditis now...and that sounds like that is likely your problem too with the continued pain.

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.

i I FEEL YOUR PAIN. I HERNIATED A DISK 3 YEARS SHOVELING SNOW. THREE DAYS LATER I WENT NUMB FROM THE WAIST DOWN. I ENDED UP IN THE HOSPITAL FOR A FEW DAYS. WHEN I CAME HOME WITH THE ASSISTANCE OF A WALKER AND MY HUSBAND, I WAS ABLE TO GET AROUND A LITTLE. I SLEPT ON THE COUCH FOR 3 MONTHS LIVING ON GABAPENTIN AND TRAMADOL. THIS OF COURSE HAS TAKEN AWAY ALL RELATIONS WITH MY HUSBAND. WE RARELY EVEN SLEEP TOGETHER. I WASN'T DIAGNOSED WITH A TETHERED SPINE FOR A YEAR. MY LEGS ARE EXTREMELY SENSITIVE, AS ARE MY FEET. THEY BECOME VERY COLD AND TINGLE. I AM STILL NUMB FROM THE WAIST DOWN ALTHO ABLE TO WALK UNTIL I CAN'T TAKE THE BACK AND LEGS ACHING SO BAD. I HAVE TO REST MY LEGS AND I'M TIRED MOST OF THE TIME. I HAD A SMALL LOOKING TYPE RASH ON MY LOWER LEFT SIDE OF MY BACK AFTER THIS HAPPENED, BUT NOW IT IS HUGE WITH BIG PURPLE BLOTCHES. WHEN I WAS FIRST SEEN BY THE MD THAT DIAGNOSED ME, HE SAID THIS WAS A CLASSIC SIGN OF A TETHERED SPINE. DO YOU HAVE ANY MARKING ON YOUR BACK? MY GENERAL MD ASVISED NOT TO HAVE SURGEY AS HE HAS A PATIENT THAT DID HAVE THE SURGERY AND IS NOW A FULL PARAPALEGIC AND IN A NURSING HOME. I GET SO TIRED OF HEARING :I KNOW HOW YOU FEEL" WHEN UNLESS YOU HAVE THE CONDITION, THEY HAVE NO IDEA. I HOPE TO SEE A RESPONSE AND WISH YOU THE BEST DEBRA,,SINCERELY, KATE

I will look up the procedure that you had. I hear your pain. You will find some support here, and those who have experienced some terrible pain in their lifes as well. I have had a couple of spinal fusions, and was lucky to get relief with the second surgery. Please keep seeking help. I am glad you are getting another MRI. No matter what the results are, someone here will help you to understand them. As far as the pain goes, there are other solutions, and you probably need an expert in pain control. Not all medications make you loopy or cause side effects. I am not over hep on narcotics either, but it does make my quality of life better in regards to pain I have. I have other conditons that warrent their usage. Please keep trying to get some better help with the pain your experiencing. Folks on the site have had everything from a pain pump, to SCS inplants, injections etc. There is help, and sometimes it is difficult to find the compassion and help you need to deal with the pain. This can be helped in some way if you seek the physicians who are most able to address your needs. Ask your neuro surgeon, and seek more opinions. Get the relief you need, to have a better quality of life. That is what I shoot for. Noone wants to live their lives flat on their backs and in that kind of agony. Please seek more help, it is out there, and there will be someone who can help you. Keep asking on this site too. Let folks know where you live, and they may be able to provide you with names of good physicians on your PM in your area. I will keep you in my thoughts and prayers. I do wish you all the best. I hope you find a way to have less pain. ginnie