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Adult Tethered Cord Syndrome

TraceyTTracey Posts: 1
I would like to hear from other's who have my same condition.


  • Welcome to spine-health.
    I have a tethered spinal cord in my cervical spine. From my research, most often the tethered cord is in the lumbar spine, and is often discovered at birth or shortly therafter. Mine is a "post-traumatic" tethered cord caused by scarring after a cord injury. I would love to hear your situation. Post more information when you get a chance, and I am sure others will be along to welcome you soon.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Hello. I recently had a L5 laminectomy and detethering of my spinal cord. I have somewhat of a medical background and would like to see if you are interested in my experience. I am an active 28 year-old female who has a history of left knee problems. I have undergone multiple surgeries on my knee with the last being in 2004. I was exceptional and resumed my normal activities, yoga, palates, biking, walking, running and skiing. About three years ago, I was in a car accident where I smashed my knee on the dashboard. It aggravated my underlying chrondomalacia which after a year and multiple opinions was able to be controlled by Orthovisc injections. During this time, I was limping and having excruciating pain in my lower back. I just believed it was because I was limping. When I started to lose all feeling in the outside of my foot and leg and have unbearable sharp pains in the bottom of my foot, my orthopedist sent me for an MRI of my spine. It did not reveal any bulges, herniations or dessication but it did show a low lying conus medularis, consistent with tethered spinal cord. As I went for multiple opinions and additional treatment, I learned that this condition is not highly known/practiced amongst even the most brilliant neurosurgeons. The pain in my foot increased as days went on and I began losing control of my body. I would twitch and spasm all the time but could not find a trigger and eventually was put on seizure medication for the nerve pain. Long story short, I had the surgery which was rough and I am recovering from but I can feel my foot and leg and the only pain I have is from the surgery itself. I feel better today, three weeks post surgery than I have felt in three years. Feel free to ask any questions as I would like to help people in similar situations.
  • Hello, I was born with tethered cord syndrome. They did not find it until I was 32 yrs old. Growing up I remember like running and just falling down because my legs would quit. Or I would wake up paralyzed for days...and no doc would even do a test. Well as I got older the pain got worse..Finallyt tryin to find a doc who would listen was outta the question so I went to a chiro, my last option I told him my story and he was amazed no test was ever done, so he did one and thats how I found out I had Tethered cord syndrome. No doctor in my area would even talk to me about it, one reasont they know nothing about it...but I told them what I thought...not believin me and no running to test I was furious. so I found a doc in another count who specialized in this and they reccommened the surgery to untether the cord. So I did and it only got worse...my back would lock up for no reason and last for weeks...nothin they can do...pain meds....well time went on it got some better then one day I went to get clothes out of the dryer and it locked up completly. I could not move my body. walk sit nothin. I was in a wheelchair for 8 weeks thinkin I would never walk again. Finally it let go enough I can walk but he severe pain has never left, espically in my legs. went to see another neruo and once again nothing they can do...they say the pain is on the inside of my spine, even tho I have a ruptured disc, a tear and a tumor all in L4-5 they wont fix it...they want me to do a pain pump...I dont want to do that until my last option..I live on pain meds daily and guess I will for the rest of my life...I tried to make this story short they are so much more to this condition...I wish you the best of luck...but you are right not many docs even know about this
  • Malibuking70MMalibuking70 Las VegasPosts: 3
    edited 03/24/2016 - 4:51 AM

    Hi, Having a tethered spinal cord for me is a nightmare in 2008 I had a spinal fusion at L4-5 here in Vegas and felt a lot better for 2 years then left for North Carolina and started feeling bad again then soon after that felt as bad and even worse than before the surgery. So I was diagnosed with failed back surgery and arthritis. I moved to Ohio(worst doctors in America BTW) and whenever it rained or too humid I couldn't walk and decided to move back to Las Vegas.

    When I got here My surgeon said I now have a tethered spinal cord and that he didn't want to do any more surgery due to the tethering being behind the metal already in my spine. Now I am starting to lose any control of my bowels,  when it rains I have trouble walking and it feels like a shark is trying to pull my right leg off constantly. I'm 45 now I've been disabled for 11 years I get treated horribly by pharmacists and their staffs, I was treated horribly in Ohio by everyone I saw. I just thank God I am still here and at least have knowledgeable caring doctors and I can walk(with difficulty but still able to).

    I wouldn't wish this pain on anyone.... It feels like I'm a bug in a collection with a pin stuck through my spine.

  • SavageSavage United StatesPosts: 5,427
    Hello Malibuking70!
    Welcome to Spine-Health
    Please click on link for helpful information!

    You have found this discussion from 2011.
    May I suggest you start your own discussion re your above concerns.
    More members will see your comment and be able to themselves comment as they relate with shared experiences.
    Thank you!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • My daughter aged 9 months has got lipoma at lumbosacral region with low lying spinal cord. Will anyone please suggest, whether surgery is helpful. Can she spend normally rest of her life if surgery is done?
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