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Adult Tethered Cord Syndrome Surgery

KadlunaKKadluna Posts: 1
edited 06/11/2012 - 8:48 AM in Back Surgery and Neck Surgery
I am a 39 y.o. woman diagnosed with adult onset tethered cord syndrome, with a recommendation from a neurosurgeon for a laminectomy. I would be grateful for any information from others who also have adult onset TCS. Have you had surgery for it? How severe were your symptoms before the surgery and how effective was the surgery in alleviating them? How difficult was the recovery?

Many thanks!
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1

Comments

  • I'm new to this forum, but your post caught my eye. I am a 56 year old woman who also has a tethered cord. Mine was diagnosed in 2003. It presented as pain in the tail bone, kind of like broken tail bone pain the pain throughout the low back.When it started to affect my bladder a little, they did surgery. However, the first year, they thought the problem was from a small tumor inside the spinal cord. That tumor was benign and it also had it's roots congenitally, just grew over time. The next year as symptoms returned, they went into the cord again, this time to 'untether' the cord. This process both times required three to four lamenectomies.My pain was relived for a few years, and the recovery was about four days in the hospital, and four to six weeks for healing. I could be wrong on some of the recovery, as it was awhile ago. I don't know of many people like us with this. You're the first I've ever communicated with that has it. Best to you, let me know how it goes - and what symptoms do you have?
  • I've found so few others with this condition. Would like to connect with others that have it. My spinal cord stimulator seems to give a good amount of relief from the constant tail bone and low back pain. The thing is, even when they go into the cord and untether it, it will retether, just a matter of if it will be with a lot of symptoms - at least that's what I was told. Anyone have any other info?
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  • MY story maybe a little different. I was born with a tethered cord, it started affecting me when I was about 11 yrs old, started playing sports, I would loose the use of my legs,s sometimes go paraylzed for days but no doc would even run a test. Trying to make a long story short, because I had alot of symptoms. When I was 32 the pain in my lower back was really bad, no doc would help me so I went to a chiro told him my problem then he did a mri and found the problem. I had to go see a special neuro who dealt with childhood birth defects, so I had the surgery to untether my cord. It really didnt help. My back locks up on my alot, last time I was in a wheelchair for 8 weeks could not move from wasit down at all. The mri shows the tumor still there I dont know why they didnt remove it at the time of surgery. I still have chronic pain and the doc said when he cut the cord it would damage my nerves in my back and it did. I go to a pain clinic now to help control the pain, but I really think I need another opinion. LIke I said there were alot of symptons that I didnt mention here. They tell me Im gonna have to deal with the pain there is nothing they can do for me.
    Brenda
  • Hello, Like most I am looking for people to talk to about tethered cord syndrome and possible surgery. I am 43 and was not diagnosed until last year after I was in a serious car accident. My symptoms are pain in my lower back that radiates down my right leg, numbness down the back of my right leg thru to my toes, loss of sensation all over my right leg, loss of all reflexes in my right foot and mild loss of strength in my right ham string. My neurosurgeon wants me to research and be aware of everything that can happen during surgery before I commit to it. Everything that I have read says that it is best to have the surgery done as soon as possible. If anyone has had an untethering of their spinal cord I would love to chat with you.

    Thank you very much,
    Janelle
  • Hello Janelle ~ I was diagnosed with a Tethered Cord in 2006 after a car accident. I have lived with the severity of the pain in the coccyx bone area for years, and down the legs, in between the legs. I have neuropathy type symptoms in my calves and heels. Initially I was losing control of my bladder, then came the bowels. Today I am experiencing severe pain, burning in the rectum and vagina area, all in between the legs. It has become very difficult for me to sit. I experience numbness in the groin area. I have been told by one physician I may have pudental nerve entrapment as a result of the tethered cord. I will be having the tethered cord surgery, I just have not spoken to or met anyone who has had a tethered cord surgery, a successful one at that. Have you had your surgery?
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  • I have what is known as a post-traumatic tethered cord, and it is in my c-spine. I have not yet had the surgery because at the moment, my symptoms are holding about the same. I am told that it is progressive. I'm just thankful to have an answer as to why my legs die for periods of time and why I continue to struggle.

    Apparently, mine is caused by scarring that happened with the initial injury to my cord. The syrinx inside the cord remains the same size. The way it was explained to me is that the scarring on the exterior of the cord has attached itself to the dura, thus "tethering" or tieing the cord down, which limits movement.

    I too am interested in hearing from anyone whom has had this surgery. There is a doctor in Denver who will do the surgery, but he will place a skin graft over where he removes the scar tissue, so that it does not grow back. I don't know if he does congenital tethered cords, or if it is only post-traumatic tethered cords. You can google that phrase and find him. The surgery is very involved, would require 10 days flat on your back and then weeks after that recovering before going home, at least that is what I am told. Just sounds a bit too dangerous for me to go for it, unless I get worse. [shudder]
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I am 56 years old and am having the operation on June 6th. I never heard of anyone else who has this problem till i was sitting in the Neurosurgeon's office. I could not take it any more when my bladder was getting worst.
    After seeing many doctor's they finally said I had a neurological bladder. Thankfully my Doctor sent me for a MRI and at once they saw my problem. Now the leg & back pain, Bladder problem and now bowl problems make sense to everyone.
    When no one would listen when I told them all these years something was not right.
    I hope you are all going to good doctors I am lucky I live near New York City so finding the right Neurosurgeon was a little easier. When I first met him I could not believe it here was someone who new all of my problems with out me having to explain. Good luck to all of us I will let you know how the surgery goes.
  • trabbenouttrabbenou Posts: 2
    edited 08/11/2015 - 6:52 AM
    well i had the surgery june 2012 and it grew back and had to have the surgery again june 2013. now i am checking on line about this again because of pain once again. i never got my bladder back now i think i am losing fuction with my bowls they have not been right for a long while but getting worse. is there anyone out there who can tell me what is happening to them and what i should expect.
    about have the surgery question i can walk now with out pain, but my left leg is numb from the calf down to the toes i don't think i would have been able to sit or walk with out the surgery.
    please help with information the doctors do not really have any ideal.

    welcome to spine-health
    please click on link for helpful information! ~moderator savage
  • tcain2040ttcain2040 Posts: 1
    edited 08/11/2015 - 6:51 AM
    hi i was diagnosed with spinal bifida and a tethered cord as child, i had surgery when i was 14 and i still have problems, as you can imagine the problems range from case to case. the signals that my brain send through to other parts of my body are scattered i know this because of my motor nuron skills are poor i have tingling in my toes and fingers sore neck and have week leg muscles the surgery helped thou, however i still have a week bladder. and sometimes i come down with head aches, i would say to any one out there that is going to have the surgery or had the surgery the key is pilates or yoga workout your lumbar muscles and do cardio exercises and core workouts to strengthen the core and lower nack if possible. visit a chiropractor but make sure they do an x ray or mri. and keep well massaged your body may stary to have degeneration as you begin to age weakening everything especially the nervous system you have to stay ahead in the exercise while you still have a chance otherwise theres no comjng back unfortunately as youll be too weak to exercise at all. im now 27 still have a rough time daily with sitting in one spot to long or even standing, i fknd wearing comfy shoes with high arches around the soul of my foot help with posture problems. try stretching as much as possible. i look forward to hearing feed back

    welcome to spine-health
    please click on link for helpful information! ~moderator savage
    Cain
  • SheharizaadeSSheharizaade Posts: 1
    edited 08/11/2015 - 6:50 AM
    i had surgery in 2010 now confirmed with a new tether, symptoms worse than first time round. bowels, bladder numbness and weakness mainly in left leg, pain in low back and spasms. my symptoms fluctuate, so sometimes i feel a fraud and other times i can only walk with crutches and extreme pain.
    it krept up on me this time as i am now much more pro-active in managing my symptoms. scared about op as tether is transverse and complex with my nerve roots. have only concluded in the last couple of weeks that the surgery is necessay as symptoms have deteriorated rapidly. anyone else on this path too?

    welcome to spine-health
    please click on link for helpful information! ~moderator savage
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