Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

advertisement

Quick Start Forum Video Tutorial

    Forum-Tutorial-Screenshot
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

Notice
All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

The main site has all the formal medical articles and videos for you to research on.
advertisement

Adult Tethered Cord Syndrome

I'm 49 and have been diagnosed with Tethered Cord Syndrome. Not many doctors are familiar with this condition.
I was originally diagnosed with Sacoilliac Joint Syndrome (as the symptoms were similiar) until I had an MRI in which the radiologist flagged for "tethered cord" to follow up with urodynamic test for confirmation.

When they see thickening filum terminale in your MRI, this is a sign. Included, low back pain, pain in both legs, and tailbone pain.

I've tried NSAID's, injections, physical therapy, swim therapy, nerve pills and nothing helps. Going to the neurosurgeon tomorrow to discuss surgery as I've had chronic pain for 8 months and I feel I can't bare much more.

Anybody here have the same condition? Had surgery?



UPDATE - SEPTEMBER 2014

I had surgery....recovered 100% with the exception of continued frequent urination. Pain was completely gone after 2-3 months. However, symptoms are now returning. Pain scale 5 of 1-10. MRI came back with Low Lying Conus at MID L3 and thickened filum terminale. Going back for Uradynamic testing next week to confirm retethering.

HAS ANYONE HAD RETETHERING AND IF SO, HOW SOON DID IT HAPPEN AND DO YOU KNOW WHY IT RETETHERS?

advertisement
1

Comments

  • I have it, and apparently had it since it was mentioned on my first MRI report post op, but have not had surgery for that particular condition as of this point.
    The thickened filum terminale is the sign of it, at least from what I was told, along with the positioning of the conus.
    The one thing about having surgery if I recall from my research into it some years ago, was that there is a chance that it can retether at a later point , and it may or may not improve the symptoms you are experiencing, so those are things that I would discuss with the surgeon prior to going ahead with the surgery.
  • Discovered tethered cord 20 years ago. Recently now affecting bladder and bowel, as I read on earlier posts here. No pain, however. Determining whether to live next 30 years doing nothing, or if surgery would keep present symptoms from deteriorating. Any input would be very helpful. Neurologist want me to go to Duke Hosp in NC for evaluation. I understand they are surgically aggressive, tho.
  • advertisement
  • Is one of the top hospitals in the country when it comes to treating spine conditions, so it would be wise to visit there for at least a consult to discuss the options and suggestions they have for you.
  • SarahLindeauSarahLindeau Posts: 766
    edited 03/02/2014 - 8:42 AM
    Tethered cord is essentially a mild form of spina bifida. A family member had it and as a result, she walked on her toes and had trouble with sensing the need to urinate. In her case, she had the untethering and has done well. She'll be followed yearly for MRI scans as it can re-tether
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • Thank you. I had no symptoms until my left leg started to atrophy when I was 50.(STRESS kicked it in!!!) A year of physical therapy went very well, although muscle mass never returned. Bladder issues started after 15 years. Now minor bowel issues 5 years later. All in all condition known for 20 years.Will be 70 this year. Thankfully, never any pain. Will report what Duke Medical says. (Pediatric dept there refused to see me due to age, so not sure who I'll be seeing.) Just not sure any surgical treatment is necessary.I would like to know if anyone was able to control the bladder/bowel issues successfully without surgery.Anyone?
  • advertisement
  • SarahLindeauSarahLindeau Posts: 766
    edited 03/06/2014 - 3:54 PM
    The nerves are the problem with the bladder and bowel and unless they are freed up again in a timely manner, I don't think there is any way to regain that function. If you've lost it years ago, I doubt surgery will cure it. But see what the neuro says.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • My grandbaby who is 4 was just diagnosed last week with tethered cord. He was born with a cleft at very bottom of spine and pediatrician said it appeared to be a case of spina bifida that closed before he was born but tethered the cord when closing. Both his mom and I are or were nurses and noticed in last 6 months or so that he was walking on his tip toes and his toes were curling and pulling to the side. We googled curled toes and TSC was first thing to pop up and pictures all showed the cleft or dimple on lower back. Pediatrician sent him to a neurologist who ordered MRI and now we are waiting on appt with specialist in Charlotte NC because no local doctors who have experience with TCS in children. We were told it is a rare congenital defect and that it could possibly retether later as he grows. I have had 4 spine surgeries and would gladly have a 100 more if it would keep my grandbaby from having to have spine surgery....scares me witless :( :( :(

    kelli
  • Kelli, you do need to find a pediatric neurosurgeon who has familiarity with TCS in children. Once you do that, there will be a large number of tests, ultrasounds and MRI procedures to map out exactly what your grandson's situation is. If you find the right neuro, I am confident that you will be in good hands. My niece underwent TCS untethering and is now doing well. Do your homework and get referrals if you need to. TCS is something that really needs to be fixed sooner than later as there can be permanent bladder damage if untreated
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • In 1995 was in a car accident, mri showed thetered cord. Dr. said is was thethed high, with lipoma. he said it would not cause problems. Now 66, pain is unbearable, especially if sitting. Take soma and some times hydrocodone (infrequently). See neurosurgeon soon. Pain in sacral region and hips.
    Walk for exercise and sometimes elliptical.
    bladder and Bowell problems, (minor and may be due to prostrate. What to expect with surgery? any exercise to help? Will I end up in wheelchair? Life is getting unbearable. Someone please talk to me.
  • In 1995 was in a car accident, mri showed thetered cord. Dr. said is was thethed high, with lipoma. he said it would not cause problems. Now 66, pain is unbearable, especially if sitting. Take soma and some times hydrocodone (infrequently). See neurosurgeon soon. Pain in sacral region and hips.
    Walk for exercise and sometimes elliptical.
    bladder and Bowell problems, (minor and may be due to prostrate. What to expect with surgery? any exercise to help? Will I end up in wheelchair? Life is getting unbearable. Someone please talk to me.
advertisement
Sign In or Register to comment.