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Tethered cord treatment as an adult? Outcome?
Senior male with spina bifida.
Has anyone dealt with a tethered cord and what was/is the outcome?
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Senior male with spina bifida.
Has anyone dealt with a tethered cord and what was/is the outcome?
Interested in more discussions like this? Go to the Spine Health Support Group.
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I have a good friend with a tethered cord who is very incapacitated from that and other issues.
I am 75 years old and was diagnosed with a tethered cord and a spinal lipoma tumor in 2021. I knew that I had a mild spina bifida as an infant but never gave it much thought as I have led a normal life.
I saw 2 neurosurgeons about the condition after having problems with leg pain, balance, and walking. Neither would operate, saying the surgery could make things worse, but the second installed a spinal cord stimulator (scs).
I haven't ever had any help from the scs for the leg problems but maybe a little help for back pain. I think the reps and doctors are throwing darts when they make adjustments of the scs.
My hope is that things don't get worse. If they do, I'll try another neurosurgeon.
I hope you can find a doctor specializing in tethered cord. Search to see if you can find one. We're fortunate to have an excellent one here in this smallish community (100,000 population); she's here because she wants to live here, and the patients come to her. Good luck.
A good friend who has a tethered cord recommends that you look into the Facebook for tethered cord. She said
you'd find a lot of good information there. Good luck!
Hello everyone,
I am hoping to connect with others who may have experience with adult tethered cord, dural ectasia, or nerve root adhesion.
My recent MRI showed pronounced dural ectasia, and the end of my spinal cord (the conus) is tethered to the back of the thecal sac at L1–L2. Several cauda equina nerve roots also appear adherent. This has progressed compared with my prior MRI, and I have bilateral leg and foot numbness, pulling sensations, and occasional balance issues. I also have ankylosing spondylitis with some spinal fusion, which may be contributing.
I met with a neurosurgeon at a major Boston hospital who felt that surgery was not the right option for me at this time. However, a neurology associate at Brigham and Women’s reviewed my imaging and strongly recommended that I speak with a few neurosurgeons who specialize in these types of intradural and CSF related spine conditions. I am trying to gather as much information as I can before moving forward.
I would really appreciate hearing from anyone who has:
• A similar combination of tethered cord and dural ectasia in adulthood
• Chosen to undergo detethering surgery and what the outcome was
• Decided not to have surgery and how things have progressed over time
• Had symptoms stabilize with conservative management
• Been evaluated at a center specializing in CSF or complex spinal cord disorders
I am trying to understand what others have experienced so I can make the best decisions moving forward. Thank you so much for any insight or guidance you are willing to share.
I do not have this condition but am retired from healthcare field. You definitely need to see a surgeon who specializes or at least routinely sees your type of case. One thing you could do is go to Google scholar and search tethered cord. See which surgeons are publishing; you might find some in your area, especially since ur in Boston.
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1 Reaction@rainyb91566 - wow. I'm familiar with this condition personally because our son was born with a tethered spinal cord. I can't imagine having it into adulthood. I'm really sorry to hear about your bilateral leg and foot numbness, pulling sensations, and occasional balance issues.
In our son's case, after genetic testing, they determined his tethered cord was random. But he had surgery to repair it at 3 months. The pediatric neurosurgeon said he'd not have any aftereffects.
Long-term, he has had none, and we are so grateful for no foot drop, incontinence or other outcomes of this condition. However, in the short-term, he started missing all his developmental milestones, such as standing, key grip with cereal pieces, allowing his teeth to be brushed, and word development. The school district professionals who helped him basically felt his little body put all its energy into surgical recovery, taking away energy for these other things. So, he needed extra PT and OT for at least a year, then speech therapy.
He's great now, though, and in college.
How are you doing? What have you decided to do? Are you pursuing surgery?
If you are seeking a second opinion, and are in the Boston area you may want to check out Brown Health in Providence RI where Dr. Petra Klinge practices. Dr. Klinge is a Neurosurgeon and internationally recognized specialist in Tethered Cord Syndrome.
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1 ReactionHi, @raztheo - thinking of you just now and wondering how things are going for you. You'll note I moved two of these conversations about adult tethered cord together to bring grown members who have this similar situation together to chat and exchange ideas.
You will also note in my previous comment to @rainyb91566 that I have a personal connection to tethered spinal cord through my son, who is now 19, who had surgery for tethered cord at age 3 months https://connect.mayoclinic.org/comment/1534306/.
What symptoms are you dealing with at this time from your condition?
Have you decided to go forward with any devices or surgery?