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Tethered cord treatment as an adult? Outcome?

Posted by raztheo @raztheo, Mar 13, 2024

Senior male with spina bifida.

Has anyone dealt with a tethered cord and what was/is the outcome?

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kaylener | @kaylener | 10 hours ago
In reply to @rainyb91566 "Hello everyone, I am hoping to connect with others who may have experience with adult tethered..." + (show)
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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.

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@rainyb91566
They found mine when I was 51. I had gotten worse over time. Could barely walk or use my arms. I had the surgery right away and when I woke up I felt better than I had in 20 years and still do. I'll be 60 this month and I have quality of life. I know it's a scary surgery, but from what I understand it's the only treatment and it will stop the damage that's being done every minute it's tethered. My spine is messed up from top to bottom and I still have lots of symptoms, but I can garden and go for walks and concerts. I was almost in a wheel chair for the rest of my life. If I were you I would see a good neurosurgeon. It will stop the damage, and I hope you are as lucky as I am and you improve. Good Luck

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Lisa Lucier, Moderator | @lisalucier | 2 hours ago
In reply to @kaylener "@rainyb91566 They found mine when I was 51. I had gotten worse over time. Could barely..." + (show)
Profile picture for kaylener @kaylener

@rainyb91566
They found mine when I was 51. I had gotten worse over time. Could barely walk or use my arms. I had the surgery right away and when I woke up I felt better than I had in 20 years and still do. I'll be 60 this month and I have quality of life. I know it's a scary surgery, but from what I understand it's the only treatment and it will stop the damage that's being done every minute it's tethered. My spine is messed up from top to bottom and I still have lots of symptoms, but I can garden and go for walks and concerts. I was almost in a wheel chair for the rest of my life. If I were you I would see a good neurosurgeon. It will stop the damage, and I hope you are as lucky as I am and you improve. Good Luck

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@kaylener - welcome to Mayo Clinic Connect. What a testament to having this surgery as an adult and the possibility for hope and quality of life!

My son, a teenager, had this surgery at age 3 months, and he is fine. He has what we call "an upside down happy face" scar that you can see above his swimsuit somewhat. He also had a large hemangioma marking the tethered spinal cord that the surgeon cut out (we were glad for this, as it was quite ugly and menacing), so I think his scar is a bit bigger than usual.

I did not know one could have such a turnaround as an adult (I realize you said you still have lots of symptoms), probably because with a baby with a tethered spinal cord, they tell you about everything you want to avoid by having the surgery as soon as possible.

I echo finding a good neurosurgeon. The pediatric neurosurgeon who did my son's spinal surgery was so good that family members were commenting on how calm I was as the momma. Guess having a surgeon you feel confident in makes a big difference.

What were your symptoms before surgery, kaylener, and what are they like now?

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