Tethered cord treatment as an adult? Outcome?

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.

@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

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.

@hbourg
I had my tethered cord released at 49 years old. Over the years some symptoms have become better, especially constipation and some back pain. I also have spinal bifita occulta and my facet joints are overloaded because of the shape of my lower back. I have injections for this. Unfortunately, my left leg (longer) has not really recovered and causes pain at night and I struggle going up stairs. So, it is difficult to know if detethering will be successful and which symptoms may resolve. I hope this helps. I am happy I went for it though as I now have feeling in my pelvis.

@janjack - you may have seen me mention my son was born with a tethered spinal cord (observed then as a sacral dimple) and had surgery at three months. He did get behind on other developmental milestones in the months after, but caught up by age 4 with the help of some school district professionals. He has a scar, but he is now totally fine.

I am happy to see some of your symptoms have gotten better since the surgery.

I'm sorry to hear about the pain you have in your leg as well as difficulty getting upstairs with its longer length. I am offering information on a clinic that addresses leg length discrepancy at Mayo Clinic, in case you want to read about that https://www.mayoclinic.org/departments-centers/limb-lengthening-regeneration-clinic-minnesota/overview/ovc-20472088.

Is leg lengthening (your right leg) something you've looked into?