I am a senior male with spina bifida. I have managed to dodge most of

Posted by raztheo @raztheo, Mar 13 3:38pm

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

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I have a good friend with a tethered cord who is very incapacitated from that and other issues.

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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.

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@hbourg

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.

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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.

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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!

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