I'm sorry, but I disagree. I have had the surgery twice and both times it retethered and I now have arachnoiditis which is hell on Earth compared to the pain of a tethered cord, which I THOUGHT was hell on Earth. Reading some descriptions of people who have had the surgery it sounds like they too have arachnoiditis but doctors refuse to admit they have it because to do that it would be to admit they made a mistake in surgery.
The truth is that it is a toss up. If you have surgery you take a huge risk, if you don't have surgery you take a prolonged risk. I have had a tethered cord for years now. I am inoperable and if I could go back I would not have had the second surgery. One is all anyone should try.
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Originally Posted by myrose4me
Hi Sue.
I am also 50 years old. Last April I was diagnosed with Tethered Cord Syndrome and had surgery in October.
I tried everything prior to surgery to help manage the pain and nothing helped. Thank GOD I found the best Neurosurgeon for surgery. Granted, not having surgery is NOT an option.
Prior to surgery I was not incontenence, however frequent urination. Mostly at night. Pain was Chronic and I could not walk longer than 5 minutes. Every body part below my L5 hurt....burning in buttocks and outer hips, tailbone pain, low back pain, pins and needles in my legs were the most dibilatating. I tried 3 different nerve meds and prescribed NSAID's and no relief.
After surgery I was in the hospital for 4 days. 2 weeks before I could drive. Pain and weakness slowly subsided in about a month. I had complete recovery in about 2-3 months with NO PAIN. Bladder function is still frequent.
Unfortunately, I now have mild scoliosis with possible retether. All the symptoms are coming back and MRI showing low lying spinal cord in mid L3 and thickened filum terminale. Going back for another Urodynamic text next week to confirm
Please do share your journey......
Lorraine
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