Thank you so much for your response. I have now started a list of questions to take with me to the doctor! I'm still scared but feel a little more in-powered not going in blind. So glad I found this site with good people willing to share with and support others! God is good!

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

Welcome myrose4me.

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.

It's not normal for me to post but I'm feeling desperate. I had detethering surgery a year and a half ago and right after surgery had an **** fissure (OMG awful). Extreme intense pain. My fissure has totally healed. I've been to tons of colon and rectal doctors. There's nothing wrong in that area. I'm wondering now if it's tailbone pain. Nerve pain coming from my tailbone area? Is this due to the de tethering? Does the pain after usually happen for folks? It feels like INTENSE muscle spasms in my tailbone area. Can't bend over etc. It's not everyday. But when it happens it takes me down. Muscle relaxers don't work. Nothing really works. Please help. Or any ideas for tethered cord specialists? I have a wonderful neuro surgeon but I don't think this was his speciality.

Ask your doctor for a MRI. See if you have arachnoiditis.