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Jun 26, 2016 3:48 PM

I was just wondering who else has been diagnosed with "Arachnoiditis"? I was told it was difficult to get diagnosed so I am grateful my doctor was so eager to get some answers to the constant pain. I went through some very specific testing to get the diagnosis. A specialist was in town from California the day I met with my doctor and the specialist just happen to hear a little about me so he asked if I would give consent for him to look over my chart. He was only in town the 1 day so he ordered the testing but actually was back in California when he made the diagnosis. I was so glad as I just couldn't and still cannot imagine anymore back surgeries (have had 4) or injections of any kind (too many to count). There really isn't a lot of information out there on it. I know it cannot be "fixed" or "cured" so any feedback is greatly appreciated.


Jun 26, 2016 4:34 PM

Welcome Luvmylabmolly! I didn't know what this was so I googled it. I'm sorry you have to deal with it. I have paresthesias & neuropathies, especially in my hands & feet, due to my spine. It's no fun for sure! I'm so glad the doctor who was visiting the area was able to help you. I know finding out had to give you some relief. I wear compression stockings and use crafters gloves which work the same way. I even wear CTS splints that helps occasionally. I wish I had some suggestions for you. Hugs & prayers you'll find ways to cope better! 🙂💕🙏🌼

Jun 26, 2016 5:03 PM

I laid flat on my stomach for 2 years while waiting for relief. When I would sit or stand up I would get a "pinching" sensation that was so unbearable I couldn't even go to restroom. I had a commode next to my bed and would cry in horrible pain just to get up to use it. That's when I was home. A good part of those couple years I was in hospital on a wide open mophine pump. It's been a rough few years and I walk pretty funny......but I walk! 👣

Jun 26, 2016 7:19 PM

Thank you for sharing your experience to help us understand. You must be a very strong person to go through that. I have spine issues that cause sciatica our sometimes feel like something is pinched. But it rarely last more than 1-2 date at a time before I move and it readjusts to stop hurting (spine). Big (((hugs)))! 🙂💕🙏🌼

Jan 03, 2017 6:46 PM

I've had cauda equina syndrome since 1992 and developed lumbosacral adhesive arachnoiditis over the last 10 years. I'm mostly bedbound from the severity of the pain, but swim 3, 4 times a week and do PT and yoga stretches. The neuropathic pain is excruciating with inability to sit, stand or walk for any length of time. Of course the cauda equina syndrome had already affected bladder, bowel and sexuality but the arachnoiditis really worsened everything. My lower leg and foot muscles were already affected from CES and have worsened. I also lost 2.5 inches of spine height when I had the skydiving accident. On top of that it turns out I developed T4 central pain syndrome from a vascular injury, two decades after the original spinal cord injury. I rely on pregabalin (neurontin worked too), baclofen and low dose opioids for the sacral pain. Turns out, you do need a working parachute when you go skydiving!

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