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Adhesive Arachnoiditis & the Effects on Walking
Chronic Pain | Last Active: 1 hour ago | Replies (39)Comment receiving replies
I too, have severe adhesive arachnoiditis. I am also fused from C3 thru my sacrum. I am now having severe, unrelenting pain. I am a retired RN. I live in a suburb of Phoenix. I have tried for years to get a doctor to help , with no success. It takes about 5 or more months to even get an appointment with a specialist. Got a neurologist, met with him. He basically said there are no treatments, except steroids. He's given me Medrol dose pacs & valium. When the pain became overwhelming, he said i need pain management. Have been going to pain management for years ( it's a joke, a mill) I am now looking into getting a pain pump. I have all Dr Tennant's protocols & no one is interested in even looking at them. Think i am past this anyways, as i can't do most of what he suggests. It's beyond discouraging & no one even knows, or is familiar with this condition & they don't understand the severity of the pain. I am very depressed & feel hopeless. I can barely leave my apartment & have no more life. Sorry to be so discouraging. Would love to have someone to talk to. Lauren Seavertson
Replies to "I too, have severe adhesive arachnoiditis. I am also fused from C3 thru my sacrum. I..."
Hi Lauren-Archie here… I just want you to know that you are heard— I hear you, your hopes and your desperate moments… many of us have been there. As an RN, you should be pretty good at being your best advocate. My experience is that doctors are not indifferent or arbitrary, they’re just busy. Your challenge is to get attention. There doesn’t seem to be any doubt that you are suffering, how can you be ignored. You speak the language— interspaces, foremen, pedicle, clumping, intrathecal space, dermatomes and so on. Use your expertise! I’m in your corner! Go for it.
Articulate what you want
Outline a plan to get there
Logically organize your team
List the outcomes you want
Get technology and treatment that will achieve your goals.
Good luck- Archie
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My heart goes out to you - such a painful condition. I had an ACDF C4-C7 in October ‘22. Surgery was successful but I deal with other issues resulting in pain. Has anyone suggested Low Dose Naltrexone? I’m working with a Rheumatologist that has prescribed it for severe osteoarthritis. It has really helped reduce the inflammation and pain.