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Looking for anyone with adhesive arachnoiditis and treatment options
MRI showed Adhesive Arachnoiditis at my L4L5 . Been having low back into thigh pain for some years after being diagnosed with Ankylosing Spondylitis many years back, so have had back injections thru the years. Seen Neurosurgeon who said I was in mild stages and recommended therapy and electric stimulator implant as treatment options. My question is this the only options or is there something more out there for treatment or I should be doing?
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@bolake Welcome to Connect. You might find some information in these discussions.
Spine Health - "Any Adhesive Arachnoiditis members here?"
https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
Spine Health - "Anyone been diagnosed with arachnoiditis after spine surgery?"
https://connect.mayoclinic.org/discussion/arachnoiditis-2/
Thank you, will check them out
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1 ReactionLooking for Rx and natural remedies or treatments for adhesive arachnoiditis
@karencornett , welcome. I moved your question about treatment options for adhesive arachnoiditis to this existing discussion in the Spine Health support group where you can meet other members like @bolake @sophie46 @gsr4863 @archie2 @cgreenle @laurenseavertson and others.
- Looking for anyone with adhesive arachnoiditis and treatment options https://connect.mayoclinic.org/discussion/looking-for-more-information-for-adhesive-arachnoiditis-treatment/
Karen, how long have you been living with adhesive arachnoiditis? What treatment have you had?
@colleenyoung Thank you for moving me to the group. I have had A.A. since 2015 when my dura was cut during spine surgery. I take Methadone three times a day and Amitriptyline at night. I find this medication effective except for neuropathy in my feet at night,
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2 Reactions@sophie46 Hi Sophie, I too had my Dura torn during surgery. Then had 3 failed blood patches that just gumed up the base of my spine nerve bundle. It's been hell. I hope and pray that someday soon we can get relief. I'm sorry to hear you have AA. I feel Nobody understands my pain
@gsr4863 When I had the spinal fluid leak they drained the fluid from me by setting up a drip, which removed the extra fluid from me. I'm unable to think of a clear way of saying this. It worked. I am sorry that your pain is not being addressed. This is cruel.
Best bet is to connect with Dr Forest Tennant in California...retired dr that has dedicated nearly all his time to researching solutions for treatment for this. https://arachnoiditishope.com
You can email him and he'll answer. I use many natural remedies to help with this condition. The top recommendations are steroids and strong NSAIDS of course, but I cannot use these and have found other things that can help. Dr. Tennant has suggestions also.