Adhesive Arachnoiditis & the Effects on Walking

I have Adhesive Arachnoiditis. I crushed L1 in a horse riding accident in 1986. Since then I have had three back surgeries and have four rods and screws in my back. My AA was caused during my third surgery when my dura was cut and I had a spinal fluid leak. I could walk very well, but for the last three years my walking has diminished and I can now walk the length of my home.

Hello @louisagjafrwi923, welcome to Mayo Clinic Connect. I updated your title some to include the issues around its effect on your walking. You may also be interested in the following discussions on adhesive arachnoiditis:

"Any Adhesive Arachnoiditis members here?: " - https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
"anyone been diagnosed with arachnoiditis after spine surgery?" - https://connect.mayoclinic.org/discussion/arachnoiditis-2/

I'd like to invite a few members from those discussions to share their experiences with adhesive arachnoiditis and if it altered walking for them: @kgrainger, @mmata, @the4curtins, @labgirl, @glassart and @colvillegypsy.

@louisagjafrwi923 - if you are comfortable sharing, is the arachnoiditis affecting your balance, gait or some other aspect of your walking?

Hi, Sorry to hear about how Arachnoiditis is effecting your life 😢 it SUCKS I also had a Dura tear during surgery. 3 failed blood patches. Walking has become very tough. I lose my balance and bump into things often. I wish I had someone to talk to. I'm suffering daily. Sending prayers and Positive thoughts your way 🙏

Yes, I’ve been a member of the AA club since 1978– been a rough road. You must have a local (relatively) medical professional to help you. I’ve educated more Drs than I can count. In the last year, walking has become much more difficult, and we’ve found that AA is PROGRESSIVE! Yes it can get worse. So I’m going through a series of test to titrate the right dosage from my Medtronic intrathecal pump. Keep the faith a keep in touch.

Hi @sophie46, my mom is very similar to you with tarlov cysts, CSF leaks and now AA. Her original issue was just the CSF leak and we discovered the tarlov cysts while trying to find her leak. She has had a lumbar puncture, blood patch and now four fibrin glue injections into 4 cysts which she believes has now caused her to develop AA. She isn't doing well at all and is now scared to do anything further to try and find and fix her leak for fear of worsening the AA. Can I ask, are you still suffering from the spinal fluid leak? Did you have any procedures to try and fix your leak and if so, did they make the AA worse? Any advice? Thanks so much!

I am very sorry to learn that your mother isn't doing well. My spinal fluid leak was discovered when I was still in the hospital after having a third fusion. They removed the fluid by setting up an intravenous to draw fluid out of my spine. Since this procedure my nose constantly runs, especially when I eat. I have been told that I have numerous tarlov cysts and also AA. I have no idea if my AA was made worse by draining the spinal fluid. I did not have Adhesive Arachnoiditis before this third fusion.