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:
gsr4863 Jon Arachnoiditis SUCKS | @gsr4863 | Oct 14 3:43pm
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.
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.
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!
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.
Yes! So good o know I’m not alone! Have been going to PT through my pc. Therapist is trying, but I’m not sure she understands the whole picture. She does have some advanced training.
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.
Mine began in 1972 with possibly an X-ray test with dissipating dye injected directly into suspect disc and/or subsequent laminectomy (L2). Surgeon left a small metal “clip” marking the place arachnoiditis starts. Recent MRI shows clip moved to sacral area…likely from a fairly recent MRI for a different issue. My walking is getting worse rapidly…I used to walk 6 miles a day!
What therapies have you found that help!
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 🙏
I understand! Searching for help too! Have been doing balance excises. I have a rebounder which I’m finding is very helpful with my balance and walking. I’m just watching instructions online…I’m open to any additional information…whatever helps!
I understand! Searching for help too! Have been doing balance excises. I have a rebounder which I’m finding is very helpful with my balance and walking. I’m just watching instructions online…I’m open to any additional information…whatever helps!
I used to walk for an hour a day or more with my dog over difficult terrain. When I started to lose my ability to walk I had a spinal cord stimulator installed. Unfortunately they were only able to place one wire down my spine due to my injuring L1. For a year, I was able to walk very well and then suddenly I lost this ability. Now I can walk just the length of my home with a walker. I have not found anything that helps.
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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?
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2 ReactionsHi, 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 🙏
-
Like -
Helpful -
Hug
2 ReactionsYes, 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.
-
Like -
Helpful -
Hug
2 ReactionsHi @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.
Yes! So good o know I’m not alone! Have been going to PT through my pc. Therapist is trying, but I’m not sure she understands the whole picture. She does have some advanced training.
Mine began in 1972 with possibly an X-ray test with dissipating dye injected directly into suspect disc and/or subsequent laminectomy (L2). Surgeon left a small metal “clip” marking the place arachnoiditis starts. Recent MRI shows clip moved to sacral area…likely from a fairly recent MRI for a different issue. My walking is getting worse rapidly…I used to walk 6 miles a day!
What therapies have you found that help!
I understand! Searching for help too! Have been doing balance excises. I have a rebounder which I’m finding is very helpful with my balance and walking. I’m just watching instructions online…I’m open to any additional information…whatever helps!
I used to walk for an hour a day or more with my dog over difficult terrain. When I started to lose my ability to walk I had a spinal cord stimulator installed. Unfortunately they were only able to place one wire down my spine due to my injuring L1. For a year, I was able to walk very well and then suddenly I lost this ability. Now I can walk just the length of my home with a walker. I have not found anything that helps.
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Hug
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