1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

Interested in more discussions like this? Go to the Spine Health Support Group.

ann2654 | @ann2654 | Mar 30 11:40am

Has anyone been pregnant and had a child with arachnoiditis Were there special complications

REPLY
crystalc13 | @crystalc13 | Apr 14 7:00pm

Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial period. If the trial is successful, I will be getting one surgically implanted. Has anyone else tried a spinal stimulator? If so, please let me know if it was successful or not. Thank you!

REPLY
2 replies
phxratt1 | @phxratt1 | Apr 14 10:36pm
In reply to @crystalc13 "Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial..." + (show)
@crystalc13

Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial period. If the trial is successful, I will be getting one surgically implanted. Has anyone else tried a spinal stimulator? If so, please let me know if it was successful or not. Thank you!

Jump to this post

Hi, I'm a 65 y.o. male who's had 3 back surgeries. Your post really caught my eye. How did you get diagnosed? Was it after an MRI? I am hoping to do an SCS trial myself. I'm thinking my pain is from scar tissue. Did you have a surgery or trauma that caused the arachnoiditis? Best of luck to you.

REPLY
Sophie46 | @sophie46 | Apr 15 11:55am
In reply to @crystalc13 "Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial..." + (show)
@crystalc13

Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial period. If the trial is successful, I will be getting one surgically implanted. Has anyone else tried a spinal stimulator? If so, please let me know if it was successful or not. Thank you!

Jump to this post

I had a horse riding accident and crushed L1. Since then I have had three back surgeries. During the last surgery my dura was cut and I had a spinal fluid leak. From this I developed Adhesive Arachnoiditis and Tarlov Cysts. I tried a Spinal Cord Stimulator, but unfortunately they were only able to insert one wire instead of two. For the first year my pain was less and I was able to walk a long way. Then suddenly, I lost the ability to walk and the pain returned. I tried different programs, but could not find one that worked well for me. The doctor refuses to remove the battery.

REPLY
1 reply
sarsarson | @sarsarson | Apr 16 8:28am
In reply to @tennis123 "Hi, If anyone is still on this message board, I need advice please. I am in..." + (show)
@tennis123

Hi,

If anyone is still on this message board, I need advice please. I am in my 20s and started having lumbar and sacral back pain about 6 months ago. At first it was mild. In addition to the pain, I have had a strange crawling sensation in the same area too. The pain has waxed and waned since then but now is almost always there. Most of the time it feels like I have a tight band around my back, pelvis and low abdomen. About 2 months ago, I began having spasms and feeling like I needed to pee all the time. About 2 weeks ago, I started spasming really badly in all my pelvic muscles while still having the back pain and now am barely able to have a bowel movement because my muscles won't relax. I also have terrible vibrating/tingling in my sacral/pelvic area every time I sit down. I had an MRI of my entire spine that was normal about a month ago. I've also had numerous normal labs. Believe me, I've had almost everything checked. Acute phase reactants have been normal 3 times. I don't know what to do at this point. Does anything know what this could possibly be? Does it sound like arachnoiditis? I have no obvious known triggers like any spinal surgeries. I did have myself tested for HSV-2 and tested borderline positive for antibodies but have never had any obvious outbreaks that I've ever noticed.

Jump to this post

I’m so sorry to hear that you are going through this. You have many of the same symptoms that I have been struggling with for many years.

Did the lumbar/sacral part of your mri say anything about Tarlov Cysts? If not, perhaps you can ask your doctor to request a re-read of the MRI to assess for presence of them. Your symptoms sound very similar to those that people experience with this condition. The name Tarlov Cyst is somewhat of a misnomer as the actual condition is ballooning out of the nerve tissue within a nerve root, usually at the sacral level but sometimes at other levels of your spine.

Another idea is to ask your doctor about prudential nerve entrapment. This has similar symptoms to yours and to Tarlov Cysts.

REPLY
phxratt1 | @phxratt1 | Apr 16 10:18am
In reply to @sophie46 "I had a horse riding accident and crushed L1. Since then I have had three back..." + (show)
@sophie46

I had a horse riding accident and crushed L1. Since then I have had three back surgeries. During the last surgery my dura was cut and I had a spinal fluid leak. From this I developed Adhesive Arachnoiditis and Tarlov Cysts. I tried a Spinal Cord Stimulator, but unfortunately they were only able to insert one wire instead of two. For the first year my pain was less and I was able to walk a long way. Then suddenly, I lost the ability to walk and the pain returned. I tried different programs, but could not find one that worked well for me. The doctor refuses to remove the battery.

Jump to this post

Wow... you have been through a lot.... much more than i have.
I really hope you find something that helps you get back to a comfortable "normal". Best of luck to you, and take care.

REPLY
View MoreView Less
Please sign in or register to post a reply.