Anyone been diagnosed with arachnoiditis after spine surgery?

Posted by jelizabeth @jelizabeth, Feb 18, 2019

Has anyone been diagnosed with arachnoiditis or cauda equina syndrome after a L5-S1 surgery?

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

Yes I was diagnosed also after my back surgery.

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Your story sounds exactly like mine. I also had spinal surgery and have been receiving meds for pain. In the last year my pain is getting worse, and although my pain doctor is helpful I can sense his hesitation about give me more meds.

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Forgot to tell you that when I got arch it was diagnosed with a Milogram which actually showed the damage to the nerves.

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@amandajro

Hello @pjf and welcome to Mayo Clinic Connect. I am sorry to hear that your disease seems to be getting worse. I can see that you are interested in feedback from other members with experience with arachnoiditis. For that reason, I will bring in @larauen and @jelizabeth who have recently commented in this discussion to they might be able to provide additional support.

What pain medicine are you taking and how is your stimulator working?

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Thank you Amanda. I would appreciate any feedback I can get

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Hi Several years ago, I had the same situation. My doctor did the same back surgery. I complained about pain after the surgery but my arrogant doctor kept saying you need time to heal. My story is also long so I will just say that Doctor Arrogant handed me a piece of paper and told me to go see a pain doctor. I asked what the problem was and he told me that the pain doctor would explain. It was arachnoiditis. Went to a neurosurgeon and had a milogram which confirmed diagnose. Since then have been seeing a pain doctor. Had a neurostimulator put in and after many years it is doing absolutely nothing. Pain getting much worse and anxious that my pain doctor will not be increasing my pain meds. I take 1 5 mg oxycodone 2x/day and 1 5 mg methadone 2x/day. I think my pain doctor is hesitant to increase meds and I don't know what to do now. I understand what your going through.

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Im so sorry. My story is the same as yours. Had the surgery. Then diagnosed with aracnoiditis. Been going to a pain management doctor for several years. Had a neurostimulator implanted. Stimulator has not worked for several years and planning to have it taken out. I pray for you. I have contacted several physicians but everyone tells me the same thing, you will have to live with it. Its frustrating. I find after several years the pain only gets worse. Due to the fact that doctors are hesitant to increase medication we don't have a bright outlook.

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@pjf

Im so sorry. My story is the same as yours. Had the surgery. Then diagnosed with aracnoiditis. Been going to a pain management doctor for several years. Had a neurostimulator implanted. Stimulator has not worked for several years and planning to have it taken out. I pray for you. I have contacted several physicians but everyone tells me the same thing, you will have to live with it. Its frustrating. I find after several years the pain only gets worse. Due to the fact that doctors are hesitant to increase medication we don't have a bright outlook.

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Thanks for your kind reply. Yes, the outlook is quite bleak. I'm considering umbilical cord stem cells at Bioxcellerator. Have to try something.

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I was diagnosed with arachnoiditis several years ago. As I have seen in many ofyour group discussions there is nothing other than pain management for my problem. I take 1 10 oxycodone and 1 Methadone 5 megs twice a day. They don't do much but I have no other choices. I must ask the group, do any of you sweat constantly during the day and night. It is so uncomfortable and I have to shower and wash my hair often during the day. I have seen different types of physicians and only one of them its because of my medication. Others have told me its menopause, Im 74. Does anyone have this problem. I would appreciate any advice. Thank you

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Hello @pjf. I can see you are eager to connect with members regarding your arachnoiditis and see if anyone can relate to your story. For that reason, you will notice that I have moved your post back into the existing discussion on "arachnoiditis" that you have posted in previously. I did this to reconnect you with members who have already joined this discussion.

You mentioned having no other choices for treatment outside of pain management. I found an article that talks about some other ideas for treatment that you may or may not have considered, so wanted to share.

-Medical News Today: Arachnoiditis Treatment and Diagnosis:
https://www.medicalnewstoday.com/articles/320811#treatment-and-diagnosis
As for the constant sweating, do you feel this is in some way connected to your Arachnoiditis? If not, I would invite you to consider sharing that aspect of your health story in our Women's Health group to see if members can help provide some support.

Women's Health Group: https://connect.mayoclinic.org/group/womens-health/

Have you tried any of the other Arachnoiditis treatment options mentioned in the article above?

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Thank you so much. I appreciate any information on arachnoiditis. Have a wonderful day

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Thank you Amanda. Unfortunately I already have a neurostimulator, had acupuncture, exercise and a few other treatments. But thank you so much for any assistance you or the group can give me. Its so comforting that you are so quick to help.

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Hello. I was diagnosed about 2 years ago. I had surgery for my back, everything was ok. Then…the pain came back worse than the surgery! Found a wonderful doctor on Hilton Head, SC. I've been trying to find someone that knows the pain i am experiencing. I know there is no cure. What I would like to chat with someone that has this rare disease. I hope that you will find relief. My doctor has me on Fentayl patch along with hydrocodone.

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