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?

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@pjf

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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I have arachnoiditis also and I’m on a buprophene patch and it does help. Ask bout this Good luck to you

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@uonlylvonce2

I have arachnoiditis also and I’m on a buprophene patch and it does help. Ask bout this Good luck to you

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Hello @uonlylvonce2, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with arachnoiditis and what has helped you. I saw in your other post here (https://connect.mayoclinic.org/comment/607637/) that you asked @carolinapearl53 who her doctor was. I thought I would mention her in this discussion in case she missed your first post.

Are you looking for a new doctor to help with your arachnoiditis?

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@uonlylvonce2

I have arachnoiditis also and I’m on a buprophene patch and it does help. Ask bout this Good luck to you

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Thank you for your post!
What kind of med Is ibuprophene patch?
Thank you in advance !

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Anyone experiencing sciatic pain from arachnoiditis ?
It’s been driving me crazy !
Also I understand Dr Tennabt license was removed?
I have been following his posts and comments abd fell he understands our suffering !

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I have an MRI proven arachnoiditis diagnosed at the Mayo Clinic and confirmed to be getting worse. Despite it all my EMG today was normal
I have pain, stiffness, and many more symptoms
Anyone with normal EMG and arachnoiditus?
Thank you all for sharing !

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@kenyalama

Thank you for your post!
What kind of med Is ibuprophene patch?
Thank you in advance !

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I believe you mean Buprenorphine patch. I take buprenorphine tablets under the tongue (sublingual) and it helps a little. I would like to try the patches, though. I am waiting until I go on medicare and hopefully they will be cheaper.

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@pjf

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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I also have a very bad case of sweating! I am on the fentanyl patch and have been on a hydrocodone for years. I have asked my pain doctor about the sweating, and its either the meds or hormones. Heck, how can we ever get better when the drugs are our only source of pain relief? Feel better!

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@cwallen9

I believe you mean Buprenorphine patch. I take buprenorphine tablets under the tongue (sublingual) and it helps a little. I would like to try the patches, though. I am waiting until I go on medicare and hopefully they will be cheaper.

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Yes thank you I meant bupremorohine. Suffering from arschnoiditis,CRPS and trigeminal neuralgia with now a dilauded pain pump .i i was never offered bupremorohine by any doctor
I was hospitalized three times last year with IV dilaudid until I had the pump implanted but, again, no doctor ever offered me that. I am so glad you have some relief. I will ask my neurologist about it.
Thank you so very much for your info!

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@cwallen9

I believe you mean Buprenorphine patch. I take buprenorphine tablets under the tongue (sublingual) and it helps a little. I would like to try the patches, though. I am waiting until I go on medicare and hopefully they will be cheaper.

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Thank you again!
I realized had not been prescribed the bupremorohine is because I am on other medicines for trigéminas neuralgia that clannot be taken with this one.
I have a dilaudid pain pump but it’s high in my neck entering my brain for the trigeminal so it’s not really helping the AA
Let’s stay strong and hoping for new ways to treat AA
I would gladly participae in trials but having rheumatoid arthritis and TN excludes me from anything ):
Good luck to all!
Please keep in touch!

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Please accept my apologies for the typos !

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@kenyalama

Thank you again!
I realized had not been prescribed the bupremorohine is because I am on other medicines for trigéminas neuralgia that clannot be taken with this one.
I have a dilaudid pain pump but it’s high in my neck entering my brain for the trigeminal so it’s not really helping the AA
Let’s stay strong and hoping for new ways to treat AA
I would gladly participae in trials but having rheumatoid arthritis and TN excludes me from anything ):
Good luck to all!
Please keep in touch!

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I would gladly be part of trial for help,on arnoiditis. To do is a big day of feeling I am screaming “HELP!” I’m exhausted already today and it’s only half past noon..

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@judithelaine

I would gladly be part of trial for help,on arnoiditis. To do is a big day of feeling I am screaming “HELP!” I’m exhausted already today and it’s only half past noon..

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Hello @judithelaine, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear you are in so much pain. Have you been diagnosed with arachnoiditis? Are you able to share about any treatments you've had and had any relief?

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