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.

@amandajro

Hello @deanflora61 and welcome to Mayo Clinic Connect. I am really sorry to hear that you don't have help from anyone. I am glad you found this discussion so that others who understand what you are going through can help to support you now.

Can I start by asking for a little more history such as how long you have been living with arachnoiditis and what are you currently doing for your pain?

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I do not know how long i have had it, pain started having increase 5 yrs. ago. my parents where sick for 4 yrs. both have passed. After that i started trying to get help, workmen comp, covid slowed things down. August 2020 i was diagnosed with arachnoiditis, from there workmen comp. has done everything they could do to do not to help. Trying to get rid of me, zero help with pain relief. Even reducing my medication. Now trying non-compliance.

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In reply to @zailey "yes" + (show)
@zailey

Hello @zailey and welcome to Mayo Clinic Connect. You are also living with arachnoiditis. What has been your experience and how long have you lived with it?

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I would like to know if anyone knows any physicians in either New York City and/or Long Island who truly know about arachnoiditis I have neurostimulator and are planning on having it removed. I have a lot of breakthrough pain and my pain management doctor is again trying to decrease the dosage. I guess with all the new rules about these drugs doctors are hesitant to give high dosages.

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@amandajro

Hello @deanflora61 and welcome to Mayo Clinic Connect. I am really sorry to hear that you don't have help from anyone. I am glad you found this discussion so that others who understand what you are going through can help to support you now.

Can I start by asking for a little more history such as how long you have been living with arachnoiditis and what are you currently doing for your pain?

Jump to this post

5/6 yrs. a workmen comp. problem, wait a month. sorry we can not help you, wait another month. sorry your in pain it can't be that bad, don't want to here about symptoms?

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@deanflora61

5/6 yrs. a workmen comp. problem, wait a month. sorry we can not help you, wait another month. sorry your in pain it can't be that bad, don't want to here about symptoms?

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@deanflora61 thank you for sharing a bit more. Have you been to a neurologist to discuss treatment options?

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@amandajro

Hello @deanflora61 and welcome to Mayo Clinic Connect. I am really sorry to hear that you don't have help from anyone. I am glad you found this discussion so that others who understand what you are going through can help to support you now.

Can I start by asking for a little more history such as how long you have been living with arachnoiditis and what are you currently doing for your pain?

Jump to this post

I'm sure it started at least 5/6 yrs, at the time my parents where ill. I could not do something for my self, i thought when everything would be alright. Go to a surgeon have a operation, 6 months be all better recovery. After covid was a yr. before, i got to a nero. surgeon to do the right mri. August 2020 i was informed i had arachnoiditis, no surgery no cure? Still trying to find someone to tell anything, about what i have face to face.

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@deanflora61

I'm sure it started at least 5/6 yrs, at the time my parents where ill. I could not do something for my self, i thought when everything would be alright. Go to a surgeon have a operation, 6 months be all better recovery. After covid was a yr. before, i got to a nero. surgeon to do the right mri. August 2020 i was informed i had arachnoiditis, no surgery no cure? Still trying to find someone to tell anything, about what i have face to face.

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@deanflora61 so many healthcare organizations are offering telemedicine as an option now. Have you considered that or requested that option in order to continue moving toward more information/answers?

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@pjf

I would like to know if anyone knows any physicians in either New York City and/or Long Island who truly know about arachnoiditis I have neurostimulator and are planning on having it removed. I have a lot of breakthrough pain and my pain management doctor is again trying to decrease the dosage. I guess with all the new rules about these drugs doctors are hesitant to give high dosages.

Jump to this post

Hello,
I am so sorry to.disappoint anyone with arachnoiditis. I’ve been suffering from it for twenty years. Diagnosis was confirmed by the May Clinic. It does not have cure or specific treatment and it is progressive. I am now using cane, wheelchair or electric scooter depending on the distance. It causes pelvic floor pain, severe stiffness in the. Back of my legs, partial numbness and the last few months sciatic pain on both sides. I tried pain pump many years ago. It was removed because it was not helping, PT seems to aggravate it. I now have a pain pump but for relentless trigeminal neuralgia. It is helping the TN but not the arachnoiditis. I was als diagnosed with CRPS and Rheumatoid arthritis
Anyone with so many neurological conditions?
I have and I am in very best hands : Mayo Clinic and now Baylor college of Medicine. I love and respect my doctors but this is a very difficult condition to treat. It’s almost hit or miss even for the very best .
Hang in there ! I am always hoping science will help l

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@kenyalama

Hello,
I am so sorry to.disappoint anyone with arachnoiditis. I’ve been suffering from it for twenty years. Diagnosis was confirmed by the May Clinic. It does not have cure or specific treatment and it is progressive. I am now using cane, wheelchair or electric scooter depending on the distance. It causes pelvic floor pain, severe stiffness in the. Back of my legs, partial numbness and the last few months sciatic pain on both sides. I tried pain pump many years ago. It was removed because it was not helping, PT seems to aggravate it. I now have a pain pump but for relentless trigeminal neuralgia. It is helping the TN but not the arachnoiditis. I was als diagnosed with CRPS and Rheumatoid arthritis
Anyone with so many neurological conditions?
I have and I am in very best hands : Mayo Clinic and now Baylor college of Medicine. I love and respect my doctors but this is a very difficult condition to treat. It’s almost hit or miss even for the very best .
Hang in there ! I am always hoping science will help l

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Thank you so much for your answer. I have been told what the outcome might be but hearing it from you really frightens me but I guess have no choice. The only thing I ask of you is you ever get any treatment that helps even a little bit please let people like me could at least try, God bless you. You are in my prayers kenyalama.

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@pjf

Thank you so much for your answer. I have been told what the outcome might be but hearing it from you really frightens me but I guess have no choice. The only thing I ask of you is you ever get any treatment that helps even a little bit please let people like me could at least try, God bless you. You are in my prayers kenyalama.

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Thank you for the prayers!
Never meant to frighten anyone, only meant to prepare and lower expectations regarding treatments
I can still enjoy life. I have friends, family and grandkids who have taken my cane, , scooter etc as toys. I even give them rides in the scouter haha. t as long as I am having a “decent day.”
There are better days and really bad days
I will be seeing one of ny neurologist in June. If I am due for new treatment I will pist it for sure

PS : meditation is really good for me
You can download the free app
Inside Timer they have free meditation sessions

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@kenyalama

Thank you for the prayers!
Never meant to frighten anyone, only meant to prepare and lower expectations regarding treatments
I can still enjoy life. I have friends, family and grandkids who have taken my cane, , scooter etc as toys. I even give them rides in the scouter haha. t as long as I am having a “decent day.”
There are better days and really bad days
I will be seeing one of ny neurologist in June. If I am due for new treatment I will pist it for sure

PS : meditation is really good for me
You can download the free app
Inside Timer they have free meditation sessions

Jump to this post

Thank you so much for your knowledge and support. I wish you good luck. It has been a pleasure meeting you.

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@pjf

Thank you so much for your knowledge and support. I wish you good luck. It has been a pleasure meeting you.

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Most welcome!
Wishing the very best to you !

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