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.

Hi Jellizabeth I had the same problem several years ago. I had the surgery and the pain was actually worse. After many tests I was diagnosed with arachnoiditis. I am now on oxycodone and methadone. I also have a stimulator. Neither medication or the stimulator do any good. The burning and pins and needles seem to be getting worse. I don't know what I will do either. Im so sorry you are going through all of this. I had nerve burning on my knee because after knee surgery I had swelling and pain and had nerve buring. I get this done every few months. It helps a little bit for a short time. I pray for you and hope you find someone to help you

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Hello everyone!
I am Anma. I was diagnosed with arachnouditis and pelvic floor pain related to it at the Mayo Clinic many years ago.
My nightmare is walking mostly. It causes shooting pain in the pelvic floor, I now have sciatic pain in both sides and coccyx pain. My left leg feels short
I have a pain pump for trigeminal neuralgia but does not help the pain of the arachnoiditis
I would like to know if there is anyone with the sane ?

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@kenyalama

Hello everyone!
I am Anma. I was diagnosed with arachnouditis and pelvic floor pain related to it at the Mayo Clinic many years ago.
My nightmare is walking mostly. It causes shooting pain in the pelvic floor, I now have sciatic pain in both sides and coccyx pain. My left leg feels short
I have a pain pump for trigeminal neuralgia but does not help the pain of the arachnoiditis
I would like to know if there is anyone with the sane ?

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Hi Anma, welcome. I'd like to connect you with fellow members @bkruppa @qball2019 @janetsue @jelizabeth and others who know first hand about managing arachnoiditis and pelvic pain.

You may also be interested in this related discussion in the Spine Health group (https://connect.mayoclinic.org/group/spine-health/) started by @arannek72
– Arachnoiditis: Looking to talk with others https://connect.mayoclinic.org/discussion/arachnoiditis/

Anma, are you in the care of a pain management specialist?

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@colleenyoung

Hi Anma, welcome. I'd like to connect you with fellow members @bkruppa @qball2019 @janetsue @jelizabeth and others who know first hand about managing arachnoiditis and pelvic pain.

You may also be interested in this related discussion in the Spine Health group (https://connect.mayoclinic.org/group/spine-health/) started by @arannek72
– Arachnoiditis: Looking to talk with others https://connect.mayoclinic.org/discussion/arachnoiditis/

Anma, are you in the care of a pain management specialist?

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Hi Colleen,
Thank you for your reply.
I am under the care of many specialists including neurosurgeon, neurologist, rheumatologist and more. I suffer not only from arachnoiditis and pelvic floor dysfunction ( for a long time) but also from CRPS, relentless Trigeminal neuralgia ( 2 MVDs, cyber knife and now dilaudid intrathecal pump and oral anticonvulsants etc
I was also diagnosed with Rheumatoid arthritis and Hashinito’s disease
I have to use a wheelchair for long distances
It’s so good to be able to chat about this!

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@kenyalama

Hi Colleen,
Thank you for your reply.
I am under the care of many specialists including neurosurgeon, neurologist, rheumatologist and more. I suffer not only from arachnoiditis and pelvic floor dysfunction ( for a long time) but also from CRPS, relentless Trigeminal neuralgia ( 2 MVDs, cyber knife and now dilaudid intrathecal pump and oral anticonvulsants etc
I was also diagnosed with Rheumatoid arthritis and Hashinito’s disease
I have to use a wheelchair for long distances
It’s so good to be able to chat about this!

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Thank you for sharing a bit more about you. Here are some other discussion groups you may be interested in:
– CRPS – anyone suffering with complex regional pain syndrome https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Rheumatoid Arthritis (RA) – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
– Hashimoto's Thyroiditis and IVIG Treatment?* https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

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@colleenyoung

Thank you for sharing a bit more about you. Here are some other discussion groups you may be interested in:
– CRPS – anyone suffering with complex regional pain syndrome https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– Rheumatoid Arthritis (RA) – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
– Hashimoto's Thyroiditis and IVIG Treatment?* https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

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So many resources!
Thanks a million Colleen!

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Hello
My name is Linda. Had back fusion Sl !to L5 surgery in 2012. Never been the same. Lots of pain everywhere and no admission or help.
Pretty much same story. Except for surgical accident cut iliac vein causing total disruption of vascular system led to symptoms requiring stents. Now have stents revised each 6 mons. Cauda equine syndrome as well.

Looking for surgeon to do instability of thoracic spine.

Any suggestions?

Thank you.

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@spiderlady

Hello
My name is Linda. Had back fusion Sl !to L5 surgery in 2012. Never been the same. Lots of pain everywhere and no admission or help.
Pretty much same story. Except for surgical accident cut iliac vein causing total disruption of vascular system led to symptoms requiring stents. Now have stents revised each 6 mons. Cauda equine syndrome as well.

Looking for surgeon to do instability of thoracic spine.

Any suggestions?

Thank you.

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@spiderlady If you are looking to be seen at Mayo in Rochester, I would highly recommend Dr. Jeremy Fogelson. He takes complex cases of spinal deformity and has both neurosurgery and orthopedic training. He did my cervical surgery 4 years ago with excellent results. A lot of spine surgeons do not operate on the thoracic area, and I believe that he does as a deformity expert.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

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@spiderlady

Hello
My name is Linda. Had back fusion Sl !to L5 surgery in 2012. Never been the same. Lots of pain everywhere and no admission or help.
Pretty much same story. Except for surgical accident cut iliac vein causing total disruption of vascular system led to symptoms requiring stents. Now have stents revised each 6 mons. Cauda equine syndrome as well.

Looking for surgeon to do instability of thoracic spine.

Any suggestions?

Thank you.

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Hello @spiderlady and welcome to Mayo Clinic Connect. I am sorry to hear of your surgical outcome and pain that resulted.

If you are interested in exploring Neurosurgeons at Mayo Clinic for the thoracic spine surgery, please let me know and I can share the appointment link information with you.

Were you recently told you needed this surgery?

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I have it with no help from anyone, don not whereto turn. the pain is unbelievable?

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@deanflora61

I have it with no help from anyone, don not whereto turn. the pain is unbelievable?

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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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