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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@martyk

Perhaps you should talk to a pain management doctor or an neurologist about trying SCS, spinal cord stimulator or a pain pump. sounds like you have tried everything else and you have not gotten any significant relief. I'm considering an SCS for my back and foot pain.

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I'm not sure if an SCS is recommended for those with Tarlov cysts since it could make your pain worse. Any activity in and around the spinal cord and Tarlov cysts including the SCS, injections, etc. can trigger worse pain. This is especially true if you also have arachnoiditis. The benefits sound great but I can't imagine my pain being worse. It depends on how much pain you're in and what's causing it I suppose.

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@joanirene43

I had a heart attack Feb 2021 and worry regarding taking pain medication but the pain in my arms and leg are hard to cope with . I thought at first I had Bursitis but this soon progressed to having difficulty in walking far . MRI showed I had Arachnoiditis the nerves at base of spine all clumped together . I wanted to join to see what’s other sufferers found the best pain control. I live in New Zealand we dont have access to lots of different medications smaller country I guess just not the money here to purchase.
The pain is really bad I find it hard to sleep or cope with daily living eg house work etc. This seemed to come on suddenly my history re back troubles goes back from early ‘80s re Milogramme with dye back surgeries two numerous back injections lumber punctures etc etc. The last op was for a fusion which helped in 1985 though I was in a cast for six months ! This seems to have developed into this painful condition over the last year where it is affecting my daily life . I am waiting to see an Orthopedic surgeon end of this month.
Kind regards Joan

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I think it would be very beneficial for you to visit http://www.arachnoiditishope.com and http://www.intractablepainsyndrome.com. You will see that many of us talk about Dr. Tennant. He owns both websites and offers a protocol for self treatment along with a lot of other very valuable information.

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@qball2019

I'm not sure if an SCS is recommended for those with Tarlov cysts since it could make your pain worse. Any activity in and around the spinal cord and Tarlov cysts including the SCS, injections, etc. can trigger worse pain. This is especially true if you also have arachnoiditis. The benefits sound great but I can't imagine my pain being worse. It depends on how much pain you're in and what's causing it I suppose.

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Have any of your doctor's suggested a pain pump? That's probably a last resort.

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@martyk

Have any of your doctor's suggested a pain pump? That's probably a last resort.

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There was a doctor that mentioned it years ago. She also was sure to tell me that they do malfunction sometimes and can cause an overdose. She said they've had it happen a few times. Well that scares the crap out of me now. I would like to try it but with my bad luck I would be one of the people that have a malfunctioning device.

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Maybe the technology has gotten better since you last talked to a doctor about it. Might be worth looking into.

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@qball2019

I think it would be very beneficial for you to visit http://www.arachnoiditishope.com and http://www.intractablepainsyndrome.com. You will see that many of us talk about Dr. Tennant. He owns both websites and offers a protocol for self treatment along with a lot of other very valuable information.

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This is slightly off topic but since we're always looking for something to help with the pain I thought this would be relevant. I just found an article Dr. Tennant put out on Pain News Network regarding GABA supplements. I'm not even done reading it yet but I think I'm going to give it a try… https://www.painnewsnetwork.org/stories/2021/10/1/what-every-intractable-pain-patient-should-know-about-gaba

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Just thought I would share a couple articles I came across with herbal supplement recommendations for nerve pain. I figured it might help with arachnoiditis as well. Hope this is helpful!
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2X Day
Acetyl-L-Carnitine 2000gm Day
Inositol 500-1000mg Day
Vitamin B6 50-100mg Day
Vitamin B12 500-5000mcg Day
https://www.betternutrition.com/natural-living/natural-treatments-nerve-pain/

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@qball2019

Just thought I would share a couple articles I came across with herbal supplement recommendations for nerve pain. I figured it might help with arachnoiditis as well. Hope this is helpful!
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2X Day
Acetyl-L-Carnitine 2000gm Day
Inositol 500-1000mg Day
Vitamin B6 50-100mg Day
Vitamin B12 500-5000mcg Day
https://www.betternutrition.com/natural-living/natural-treatments-nerve-pain/

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Oh! Don't forget about palmitoylethanolamide (PEA) for pain! Here is an article I found about it. If you don't want to read through all the scientific stuff scroll down to the chart that shows the type of pain, dose, and outcome. Also, the paragraph right above it tells you more outcomes. It's a very interesting article! I've also included a link to the one that I buy. I take 600mg (2 of them) with each dose of my pain medication to boost it. Dr. Tennant mentions doing this on his website. I see they really raised the price on them but there are other choices available. Probably best to make sure they're made in the U.S.A. though!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094513/
https://www.amazon.com/Lake-Avenue-Nutrition-Palmitoylethanolamide-Capsules/dp/B0857KGS5Y/ref=sr_1_16?crid=1ERQDAT8TV5J8&keywords=Palmitoylethanolamide&qid=1639709311&sprefix=palmitoylethanolamide%2Caps%2C622&sr=8-16&th=1

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@qball2019

There was a doctor that mentioned it years ago. She also was sure to tell me that they do malfunction sometimes and can cause an overdose. She said they've had it happen a few times. Well that scares the crap out of me now. I would like to try it but with my bad luck I would be one of the people that have a malfunctioning device.

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They may have improved over the past several years. You might want to look into it again.

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December 2020 I had one small arachnoid cycst removed at t8. Three months later I had dozens of cycst up and down my spine. The worst was at T4. I went from numbness to total paraplegic from the chest down. In March of 2021. I had surgery to stop the progression in April 2021 and so far I still have use of my arms but paraplegic just under the armpits down. My dr calls it malignant adhesive arachnoiditis and cannot explain the rapid growth of the cycst. Just weeks after the April surgery my MRI showed more cycst (multiple) and adhesions all the way up into the cervical area. In July I had a VP shunt inserted in my brain to control the pressure buildup from my spine. Today I have extreme spaciity in my lower back. Total los ls of bowel and bladder control and no core support. Dr has no explanation and I currently have no treatment. My wife is my caretaker 24×7. Btw I am 71 years old and a Viet Nam vet with agent Orange issues.

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@rlcglds

December 2020 I had one small arachnoid cycst removed at t8. Three months later I had dozens of cycst up and down my spine. The worst was at T4. I went from numbness to total paraplegic from the chest down. In March of 2021. I had surgery to stop the progression in April 2021 and so far I still have use of my arms but paraplegic just under the armpits down. My dr calls it malignant adhesive arachnoiditis and cannot explain the rapid growth of the cycst. Just weeks after the April surgery my MRI showed more cycst (multiple) and adhesions all the way up into the cervical area. In July I had a VP shunt inserted in my brain to control the pressure buildup from my spine. Today I have extreme spaciity in my lower back. Total los ls of bowel and bladder control and no core support. Dr has no explanation and I currently have no treatment. My wife is my caretaker 24×7. Btw I am 71 years old and a Viet Nam vet with agent Orange issues.

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Hi Raymond,
First, thank you for your service. I”m 67 , was a senior in high school when the war was ended. Ny older brother recently passed away was a Viet Nam vet stationed at An San. I can sympathize with your back issues. I have something wrong at every level of vertebrae , have had three fusion surgeries and have AA with cauda equiina inflammatory disorder. , DDD, stenosis, scoliosis, etc. just saw my latest neurologist and he says it’s MS. I was wondering if you’ve heard of the Tennant Foundation. ? If not I’d suggest googling them to gain access to their site. They have been immensely helpful for me to the point where I’m directing the neurologist to at least look into them. I’ve got multiple MRIs that show AA in many areas. My biggest complaint thus far as long as I remain sufficiently medicated is burning feet. Sounds like you’re progressing faster / further. If you email the Tennant foundation give it some time to reply. They do eventually reply. There are a few low priced paperbacks on Amazon, written by Dr. Tennant that provide insights on fighting off the disease and slowing its progression.

Best regards,
Bob M.

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