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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@judithelaine

Dear John, I’m sad to say I have had no respite, and things are getting exponentially more difficult, and I can offer nothing that is helping. It is quite a lonely journey, isn’t it? I had fusion surgery at L 4/5, along with laminectomy and discectomy 13 years ago. My pain management has gone from least invasive upward, and ending with radio frequency, which was a reactive three weeks of H—L. The electric “evader” was tried to no avail. Then he looked at me and said there were no more options, and with trial and error, we came up with serious pain meds.

I bought two of Dr. Tennant’s books, and watched his webinar of 2020. I bought his recommended Tumeric/Curcumin and pregnenolone at a health food store, and we shall see. I live in NYC, I have Medicare and Medicaid with no out of pocket medical options due to personal finances. However, this Tennant approach of going through blood/brain barrier makes sense. Do you know doctors here who are willing to try his protocols for this mind-destroying pain?

Sometimes I wonder if I’m doing something wrong, like trying to “trick” contractions to spiral out. What an imagination, heh.

Have you any thoughts on things that may be helpful?

Again, thank you, John for reaching out.

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My pain management doctor just offered me Belbuca for pain. She said it works for both nerve pain and "regular" pain. Not sure if regular pain is the correct wording there but hope it makes sense. She gave me a big packet of info. on it. Has anyone heard of it before and more importantly, has anyone tried it? The info. (side affects) seems kind of scary but I think I might try it out. It's a little square that you put on the inside of your cheek and it dissolves offering 'round the clock pain relief. Can you imagine??? I had Fentanyl patches for 13 years without any real troubles. I would get a little sick if I got too hot so I had to be careful about being outside when it was hot, in the shower, etc. Other than that, it was a great pain reliever. When they had me get rid of it I didn't have any bad side affects at all. I've never heard of Belbuca before but I'm curious to find out if it offers similar pain control. It might be something to ask your doctors about.

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@lisalucier

Hi, @jelizabeth – I'd like to invite into this conversation members familiar with arachnoiditis or cauda equina syndrome to comment on whether they had these diagnoses after L5-S1 surgery, like @peggyella @justjenna @caklady @carolinapearl53 @jseibert @skiprel1957. @johnbishop may also have some thoughts for you on a potential connection.

Have you had L5-S1 surgery, then, @jelizabeth? Have you been diagnosed with both arachnoiditis or cauda equina syndrome?

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Hello I have only just been diagnosed via MRI now waiting to see Orthopedic Surgeon at end of this month. I accept the fact that more surgery could make my condition worse . My history is of Milogramme with dye, spinal injections, lumber puncture, two spinal operations that have left me with Arachnoiditis and cauda equine syndrome. Spinal surgeries were carried out in the 80’s due to ongoing pain I was given Cortisone injections in spine. Now the worst pain is in my leg and arms .

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@joanirene43

Hello I have only just been diagnosed via MRI now waiting to see Orthopedic Surgeon at end of this month. I accept the fact that more surgery could make my condition worse . My history is of Milogramme with dye, spinal injections, lumber puncture, two spinal operations that have left me with Arachnoiditis and cauda equine syndrome. Spinal surgeries were carried out in the 80’s due to ongoing pain I was given Cortisone injections in spine. Now the worst pain is in my leg and arms .

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Hello @joanirene43 and welcome to Mayo Clinic Connect. This diagnosis is very fresh for you and you have another appointment, for an MRI, coming up soon. How can members best offer their support to you?

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@amandajro

Hello @joanirene43 and welcome to Mayo Clinic Connect. This diagnosis is very fresh for you and you have another appointment, for an MRI, coming up soon. How can members best offer their support to you?

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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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Read Dr. Forest Tennant for advice. Gabapentin helps me. Hope you can get it in Néw Zeland. Stretching and deep breathing help too. Dr. Tennant also recommends GABA B-6, a vitamin. I sympathize with you- it’s pretty awful, and no one understands.

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@contributor

Read Dr. Forest Tennant for advice. Gabapentin helps me. Hope you can get it in Néw Zeland. Stretching and deep breathing help too. Dr. Tennant also recommends GABA B-6, a vitamin. I sympathize with you- it’s pretty awful, and no one understands.

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Thank you will follow up on this advice

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@lisalucier

Hi, @jelizabeth – I'd like to invite into this conversation members familiar with arachnoiditis or cauda equina syndrome to comment on whether they had these diagnoses after L5-S1 surgery, like @peggyella @justjenna @caklady @carolinapearl53 @jseibert @skiprel1957. @johnbishop may also have some thoughts for you on a potential connection.

Have you had L5-S1 surgery, then, @jelizabeth? Have you been diagnosed with both arachnoiditis or cauda equina syndrome?

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I had spine surgery with the FX Machine cutting off a little of my bulging discs to get them off of my nerve, and I knew that it could be a risk, but the pain was so bad that four months ago I had that surgery, and now after the MRI with dye contrast I learned about this Arachnoiditis that I otherwise would of never probably known anything about. I do not know if I am going to be able to find a doctor in my county in Florida where I can use my insurance for treatment. This is scary and it is stressful.

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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 hope you find ways to get pain relief that will make life more tolerable. I love my vibrating heat pad. It helps me sleep.

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@qball2019

My pain management doctor just offered me Belbuca for pain. She said it works for both nerve pain and "regular" pain. Not sure if regular pain is the correct wording there but hope it makes sense. She gave me a big packet of info. on it. Has anyone heard of it before and more importantly, has anyone tried it? The info. (side affects) seems kind of scary but I think I might try it out. It's a little square that you put on the inside of your cheek and it dissolves offering 'round the clock pain relief. Can you imagine??? I had Fentanyl patches for 13 years without any real troubles. I would get a little sick if I got too hot so I had to be careful about being outside when it was hot, in the shower, etc. Other than that, it was a great pain reliever. When they had me get rid of it I didn't have any bad side affects at all. I've never heard of Belbuca before but I'm curious to find out if it offers similar pain control. It might be something to ask your doctors about.

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I was prescribed Belbuca 75mg. I don't like the delivery system but I tried it for about a week, didn't help with the pain. I don't remember any said effects so perhaps I didn't give it enough time to work. They come in a box of 60 your suppose to use one every 12 hours. They're not covered by insurance, so mine was $40.00. I may try taking them again for a longer period. Why did your doctor take you off of Fentanyl if it gave you some relief?

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@alphiwolfi

I hope you find ways to get pain relief that will make life more tolerable. I love my vibrating heat pad. It helps me sleep.

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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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@martyk

I was prescribed Belbuca 75mg. I don't like the delivery system but I tried it for about a week, didn't help with the pain. I don't remember any said effects so perhaps I didn't give it enough time to work. They come in a box of 60 your suppose to use one every 12 hours. They're not covered by insurance, so mine was $40.00. I may try taking them again for a longer period. Why did your doctor take you off of Fentanyl if it gave you some relief?

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Yes, the Fentanyl did work for me but every doctor I saw for pain refused to prescribe it because of the "opioid crisis". Like many others who don't really understand what it's like to be in pain, they told me it doesn't really work and it's way too strong. How do they know if it works if they aren't the ones in pain? I apologize, I'm pretty sour about it. What works for one person doesn't always work for another.They also don't understand that pain patients aren't the cause of the opioid crisis yet we're treated like drug addicts.

As far as the Belbuca goes, I haven't tried it yet. My doctor told me we would wait until after the holidays because she didn't want me to be sick. Apparently, the most common side affect is being nauseous and people report throwing up constantly for like a month. Your body needs to get used to it. After that they report great pain relief for all types of pain including nerve pain. You are very lucky to not have had any side affects. I'm wondering if maybe it didn't work because they start you off on the lowest dose possible and then are supposed to titrate you up. I would see if they will let you give it another try. This time stick with it until you reach a dose that works? I think I'm going to give it a try but if I'm throwing up constantly I may have to stop. Now I have some nerve damage that involves the bladder and bowel (from the Tarlov cysts) so I'm sure you can imagine my point with that. I threw up for a month with the Fentanyl but I think it was because my doctor started me out at 50 mcg rather than starting low and going up. He just told me my body would get used to the medication and it would stop… and he was right. I didn't even care at that time about throwing up around the clock because it was very effective. I was in so much pain I couldn't sit/lay still and I couldn't sleep so I thought sticking it out for a month was very worth it. My main concern about trying Belbuca and starting at the lowest possible dose is how bad the pain is going to be. It scares me to think about it. By that I mean, starting low I won't have any pain control until I reach a dose that helps. If I get to try it I'll respond to this post again to let you know how it goes. Also, if you try it again please stick with it and let me know how it works for you. Until then, hang in there!

REPLY
@qball2019

Yes, the Fentanyl did work for me but every doctor I saw for pain refused to prescribe it because of the "opioid crisis". Like many others who don't really understand what it's like to be in pain, they told me it doesn't really work and it's way too strong. How do they know if it works if they aren't the ones in pain? I apologize, I'm pretty sour about it. What works for one person doesn't always work for another.They also don't understand that pain patients aren't the cause of the opioid crisis yet we're treated like drug addicts.

As far as the Belbuca goes, I haven't tried it yet. My doctor told me we would wait until after the holidays because she didn't want me to be sick. Apparently, the most common side affect is being nauseous and people report throwing up constantly for like a month. Your body needs to get used to it. After that they report great pain relief for all types of pain including nerve pain. You are very lucky to not have had any side affects. I'm wondering if maybe it didn't work because they start you off on the lowest dose possible and then are supposed to titrate you up. I would see if they will let you give it another try. This time stick with it until you reach a dose that works? I think I'm going to give it a try but if I'm throwing up constantly I may have to stop. Now I have some nerve damage that involves the bladder and bowel (from the Tarlov cysts) so I'm sure you can imagine my point with that. I threw up for a month with the Fentanyl but I think it was because my doctor started me out at 50 mcg rather than starting low and going up. He just told me my body would get used to the medication and it would stop… and he was right. I didn't even care at that time about throwing up around the clock because it was very effective. I was in so much pain I couldn't sit/lay still and I couldn't sleep so I thought sticking it out for a month was very worth it. My main concern about trying Belbuca and starting at the lowest possible dose is how bad the pain is going to be. It scares me to think about it. By that I mean, starting low I won't have any pain control until I reach a dose that helps. If I get to try it I'll respond to this post again to let you know how it goes. Also, if you try it again please stick with it and let me know how it works for you. Until then, hang in there!

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I tried it for about a week. No side effects. I have about a 3 week supply left. Those Heroin addicts who overdosed gave opioids a bad name. I wonder what elderly doctors take for chronic pain?

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