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.

@johnbishop

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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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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@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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Oh, and “yes I have been diagnosed with it. However, a neurologist he sent me to, had another MRI done, and it was not in that report.

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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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There is another discussion you may want to check out that other members have used to treat chronic pain from various conditions – Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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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 sent you a PM but am also posting this here because I think it may also help others.

I'm so sorry to hear about your pain. I can definitely relate. The first thing you need to do is go to http://www.arachnoiditishope.com and read all you can. Print the surveys, lab tests, medical protocol recommendations, and anything else you think might help the doctor to help you. First and foremost the inflammation needs to be addressed. Once that happens you will get some pain relief and you can start to manage your pain from there. Unfortunately, arachnoiditis is one of the possible risks that comes with any kind of spine surgery. Once inflammation takes hold and is not addressed things start to spiral from there. Don't get me wrong, I completely understand how you feel about the doctors because I've had 18 years of what you have described including doctors that have been rude, thought I was a drug seeker, etc. I now understand that, just like the Tarlov cysts that I have/had (I had surgery), arachnoiditis is an "incidental finding" and will not always be noted on an MRI and that most doctors have little to no knowledge about it. Those that do should definitely take heed and recommend the rheumatologist. I have arachnoiditis, most likely adhesive, but my other doctors and I believe I had it long before the surgery. The inflammation and pain has gotten worse since surgery. I am now waiting for my labs (recommended by Dr. Tennant from http://www.arachnoiditishope.com) to come back. Then I can take my MRIs, labs, and surveys to a rheumatologist. Also, don't hesitate to email questions to Dr. Tennant and his team. They are very supportive and helpful. You will also need a pain management provider that is willing to take the time to look into your condition and is willing to work with you. When you go in for you initial appt. present them with your information right away and ask them if they are willing to learn a little bit more about your condition and work with you. If not, then you need to move on to the next doctor. I found one of the most knowledgeable doctors in interventional pain management. Look for one with expertise in anesthesiology. You are also welcome to read some of my other posts for more into. Tarlov cysts and arachnoiditis go hand in hand and have a lot of similar traits and symptoms. I wish you the best of luck and hope you find some relief! Take care!

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Hello, not sure if this discussion is still open, Due to spondylolithesis and incredible pain I underwent L5-S1 spinal fusion August 2020. I have had nerve pain throughout my recovery. I had an MRI in April 2021 which showed arachnoiditis along with a huge seroma at right surgical site. Tried to have seroma drained and it produced 60cc fluid but also incredible burning pain nearing completion of drain. Recent ( July 2020) shows seroma back as large as before and very calcified. I am scheduled for surgical removal on August 23rd but concerned another surgery could increase the symptoms and progression of arachnoiditis. My orthopedic surgeon denied arachnoiditis diagnosis but I just went to a neurosurgeon for 2nd opinion and he confirmed arachnoiditis dx. I am a long time CT Technologist so some medical background. I am very much interested in further studies etc. in regards to arachnoiditis as well as seroma presentation post lumbar surgery.
Thank

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@ruby460

Hello, not sure if this discussion is still open, Due to spondylolithesis and incredible pain I underwent L5-S1 spinal fusion August 2020. I have had nerve pain throughout my recovery. I had an MRI in April 2021 which showed arachnoiditis along with a huge seroma at right surgical site. Tried to have seroma drained and it produced 60cc fluid but also incredible burning pain nearing completion of drain. Recent ( July 2020) shows seroma back as large as before and very calcified. I am scheduled for surgical removal on August 23rd but concerned another surgery could increase the symptoms and progression of arachnoiditis. My orthopedic surgeon denied arachnoiditis diagnosis but I just went to a neurosurgeon for 2nd opinion and he confirmed arachnoiditis dx. I am a long time CT Technologist so some medical background. I am very much interested in further studies etc. in regards to arachnoiditis as well as seroma presentation post lumbar surgery.
Thank

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Hi, I read your comments. Is it under control now? Did you have leg pain? Where do you live?

REPLY
@ruby460

Hello, not sure if this discussion is still open, Due to spondylolithesis and incredible pain I underwent L5-S1 spinal fusion August 2020. I have had nerve pain throughout my recovery. I had an MRI in April 2021 which showed arachnoiditis along with a huge seroma at right surgical site. Tried to have seroma drained and it produced 60cc fluid but also incredible burning pain nearing completion of drain. Recent ( July 2020) shows seroma back as large as before and very calcified. I am scheduled for surgical removal on August 23rd but concerned another surgery could increase the symptoms and progression of arachnoiditis. My orthopedic surgeon denied arachnoiditis diagnosis but I just went to a neurosurgeon for 2nd opinion and he confirmed arachnoiditis dx. I am a long time CT Technologist so some medical background. I am very much interested in further studies etc. in regards to arachnoiditis as well as seroma presentation post lumbar surgery.
Thank

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Hi @ruby460 and welcome to Mayo Clinic Connect. I would definitely take into consideration your medical background and the fact that you sought out a second opinion and they confirmed a diagnosis before you let your surgeon operate on you. You will see that I removed your scan from your post. I only did this because it had your private medical information on it and we at Mayo Clinic Connect want to protect you at all costs. If you would like to crop the image and repost it, please feel free.

Have you considered seeking surgery with the second neurosurgeon instead?

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I was diagnosed with arachnoiditis in 2014 after spine surgery. I have been taking pain meds since then. I take 20 mgs of oxcodone and 10 mgs of methadone daily. When I have breakthrough pain,I can take 10 mgs. I find that this has kept my pain under control. I live in New York State and I am seen by a pain management physician. I have tried not taking pain meds but the pain gets more intense especially in my lower body. A milogram was taken to confirm I had arachnoiditis. I pray every day that someone will discover how to repair the damaged nerves. pjf

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@cblank017

Hi, I read your comments. Is it under control now? Did you have leg pain? Where do you live?

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Hello, my pain for this past year post fusion has been mostly burning nerve pain across lower butt. I do get some left leg pain and yet the large seroma that needs removing is on the right. Mostly leg weakness or occasional pain down both if standing too long. I live in Massachusetts. I am extremely worried in regards to the arachnoiditis diagnosis and would love to see how people are dealing or treating it since it was rare but with more lumbar procedures comes more diagnoses of the disease.

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@amandaburnett

Hi @ruby460 and welcome to Mayo Clinic Connect. I would definitely take into consideration your medical background and the fact that you sought out a second opinion and they confirmed a diagnosis before you let your surgeon operate on you. You will see that I removed your scan from your post. I only did this because it had your private medical information on it and we at Mayo Clinic Connect want to protect you at all costs. If you would like to crop the image and repost it, please feel free.

Have you considered seeking surgery with the second neurosurgeon instead?

Jump to this post

Hello, I have not considered neurosurgeon in lieu of my original orthopedic surgeon. I am scheduled a week from tomorrow and I'm quite nervous due to the length of time the calcified seroma has been there. When it was drained I had intense nerve pain throughout my body. I did have some pain relief days after drainage two months ago. One of my concerns with the arachnoiditis dx is that if I have surgery to remove the seroma and since a CSF leak is considered due to rapid refill, I will be getting patch that the arachnoiditis progression will escalate. I am a healthy, in shape, 61 yr old and am already seeing the affects of the surgery and complications. I will do everything available or suggested to keep progressive symptoms from developing. When I saw the question I was hoping for direction or voices of experience. Thanks I have an additional complication in the spine as I broke my neck as a kid and now have an area with cervical myelopathy. I am blessed so far that I do not have neck pain though and the neurologist said I do not need to rush any cervical fix.

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@qball2019

I sent you a PM but am also posting this here because I think it may also help others.

I'm so sorry to hear about your pain. I can definitely relate. The first thing you need to do is go to http://www.arachnoiditishope.com and read all you can. Print the surveys, lab tests, medical protocol recommendations, and anything else you think might help the doctor to help you. First and foremost the inflammation needs to be addressed. Once that happens you will get some pain relief and you can start to manage your pain from there. Unfortunately, arachnoiditis is one of the possible risks that comes with any kind of spine surgery. Once inflammation takes hold and is not addressed things start to spiral from there. Don't get me wrong, I completely understand how you feel about the doctors because I've had 18 years of what you have described including doctors that have been rude, thought I was a drug seeker, etc. I now understand that, just like the Tarlov cysts that I have/had (I had surgery), arachnoiditis is an "incidental finding" and will not always be noted on an MRI and that most doctors have little to no knowledge about it. Those that do should definitely take heed and recommend the rheumatologist. I have arachnoiditis, most likely adhesive, but my other doctors and I believe I had it long before the surgery. The inflammation and pain has gotten worse since surgery. I am now waiting for my labs (recommended by Dr. Tennant from http://www.arachnoiditishope.com) to come back. Then I can take my MRIs, labs, and surveys to a rheumatologist. Also, don't hesitate to email questions to Dr. Tennant and his team. They are very supportive and helpful. You will also need a pain management provider that is willing to take the time to look into your condition and is willing to work with you. When you go in for you initial appt. present them with your information right away and ask them if they are willing to learn a little bit more about your condition and work with you. If not, then you need to move on to the next doctor. I found one of the most knowledgeable doctors in interventional pain management. Look for one with expertise in anesthesiology. You are also welcome to read some of my other posts for more into. Tarlov cysts and arachnoiditis go hand in hand and have a lot of similar traits and symptoms. I wish you the best of luck and hope you find some relief! Take care!

Jump to this post

Thanks for this. I have a pain mgmt dr who diagnosed AA after increasing pain from surgery fusion L 4/5. I brought in some printed material from Dr. Tennant, and showed him the book. I gave a little run down and then asked him to just skim the materials; “You’re a fast reader I said.” As I handed it to him he he reacted as if it were contaminated. He is tied into east coast research; hope, but doubt he looked at it. Have cancer surgery coming hope and pain from back/legs/hips is what has me in fear. My therapist who has PHD in pain is much connected to rheumatologist world and she gave me some names.

I’m sorry your have and are going through all this pain. Unfortunately, being truly understood is comforting.

-not proofread-

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@judithelaine

Thanks for this. I have a pain mgmt dr who diagnosed AA after increasing pain from surgery fusion L 4/5. I brought in some printed material from Dr. Tennant, and showed him the book. I gave a little run down and then asked him to just skim the materials; “You’re a fast reader I said.” As I handed it to him he he reacted as if it were contaminated. He is tied into east coast research; hope, but doubt he looked at it. Have cancer surgery coming hope and pain from back/legs/hips is what has me in fear. My therapist who has PHD in pain is much connected to rheumatologist world and she gave me some names.

I’m sorry your have and are going through all this pain. Unfortunately, being truly understood is comforting.

-not proofread-

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I'm happy I noticed the notification I received of your pm! I don't check my emails very much these days and I haven't been spending very much time on Mayo Clinic Collect. I probably should though.

I am so sorry to hear that you have arachdnoiditis, Tarlov cysts, and had to have surgery on your L5… and of course the cancer surgery. I will send my prayers for you! Like you, I have done a ton of reading on Dr. Tennant's websites. I think I may have read every page on both sites! Have you checked out his http://www.intractablepainsyndrome.com as well? I did send some questions to his team and also included my symptoms and Dr. Tennant responded to me. He thinks I may also have EDS and that I have developed intractable pain syndrome. He said most all patients that have Tarlov cysts also have EDS (the cysts being secondary to the EDS). I have taken the surveys and info. in to my doctors. So far my primary care is in support of the arachnoiditis, my physical therapist that I've been with since 2005 has mentioned that she would be shocked if I didn't have it many times over the years, my pain management doctor seems to be on board as well although she hasn't said much about it. The pain management doctor has other patients that have gone to Dr. Feigenbaum for the surgery and she also has other patients that have also brought Dr. Tennant's info. to her. The doctor who has had the greatest affect in my treatment is an intervention pain specialist that is also an anesthesiologist (like you mentioned). She also had one Tarlov cysts and also went to Dr. Feigenbaum. I had to stop seeing her because she doesn't accept any insurance. You pay cash when you come in and I just couldn't afford it anymore. I'm already paying more than I can really afford on about 10 different medical bills. I've racked up so many of them over the years I probably will never be able to pay them off in my lifetime. We just got all the blood tests done and they didn't show any inflammatory markers. I know that Dr. Tennant's info. says the tests may or may not show anything.I do have an MRI confirming the arachnoiditis though. I found out a few years ago that if you make sure to tell the MRI tech. to specifically look for something they will. You find out how the medical industry really works after so many years. I'm sure you've found some things out yourself. Like you I've had doctors that were rude and though I was a drug seeker as well. It just makes me furious. I now look at it like the doctors are working for me. If I have to see a new doctor I interview them rather than asking for their help. Sorry for getting off track there. When I see my primary care provider again I'm going to ask about the EDS testing and a referral to a rheumatologist.

I have been in terrible pain since 2003(since I fell on my kitchen floor) but in 2018 things really took a turn for the worse. The only thing I hadn't tried over the years was acupuncture so I made an appt. He put needles in all the way down my spine and the one he stuck in the sacral area on my right side hurt soooo bad! That night my bladder issues got worse and then the following week I went for one more appt. and that night I lost control of my bowels. I think the needle must have triggered the cysts to grow larger. I had 5 cysts (3 large ones) and together they were compressing all 5 of the sacral nerves. I had to sit like that for 3 years while I fought with my insurance co. to cover the surgery. I now have peripheral neuropathy, pudendal neuralgia, and jolts of nerve pain everywhere below the waist! I now am basically bedridden. I spend about 95% of my time on my couch. I can only sit, walk, and stand for a few minutes at a time. I had the Tarlov cyst surgery in Dec. so I'm 9 months into the 2 year recovery. They told me to expect some permanent nerve damage because of the amount of time the nerves were compressed. Now I just lay here praying that I will have some improvement. At this point I will gladly accept any improvement! One of the many weird symptoms that started right after acupuncture is dysphagia (trouble swallowing). I can swallow food no problem, it's the medicine that I have a hard time with. EVERY time I take my medicine 1 or 2 of them get stuck somewhere in my throat and the only way to get it down is to eat something. At the same time I started to get a cold sore over and over again when previously I would get one in the same place about every 5 years or so. Come to find out, the herpes simplex II virus resides in the sacral area so the frequency of the cold sores make sense now. I began snoring and I never did previously. I also began having thrush about every other month and on and off it feels like the area by the thyroid and in my throat right where it meets your chest would get inflamed and swollen. Also, somehow burning mouth syndrome ties into the swallowing difficulties. I have an endoscopy scheduled at the end of September and I'm scared to death that it's going to turn out to be cancer. The other weird thing that I didn't mention because I'm embarrassed about it is… I was just at the dentist a few days ago and I asked about it. I thought it was a sore and that he would just give me an antibiotic for it. I've had it for a few months. I had to keep rescheduling my appt. because I wasn't able to sit in the chair. He says it looks like a papilloma. I told him I was scared to death that it was cancer and he said it would be rare but there are some types that can lead to cancer. I had never heard of a papilloma before so of course I consulted Google when I got home (I know it's not a good idea). What I found is that it's technically an STD, like a genital wart!! I don't recall ever having crazy sex habits so don't think poorly of me! Now I'm still worried that it could be cancer and I have to wait until the end of September to find out. Now hearing that you have cancer it makes me wonder if having the Tarlov cysts or arachnoiditis might make you vulnerable to developing cancer??

If you don't mind me asking, would you share a little more about your cancer with me? Please pm me so I receive an email notification. If you have any questions or want to compare notes on anything please feel free! In the meantime, I hope your cancer surgery has gone well and that your recovery isn't too terrible for you! Take care!

Terri

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