My journey started four and a half years ago. I initially had chemo induced neuropathy and the pain/numbness/tingling progressed to just above the ankles in both legs and was just worsening. My oncologist sent me to a neurologist and he recommended a lumbar puncture to test for demyelination. That’s when the problems really started. 2 or 3 days post LP, my ears started ringing (and have never quit) along with a mild headache. This was in January 2019. I’ve have degenerative disc disease for many years. Since the initial LP my pain/numbness/tingling/cramping/etc… have progressed up through my calves, hamstrings/quads and glutes at a rapid pace. With the DDD, I have back pain. The leg issues and back pain were separate problems until early in 2023 when they both became one. That’s when the (I can’t get my bladder completely empty and not knowing when it’s time to take a dump) problem began. Between my PCP and myself, the research started then. During the progression I visited a pain clinic several times. 4 nerve blocks, 2 ablations and an epidural steroid injection only temporarily helped and actually made things worse. Our research revealed a probable arachnoiditis diagnosis. Most articles we read looked as if they interviewed me for the symptoms. Fast forward a few months and my doctor wants to do major lumbar surgery. Sadly, I live in a rural area and when I mention arachnoiditis they just laugh and say you’re on Google too much. I’m scheduled for major lumbar surgery before the holidays and I’m very concerned I’m making the wrong decision. If anyone has any information to share, I’d be grateful. I’m sorry the post turned into a novel.
@esouppain I am a spine surgery patient and my issue was a cervical spinal cord compression. Cord compression caused me issues where my bladder would not empty completely on it's own without me forcibly emptying it. I also had muscle spasms shifting my neck and when my physical therapist realigned my vertebrae correctly, my bladder functioned correctly again. This is how I knew that my spine was causing the bladder malfunction. A doctor told me that spinal cord compression can cause incontinence of bladder and bowel, so I was experiencing early symptoms and I did not want that to progress to a permanent problem. I also had an uneven gait and walked with a limp, except when my therapist would realign my spine, I walked normally until the next spams shifted the bones again. The symptoms you describe are all consistent with a spine problem.
May I ask what diagnosis you received from your surgeon? Did they show you the imaging and describe where the problem is? Did your surgeon also have imaging done of the cervical and thoracic spine to see if there were any issues or complications there? That is a good question to ask, because the surgeon needs to discover where the problem is coming from, and if there is more than one place generating the symptoms such as having a cervical cord compression also, then lumbar surgery would not solve the entire problem by missing part of it. That is just hypothetical, since I do not know your situation, but all the problem areas of the spine need to be defined and evaluated. It sounds like an urgent situation and your surgeon wants to decompress the nerves that are causing incontinence. Nerves will die after too much time and too much pressure and this can become a permanent disability. That being said, Spine surgery is a long recovery, and surgery at the lower end of the spine is a tougher recovery than the upper end because you are bearing most of your body weight there.
I was diagnosed with arachnoiditis following back surgery.
I have symptoms similar to yours.
The pain and neuropathy are chronic and life-altering.
I check Mayo Connect daily to learn more about the condition and how others cope.
If I can at all avoid it, I will never have any type of back surgery again.
@esouppain I am a spine surgery patient and my issue was a cervical spinal cord compression. Cord compression caused me issues where my bladder would not empty completely on it's own without me forcibly emptying it. I also had muscle spasms shifting my neck and when my physical therapist realigned my vertebrae correctly, my bladder functioned correctly again. This is how I knew that my spine was causing the bladder malfunction. A doctor told me that spinal cord compression can cause incontinence of bladder and bowel, so I was experiencing early symptoms and I did not want that to progress to a permanent problem. I also had an uneven gait and walked with a limp, except when my therapist would realign my spine, I walked normally until the next spams shifted the bones again. The symptoms you describe are all consistent with a spine problem.
May I ask what diagnosis you received from your surgeon? Did they show you the imaging and describe where the problem is? Did your surgeon also have imaging done of the cervical and thoracic spine to see if there were any issues or complications there? That is a good question to ask, because the surgeon needs to discover where the problem is coming from, and if there is more than one place generating the symptoms such as having a cervical cord compression also, then lumbar surgery would not solve the entire problem by missing part of it. That is just hypothetical, since I do not know your situation, but all the problem areas of the spine need to be defined and evaluated. It sounds like an urgent situation and your surgeon wants to decompress the nerves that are causing incontinence. Nerves will die after too much time and too much pressure and this can become a permanent disability. That being said, Spine surgery is a long recovery, and surgery at the lower end of the spine is a tougher recovery than the upper end because you are bearing most of your body weight there.
Thank you for your reply. My spinal issues are primarily lumbar in nature. The surgeon wants to an L3 laminectomy, bilateral L3-4 foraminal decompression and L3-4 TILF interbody arthrodesis with cage. Posterior approach with allograft and autograft.
The hospital has a good reputation for a rural facility (maybe an oxymoron) but arachnoiditis has been my primary concern recently and they won’t even discuss that possibility. My concern is this particular invasive surgery will do more harm than good due to excessive scar tissue. The myelogram I recently had showed severe thecal compression with extensive clumping of the nerve roots at L3-4 to the point of not being able to see the nerves below this level on imaging. I’m seriously considering waiting for a second opinion from the Cleveland Clinic that is scheduled for December before I make a decision about this surgery. Any thoughts or opinions?
Thank you for your reply. My spinal issues are primarily lumbar in nature. The surgeon wants to an L3 laminectomy, bilateral L3-4 foraminal decompression and L3-4 TILF interbody arthrodesis with cage. Posterior approach with allograft and autograft.
The hospital has a good reputation for a rural facility (maybe an oxymoron) but arachnoiditis has been my primary concern recently and they won’t even discuss that possibility. My concern is this particular invasive surgery will do more harm than good due to excessive scar tissue. The myelogram I recently had showed severe thecal compression with extensive clumping of the nerve roots at L3-4 to the point of not being able to see the nerves below this level on imaging. I’m seriously considering waiting for a second opinion from the Cleveland Clinic that is scheduled for December before I make a decision about this surgery. Any thoughts or opinions?
@esouppain Thank you for the detailed explanation. The solution the surgeon is proposing is suggesting that there is spinal cord compression and compression of the nerve roots between L3 and L4. Severe thecal sac compression indicates severe spinal cord compression. All of these findings are consistent with your symptoms. I don't know why this happened for you, but if it is a disc herniation where the contents of the jelly like nucleus inside the disc is extruded, that will cause inflammation and likely cause bone spurs to grow. Bone also remodels due to pressure, and when a disc herniates it is tipped one way or another and that changes the pressure on the "end plates" of the vertebra bone (the ends) also encouraging bone grown. If a disk herniates the material into the foramen (the space where nerve roots exit the spinal cord between vertebrae), it causes inflammation there and bone growth that will begin to compress the nerves. Another factor in spinal cord compression can come from a ligament on the back of the spine running the length of it that can become enlarged. Sometimes that is removed during surgery.
I do think second opinions are important because there is no going back after you have surgery. In saying that, you also have to consider what benefit you may receive from surgery with a good surgeon vs the risk you'll face of any complications that pertain to your situation. Another very important question to ask is what will happen if you do not do surgery? How will your present condition progress as you age? Will you become permanently incontinent or wheelchair bound? Will you require a paid caregiver to assist with daily living or end up in assisted living? How much will that cost? Paying for caregiver help is very expensive and it's hard work with a lot of burnout so many caregivers quit, and it is hard to find them. Caregivers do not do lifting, as that is a different category of more costly hired help. This I know because I was a caregiver for my parents with my dad at end stage heart disease who could no longer get in and out of bed or get to the bathroom. I had to use a Hoyer lift because I didn't have the strength to lift him, and this was also during the time that I needed spine surgery myself with a herniated cervical disc.
Cleveland Clinic is similar to Mayo and would be a good place for a second opinion. Get as many opinions as you need to make an informed decision. That may take time, and you are already in an urgent situation, so choose your surgeon wisely. Surgeons will not be able to tell you how much time you have before incontinence becomes permanent because the nerves have died from compression.
Cleveland Clinic does recognize arachnoiditis and here is a link to the information about it. It is important to let the surgeon be the expert and give you the diagnosis. It's very easy to read something online and believe that you have it because many conditions have overlapping symptoms, and it is the job of a specialist to figure out which condition is producing which symptom. It takes many years of training for that knowledge and carefully listening to the patient. https://my.clevelandclinic.org/health/diseases/12062-arachnoiditis
All surgery creates scar tissue. My cervical surgery created some scar tissue that will tighten up, and I periodically stretch it out with my hands. I do a technique I learned from my physical therapist called myofascial release. This is a way to stretch overly tight fascia that binds everything together in our bodies. It can help break up surgical scar tissue. I have another spot I work on on my shin because of surgery for a fractured ankle that created scar tissue that pulls through the joint. I couldn't figure out why my ankle was sometimes collapsing in pain until I figured out that link and stretched it out and it stopped that from happening. So there is hope. You may want to speak with a physical therapist who is an expert in myofascial release to ask what can be done after spine surgery. A consult with MFR specialist could answer questions and aid in your surgical decision. They also may know about various spine surgeons after treating patients post operatively.
I have had two back surgeries for decompression and fusion of L2-5.
My last CT scan with contrast showed arachnoiditis. Scheduled for an MRI in June with a follow up with surgeon in Ottawa, Canada early July. Will have to see…..
I’m frustrated, angry, disappointed that this is happening. Only symptom so far is back pain and cannot stand for any length of time.
I have had two back surgeries for decompression and fusion of L2-5.
My last CT scan with contrast showed arachnoiditis. Scheduled for an MRI in June with a follow up with surgeon in Ottawa, Canada early July. Will have to see…..
I’m frustrated, angry, disappointed that this is happening. Only symptom so far is back pain and cannot stand for any length of time.
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
Hey Joan I'm also in New zealand and have been struggling with arachnoiditis and it's progressing symptoms and pain since 2019 I'm also struggling to find any type of medical specialist that's aware of arachnoiditis and how it effects the body can I ask did you have your confirmation of arachnoiditis diagnosed in New Zealand and was this via your mri images or by syptyms and injury I hope my questions make sence I'm struggling alot with my ability to walk as my legs are so weak sore and neurological defaults restricting me I hope in some way you can guide me on who to go see in New zealand I hope you are well and appreciate your time
For all with arachnoiditis be sure to keep check on your EBV status. Mine has been positive for years and my doctor did nothing to help. I went to a hormone specialist and was put on ivermectin for a month and then twice a week. It has helped with the inflammation a lot. Dr Forest Tennant says there are several hormone panels to keep in check and he is so right.
I had back surgeries & my spinal fluid sac was punctured by mistake. I now have adhesive arachnoiditis. I take Cymbalta & it helps. When I walk, I have to stop frequently to rest. My hips/buttocks are numb to the touch. I function ok with 80 mg. Cymbalta. I find it does make me oversleep. Hope this helps.
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@esouppain I am a spine surgery patient and my issue was a cervical spinal cord compression. Cord compression caused me issues where my bladder would not empty completely on it's own without me forcibly emptying it. I also had muscle spasms shifting my neck and when my physical therapist realigned my vertebrae correctly, my bladder functioned correctly again. This is how I knew that my spine was causing the bladder malfunction. A doctor told me that spinal cord compression can cause incontinence of bladder and bowel, so I was experiencing early symptoms and I did not want that to progress to a permanent problem. I also had an uneven gait and walked with a limp, except when my therapist would realign my spine, I walked normally until the next spams shifted the bones again. The symptoms you describe are all consistent with a spine problem.
May I ask what diagnosis you received from your surgeon? Did they show you the imaging and describe where the problem is? Did your surgeon also have imaging done of the cervical and thoracic spine to see if there were any issues or complications there? That is a good question to ask, because the surgeon needs to discover where the problem is coming from, and if there is more than one place generating the symptoms such as having a cervical cord compression also, then lumbar surgery would not solve the entire problem by missing part of it. That is just hypothetical, since I do not know your situation, but all the problem areas of the spine need to be defined and evaluated. It sounds like an urgent situation and your surgeon wants to decompress the nerves that are causing incontinence. Nerves will die after too much time and too much pressure and this can become a permanent disability. That being said, Spine surgery is a long recovery, and surgery at the lower end of the spine is a tougher recovery than the upper end because you are bearing most of your body weight there.
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Helpful -
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3 ReactionsI was diagnosed with arachnoiditis following back surgery.
I have symptoms similar to yours.
The pain and neuropathy are chronic and life-altering.
I check Mayo Connect daily to learn more about the condition and how others cope.
If I can at all avoid it, I will never have any type of back surgery again.
-
Like -
Helpful -
Hug
3 ReactionsThank you for your reply. My spinal issues are primarily lumbar in nature. The surgeon wants to an L3 laminectomy, bilateral L3-4 foraminal decompression and L3-4 TILF interbody arthrodesis with cage. Posterior approach with allograft and autograft.
The hospital has a good reputation for a rural facility (maybe an oxymoron) but arachnoiditis has been my primary concern recently and they won’t even discuss that possibility. My concern is this particular invasive surgery will do more harm than good due to excessive scar tissue. The myelogram I recently had showed severe thecal compression with extensive clumping of the nerve roots at L3-4 to the point of not being able to see the nerves below this level on imaging. I’m seriously considering waiting for a second opinion from the Cleveland Clinic that is scheduled for December before I make a decision about this surgery. Any thoughts or opinions?
@esouppain Thank you for the detailed explanation. The solution the surgeon is proposing is suggesting that there is spinal cord compression and compression of the nerve roots between L3 and L4. Severe thecal sac compression indicates severe spinal cord compression. All of these findings are consistent with your symptoms. I don't know why this happened for you, but if it is a disc herniation where the contents of the jelly like nucleus inside the disc is extruded, that will cause inflammation and likely cause bone spurs to grow. Bone also remodels due to pressure, and when a disc herniates it is tipped one way or another and that changes the pressure on the "end plates" of the vertebra bone (the ends) also encouraging bone grown. If a disk herniates the material into the foramen (the space where nerve roots exit the spinal cord between vertebrae), it causes inflammation there and bone growth that will begin to compress the nerves. Another factor in spinal cord compression can come from a ligament on the back of the spine running the length of it that can become enlarged. Sometimes that is removed during surgery.
I do think second opinions are important because there is no going back after you have surgery. In saying that, you also have to consider what benefit you may receive from surgery with a good surgeon vs the risk you'll face of any complications that pertain to your situation. Another very important question to ask is what will happen if you do not do surgery? How will your present condition progress as you age? Will you become permanently incontinent or wheelchair bound? Will you require a paid caregiver to assist with daily living or end up in assisted living? How much will that cost? Paying for caregiver help is very expensive and it's hard work with a lot of burnout so many caregivers quit, and it is hard to find them. Caregivers do not do lifting, as that is a different category of more costly hired help. This I know because I was a caregiver for my parents with my dad at end stage heart disease who could no longer get in and out of bed or get to the bathroom. I had to use a Hoyer lift because I didn't have the strength to lift him, and this was also during the time that I needed spine surgery myself with a herniated cervical disc.
Cleveland Clinic is similar to Mayo and would be a good place for a second opinion. Get as many opinions as you need to make an informed decision. That may take time, and you are already in an urgent situation, so choose your surgeon wisely. Surgeons will not be able to tell you how much time you have before incontinence becomes permanent because the nerves have died from compression.
Cleveland Clinic does recognize arachnoiditis and here is a link to the information about it. It is important to let the surgeon be the expert and give you the diagnosis. It's very easy to read something online and believe that you have it because many conditions have overlapping symptoms, and it is the job of a specialist to figure out which condition is producing which symptom. It takes many years of training for that knowledge and carefully listening to the patient.
https://my.clevelandclinic.org/health/diseases/12062-arachnoiditis
All surgery creates scar tissue. My cervical surgery created some scar tissue that will tighten up, and I periodically stretch it out with my hands. I do a technique I learned from my physical therapist called myofascial release. This is a way to stretch overly tight fascia that binds everything together in our bodies. It can help break up surgical scar tissue. I have another spot I work on on my shin because of surgery for a fractured ankle that created scar tissue that pulls through the joint. I couldn't figure out why my ankle was sometimes collapsing in pain until I figured out that link and stretched it out and it stopped that from happening. So there is hope. You may want to speak with a physical therapist who is an expert in myofascial release to ask what can be done after spine surgery. A consult with MFR specialist could answer questions and aid in your surgical decision. They also may know about various spine surgeons after treating patients post operatively.
You can search for a MFR provider at this link: https://www.mfrtherapists.com/
Here is our discussion on Myofascial Release Therapy (MFR) :
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard of Myofascial Release Therapy before?
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3 ReactionsI have had two back surgeries for decompression and fusion of L2-5.
My last CT scan with contrast showed arachnoiditis. Scheduled for an MRI in June with a follow up with surgeon in Ottawa, Canada early July. Will have to see…..
I’m frustrated, angry, disappointed that this is happening. Only symptom so far is back pain and cannot stand for any length of time.
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Like -
Helpful -
Hug
1 Reaction@glassart - You have every right and justification to feel frustrated, angry, and disappointed!
You are doing the right thing in continuing to track the root causes of your pains and discomfort. Keep at it!
Hey Joan I'm also in New zealand and have been struggling with arachnoiditis and it's progressing symptoms and pain since 2019 I'm also struggling to find any type of medical specialist that's aware of arachnoiditis and how it effects the body can I ask did you have your confirmation of arachnoiditis diagnosed in New Zealand and was this via your mri images or by syptyms and injury I hope my questions make sence I'm struggling alot with my ability to walk as my legs are so weak sore and neurological defaults restricting me I hope in some way you can guide me on who to go see in New zealand I hope you are well and appreciate your time
For all with arachnoiditis be sure to keep check on your EBV status. Mine has been positive for years and my doctor did nothing to help. I went to a hormone specialist and was put on ivermectin for a month and then twice a week. It has helped with the inflammation a lot. Dr Forest Tennant says there are several hormone panels to keep in check and he is so right.
I had back surgeries & my spinal fluid sac was punctured by mistake. I now have adhesive arachnoiditis. I take Cymbalta & it helps. When I walk, I have to stop frequently to rest. My hips/buttocks are numb to the touch. I function ok with 80 mg. Cymbalta. I find it does make me oversleep. Hope this helps.