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?

@jenniferhunter

@jelizabeth I read your story and wanted to let you know that Myofascial release can help pundental nerve pain in some patients according to information on the MFR website and information from John Barnes, the creator of the MFR methods. We have a discussion with a lot of links and information and videos that show a therapist treating a patient. MFR can be a long process to work through and release layers of tight tissue and fascial scar tissue that can be caused by surgeries. I do a lot of MFR work because I have thoracic outlet syndrome and I am a spine surgery patient. Here is the link to the discussion. You may want to look through all the pages. The first pages have lots of information followed by discussions with Connect members who are interested in or have tried MFR with physical therapy. I don't know if having a pain pump would be a contraindication for MFR work because of the implanted connections, but that would be a question for a MFR therapist.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thank you Jennifer. I think pudendal nerve pain was another rabbit hole that one of my doctors sent me down. It looks like arachnoiditis is my problem, but I wasn't told this for seven years after the surgery that caused it. I only found out then, because I went out of state and had another back surgery for stenosis. The neurosurgeon didn't tell me before surgery, though, he waited until after it was done and then said the myelogram that I took to the first appointment showed nerve clumping and this means I have arachnoiditis. A pain pump was put in that doesn't help, which may be due to the fact that I developed a seroma. There are, now, very severe artifacts from the pump, a hip implant, and surgical hardware. I was sent for a purse string procedure to remove the seroma. My new PCP said the procedure would cause worse pain and the seroma would come back, and this is exactly what happened. Doctors have ruined my life. I live in constant pain and I don't know for sure what is causing the pain. (It could also be coming from Tarlov cysts because my first MRI reports said I had sacral Tarlov cysts) Someone told me they have my exact symptoms and that their pain is from Tarlov cysts. They had been to Dr. Feigenbaum.

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@jelizabeth

I hope you got three years of back pay! In my area all the doctors are in a tight circle or at least it seems this way. We only have Tennova and Covenant after all the different hospitals have merged, and the Southeast is the worst place to live for healthcare.

After having yet another lumbar surgery, the neurosurgeon said I have arachnoiditis. He was looking at the same myelogram that I took before the surgery was done. A pain pump was put in by my PM doctor and a seroma formed two weeks later. I had asked three or four doctors to do new MR imaging before the pump was put in, but the only one who ordered it was a neurologist whose office failed to order the test with neurography as the doctor had said. My PM doctor had rushed up the appmt. to put the pain pump in before the end of the year, because my insurance was changing to Blue Cross, which he did not accept. I didn't know that he was sending me to Chattanooga for another doctor to put the pump in, who did accept Blue Cross. I didn't want to cancel at the last minute, but if I had cancelled I wouldn't be sitting here with a pain pump that doesn't control the pain, and on top of that there is, now, too much artifact from the pain pump, hip implant, and surgeries to see what the problem is. Do you know, or does anyone know, if my insurance company will remove the pain pump if the PM doctor tells them it doesn't help and that I need imaging to find out what is causing the seroma and all the pain? It is possible that my pain could be coming from Tarlov cysts.

I hope you are feeling better. Thank you.

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I am so amazed with all this that I am reading and what you all are going through. No one seems to be any better with all this testing and pain pumps and experimental this and that. I am told my next step for another one of my issues is burning my pudendal nerves and a big NO to that. Right now I am treated like I have a disease at any Dr’s I think I have a red X by my name and a note or a code only Dr’s can read. I know a lot of medical stories are out there and we are a needle in a haystack but we are human beings and we deserve better than this. A neurosurgeon 5 yrs ago missed something in my back that should of been corrected during surgery and was not. I was in continued pain. Dr. said I would have to start over again from the beginning again to find out what was wrong. Well many injections and procedures and pain here I am. I could go on and on but I am tired right now. hope you are well! glad to have people listening and talking.

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@leigho55

I am so amazed with all this that I am reading and what you all are going through. No one seems to be any better with all this testing and pain pumps and experimental this and that. I am told my next step for another one of my issues is burning my pudendal nerves and a big NO to that. Right now I am treated like I have a disease at any Dr’s I think I have a red X by my name and a note or a code only Dr’s can read. I know a lot of medical stories are out there and we are a needle in a haystack but we are human beings and we deserve better than this. A neurosurgeon 5 yrs ago missed something in my back that should of been corrected during surgery and was not. I was in continued pain. Dr. said I would have to start over again from the beginning again to find out what was wrong. Well many injections and procedures and pain here I am. I could go on and on but I am tired right now. hope you are well! glad to have people listening and talking.

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I wouldn't agree to Pudendal nerve burning either. It's hit and miss, as you said, with this and that after they ruin us the first time.

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@feckert52

Yes, I am battling that now, and trying to get an appointment at Mayo in Jacksonville. They won't take appointments.

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Hi, @feckert52 – wanted to welcome you to Mayo Clinic Connect. Do you have a diagnosis of arachnoiditis? What symptoms have you been experiencing lately?

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Hi LIsa! Thanks for the reply. So, my original issue was a failed L5-S1 fusion, that led to nerve compression from bone growth. In the meantime I developed a lot of hip issues (bursitis, torn/detached labrum, arthritis). Also arthritis in my back. But after my SCS was revised, my neuro diagnosed the arachnoiditis. Original pain was in my left glute, but the hips intensified that as well as spreading it to the right, and adding severe groin pain. Just in the last six months or so – since my SCS – the lower back pain has continued into my tailbone. So whereas in the beginning I could endure sitting and only had severe pain walking/standing, its now there and intensifies with time whether I sit or stand so I just need to trade off. Other than meds, heat/cold help and I've been able to start PT again since they increased meds slightly (that was after cutting them in half). Sprinkle that with nerve pain in various areas of my left foot and leg caused by the back surgeries and a rod in my left tibia which I broke right after my first spine surgery that damaged nerves and left me with slight drop foot. Misjudged a stair at the top of a VERY long staircase (luckily carpeted or I wouldn't even be here). I finally got tired of the rep reprogramming my SCS with no results, so asked for a new rep. Its been five days and I think its better, but I don't expect that the SCS is ever going to make me painless. My fear is that what I've read about arachnoiditis indicates it won't get better ever, and that it could likely get worse. Too young to observe life at almost 67 and still need to work.
My husband pushed for me to see someone at Mayo as the doctors in Greenville are not at that level, but they turned me down in Jacksonville. Any advice/feedback is very welcome!!!

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@leigho55

I am so amazed with all this that I am reading and what you all are going through. No one seems to be any better with all this testing and pain pumps and experimental this and that. I am told my next step for another one of my issues is burning my pudendal nerves and a big NO to that. Right now I am treated like I have a disease at any Dr’s I think I have a red X by my name and a note or a code only Dr’s can read. I know a lot of medical stories are out there and we are a needle in a haystack but we are human beings and we deserve better than this. A neurosurgeon 5 yrs ago missed something in my back that should of been corrected during surgery and was not. I was in continued pain. Dr. said I would have to start over again from the beginning again to find out what was wrong. Well many injections and procedures and pain here I am. I could go on and on but I am tired right now. hope you are well! glad to have people listening and talking.

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Hi, @leigho55 – you mentioned that you would not want to do the pudendal nerve burning. Were you given other potential treatment options?

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@jelizabeth

Very sorry for the long post, but I foolishly had a L5-S1 laminectomy, in 2012, by an unskilled ortho. surgeon in my small town. After the surgery I had extreme sacroanal pain and lower extremity weakness and atrophy that has gradually continued and is now severe. PCP's and spine doctors who ordered imaging did not discuss important information on the reports that said I had edema of the lower spine, sacrum, and paraspinal muscles, even though they knew I was having extreme pain, and neurological decline. Some of them went on and on about the dangers of spine surgeries as though it was my fault that I was having major problems. The neurologists I saw did not do appropriate blood work that would have shown inflammation, do a nerve biopsy, or examine me. It was all about protecting the surgeon. I was told by a pain mgmt. doctor and a neurosurgeon, in 2016, that I had severe L3-L4 stenosis and that I needed surgery. I went to another neurosurgeon for a second opinion. He would not operate because of the previous surgery. He was rude and did not want to be involved with someone like me with so many problems. He sent me to an interventional pain management doctor, who worked at the same facility. This doctor wanted to immediately put in a spinal cord stimulator. He was arrogant and became angry when I told him that my pain management doctor had advised me to have a pain pump evaluation and not get a spinal cord stimulator, because I had clumped nerve roots, and that the only reason I had not already done this was because my pelvis tilted after the laminectomy and I had to have hip replacement surgery, which was done wrong, and that it took almost two years to find an orthopedic surgeon to appropriately diagnose the condition and do a revision surgery. The arrogant doctor said he would order a myelogram, which surprised me because I had asked a doctor in my small town to order a myelogram after the surgery, but he refused and said this was a dangerous test. I thought the reason for this was that he was protecting the ortho. surgeon that had performed my surgery. None of the spine surgeons told me that I had clumped nerve roots, but one had said I "probably" had arachnoiditis. He ended the appointment before I could ask questions. The myelogram report said there was nerve root clumping. I don't suppose the arrogant interventional pain mgmt. doctor was expecting this. My follow up was with a nurse practitioner instead of him. An ER doctor was kind enough to tell me where I could go to find a good neurosurgeon, four hours away, to get me away from the biasedness I was facing. I went to Charlotte and had surgery for stenosis, because they said I would have more serious neurological decline and possibly be in a wheelchair if I waited any longer. After the surgery I got my records. They had documented that I have chronic progressive cauda equina syndrome based on pelvic MR imaging that I brought to the appointment. At my last appointment there I saw the chief of neurosurgery, who said I also have arachnoiditis. It is sad that all of the spine doctors in my area, and in nearby areas, declined to mention cauda equina syndrome and arachnoiditis, even though anyone could visibly see the severe abnormal atrophy in my legs. I kept wondering why MRI reports did not mention the problems. Last year a radiologist said all of the findings about my spine condition would not be in the report. He said only the ones pertaining to the diagnosis codes on the order would be included. This means that if doctors don't want you to find out about what a surgeon did, during a surgery, you have no chance of finding out, unless you can find another doctor to put the necessary diagnosis codes on the order. Sorry to go on and on, but my health was taken away by a surgeon incapable of performing a decent surgery. I have endured severely uncontrolled pain for seven years now and been repeatedly lied to and demeaned by the medical field. Electronic Health Records are not to protect the patient. You find this out when you have an iatrogenic injury.

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Panopaque dye (oil based): The country of Sweden stopped using this particular dye in 1948 because they knew it caused Arachnoiditis. American physicians were still using it in 1977. Doctors gave me FOUR Mylograms using this oil based dye in 1976. Additional, I was given four more Mylogram injections which were supposed to be “water soluble” type dye. I was NEVER warned about the possibility of having Arachnoiditis from any of these injections. Had L-4 disc removed with fusion from L-4 through S-1 in 1977. 1981 I was diagnosed with Arachnoiditis and have been in constant pain sense. I currently have SEVERE MULTIPLE SPINAL PROBLEMS which is causing problems including MORE pain, numbness and loss of use of some body functions. This will continue to get worse. Doctors failed to address my problems early on. I am 75 years of age. I lost all of my daily activities that I once enjoyed. Nothing to look forward too except getting worse. Not all doctors are bad. However, the bad ones give the good ones a bad name!!!!

ARACHNOIDITIS IS A PROGRESSIVE, IRREVERSIBLE AND NON OPERABLE DISEASE that most doctors refuse to address.

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@corners

Panopaque dye (oil based): The country of Sweden stopped using this particular dye in 1948 because they knew it caused Arachnoiditis. American physicians were still using it in 1977. Doctors gave me FOUR Mylograms using this oil based dye in 1976. Additional, I was given four more Mylogram injections which were supposed to be “water soluble” type dye. I was NEVER warned about the possibility of having Arachnoiditis from any of these injections. Had L-4 disc removed with fusion from L-4 through S-1 in 1977. 1981 I was diagnosed with Arachnoiditis and have been in constant pain sense. I currently have SEVERE MULTIPLE SPINAL PROBLEMS which is causing problems including MORE pain, numbness and loss of use of some body functions. This will continue to get worse. Doctors failed to address my problems early on. I am 75 years of age. I lost all of my daily activities that I once enjoyed. Nothing to look forward too except getting worse. Not all doctors are bad. However, the bad ones give the good ones a bad name!!!!

ARACHNOIDITIS IS A PROGRESSIVE, IRREVERSIBLE AND NON OPERABLE DISEASE that most doctors refuse to address.

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Thank you for sharing your story – I am so sorry. I am also very afraid of what the future will bring for me at 66. I am working on being seen by Mayo because my husband thinks every problem has a solution. I can still function a lot of the time but that is only with pain meds and I am terrified every month that I will go to get my script and be told I can no longer have them…

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@jelizabeth

Very sorry for the long post, but I foolishly had a L5-S1 laminectomy, in 2012, by an unskilled ortho. surgeon in my small town. After the surgery I had extreme sacroanal pain and lower extremity weakness and atrophy that has gradually continued and is now severe. PCP's and spine doctors who ordered imaging did not discuss important information on the reports that said I had edema of the lower spine, sacrum, and paraspinal muscles, even though they knew I was having extreme pain, and neurological decline. Some of them went on and on about the dangers of spine surgeries as though it was my fault that I was having major problems. The neurologists I saw did not do appropriate blood work that would have shown inflammation, do a nerve biopsy, or examine me. It was all about protecting the surgeon. I was told by a pain mgmt. doctor and a neurosurgeon, in 2016, that I had severe L3-L4 stenosis and that I needed surgery. I went to another neurosurgeon for a second opinion. He would not operate because of the previous surgery. He was rude and did not want to be involved with someone like me with so many problems. He sent me to an interventional pain management doctor, who worked at the same facility. This doctor wanted to immediately put in a spinal cord stimulator. He was arrogant and became angry when I told him that my pain management doctor had advised me to have a pain pump evaluation and not get a spinal cord stimulator, because I had clumped nerve roots, and that the only reason I had not already done this was because my pelvis tilted after the laminectomy and I had to have hip replacement surgery, which was done wrong, and that it took almost two years to find an orthopedic surgeon to appropriately diagnose the condition and do a revision surgery. The arrogant doctor said he would order a myelogram, which surprised me because I had asked a doctor in my small town to order a myelogram after the surgery, but he refused and said this was a dangerous test. I thought the reason for this was that he was protecting the ortho. surgeon that had performed my surgery. None of the spine surgeons told me that I had clumped nerve roots, but one had said I "probably" had arachnoiditis. He ended the appointment before I could ask questions. The myelogram report said there was nerve root clumping. I don't suppose the arrogant interventional pain mgmt. doctor was expecting this. My follow up was with a nurse practitioner instead of him. An ER doctor was kind enough to tell me where I could go to find a good neurosurgeon, four hours away, to get me away from the biasedness I was facing. I went to Charlotte and had surgery for stenosis, because they said I would have more serious neurological decline and possibly be in a wheelchair if I waited any longer. After the surgery I got my records. They had documented that I have chronic progressive cauda equina syndrome based on pelvic MR imaging that I brought to the appointment. At my last appointment there I saw the chief of neurosurgery, who said I also have arachnoiditis. It is sad that all of the spine doctors in my area, and in nearby areas, declined to mention cauda equina syndrome and arachnoiditis, even though anyone could visibly see the severe abnormal atrophy in my legs. I kept wondering why MRI reports did not mention the problems. Last year a radiologist said all of the findings about my spine condition would not be in the report. He said only the ones pertaining to the diagnosis codes on the order would be included. This means that if doctors don't want you to find out about what a surgeon did, during a surgery, you have no chance of finding out, unless you can find another doctor to put the necessary diagnosis codes on the order. Sorry to go on and on, but my health was taken away by a surgeon incapable of performing a decent surgery. I have endured severely uncontrolled pain for seven years now and been repeatedly lied to and demeaned by the medical field. Electronic Health Records are not to protect the patient. You find this out when you have an iatrogenic injury.

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These preventable horror stories are the worst.
I'm so sorry.

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Yes. I had spinal surgery (laminectomy and fusion) of the area you mention, in 1973. Had pain immediately and followed instructions to "simply do PT." Did years of it at home, including treadmill use daily. Pain has continued, to the point of being unable at times to walk, even after 5 years of aquatic therapy. Cauda Equina issues were finally diagnosed by my GP around 2009, and then by a specialist in Arachnoiditis, was diagnosed with ARC in 2012. Been on Hydrocodone and Gabapentin ever since, just to LIVE. Have responded in Mayo Connect about symptoms and horrible pain throughout my back and legs.

In my case, because at that time there were no MRI´s (early 1970´s), the only diagnostic tool was a myelogram with contrast material, which was later on (in that decade) taken off the market (Pantopaque or Myodil). So, to this day remaining Pantopaque shows up in Xrays and in bone-density tests. At the time manufacturers of Pantopaque warned physicians that if any Pantopaque was left behind they HAD to take it out! Ha. I heard later from neurologist friend that "no one did, because it would mean another surgery." An FDA whistleblower to Congress complained of Pantopaque dangers…tests on dogs showed paralysis, etc., etc., etc. Too late for me and thousands of others who were left with this Pantopaque contrast material, causing Arachnoiditis. I don´t blame anyone, but I do know that thousands were continued to be affected by this material because it wasn´t REALLY taken off the market at the time it was ordered. And I was just one of those. Thousands continued to be affected and MIS-DIAGNOSED.

Life changed forever for me and for thousands of others, and physicians refuse to admit to these problems—won´t even see you if the radiology reports indicate "remaining Pantopaque." Have spent years researching all of this, and took early retirement due to the pain, though did volunteer unpaid work (international social work) for another 10 years afterwards because it was my love. Now can´t even do that because of the effects of pain-killers, and just this month realize I cannot drive anymore. It has totally cut me off ordinary life with friends and family, and the work I love.

Once ARC progressed found Dr. Tennant in California, and his recommendation was that I not travel anymore. No more sitting in planes or cars, so faraway family and friends are off-limits now too. Used to LOVE to travel and drive places, but pain is too much and I am trying to comply with Dr. T´s instructions so as to not make matters worse. Pain killers help but are taking their toll in cognitive skills.

However, headed to Mayo next week, a five hour drive, which my husband will do while I lie in the back of the car. One adapts to everything, I suppose. Latest diagnosis seems to be Normal Pressure Hydrocephalus, requiring a spinal tap. My gut feel is that Arachnoiditis has progressed to NPH, because there seems to be obstruction of Cerebral Spinal Fluid in the brain ventricles (per years of MRI´s). Hope to know what Mayo assessment shows. And whether there is any hope for a brain shunt. Not everyone is a candidate….and I have a gut feel that in my case, with ARC clearly still in the spine, as well as DDD and arthritis due to age, I have to be realistic. It is what it is, but I want to know for sure. One dear physiatrist once told me: Joan, just make peace with it (meaning ARC). Now, a shunt might provide a chance to drain excess Cerebral Spinal Fluid. But, if not, I will continue to Make Peace With It, Dr. S. You are so right. (She was an MD also dealing with ARC who moved away–maybe to retire).

I know this is an excessively long message about ARC. It is meant only to say that, "Make Peace With It" may be the only solution. And take all the pain meds offered. All the best to all ARC sufferers. We were dealt really bad cards, so all we can do is support each other along the way. Big hug to all….

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@lisalucier

Hi, @leigho55 – you mentioned that you would not want to do the pudendal nerve burning. Were you given other potential treatment options?

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Hi @lisalucier – No I will not do the nerve burning. I have been reading horrible stories about it and I will not do it. I do not see a good outcome from anyone having it done. I will not experiment with this. My pudendal nerve was injured during a procedure and my life will never be the same because of this incident. I will not have anymore pain experimented on me. I have all kinds of other uterine/pelvic/bowel issues I have to deal with since then. I could go on and on but I will leave it at that. I do enjoy reading all the comments though. Very informative. I am so sorry so many people are suffering also.

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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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Yes I have

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