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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@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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This so sounds like my story. Same surgery but I had fusion from T5 to S1. My doc said I can do no more for you. Just found out by new imaging this week and don't know where to turn for honest answers

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Hello @larauen and welcome to Mayo Clinic Connect. I understand that you can relate to @jelizabeth with regard to having had the same surgery from T5 to S1 and that you are now looking for where you can turn for honest answers in your continuing care.

Members like @johnbishop and @jenniferhunter are both extremely good resources who might be able to share their experience and perspective.

When was your surgery?

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@larauen

This so sounds like my story. Same surgery but I had fusion from T5 to S1. My doc said I can do no more for you. Just found out by new imaging this week and don't know where to turn for honest answers

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Hello @larauen, I would like to add my welcome to Connect along with @amandajro and other members. I'm not sure if this is helpful information but this seems like it may be related to your symptoms.

Delayed symptomatic spinal adhesive arachnoiditis after surgery for thoracolumbar flexion-distraction injury: A case report:
https://www.sciencedirect.com/science/article/pii/S2210261220306404

@jenniferhunter has some experience and may be able to offer some suggestions for you for finding some help. I'm not sure if it's an option for you, but Mayo Clinic would be a great choice for a second opinion and treatment. If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Looking for a Dr who knows something about this disease in the Cincinnati area? Was recently dx with tesla MRI.

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@johnbishop

Hello @larauen, I would like to add my welcome to Connect along with @amandajro and other members. I'm not sure if this is helpful information but this seems like it may be related to your symptoms.

Delayed symptomatic spinal adhesive arachnoiditis after surgery for thoracolumbar flexion-distraction injury: A case report:
https://www.sciencedirect.com/science/article/pii/S2210261220306404

@jenniferhunter has some experience and may be able to offer some suggestions for you for finding some help. I'm not sure if it's an option for you, but Mayo Clinic would be a great choice for a second opinion and treatment. If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Mayo Neurology and General Internal Medicine recently declined to see me. Very disappointed with this system. Doctor in CA said she had been hearing a lot of this from patients with arachnoiditis.

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@johnbishop

Hello @larauen, I would like to add my welcome to Connect along with @amandajro and other members. I'm not sure if this is helpful information but this seems like it may be related to your symptoms.

Delayed symptomatic spinal adhesive arachnoiditis after surgery for thoracolumbar flexion-distraction injury: A case report:
https://www.sciencedirect.com/science/article/pii/S2210261220306404

@jenniferhunter has some experience and may be able to offer some suggestions for you for finding some help. I'm not sure if it's an option for you, but Mayo Clinic would be a great choice for a second opinion and treatment. If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Mayo in Rochester Neurology recently declined to see me. Maybe Johns Hopkins or Mass. General would be a better option. What do you think?

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@joanmahon

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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Mayo in Rochester Neurology declined to see me for arachnoiditis caused by spine surgery in 2012.

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@larauen

This so sounds like my story. Same surgery but I had fusion from T5 to S1. My doc said I can do no more for you. Just found out by new imaging this week and don't know where to turn for honest answers

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Know what you mean. I keep getting worse….pain killers have no effect anymore. Mayo Neurology in Rochester recently declined to see me.

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@jelizabeth

Mayo in Rochester Neurology recently declined to see me. Maybe Johns Hopkins or Mass. General would be a better option. What do you think?

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@jelizabeth There are a lot of different reasons for not being able to get an appointment at Mayo or probably any other hospital. I wouldn't give up trying though. Arachnoiditis from what I've read is very difficult to diagnose and treat. Did Rochester Mayo give any reasons for denying an appointment? Mayo Clinic neurology& neurosurgery is rated in the top 10 for 2020 and Johns Hopkins is number 1 according to Top 20 hospitals for neurology & neurosurgery, by US News & World Report: https://www.beckersspine.com/spine/item/49651-top-20-hospitals-for-neurology-neurosurgery-by-us-news-world-report.html

Here's some information you may find helpful for learning more about the condition – Arachnoiditis Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Arachnoiditis-Information-Page

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I was diagnosed with arachnoiditis several years ago. My disease seems to be getting worse. Already on small dosage of pain medication also have a stimulator. See a physician now but know he does not want to increase my medication. Don't know what to do?

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Hello @pjf and welcome to Mayo Clinic Connect. I am sorry to hear that your disease seems to be getting worse. I can see that you are interested in feedback from other members with experience with arachnoiditis. For that reason, I will bring in @larauen and @jelizabeth who have recently commented in this discussion to they might be able to provide additional support.

What pain medicine are you taking and how is your stimulator working?

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@amandajro

Hello @pjf and welcome to Mayo Clinic Connect. I am sorry to hear that your disease seems to be getting worse. I can see that you are interested in feedback from other members with experience with arachnoiditis. For that reason, I will bring in @larauen and @jelizabeth who have recently commented in this discussion to they might be able to provide additional support.

What pain medicine are you taking and how is your stimulator working?

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Good morning. I now take 10 mg oxycodone 2x/day and 5 mg methadone 2x/day. Unfortunately, my stimulator does not work for the pain any longer. I have discussed this with my pain management physician and after reviewing the X-ray of the implant agrees it should be removed. The representative from the company (St Jude Electronics) has tried to adjust it several times and is not able to get it to the pain site. Thank you. I would appreciate any support I can get.

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