Anyone been diagnosed with arachnoiditis after spine surgery?

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....

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

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

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?

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?