ESI's and Arachnoiditis

I am a sufferer of adhesive arachnoiditis. Do many of you that have had ESI's done for lower back pain know of this debilitating disease?
Adhesive Arachnoiditis is an incurable inflammatory condition affecting the middle (arachnoid) layer of the meninges (which are the membranes surrounding the spinal cord).
Did you know that arachnoiditis is a risk of having an ESI? I never knew that before I had mine nor had I ever read anything on the paperwork I had to sign for consent to the procedure. And above all, my pm doc never said a word that it could happen!
Please do research on this disease if you are planning to have an ESI done by your PM doc! I beg you to consider the risks vs. the possible benefit because that is what I thought I did...... I was wrong!

I think she's referring to an Epidural Steroid Injection

ESI stands for Epidural Steroid Injection.
Arachnoiditis is caused by an inflammation of the arachnoid lining—one of the 3 linings that surround the spinal cord. This inflammation causes constant irritation, scarring, and binding of nerve roots and blood vessels. The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:
Tingling, numbness, or weakness in the legs
Bizarre sensations such as insects crawling on the skin or water trickling down the leg
Severe shooting pain (which some liken to an electric shock sensation)
Muscle cramps, spasms, and uncontrollable twitching
Bladder, bowel, and/or sexual dysfunction

If the disease progresses, symptoms may become more severe. This disorder can be very debilitating, as the pain is constant and intractable. Most people with arachnoiditis are unable to work and have significant disability.

During an ESI, if the medication accidentally enters the cerebral spinal fluid in the lower back (dura), the medication can cause the clumping or stickiness of the nerve roots. This is an off label use of the steroid medication (Kenalog), it is not an FDA approved use injecting it into the epidural space, yet my pm doc still injected the drugs into my lower back. Once the dura is punctured the damage is done!

This awful disease is latrogenic, caused by the manner or treatment of a doctor. Epidural steroid injections are now considered to be one of the causes of arachnoiditis, while some doctors feel that back surgery also can be a cause.
The worst part of all this is that this disease is not recognized by a wide part of the medical community. A lot of radiologists don't even report arachnoiditis as a finding on an MRI's (some are not familiar with it at all). I had to take my MRI disc and report to other doctors for review and sure enough, I had it. All of the PM docs that I have seen know of the disease including my current one. He knows that no needle will ever go into my spine again thank you! Read up on it on the internet and you will read of horror stories of people that had ESI's or back surgery and have finally been diagnosed with the disease. See how long it took, and now they know one of the biggest sources of their pain. It's really sad because I had no clue for 5 years, I had too much trust in the medical community and took a lot for granted.
For those interested I will post my story on how and what happened.
Be well!

Hi Pam, I have had adhesive Arachnoiditis for 26 years and was only told 3 years ago. First showed on MRI then but I too just trusted my neurosurgeon and when he said it was ok I believed him and I had never even heard of it which was quite odd considering my education. But like you I know now that there are very few drs that know about it and if they do it's very little or they won't say and after all who would want to give this dreary fateful diagnosis with no hope to a patient? I'm empty sac Stage now and my cauda equina nerves are unable to even be visialized on MRI with contrast from L1 caudally bc all of them are " one" with dura now. I have read, studied, reaearched all I can find for the last 3 years like a full time job but as you know there's no treatment. Been to many spine specialists neurosurgeons and they offer SCS or pain pump but can do nothing else. I will never know why or when I got it bc I had pantopaque myelogram, epidural anesthesia, multiple lumbar surgeries with CSF leaks and graft repairs & had ESI's over 30 times. I am here and I understand the pain beyond comprehension and what neuropathy symptoms are like when cauda equina dying and we have to feel it. It has destroyed my sympathetic and parasympathetic nervous systems as well but I can still walk, drive, pee etc all normally! Lol if I can help or answer questions I am here anytime. I'm so very sorry that you have this and commend your efforts to bring awareness bc as arachniacs we know that this disorder thought rare really isn't bc > 100,000 have been diagnosed. God Bless you!

Thanks Mckaren for sharing your story about arachnoiditis. I know I am not alone, but sometimes it just infuriates me on how this became to be and how I was kept in the dark about it. This is why I want to "get the word out", people need to know about this disease and how they were at risk for it. I was so relieved to finally understand why I felt the way I did - the diagnosis, yet so devastated! As I said before, I feel that it was a "backdoor" effect because at no time, verbally or in writing, was this disease ever talked about as a due effect or risk of any of the procedures/surgery that I had done. And then of course there is the challenge of finding someone to make the diagnosis, isn't it just crazy that a even a radiologist doesn't make mention of it either, until! Like you Mckaren, I too have an empty sac or open sac at L4-L5. My first pain doctor showed me on my MRI what it looked like and I just started crying. My worst fear right now is that this disease has not "plateaued" yet, another words it hasn't gotten as bad as its gonna be. Dr. Burton who is the so-called godfather of arachnoiditis explains this very well. If anyone is interested in reading about arachnoiditis, his research and writings are full of information in lay terms so that you can understand the disease and how it is diagnosed.
It is my prayer that someday they will find a cure for this horrible yet silent disease. Until then I can only spread the word and hope that one person will have an understanding of what has happened to them and why. That they will finally have a answer for all of the questions and a reason for all the symptoms they are having.
Take care and here's to less pain!

Hello purple lynx. Welcome to the forum.

This thread is over a year old and it may be that no one from then will be replying. You might want to click on their user name and see if perhaps they have their e-mail address available.

Meanwhile, one or two may still be around and see that you've posted your own thread and they may very well respond to that.

Even if folks have different conditions, we understand the commonality of pain. You are sure to find support here.