Epidural to Relieve Arachnoiditis Pain

I had an epidural a couple of weeks ago. It was no big deal but I had been terrified too. Seems to have helped!

Janet, I have had more epidurals for my back pain than you can shake a stick at. Most have not provided any relief. But the procedure, as a rule, is no big deal. I have had epiduras in out-patient surgery centers and right in the back of the Doc's office. Had them in my L5-S1 and even in the sacral space, They have not helped me. However, many peope do get relief, usually temporary, from them. Worth a try.

So good to hear that you had some relief! I think I'll move ahead with getting the epidural. Thanks for your feedback.

Everyone’s body is different and every doctor is different. I have had about 20 epidural and blocks in my back over the years and never got any relief. I also have 5 levels of scar tissue in the lower part of the spinal canal. Because I never got any relief I will not take any more. I have had them from at least 6 different doctors so it just will not help me but I know people who get blocks that it helps on a regular basis. The block was not a problem for me. I just want you to do your research before you start getting them. Look at the Mayo Clinic, Cleveland Clinic and Arachnoiditis Hope web pages for answers. Look for research for your disease and then make your decision. It is your body and you need to make the best decision for you. Blocks are done every day all over the world and people get relief. You need to find help for your pain. Praying you find relief.

One of the worst things you can do when you already have Arachnoiditis, is continue to get invasive spinal procedures, you will 100% get worse. I know from experience, I got a labor epidural before I knew my diagnosis (took 20 years to get one 😓), and my condition progressed, LOT, and it happened immediately. I was never able to return to work, I was only 34. I had a brand new baby, unplanned cesarean, ended up with postpartum preeclampsia, and I was dealing with a significant increase in my already severe, constant pain. Had I known, I would have NEVER let anyone stuck anything in my spine ever again.

Because these procedures cause neuroinflammation, especially the chemicals in ESI’s, since they’re toxic to your CSF, it will cause your condition to get worse, even if it had plateaued for quite some time like mine had. Every single person I know with Arachnoiditis or Adhesive Arachnoiditis who continued receiving invasive spinal injections or other invasive spinal procedures, ended up getting worse, and all regretted their decision. If a doctor is recommending this while also aware of your Arachnoiditis, does not know what they are talking about, and really need to educate themselves about this disease, it’s acceptable treatments, as well as treatments that are harmful and should be avoided at all costs. Giving this advice to an arcs patient is extremely dangerous, and they could really cause a patient a lot of harm. I would recommend finding a medical pain management doctor instead of an interventional one, as they don’t perform invasive treatments, and therefore won’t try and push them on you, or threaten to withhold medication if you don’t comply with their recommendation. Interventional PM docs are usually anesthesiologists, while medical PM docs focus on medication as well as other non invasive treatments.

You can also test your current doctor by asking if the epidurals steroid injections are FDA approved… they are not, but many shady doctors will just lie and say they are. They’re not approved because they’re dangerous, and especially so if you already have Arachnoiditis.

Please do not get the injections. I don’t want to see someone who’s already suffering so much, have to go through something avoidable like this.. along with getting significantly worse, you’ll regret the decision for the rest of your life, and sadly, you can’t go back.

Just because you didn’t experience any severe complications doesn’t mean that they don’t happen, and quite often actually. I was given an epidural steroid injection. When I was only 16, I shouldn’t have even been offered it, because what I had was so minor. She ended up puncturing the Dura and caused trauma to the layers around my spinal cord, I felt electric lightning bolt of pain, and that pain never stopped. It’s been 25 years of constant, severe debilitating pain. She gave me adhesive arachnoiditis that day, and I lost my entire life. These injections aren’t even curative, they’re just like a very , very risky Band-Aid… And why would you want to risk something so catastrophic, just for a few weeks of pain relief? These injections are not FDI approved for a reason, because the medication is toxic to your CSF, and is very dangerous to use in this way. But doctors continue to administer them, because they are very very lucrative, and in the end, it always comes down to money and greed.

I’m not saying that this exact thing is going to happen to the OP, but I am saying that it is possible. When you tell someone that a procedure is safe, just based on your own experience, you were doing a disservice to that person because everyone’s bodies react differently to medication’s and procedures. That’s what people don’t get when they ask others for advice and that advice is just anecdotal, that does no one any good, because you’re only describing your experience, which has nothing to do with the person asking the question. This person should be given all of the information, all of the risks, including the very severe, very catastrophic ones, and be able to weigh that themselves the risks against the benefit, and make their own medical decision. But just telling them to go for it based on the fact that you did it and you were OK is really terrible advice

Dr. Tennant strongly advises not to have an Epidural when you have Adhesive Arachnoiditis. An Epidural for child birth is often what causes Arachnoiditis.

@labgirl @sophie46 @sdfoxmama
I wanted to find some medical literature for all of you about arachnoiditis and risks associated with injecting steroids in the spine. Your medical specialist should be the one to advise your decisions about any medical procedure such as this, and there should be a discussion about risks and an informed consent before any procedure.

First, let me say that I do not have arachnoiditis, but I did have an adverse reaction to a cervical epidural injection that caused me to have paraesthesia stabbing electric pains that went on for about 6 weeks and these started immediately during the injection while I was on the table. The anesthesiologist did keep calling me to ask how I was doing in the following weeks.

I also had an allergic type reaction when I received a vaccination for Covid, and the ingredients of the vaccine contained polyethylene glycol (PEG) which can cause allergic reactions in some people. I suspected that an epidural injection may also have polyethylene glycol, and this was confirmed in the literature that I found. It seems reasonable to conclude that my issues may have been caused by PEG injected into my body. It is a common ingredient as a binder in antibiotic ointments and prep solutions for colonoscopies and some people are just sensitive to it. I declined any further spinal steroid injections when surgeons asked because of my first experience.

The other reasons cited for a causal relationship with developing arachnoiditis from a spine injection can be infection. That is a risk any time the skin is pierced or if there is any contamination of what is injected.

Chemicals used for skin sterilization such as chlorhexidine are used prior to spine injection. Chlorhexidine is the main ingredient prescribed in an oral rinse for dental and oral surgery and is the ingredient in an antiseptic body wash that patients are recommended to use before surgical procedures. The suggestion in the literature is that if a significant amount of this enters the body with an injection, it may be a causative factor.

There is also a suggestion that some people are reactive to the injected material and others are not, and that the space inside the spinal canal and the outside of the dural cover of the spine and not absolutely separate, so that an injection of solutions can migrate between them.

Personally, I know my body is reactive to a lot of things such as metals in dental work and the titanium plates I had after an ankle fracture. I have lots of seasonal allergies and food allergy issues. All of that adds up and causes allergy induced inflammation. I am just one of those people who are chemically sensitive to things in my environment.

Here is the literature I wanted to reference for 3 sources and some extracted quotes.

Asian Spine J. 2013 Dec; 7(4): 355–358.
Published online 2013 Nov 28. doi: 10.4184/asj.2013.7.4.355
PMCID: PMC3863664
PMID: 24353855
Arachnoiditis Following Caudal Epidural Injections for the Lumbo-Sacral Radicular Pain

"Adhesive arachnoiditis may result from the solvent of depo-steroid polyethylene glycol [1]. Infections associated with the contaminated drugs prepared at the compounding pharmacies have been reported, following the epidural injections in the out-patient pain management clinics [7]. “

“Meningitis and epidural abscess have been reported following the epidural injections [6]. Arachnoiditis is very rare, especially following a caudal epidural injection. Adhesive arachnoiditis may result from the solvent of depo-steroid polyethylene glycol [1]. Infections associated with the contaminated drugs prepared at the compounding pharmacies have been reported, following the epidural injections in the out-patient pain management clinics [7]. “

J Pain Res. 2019; 12: 513–518.
Published online 2019 Jan 29. doi: 10.2147/JPR.S192706
PMCID: PMC6357879
PMID: 30774420
Adhesive arachnoiditis following lumbar epidural steroid injections: a report of two cases and review of the literature

“Arachnoiditis is primarily a radiological diagnosis, which is based on the following MRI criteria: 1) conglomerations of adherent nerve roots residing centrally within the thecal sac; 2) nerve roots adherent peripherally giving the impression of an “empty sac”; 3) soft tissue mass replacing the subarachnoid space. “

“Steroids are the next conceivable neurotoxic compound. Methylprednisolone acetate, one of the most commonly used steroids injected during LESIs, contains polyethylene glycol. If injected intraspinally, sterile meningitis and arachnoiditis may occur.17 Apparently, the epidural space is not totally separate from the subdural and/or subarachnoid space. Many thousands of arachnoid villi subtend all the membranes from the intrathecal space, and many of these end in the large epidural veins. Therefore, the various spaces and membranes are not only contiguous, but continuous. Hence, an injection of methylprednisolone acetate into the epidural space may spread to the arachnoid space.1 “

Association of Anaesthetists
Anesthesia Peri Operative medicine, critical care and pain
Case Report
https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/10.1111/anae.12017

Severe adhesive arachnoiditis resulting in progressive paraplegia following obstetric spinal anaesthesia: a case report and review

“It is possible that this former group of patients share a common predisposition to adhesive arachnoiditis in the form of abnormal fibrolytic pathways, allergy and other immune disorders or genetic factors. “

“A second possibility is that gross contamination with disinfectants, such as chlorhexidine, is responsible. Given the number of procedures performed worldwide and the ubiquity of chlorhexidine, it is unlikely that trace amounts of chlorhexidine are sufficient to cause adhesive arachnoiditis and instead measurable volumes are probably required. “

“It is sensible to sound a note of caution – this disturbing case and the handful of others listed here do not establish a causative link between central neuraxial anaesthesia and adhesive arachnoiditis, and the suggested aetiologies remain unproven. “

“Every conceivable effort must be taken to avoid contamination of the injectate, including removing any sources of chlorhexidine and avoiding dripping or splashing, or passing impregnated swabs or disinfectant containers across the sterile field. “

Jennifer

Well, apparently you know a lot more about this than I do. I have known quite a few people who have had epidurals, many on a regular basis, without any side effects. Not to say, as you mentioned, that some may experience side effects, but, as with every invasive medical procedure, there are always potential risks. That is always noted by your doctor or other health professional. If we made all our medical decisions based upon risk factors, none of us would ever have any procedure performed.

Hi all, this discussion underlines that everyone is different. It can be helpful, and sometimes confusing, to gather information from the experiences of others. Your stories are referred to as patient reported outcomes and are valid, especially when paired with the medical literature (clinical trials and journal articles) and medical expertise.

I appreciate that you have added elements of all 3 sources of information.

Epidural injections are used to relieve pain as well as to help manage chronic pain. But this procedure isn’t right for every case or for every type of back pain. It's important to discuss the risks and benefits carefully with your doctor. If you're not sure, consider getting a second opinion. Make sure you are seeing a specialist who commonly treats arachnoiditis.

This thread can help develop questions to ask your doctor, like:
- Are epidural injections recommended for patients with arachnoiditis?
- Why do you recommend epidural injection for me?
- What are the risks?
- How long might I expect to have pain relief?
- What alternatives are there?

As always, keep in mind the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ when sharing and reading posts on Mayo Clinic Connect. In particular I point out guideline #1
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community. See the full Disclaimer (https://connect.mayoclinic.org/disclaimer/).