Doctor Who Could Help Patient with Adhesive 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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863664/
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]. “
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6357879/
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/).

Hello labgirl
I can understand wanting to relieve the horrific pain of AA. It has me unable to sit, stand or walk without intolerable pain. I'm working on it..however, just when you think it can't get worse, it can. Before I was diagnosed I had repeated injection procedures for the pain and my AA worsened every time. I also have EDS so that is a factor for developing adhesions also. I would now not ever let any needles near my spinal canal or cord. It's Russian Roulette. Of course this is only my experience and yours could be different I would ask your doctor what the chances are that you would develop more adhesions, making your arachnoiditis worse I wish you the best!

Hello,
Sorry for my delayed response to your comments.
I did decide to go forward with the epidural because I am so desperate for pain relief.
Unfortunately, it turned out to be an agonizing procedure for me. My doctor gave me
a sacral epidural that caused me to scream with incredible pain as the needle entered
my back. I begged him to stop the procedure, but he said he already had 60% of the injection complete and wanted to continue.
By the end of the injection, I was sobbing and shaking uncontrollably.
Long story short, after all that, it offered no relief whatsoever.
It was a very hard "lesson learned" and I will just need to continue on my search for relief that doesn't involve touching my spine in any way........no surgeries, no injections.
Thanks for responding to my question from back in January, though. Sadly, just a week after my injection, my husband, who suffered from Parkinson's had two falls at home and was very disoriented. He was admitted to the hospital and diagnosed additionally with dementia. He developed COVID and was then sent on to a SNF. After that, I had to have him stay in assisted living. He went downhill very quickly, falling almost every day for two months. He passed away in early April.
I'm struggling to recover from this trauma, but I know it will take a lot of time and prayer on my part.
Janet

I am so sorry to read about the horrible experience you had at such a young age.
You're absolutely right about the need for patients to be given full, complete, information about these injections before blithely administering them as "something to try".

Unfortunately, in my desperation to find relief, I went ahead with the epidural. It was excruciatingly painful and I screamed throughout the procedure. After all that, there was absolutely no relief. No more injections for me.

@labgirl I am sorry to hear about the loss of your husband. Having physical pain must make this so much harder. You may find our Loss & Grief group helpful as you would be communicating with other members going through similar circumstances.
Here is the link to the group.
https://connect.mayoclinic.org/group/loss-grief/
I am a cervical spine surgery patient and only had one spine injection which caused me a lot more pain and didn't help. I think I was allergic to something in the injection. It was the most painful experience in my life totally off the charts of what I previously thought was intense pain. I was also shaking uncontrollably and nearly passed out, but I managed to hold on with some deep breathing and imagery I chose to think about instead. I'm not doing another of those injections again. I don't have lumbar issues, but I can sympathize.

Jennifer

I am so confused. I had brain surgery (Specifically MVD) and the surgeon put in the operation note that he encountered thick and extensive arachnoid adhesions. I’ve never heard of this before and none of my MRIs even indicate I have this. I don’t have symptoms associated it’s this disorder. However, I do have sarcoidosis. Which I think mimics this. I don’t think I have this. I assume he’s lying because he didn’t biopsy it and did not refer me for further treatment. He didn’t say if he removed all the scar tissue. Just that he encountered it. There is nothing else in my file regarding this issue. Heeeeeelllllllpppppp!

@ghostwriter Not to worry. Often doctors write things they may think about as possibilities in medical notes. That doesn't mean it is something conclusive, it's just their thoughts and description at the time. They don't have a reason to make things up in surgical notes. I don't know if that would show up on an MRI or not as medicine often isn't an exact science. It's an art of looking at various clues and drawing a conclusion. Some times it's a suggestion of a direction for further advice. One thing that is certain is that surgery creates scar tissue. If you are really concerned, you might want to ask your provider. It sounds like you are doing well which is the important piece.