Steroid Injections for Pain – All Risk, No Reward?

hospital
My outpatient bracelets for the procedure

I recently heard this intense story on NPR about patients who were dangerously affected by contaminated steroid injections administered as nerve blocks. At least 64 people died and about 700 more were seriously sickened, causing their lives to be changed forever. The tainted steroid compound was mixed at a Massachusetts pharmacy in 2012 with expired ingredients in unsanitary conditions. Barry Cadden, an owner of the pharmacy, is now on trial in U.S. District Court in Boston. He faces federal charges that include racketeering and second-degree murder. He pleaded not guilty.

This story really struck me because last year I went through a series of steroid injections or “nerve blocks” for my chronic pelvic pain. The experience of the injections was really unsettling and I feel I wasn’t made as thoroughly aware of (or warned of) the side effects as severe as what happened to the patients mentioned above. I had a lot of feelings pre and post procedure(s) but the thought of having infected substances injected directly into my body is utterly horrifying. While I’m thankful I did not endure long term complications from my experience, I feel so thoroughly pained over what’s happened in the lives of these affected patients and their families.

I had no idea of a “nerve block” prior to my own experience with them so I wanted to share what I went through…

Post Ganglion of Impar Nerve Block Procedure with bandage at coccyx (forgive the photo quality!)
Post Ganglion of Impar Nerve Block Procedure with bandage at coccyx (forgive the photo quality!)

“Here, I’ll Refer You to a ‘Pain Management Specialist'” – Sounds great!

In June 2016, I found myself at the UCI Women’s Health Department. After being referred to Dr. Lane, a Uro/Gyno Specialist, I was then referred to Dr. Shah, a Pain Management Specialist, who was to “address” my pain. During my initial meeting with the very pleasant Dr. Shah, she seemed extremely certain that since nothing had been found on my tests and no diagnosis had been made, that my nerves must certainly be the culprit of my pain. She went on to explain that nerve blocks had been used to relieve chronic pelvic pain and that a Ganglion of Impar Nerve Block would be the most effective place to begin treatment. Every step along this journey I’ve been so hopeful of anyone with “an answer”. So many doctors have simply turned me away, perplexed at what I’m going though, so I would have jumped 100 miles at any opportunity for a diagnosis and cure. After leaving the appointment with Dr. Shah, I decided to go ahead with the procedure.

Procedure #1: Ganglion of Impar Nerve Block – This seems intense, but I got this!

One month later (the soonest available appointment for the procedure), I found myself slathered in antiseptic and face down on an operating table in a room filled with an x-ray machine, my doctor and a crew of fellows and assistants. For these nerve blocks to be administered, they offer no sedation, only topical anesthetic at injection site (Lidocaine  1%). The Ganglion of Impar is administered at the base of your coccyx (right at your tailbone), you’re awake the whole time as the needle is guided into your pelvis by x-ray. The needle reaches to the center of your pelvis to administer a combination of numbing drug (Bupivacaine 15cc 0.25%) and steroid drug (Dexamethasone  10mg – anti-inflammatory corticosteroid, same class as infected meds from the NPR article) to remove inflammation in the area. Since you receive no sedation, you feel EVERYTHING. A fellow administered my injection while the doctor observed. Once the needle was slightly into my body I jumped from searing pain and the doctor quickly warned me to stay still as the positioning of the needle and efficacy of the procedure would be compromised. The pain was extreme, but I have a pretty high tolerance for pain and I breathed through it. The whole procedure took approximately 10 minutes.

I was told if the procedure had worked, I’d feel relief within 30 minutes to 24 hours of the procedure. Unfortunately, I felt no relief immediately after. I went home and alas, 24 hours later still felt no relief. I instead developed a whole host of other issues: a small rash around the injection site (red bumps that lasted approximately 10 days that the doctor believed was due to the bandage adhesive), a wicked yeast infection (which the doctor said was likely caused by the ingredients of the injection resulting in a PH imbalance) and tingling sensations running through my legs (instilling in me the fear of nerve damage) which lasted about a week.

Three months passed and my doctor told me since the Ganglion of Impar didn’t take, we could try a Pudendal Nerve Block. The pudendal nerve is the main nerve of the perineum, supplying sensation to the genitals and for pelvic muscle function – there are two separate pudendal nerves running down each side of the body. (*FUN FACT: Latin for “pudendal” is “parts to be ashamed of” – for real. Google it. One of the many historically sexist things I’ve learned about medicine which begs a whole ‘nother conversation about female sexual health and acceptance in modern culture. I digress…) Desperate for relief, I agreed to the procedure.

Procedure #2: Pudendal Nerve Blocks – Holy hell, what did I sign up for!?

One month later (again, the soonest appointment), I found myself once again, slathered in antiseptic and face down on the operating table in the same room with an x-ray machine, my doctor, and this time a room full of a different crew and different fellows. Again, a fellow administered my injection while the doctor observed. After my uncomfortable previous experience with the Ganglion of Impar Block, I requested an oral sedative prior to the procedure. They would not oblige and again, I only received topical anesthetic at the injection site (Lidocaine  1%). Where the Ganglion Block was administered through the coccyx, the Pudendal Nerve Block is administered in two separate injections, one through each pudendal nerve running through each butt cheek – I did not learn this until day of the procedure. This time they injected the numbing drug (Bupivacaine 15cc  0.25%) with a new steroid drug (Triamcinolone 20mg – synthetic anti-inflammatory cortico steroid).

As the first injection took place through my right butt cheek, I almost passed out from the pain. It was infinitely more excruciating than my previous procedure. I tried to breath through it – I could actually feel the minute tissues in my butt cheek ripping as the needle was being forced into my body. After the first injection was done I thought to myself “I cannot possibly take another one of these. I’ve got to get up and run away before the next one” then my doctor said “And now, the next one…”. I tensed my body and breathe/cried into the pillow below me for yet another excruciating 10 minutes.

After the procedure, I felt no relief. Mostly I was traumatized from having gone through the torture of the Pudendal Nerve Block. As every moment passed, I realized how inhumane it was for the doctors to not administer local anesthesia for this procedure (one of many torturous procedures I’ve had sans anesthesia). I had asked specifically for an oral sedative too and they did not honor my request which made me feel helpless as a patient. As the next week passed, I received no pain relief and one month later I met with my doctor for our follow up appointment. She informed me that since both nerve blocks didn’t take, there was nothing more she could do for me. No doctors note to give my employer, no referral to someone else who could help, not even a follow up phone call after our last meeting. Simply, nothing more she could do…

When Reality Hits You Pretty Hard…

Not only are these situations physically and emotionally painful, they’re financially painful as well. The cherry on top was receiving the healthcare bill in the mail for these experiences. On top of my growing medical debt pile, my cumulative $1,200 out-of-pocket cost for these procedures was more than I could afford and this is something that many Americans face. The patients in the NPR story have been tied up in litigation since 2012 and have not received a dime for their hardship. Family members have died, individuals have been deemed paralyzed/unable to live life properly and yet they still were expected to pay their out-of-pocket portions for these botched procedures.

The entire time I worked with my pain management doctor, she never really managed my pain. She never prescribed me effective oral pain medication (instead she advised a strict Advil only regimen and vaginal Valium suppositories, both of which didn’t touch the pain) and she administered the blocks which were supposed to relieve the pain but in the event that they caused more pain, she had no back up plan for me. I left this experience feeling completely deflated.  It showed me that most doctors are very limited to their specialties and our American healthcare system is not set up to venture outside the box to help you. The one and only good thing that came from this was my renewed sense of self-advocacy. You must fight for your health. When someone tells you no, you have to keep going until you find a yes. I have since journeyed my way through the grapevine of medicine and continue to find new avenues for my potential cure. I will continue this until I am back to 100% health and I implore you to do the same if you have similar experiences!

What To Do Next

If you find yourself in the position of considering receiving nerve blocks for chronic pain, I have two recommendations:

  1. Make sure that the pain you’re living with is enough to justify traumatic procedures. I was to the point where I had nothing to lose – death would have been better than continuing on with the pain. Frankly, the perfect candidate.
  2. DEMAND anesthesia or at least an oral sedative prior to procedure. Especially for the Pudendal Nerve Block since it’s two very intense injections into a very sensitive, nerve-rich area of the body that in my opinion is a crime against humanity to expect a patient, already in extreme amounts of pain, to endure even more unanesthetized pain AND THEN refuse to prescribe appropriate pain medication for post-procedure healing and comfort.

Have you had this procedure or a similar one done? What was your experience? Let me know!

-xo

http://www.npr.org/sections/health-shots/2017/01/24/511442863/victims-of-contaminated-steroids-still-hurting-my-lifes-upside-down

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