My Experience with Surgery and the Autoimmune Response
A popular topic amongst the chronic illness community is surgery. If you're like me, you either know someone who has gone under the knife to try to regain some control of their life or maybe even you have had a procedure done yourself. We've heard all the stories from the really good to the really, really bad. One thing I've never heard much about is the body's response to the trauma of a procedure. Unfortunately, I learned all about this the hard way. I share my story in hopes that maybe someone else will be a bit more prepared than I was.
Autoimmune triggers and vascular disease
As someone who lives with multiple autoimmune conditions, I'm used to the flare-ups triggered by stress, weather, and completely overdoing it in general. Along with those autoimmune conditions, I recently discovered I also suffer from a few different vascular diseases, one being May-Thurner Syndrome.
What is May-Thurner Syndrome?
May-Thurner Syndrome (or MTS) is the compression of the left iliac vein by the right iliac artery, which resides in the pelvic region. For me, this caused reflux in my entire pelvic region (pelvic congestion syndrome) and severe reflux of both my great saphenous veins (venous insufficiency).1
I needed stent placement
Compressions can vary in severity, and unfortunately for me, I had an 88% compression that required stent placement. I know several people in the community who have had this procedure done with recovery being pretty simple. Just a few days of rest and some Tylenol is the standard for recovery. I didn't take into consideration my body's ability to overreact to stress. Here's what happened.
Waking up from surgery
As I came out of the twilight anesthesia, I immediately felt an extraordinary amount of pain from my hips to my groin to my back to my legs. I asked several times if this was normal. My nurses and surgeon assured me it was since the iliac vein lies on a nerve. They explained that when the vein is stented and opened, it sometimes irritates that nerve, causing some to have more back pain than others. I tried to stay optimistic, but things only went downhill from there.
The complications began
After one major complication (I bled out of one of my entry sites, literally a 1% chance of happening) and 2 hours of bed rest, they let me leave the surgery center. I asked my mom (who was my driver) to swing me through a drive-thru. As we sat there, I became increasingly uncomfortable. I told her the pain was unbearable, and within seconds I began losing consciousness. My mother called 911, and when the paramedics arrived, my blood pressure was dangerously low. I had earned myself a trip to the ER.
After a few hours of being in the ER and being given morphine, they decided it was safe to go home and that I had experienced a vagal response to the pain. But why? The procedure wasn't supposed to be this painful. The hospital sent me home with narcotics, but it still wasn't over.
An autoimmune response to trauma
Over the next two days, the pain only increased, and the narcotics were doing nothing. I called my doctor sobbing, begging for help. Based on my medical history and symptoms, she concluded that my body was having an autoimmune reaction to the trauma, therefore causing my AS and fibromyalgia to both flare-up. I lost my mobility. I cried around the clock. It was a living hell. She told me to take 800 mg of ibuprofen, and within 2 hours, I was dramatically better. This confirmed the autoimmune/inflammatory theory, making it easier to keep the pain under control.
Next time I'll be prepared
Having this experience, I now know my body doesn't respond well to trauma, and I will be sure to discuss this with my doctors before future procedures. I encourage anyone who suffers from AS or any other autoimmune disease to do the same and to be prepared before going through with an operation, big or small.
Do you use the word disability to describe your AS?