PTSD and Medical Trauma

On the Tuesday before Thanksgiving in 2009, I had an emergency appointment with my neurotologist.  “You have borderline profound hearing loss in your left ear and moderate to severe hearing loss in your right ear,” she said, showing me the audiogram.  I knew it was bad.  I could barely hear anymore. 

“We can try transtympanic steroid injections, do you want to try that?”  I couldn’t understand speech and all my music sounded weird.  I wanted to try it.  I would have tried anything. 

An hour later, I was in a procedure room curled up on my side.  They put a cone in my left ear and numbed my ear drum, which hurt a shocking amount.  Then they punctured my ear drum and injected steroids into it.  I watched it on the tv, the needle withdrawing threw the hole, the fluid spilling out behind it.  It felt like having water up my nose, but in my ear.  Once the steroids were injected, I was temporarily deafened, even loud sounds heard only by the vibrations in my chest.  I lay still for thirty minutes, then rolled over and did the other ear.

I got five injections in each ear drum over a three week period.  I never regained any hearing in my left ear.  My right ear retained some hearing, though what was left fluctuated heavily for years.  I had several hearing tests over the next few years.  Every time, it was nerve wracking and terrifying, even though it was painless and easy.  I eventually realized I was reacting to my ears being touched.  I could no longer handle having things put into my ears without having a visceral reaction. 

I underwent a lot of invasive examinations, tests and procedures while trying to identify what was wrong with me.  I often had things inserted into my body for medical purposes.  After diagnosis, I had more procedures and surgery.   I got bad news a lot.

A couple of years ago, I was having a lot of anxiety, to the point that it interfered with daily activities.  One of my doctors commented that I probably had PTSD.   “The whole process of finding a rare disease is traumatic,” he said.  I have to agree.  Once I realized what was happening, it made perfect sense.  I deal with it and it’s mostly not a problem anymore.  Sometimes though, it comes back.  When I was in the hospital in May, a resident argued with me about using epinephrine and I started hysterically crying.  I knew someone from the immunology team would address this issue shortly but the lack of control brings me right back to the stress of trying to convince doctors I am sick.  I function and am not generally anxious but you can only ever get so far from it.  When you are chronically ill, you are only as removed from these feeling as your next medical event. 

Johns Hopkins did a study a few years ago and found that PTSD lasting at least two years is common in people who have been in the ICU.   1 in 3 patients requiring ventilation has PTSD.  When you have surgery or an accident, you are often treated with powerful drugs by people you don’t know without thorough explanations.  The medications often have psychiatric effects, and patients in comas often report dreaming of fires and having paranoid delusions upon awaking.  The whole experience is terrifying.  For people like me, we have these experiences often, sometimes several times a year. 

If you have flashbacks of medical procedures, hate going to the doctor or panic at the idea of going to the ER, you are not alone.  I think because these events are part of our daily lives, we forget how long reaching the effects can be.  Seeking and receiving treatment for chronic illness, even under the best circumstances, has the possibility of being traumatizing.  It is additionally complicated for people who are chronically ill because we cannot avoid the experience that traumatized us as we need ongoing care.  The reality is that we can traumatize ourselves over and over. 

People experiencing PTSD often have flashbacks, nightmares (of the event or not) and physical responses to reminders of the event (sweating, nausea, rapid heartbeat, emotional distress.)  They often avoid places or things that remind them of the traumatic event.  They may not be able to remember the trauma fully or at all and feel detached from and disinterested in things and relationships they used to enjoy.  They often feel a “sense of limited future” in spite of evidence to the contrary, meaning they think they will die young, never get married, or otherwise have a short and unfulfilling life.  They often have difficulty sleeping, have outbursts of rage, feel jumpy and are hypervigilant. 

Cognitive-behavior therapy can be a helpful tool for patients with PTSD.  Medications can help, but therapy to address the underlying trauma is crucial.  If you think you have PTSD, please seek help from a mental health provider.  This stuff is hard enough without being scared all the time.