Brooke’s Story

I was 26 years old and 33 weeks pregnant when I lost feeling in my tongue and started showing signs of drooping on the right side of my face. My husband drove me to the Labor and delivery ER (Emergency Room) like my OB (obstetrician) instructed because at the time we were fearful of the possibility of this being a stroke. When I arrived, I was turned away by a triage nurse and told to go to the general ER because it had nothing to do with my pregnancy. The ER doctor diagnosed me with Bell’s palsy and gave me an antibiotic. He would not prescribe the steroid because I was pregnant.

My OB called me the next morning, asking me why I did not come to the Labor and delivery ER and was upset to hear I was turned away and she prescribed the steroid, but due to an ice storm, I was unable to get the steroid in a timely manner.

Facial palsy affected my speech and I wasn’t able to return to work for a few weeks, and when I did, I hid behind my face mask and was exhausted by the end of the day due to how hard I had to work to speak clearly. I stayed home for a very long time to avoid the eyes of friends and family.

I delivered my baby at 39 weeks and decided to stay home with her. Facial palsy has greatly affected my self-esteem and caused a lot of anxiety. I started seeing a therapist around nine months after the onset due to the anxiety I was experiencing and how it was keeping me from doing things I normally loved. I had also been told at this point that I wouldn’t show any more progress after having facial palsy for six months and would probably never fully recover.

I had two separate doctors send in referrals to neurologists and ENT’s with not even a phone call to make an appointment or to say that they received my referral. I finally found a physical therapist to help me with the synkinesis I was experiencing. It helped some, but ultimately, I felt disappointed with the progress. I also tried acupuncture and it helped with the tightness and pain, but not overall recovery. I have felt hopeless in finding full healing and feel sad I’ll never have my smile back and that my children have never seen it in person, only in photos. I’ve been very disappointed by the care I have received and feel like no one has taken me seriously.

It’s been hard, because not many people can understand the trauma of losing your face and how it can affect you. I have had to fight and advocate for myself and do my own research for any kind of treatment I have received, and my advice to anyone going through this is to do the same. Ask questions and get second, third, and fifth opinions. It’s been three years now, and I’m still not happy with my face, and that’s hard, but I have come to a place where I’m okay. What I’m not okay with is the lack of care I’ve received and I hope no one else ever has to go through what I’ve been through the last three years.