Real Stories

My Experience with Fibromuscular Dysplasia and Stroke

By Pamela Mace

Pamela MaceMy name is Pam Mace and at the age of 37, I had a Transient Ischemic Attack (TIA).

It started with a headache.

I woke one morning with a dull headache. Over the course of the day my head became tender to touch. I thought I might feel better after going for a run. As I went to leave, my granddaughter, Ashley, asked if she could ride her bike along side of me and although I knew it would slow me down I agreed. Thank God, I did! Since Ashley was with me, I had to stop at every intersection, gas station and fast food restaurant we came upon to help her with her bike.

After returning home and showering, I noticed my pupils were unequal. My headache wasn't any worse, but my left pupil was very tiny and my right was huge. Being an Emergency Room nurse, I concluded that these were neurological symptoms. If someone arrived at the ER looking like I did, I would think something bad was going on, like a stroke or brain tumor.

I called a close friend of mine, an ER doctor with whom I've worked, and described what was happening to me. She urged me to get to the ER right away. I felt really stupid. I wouldn't describe it as the worst headache of my life... at least not yet.

After arriving at the emergency room, the pressure in my head was worsening. The ER was backed up with trauma cases so I approached the triage nurse to ask how long the wait would be. I explained that I was a Registered Nurse and that my headache was getting worse. I asked her to just look at my pupils. She started explaining that they were backed up because of all of the traumas and as I again told her I was a nurse (which wasn't getting me anywhere) my face started to go numb. The numbness started at my left temple and slowly moved all the way down my face. I was scared to death.

The nurse then took me right back. My blood pressure was 210/130. I had never had high blood pressure, being a runner. After being sent for a CT scan that came out negative, a young resident presented me with discharge papers and a diagnosis of unequal pupils. Mind you, my blood pressure was still elevated and my pupils were unequal and I just had a TIA (small stroke).

The next day I ended up in another ER where I was given a spinal tap and MRI. The MRI showed that I had dissected my left vertebral artery. After being stabilized, I was sent back to the first hospital I had been to because that is where my primary physician was on staff. By this time I had the "worst headache of my life".

The rest of my story involves almost being sent home again. Being a nurse, I challenged the doctor's knowledge and he re-evaluated my case. Had I been sent home I would have had a massive stroke and died. Even after that I was misdiagnosed again. If it weren't for my nursing training, I most likely would not have survived this ordeal.

I ended up dissecting my left vertebral and bilateral carotid arteries. I was then diagnosed with Fibromuscular Dysplasia, which I also have in my right renal artery. From my dissections, I formed carotid aneurysms and needed to have stents placed in my carotid arteries (which is still not approved by the FDA for my purpose).

FMD is more common in women and is a cause of stroke. Most of my physicians were not familiar with FMD. Everywhere I go I need to educate my doctors. Others with FMD have had the same issues. I was lucky to survive with no permanent disabilities. Others have had and continue to have multiple TIAs, strokes.

I'm one of the lucky ones.

Pamela Mace