Hi there,

I am a 33 year old that was diagnosed with Marfan's when I was about 22. Up until recently Marfan's hasn't really impacted all that negatively on my life. I have extreme hypermobility of my joints and have had reconstructive surgery on one of my hands. That said, one morning in June as I was getting ready for work, I had an extreme pain behind my right eye and numbness down my right side, I went to lie down on the bed and realized I could not walk in a straight line, I veered significantly to the right. My husband brought me to the ER, where I was seen very quickly by a doctor. I presented fine neurologically and she would have sent me home except for the fact that I have Marfan's. As a precaution she ordered an ECG and CT scan and, after a second episode that occured a few hours later in the hospital, it was confirmed that due to the underlying Marfan's, I had dissected my right vertebral artery. This resulted in two blood clots being thrown into my brain and a cerebellar stroke.

Luckily, for what the doctors say is some unknown reason not related Marfan's but merely an abnormality, I happen to have extra blood vessels in my brain that compensated for the lack of blood flow and kept my brain functioning.

I am recovering well, but am interested to hear if other Marfan's patients have undergone a similar experience and could offer any advice.


Thanks

This has not happened in our family. There are 3 adults and 2 children affected.

I am sorry to hear of this happening to you, but I am very happy the outcome was much better than would be expected.

All the best to you.

Cathy