fibro muscular dysplasia/connective tissue vascular disorders

I am a 31 yr old female whom over the last 9 months has been diagnosed with fibromuscular dysplasia and connective tissue/collagen defecit vascular disease.  
9 months ago (at age 30) I presented w/ the worst headache of my life (right temple and right side of my neck) along w/ an episode of passing out, loss of bladder control during the fainting, loss of taste, blood trickling from right ear and a loud "whooshing" sound in the right ear.  A CTA w/ & w/out dye contrast showed a completely occluded right internal carotid. Quickly following I had an arteriogram which revealed a total occlusion of the right internal carotid caused by spontaneous dissection 2 cm. past the bifurcation.  Appearance of the right internal carotid was indicitave of fibromuscular dysplasia.
4 months later I went to the ER w/ sharp chest pain that radiated down the left arm and left jaw.  A CTA revealed an aneurysm of the ascending thoracic aorta.  A 2nd CTA was performed showing the following measurements:  Ascending Thoracic Aorta dilated to 4.3 cm & Aortic Root dilated to 4.0 cm.
The cardiologist, cardio-thoracic surgeon & vascular surgeons are entertaining the idea of Marfan syndrome, however, I do not have any other symptoms of Marfan syndrome & genetic testing has not been done.
Because I have already dissected a major artery & my paternal grandmother died @ age 51 from a dissected aortic aneurysm, the surgeon is planning an ascending thoracic aorta & valve replacement for later this year.
Over the past 3 weeks my headaches have migrated to the left side of my lower head and left rear neck.  I had another CTA performed yesterday, prelim viewing showed normal blood flow.  I am concerned about the left & right vertebral arteries having stenosis or signs of FMD, also, because I am having occipital pain.  One of the previous CTA's mentioned stenosis of the right vertebral artery but no follow up was done.
Any suggestions or referrals would be greatly appreciated.

[FMDAdvocate]

Hello, I am sorry about your health issues. I too have FMD, fibromuscular dysplasia diagnosis was made after a carotid dissection. My suggestion would be to contact and join the non-profit organization, FMDSA, Fibromuscular Dysplasia Society of America.