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fibro muscular dysplasia/connective tissue vascular disorders
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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.
Related Discussions
Avatar f tn
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.  
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