Aa
A
A
Close
Avatar universal
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.
Cancel
1 Answers
Page 1 of 1
Avatar universal
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Your Answer
Avatar universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Submit Answer
A
A
Top Heart Disease Answerers
11548417 tn?1440481484
Blank
Ger57
Netherlands
159619 tn?1318997813
Blank
erijon
Salt Lake City, UT
Avatar f tn
Blank
achillea
CA
Avatar m tn
Blank
Occupant
IL
Avatar m tn
Blank
tacolino
Ireland
144586 tn?1284669764
Blank
caregiver222
Blank
BloodPressure Tracker
Monitor Your Blood Pressure
Start Tracking Now
Blank
HeartRhythm Tracker
Track your Heart Condition
Start Tracking Now
Recent Activity
4522800 tn?1459192030
Blank
VICourageous commented on clean_in_ks's status
5 hrs ago
4522800 tn?1459192030
Blank
VICourageous commented on dominosarah's status
Jun 26
4522800 tn?1459192030
Blank
VICourageous commented on spider6's status
Jun 25
Heart Disease Community Resources
RSS Expert Activity
233488 tn?1310696703
Blank
Marathon Running Done Over Many Yea...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
233488 tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
748543 tn?1463449675
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Heart Disease Answerers
11548417 tn?1440481484
Blank
Ger57
Netherlands
159619 tn?1318997813
Blank
erijon
Salt Lake City, UT
Avatar f tn
Blank
achillea
CA
Avatar m tn
Blank
Occupant
IL
Avatar m tn
Blank
tacolino
Ireland
144586 tn?1284669764
Blank
caregiver222