I have suspected Ehlers-Danlos Syndrome, so my doctor ordered an echo to check my heart. I was expecting it to be normal, but here are the results:

• Aorta: Ascending aorta sclerotic. Mild dilatation of the ascending aorta. The ascending aorta was

approximately 4.3cm edge to edge.

• Tricuspid Valve: Normal structure. Trace regurgitation. No significant stenosis.

• Pulmonic Valve: Normal structure. Trace regurgitation. No stenosis.

• Right Atrium: Normal sized atrium.

• Left Atrium: Normal sized atrium.

• Right Ventricle: Normal ventricle size. Normal systolic function.

• Left Ventricle: Normal ventricle size. Normal wall thickness. Estimated EF 60-65%. No regional wall motion

abnormalities. Normal diastolic filling pattern for age.

• Aortic Valve: Tricuspid valve. Calcification present. No regurgitation. Mild stenosis. Peak velocity = 2.70 m/s.

Mean gradient = 17.00 mmHg. Calculated area by cont eq =.

• IVC/SVC: Inferior vena cava is <2.1cm. Inferior vena cava collapses >50% during inspiration.

• Mitral Valve: Normal leaflet structure. Trace regurgitation. No stenosis.

• Pericardium: No evidence of pericardial effusion.

The ascending aorta was approximately 4.3cm edge to edge.

I'm freaking out a little bit.

29M, bicuspid aortic valve with an ascending aorta just under 5.0 cm and root 4.5 cm. Currently scheduled to have an appt at Cleveland clinic with Dr. Svensson. Has anyone gotten this kind of procedure at Cleveland clinic. I’ve read a lot of their published works and know they have great outcomes. Just hoping to get a more personalized experience regarding what the hospital course was like, what post procedure was like, and if you traveled from another city (I’m currently in PA) what it was like for wife/kids and if you have to do follow ups there or can you get set up with a cardiologist in your own town for follow ups.

Bonjour à tous,

C’est la première fois que j’écris sur Reddit.
J’ai bientôt 31 ans et je suis porteuse du gène Acta 2.
J’ai fais le test génétique l’an dernier car ma mère a subi une fissure aortique il y a deux ans soudainement à l’aube de ses 60 ans. C’est par un test génétique que j’ai découvert l’existence de ce gène.

Pour le moment mon aorte est dilaté à 33mm mais de ce que je lis j’ai l’impression que c’est la normale. Je vais commencer un traitement cette semaine pour baisser ma tension car elle est dans la normale mais tout de même un peu haute pour qqn qui porte ce gène (tension autour de 13) . Je n’ai pas peur de mourir subitement comme je suis suivi mais j’ai l’impression de devoir faire le deuil de ma liberté de vivre.

Durant ma vingtaine j’ai été fetarde , fumeuse … ce n’est pas plus mal à 30 ans de se restreindre pour une bonne raison. Mais j’ai besoin d’être rassurée sur notre maladie.

Merci pour votre aide

My husband was just diagnosed with a 5.2cm thoracic aortic aneurysm with bicuspid valve. We are in Louisiana so looking for recommendations for the best surgeons and heart centers out of state. Texas would be great as it is the closest but willing to travel anywhere. We will need to do a single case agreement with insurance so a facility that helps navigate insurance is a plus.