Hi again Doctor,
I can't thank you enough for your time and expertise. I am quite tiny and was aware of the increased risk of dissection in TS women. I dread the thought of another surgery (it would be my third) but fear dissection even more.
It makes total sense that a 4.5 cm aneurysm on me would be different than on someone taller. I've brought this up with my cardiologist in the past and will print out the article you sent to take to my upcoming visit.
Thank you again. Best wishes!
Hi again DavesMom,
Turner Syndrome is itself associated with an increased risk of tearing of the aorta (called 'aortic dissection'), regardless of whether patients have a bicuspid aortic valve or not.
When following the size of the aorta in Turner Syndrome patients it is important that the measurements be "indexed" to body surface area. The reason for this is that an aorta of 4.5cm means different things in patients of different sizes. For instance, 4.5cm in a tall large man may be normal when indexed to his body surface area. By comparison, a measurement of 4.5cm in a small woman (as is the norm for Turner patients) can represent significant enlargement.
There is a research article by Matura in the journal Circulation published in 2007. If you google Matura Circulation 2007 you will likely find it. I would recommend reading this and discussing it at your next cardiology visit.
Take care!
Hi Doctor,
Thank you so very much for your reply. Yes, I have a bicuspid valve, probably due to the fact that I was born with Turner's Syndrome. I also believe I have Connective Tissue Disease.
I think you were right about my having become accustomed to a routine and now am curious as to why it's changed. I just thought both a CT and echo were necessary for a complete picture of how my heart's doing - especially if, as you say, the echo is good to keep track of my mechanical valve. It's 14 years old now but hopefully it will last for a lot longer.
However, I'm most concerned about my aneurysm so am happy to know that the CT is the gold standard. I've always thought it odd that the aneurysm is only visible on the CT.
I'm the least sports-minded person ever, so no need to buy a helmet or worry about injuries. : )
Thank you again for all your information. Anything else would be greatly appreciated.
HI again DavesMom,
I needed to go to the operating room and so didn't have a chance to complete my advice:
My general advice for all patients with a mechanical valve is to maintain excellent oral hygiene through twice daily brushing, daily flossing, and dental review every 6-12 months. Antibiotics are required at the time of any significant dental work that includes bleeding from the gums (this is associated with release of oral bacteria into the blood stream).
For patients with enlarged aortas and/or anticoagulation associated with a mechanical valve, I advise against any contact sports / extreme sports. If you ski then a helmet is definitely required to reduce the risk of head injury or bleeding inside the head.
The reason for your aortic valve disease plays an important role in your future decisions surrounding your treatment. I wonder whether you had a bicuspid aortic valve? This would account for the associated aortic enlargement. If so, the other component of your care would be a complete family history and consideration toward screening (for bicuspid aortic valve) of your children and siblings.
I hope this is helpful.
Best of luck.
Dear DavesMom,
Sometimes we doctors underestimate how much a simple change (such as not scheduling an echo) can mean so much to patients who have become accustomed to a certain routine. I'm not sure what the reason for the echo not being ordered is in your case but would like to reassure you that it doesn't necessarily signify a change in treatment.
Echocardiography and CT provide but complementary information about the heart. The CT provides the most accurate measure of your aortic dimensions, and as such the diameter of the aorta can be followed closely over time. The echocardiogram ('echo) is best for tracking how your mechanical aortic valve is working, the function of the other heart valves, and the strength of the pumping chambers ('ventricles'). The first part of the aorta is seen on echocardiogram and measurements can be made and compared over time. However CT remains the gold standard for tracking the aortic dimensions over time.
I hope that answers your questions.
Take care and good luck.