MRA Report--Happy, Happy/BAVD vs. TAA

[francie12]

Just wanted to share great news with all my vr.com friends! The report from Matt's MRA has come back and... the dilated portion of the asc. aorta tapers back to normal size before it reaches the arch and...the rest of the aorta shows no visible signs of bulging or weakness! What a relief!

Also great, the areas our regular echos have been able to image show the same dimensions reported by the MRA, so we can pretty much trust the precision of future echos with our technician and cardio.

Also great, the doctor (pediatric geneticist) has ordered screening echos for my husband and other son (I've already had a normal echo)! Interestingly, she has done this because of concerns about Aortic Aneurysm Syndrome as opposed to BAVD. She says that there are as many opinions about BAV as there are cardiologists, and when she sees a BAV with a (so far) stable dilated aorta she sees the possibility of that dilation just "coming along with" a BAV and not necessarily continuing to grow to aneurysm size... or being AAS. As far as I'm concerned a rose by any other name would smell as sweet (!) as long as we are doing everything possible to monitor the growth rate and stay on top of the situation.

It has pretty much shaken out that my son's aorta/connective tissue status will be followed by the pediatric geneticist (we have another appointment in two years) and his valve issues and LV size by the cardio. (who, of course, will also follow as much of the aorta as he can see by echo).

Whew! More than you wanted to know? Thanks for listening! I know whenever I see the letters BAV, I always perk up and tune in...

Anyway, as a lurker more than a poster, I'm still out here learning and rooting for you guys!

All the best!

 

[Mary]

I'm glad you received the good news about Matt's aorta.

We have a son with a BAV that we're watching too.

 

[Andrew'sMom]

hooray for the good news!!!
!! !!

 

[Nan]

Francie, that is wonderful news. You and your family must be so relieved. I can't imagine how difficult it is for all of you parents of children with heart problems. Harder than being the patient, for sure.

 

[Guest]

Excellent news!


And, Nan, yeah, it does seem to be harder to NOT be the patient....



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"You really think you're in control?" ... Gnarls Barkley ... 'Crazy'

 

[aussigal]

YAY!!!!!...
I bet you are doing the "happy dance" ...
I hope your good news keeps your worries and Matts aorta at rest for another 12 months...
Its hard being the mum sometimes...I dread the upcoming review of our 2 BAV boys, I hope we get the same "stable" news as you.

 

[Arlyss]

ACC/AHA 2006 Guidelines

ACC/AHA 2006 Guidelines

So glad to hear about Matt's MRI! It sounds like a typical BAV ascending aorta that just needs to be monitored for now ..... wonderful that the echo is accurate and you can continue with that approach.

With the publication of ACC/AHA Guidelines that reference the most recent understanding of BAV (see section 3.3 in the link below) it should become easier for patients and families to discuss BAV with their physicians with less confusion.

http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

Best wishes,
Arlyss

 

[Arlyss]

Comment on Terminology

Comment on Terminology

The proliferation of acronyms can be so confusing. Terms and their abbreviations seem to be easily coined, and it can be difficult to know if everyone is speaking about the same thing.

I notice that Matt's geneticist speaks of "AAS". I am hopeful that this term, as used by this geneticist, will not become popular for several reasons. First, it conflicts with an existing use of that acronym. There are already published medical papers using AAS for "Acute Aortic Syndrome". In these papers, AAS is used to define pain associated with the aorta. The Aortic Center at Mass General gives this meaning of AAS on their web page. There are initiatives to get EMTs and ER personnel to know Acute Aortic Syndrome (AAS) signs just like they know Acute Cardiac Syndrome (ACS) signs (heart attacks!). If some other part of medicine, such as genetics, uses this term for something else it will only lead to confusion.

Another problem with the term AAS for describing aortic disease is that it does not differentiate between the aorta in the chest and the aorta in the abdomen - which really need to be kept separate. Diseases of the aorta in the abdomen and the chest are different in many ways and should not be confused.

In the medical literature there are references to "familial Thoracic Aortic Aneurysm and Dissection" or familial TAAD. This term is more precise because it clearly addresses the aorta in the chest. This term has sprung up to cover those families who have a genetic pattern of aortic aneurysm and tearing in their chest for which there is no other explanation or description. I'm assuming this is what the geneticist meant - that there may be some familial genetic reason, not related to BAV, for Matt's ascending aorta being enlarged. I certainly disagree. This is just an indication of the confusion still persisting about BAVs. There is sufficient information in the medical literature today that I am extremely concerned that this type of confusion pesists. It could prevent those with BAV from being taken seriously regarding their aorta.

TAAD used by itself is the most general, inclusive term for those with aortic disease in their chest for any reason, including non-genetic forms of aortic disease. September is Awareness month for TAAD.

Best wishes,
Arlyss