Concerned parent of 16y.o

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tiskatt

New member
Joined
Oct 11, 2019
Messages
2
Location
NJ
Hello members,
I came across this wonderful resource when cardio suggested surgery and I started Google search.

My daughter was diagnosed with BAV right after birth. She was monitored by the same cardio since then. She stopped growing at 5'3'' probably 3-4 years ago.
Aortic aneurism grew from 40mm to 44 mm in 2.5 years on MRI.
CTA shows 40mm
Her systolic pressure runs in the 90'-100.

Cardio referred us to surgeon due to aneurism growth. The surgeon we met with can operate in two months.
My daughter, who missed two years of high school sports due to injuries wants to get the surgery done and get recovered for next season, she doesn't want to wait 6 months to find out that she needs a surgery then and miss the last year of school sports
Do you think its too aggressive?
Anyone with similar height has surgery for Aortic aneurism?
What do you think?
Thank you

Concerned parent
 

Duffey

Me and Granbon
VR.org Supporter
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Sep 29, 2004
Messages
5,239
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Far side of the moon
Hi and welcome. Is there any problem with your daughter’s BAV where it might need to be replaced? Our grandson has been monitored since birth with a similar scenario. He is only ten and so far his enlarged aorta has grown at a proportional rate to overall growth. There have been no issues with his bicuspid aortic valve. I understand the many different ways you are being pulled in trying to reach a decision. Any chance, other than insurance, that another MRI or CT scan could be run in 3 months rather than six to see if there’s any progression?
 
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DachsieMom

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Mar 3, 2015
Messages
320
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CT
What sport? If she wants to be fully recovered to play a fall sport, then waiting until summer might not give her enough time to fully recuperate. If it’s a spring sport, you might want to wait until summer if you decide to have surgery, so she won’t miss school. If she is in high school, while you recover quickly, that’s a stressful period and you only have 2-3 minutes between classes, which might require walking up and down stairs. While you aren’t in school for 8 straight hours, the mental load could also be tiring. It would be best if she had at least eight weeks at home before going full force at school.
I went back to work at eight weeks post op but found I tired fairly easily initially. My job requires mental concentration, but no physical effort (I kept up with emails starting right after surgery, and returned full time at eight weeks, but from home, as I could not yet dress myself in a suit. I went to the office at about 11 weeks, and it was fine).
I’m 4 ft 10, so she has a good 5 inches on me. I had surgery at 41 so certainly not young like your daughter, and no BAV. 4 mm in 2.5 years could be significant and surgery may be prudent given BAV and her small stature, but there could also be some allowance for different equipment.
Just realized I’m rambling here....sorry.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,170
Location
Queensland, OzTrayLeeYa
Hi and welcome
Cardio referred us to surgeon due to aneurism growth. The surgeon we met with can operate in two months.
My daughter, who missed two years of high school sports due to injuries wants to get the surgery done and get recovered for next season, she doesn't want to wait 6 months to find out that she needs a surgery then and miss the last year of school sports
Do you think its too aggressive?
Anyone with similar height has surgery for Aortic aneurism?
What do you think?
Thank you
Firstly I'm a bit lost with the "operate in two months" vs the "wait 6 months"

There are many views as to whether to operates sooner or later. I'm of the view that the wait till later is a bit of a vestigial hangover from the times when surgery really was very risky (rather than just risky) and you really did want to wait until the stats made death "imminent" by not haing surgery real bloody soon. Recently its emerging that when the trend is clear that surgery is not years away that sooner is better because there is less recovery needed (or remodeling of the heart) to get you back into a good place with the removal of the plumbing restriction forcing unbalance in the heart muscles (sides, left and right).

My personal view (as a patient not a surgeon, although they too are divided) is that earlier is better. ESPECIALLY when you're young.

Myself I was taken out of sport when I was about 7 until I was about 14 (quite critical years btw) due to my early diagnosis of BAV and the clear need for surgery. This was in about the mid 70's and my surgeon wanted (if possible) to avoid pediatric surgery and wait till I was bigger to do my first surgery (which was OHS, but was a "repair" of the type now routinely done on young children via transcatheter). Had that been available my second surgery may not have been in the middle of my University Degree.

I know that children do not see things as adults do and to her 2 years of missed sport is perhaps a big deal. But I would do my best to impress upon her that its the long term goals that are important and she probably won't know any of the people she mingles with in school now after she's graduated from Uni and has a job in a profession (or whatever she does).

No need to be concerned however as all the options are pretty much good. I for instance had my 3rd OHS in 2011 in my late 40's and since then I've been (if I may say) "more active than most" (but not as active as some).

Best Wishes
 

DachsieMom

Well-known member
Joined
Mar 3, 2015
Messages
320
Location
CT
I should add that I have a st Jude 21 mm aortic mechanical valve conduit. My aneurysm was small - either under 4 or slightly above 4 - but I’m tiny (under 100 lbs and as I said, 4 ft 10 if I’m lucky), and had a gene which predisposed me to issues. My sister had surgery before me - her aorta was 4.8, and she was 5 ft 3. In her case, the aorta was ready to dissect so we were extremely lucky.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
780
Location
kansas city, mo
Hello members,
I came across this wonderful resource when cardio suggested surgery and I started Google search.

My daughter was diagnosed with BAV right after birth. She was monitored by the same cardio since then. She stopped growing at 5'3'' probably 3-4 years ago.
Aortic aneurism grew from 40mm to 44 mm in 2.5 years on MRI.
CTA shows 40mm
Her systolic pressure runs in the 90'-100.

Cardio referred us to surgeon due to aneurism growth. The surgeon we met with can operate in two months.
My daughter, who missed two years of high school sports due to injuries wants to get the surgery done and get recovered for next season, she doesn't want to wait 6 months to find out that she needs a surgery then and miss the last year of school sports
Do you think its too aggressive?
Anyone with similar height has surgery for Aortic aneurism?
What do you think?
Thank you

Concerned parent
If he is saying two months, it is better to do it then, then wait for another six months. You do not want anything to happen if she was doing her sport activity and collapses due to something with her heart condition. waiting too long is not an option. Please think about it, better she do it as soon as the surgeon says, then wait six months and taking bigger risks for school sports.
 
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