Yearly Echo--LV Dimensions Increasing

[francie12]

Hi, Friends!

We've just had our yearly echo and cardiologist visit. This is our fourth in the year and a half since Matt was diagnosed with BAV, regurgitation, and dilated asc. aorta. Some reassurance and some concern--no surgery needed right now, asc. aorta size stable since last echo, but Matt's LV dimensions continue to creep up. This is my concern and here is my question for all of you kind and knowledgeable people. The way I figure it, if the LV size continues to increase at the same rate it has over the last year and a half, it will only be 2 yrs. until surgery! Obviously, we need to delay surgery as long as we (safely, of course) can. So, my question: In your experience, does the LV size tend to increase at a steady rate, or does the rate vary from echo to echo? I know from here that "the worse it gets, the faster it gets worse." I just can't feel that we are that close to surgery. Matt is still asymptomatic, vigorous and healthy. I would like him to stay that way until science gives us aortic valves grown out of your own tissue and implanted via catheter! What are the chances? Any thoughts very much appreciated!

All the best to everybody,

Jane and Matt

 

[DavesMom]

Hi Jane,

I'm sorry to hear that your son is going through problems at such an early age.

I've been thinking about the same thing and will be very interested in what others have to say. I've gotten copies of my echo reports for the last two years and there are a couple of measurements that are getting close to the high end of normal. For example, my RVID went from 2.3 last year to 2.9 this year. (Normal range is below 3.0.) Also, the IVS wall thickening went from 0.8 to 1.0 (Normal is 0.6- 1.1.)

These weren't enormous changes and the measurements are still in range, but if they continue to get worse it won't be long until they're above normal. However, I would imagine that yearly variations might be attributed in part to differences in the technician who performs the echo and also the doctor who reads it.

In any case, I'll be listening with interest to what others have to say and also be sending out positive vibes to you and your son.

Best wishes,
Michelle

 

[tobagotwo]

My observations have been that the worse it gets, the faster it gets worse. The most likely scenario is that the enlargement of his left ventricle will accelerate to some extent, rather than remain constant.

It would be helpful for you to go through his old echoes, and get the LV dimensions, LV wall thickness, and atrium sizes from his older echoes. The reason is that cardiologists often only look to see if the heart size is over the normal range, rather than focusing on how much the heart has changed and enlarged. If the LV has grown considerably, that is more important than whether it's just over the "normal" size. It's something you can talk with the cardiologist about after his next echo.

I know you don't want him to have to go through the surgery any sooner than he has to, and that's reasonable. But the surgery's not the worst thing that can happen. You don't want to wait until there is permanent damage done to his heart. For example, the atria do not remodel as well as the ventricles, and may remain somewhat enlarged. That can potentially allow for trivial or mild leakage in the tricuspid or mitral valve.

He's not ready for it yet, and we're all glad to hear that. However, in order to be his advocate, you may eventually need to push the surgery issue with the cardiologist. Cardiologists sometimes become reluctant to release their adult charges to the surgeon, even when the time has come. I believe they often have an even harder time sending their younger patients.

Best wishes,

 

[MrP]

If your son is 13, the most logical explanation is he is going through puberty and his heart is growing in size....this is normal. I suggest if you are concerned to ask your cardiologist about expected and normal growth rates for a 13 year old boy.

 

[francie12]

Thanks for your input, Michelle, Bob and Preston.

I've been tracking the LV dimensions--they've gone from 5.1 to 5.4 to 5.8 since June '04--didn't realize that the atrium was significant too, will get on that. ECG does show some LV hypertrophy. From what I've read, surgery is usually done at 7.0, LVdd. Though in this case maybe a little sooner as I assume they decide based on relation of LV size to body surface area, and Matt has yet to go through the legendary hormonal growth spurt (thanks, Preston--we did think of that--he's had slow steady growth but real puberty hasn't arrived yet). Also how fast things are progressing and whether or not there are symptoms. Still hoping to hear someone chime in to say that they've had years between echos where there was little or no progression--anyone out there?

 

[MrP]

Francie,
At age 9, I was diagnosed (catherization) with bicuspid aortic valve and had moderate regurgitation until a couple of years ago when it was moderate/severe. Don't know what my LV dimensions were at age 9, but at age 49 they were measured at 5.5cm (LVd) one month and then at 4.42cm (LVd) two months later with a different cardiologist/echo machine/technician....not sure why the difference in measurements. Margin of error? As you know, the normal range is 3.7 to 5.6cm. I also had and continue to have a moderate degree of LV hypertrophy. At age 49 I also had a 5.1cm ascending aortic aneurysm....resected and replaced with Dacron graft. Anyway, I'm not sure any of this helps you. I can certainly understand your concern with the increasing LV dimensions of your son and hope surgery is indeed not required for many years. In my case, the disease seemed to progress gradually....I was always very active growing up...sports, etc. Still am very active after surgery.
All my best,
Preston

 

[gijanet]

Jane

Jane

At what stage is Matt's regurgitation classified? I can only speak from our experience and Katie's anatomy is .............well, let's just say, slightly unusual. Katie's valve regurgitation was first classified as mild.............and we stayed there for quite some time. Then we went to moderate. ONce we hit moderate +, it was no time before we were classified as severe, even with massive amounts of captopril and lasix. Her ventricles,however, did not enlarge significantly. Her surgeon and our PC stressed that we did not want to wait until her ventricles were signifcantly enlarged and permanently damaged, and there was no magic formula stating at exactly what point that would occur. Having said that,from one mom to another, I , too, hope that you can hold off as long as possible. Hugs. J.

 

[francie12]

Thanks, Preston. It certainly does help to hear your story. I love it that you were diagnosed at age 9 with the mod. regurg. and managed to hold out until 49 before surgery. This gives us newcomers hope for the same! Hope the surgery wasn't too difficult and glad to hear that you are still very active pysically. That's what we are all aiming for! For being the so called "gold standard," I've noticed that echo readings are not as reliable as you might think. Matt is scheduled for an MRA in August, and this is giving us some additional security.

Hi, again, Janet! I'm following all of Katie's stories with great interest and sympathy and more than a few laughs! So glad that the dentistry business is finally over..and all for a few cavities. I've logged plenty of time in the pediatric dentist's office for my younger son, Dave (I'm also a DavesMom) and can relate to pediatric dental stress! Answering your question--Matt's regurgitation is still moderate, only a tiny bit increased from last year. I was disappointed to see the LVdd still creeping up, especially as we have been on Lisinopril for a year now and it doesen't seem to have made a difference. Although the dr., rightly I guess, says you don't know what it would have been without it. I just want Matt to do what Preston did--hold off for 40 yrs or so!

 

[MrP]

Francie,
Glad to hear Matt will have an MRA for better accuracy. I'm lucky to go so many years without surgery. In the 60s they didn't do an echo...not sure really if my regurgitation was classified using the same scale as is used today. Back then, they believed I had a hole in my heart that allowed blood to flow back into the valve...it was a loud murmur. They did a cath in Houston and discovered the bicuspid valve instead...thank goodness. I was told Dr. Debakey was going to perform the surgery if it was indeed the hole in the heart. Glad he didn't. Anyway, I was told the bicuspid valve was leaking blood back into the LV and that's why the murmur was so loud. Based upon this, I say it was moderate then. At age 49 I was told that ranking regurgitation is subjective based upon echo tests...mine was ranked 2to3+ on a 1-4 scale.
Best of luck to Matt. Tell him to avoid heavy curls and pushups.
Preston

 

[aussigal]

I just wanted to wish you luck in holding-off as long as you can but also to be strong-enough to make the right decision when the time comes...

I also have a Matt...who has a BAV, luckily for him he is the healthiest of kids and has none of the bad things BAV can give us yet...its his youngest Bro. Steve who is my worry as he has an enlarging ascending-aorta @ 10 yrs of age.

Its a big worry for us mums...I am sure you are doing a fabulous job being Matts advocate here...I read somewhere that the growth of their hearts and stuff continues til they are around 14...just thought you might like to know that...Before then its probably a bit tricky trying to figure out which bit is normal growth and which isnt.

Both my BAV boys have murmurs but they havent been restricted in any activities though I do tell them to feel free to rest as often as they need to and try to discourage weights and stuff like that, dont know if they listen to me though!

keep us posted...us mums have to stick together!

 

[francie12]

Hi, Ton,

I've been rooting for you and your boys. My younger son has yet to be screened--no murmer, no insurance. But they may order one this summer as Matt's situation seems to be progressing.

My Matt has an enlarged asc. aorta, like your Steve. Something encouraging for us from this echo, though--it has not enlarged significantly in the last year (unlike the LV). It is still close to last year's 3.25, large for his size but not progressing, so maybe it is the type of aorta that comes large with the BAV, but is not prone to dissect. Hope this is the case with Steve too. Is his close to this in size? Reading your posts about boys, I've wanted to mention Lisinopril and its possible benefit for dilated aortas. You've probably already been over this with your cardios. though.

The focus now must be on your own heart! You have my thoughts and prayers. I just know from reading your posts that you are going to do great. You sound like the greatest Mom. It is a real comfort and support to come here and know you're not alone. Even family and friends do not seem to "get it" as completely as you guys here.

Preston--Thanks again for your story. You are our role model!

 

[gijanet]

Well, you certainly have our prayers..........

Well, you certainly have our prayers..........

I've logged plenty of time in the pediatric dentist's office for my younger son, Dave (I'm also a DavesMom) and can relate to pediatric dental stress! Answering your question--Matt's regurgitation is still moderate, only a tiny bit increased from last year. I was disappointed to see the LVdd still creeping up, especially as we have been on Lisinopril for a year now and it doesen't seem to have made a difference. Although the dr., rightly I guess, says you don't know what it would have been without it. I just want Matt to do what Preston did--hold off for 40 yrs or so!

for that 40 year wait! Buy lots of stock in Clairol..........heehee! On a serious note, Katie did stay at moderate for a good while.........it wasn't until we hit that moderate +, which I suspect now was really severe, but Katie's PC didn't want to have a complete basketcase on his hands. May you never see moderate +!!!! What? You have another son? Isn't it awful, but can't be helped most of the time, that our HH kids get put on the back burner? sigh! Many hugs and we will keep you in our prayers for at least forty years. Let's set a record here, why don't we?

Many hugs. J.