Enlarged Aorta New Diagnosis.

[Guest]

Hi All,
Recently had my annual Echo to see how my BAV is & although my cardio is pleased with the valve which has been stable for several years, he sent me for an MRI to have a better look at things. I'm pretty gutted to now be informed I have an enlarged proximal aorta 4.1CM at its widest point. I've been told just to carry on & he'll see me next year but I'm now really worried about it, I'd hoped to get another 10 to 20 years out of my valve but I think I'll need surgery sooner rather than later to sort my aorta.
My BAV leaks & is slightly narrowed & has been like that for years but I'm reasonably fit doing a bit of running or cycling when I can, packed in the weights a couple of years ago when I found out it could cause this type of enlargment.
I know others on here have had this so I'm after advice on how long I've got & when I should push for the op, I'm only 40 & would rather go through surgery than wait for my aorta to burst.
Any help & advice appreciated, Thanks, Richie.

 

[Ryan CA]

Hey Richie,

Most studies don't show much of a risk of dissection until well over 5cm and it can take a long time for a 1cm growth in the aneurysm. When my aneurysm was first discovered, my doctor had me get the MRI, as yours did, in order to establish a base line for growth rate. I had my aorta and my aortic valve replaced in June with an ascending aorta at 5.1 cm. I rode my mountain bike right up until a couple months prior with a blessing from my doctor. Of course your situation may be different, but his advice for me was not to do any extreme climbing but to continue riding and maintain my fitness until the surgery.

I don't believe your aorta puts in you the realm of need for surgical intervention at this point. I would say wait until you begin to feel symptoms from the leaky valve or until your doctor says the aorta has enlargened to the point it needs to be replaced.

Also, don't be afraid of the surgery man. Its a big deal, but with good preparation and good rehab, you can come through with flying colors. I did a mountain bike ride this weekend, 4 and 1/2 months after surgery, with 18 miles and 2500 feet of elevation gain and felt great. The surgery will slow you down for a bit, but you can get back and be better than ever more quickly than you think.

Ryan

 

[Richie Rich]

Hey Richie,

Most studies don't show much of a risk of dissection until well over 5cm and it can take a long time for a 1cm growth in the aneurysm. When my aneurysm was first discovered, my doctor had me get the MRI, as yours did, in order to establish a base line for growth rate. I had my aorta and my aortic valve replaced in June with an ascending aorta at 5.1 cm. I rode my mountain bike right up until a couple months prior with a blessing from my doctor. Of course your situation may be different, but his advice for me was not to do any extreme climbing but to continue riding and maintain my fitness until the surgery.

I don't believe your aorta puts in you the realm of need for surgical intervention at this point. I would say wait until you begin to feel symptoms from the leaky valve or until your doctor says the aorta has enlargened to the point it needs to be replaced.

Also, don't be afraid of the surgery man. Its a big deal, but with good preparation and good rehab, you can come through with flying colors. I did a mountain bike ride this weekend, 4 and 1/2 months after surgery, with 18 miles and 2500 feet of elevation gain and felt great. The surgery will slow you down for a bit, but you can get back and be better than ever more quickly than you think.

Ryan

Thanks Ryan,
My cardiologist has told me to carry on with low intensity cardio which I will. I'm really worried as I thought my aorta was much smaller than this & I'm now nervous about how long I've got. How long did it take for your Aorta to get to the point of being replaced, & how long will your full recovery take?

 

[cldlhd]

I know how you feel, when to pull the trigger. I'm 45 and was diagnosed in March with BAV and a root of 4.8 cm and an ascending of 4.7. The valve shows no stenosis as of now and almost no leakage so my only cause for surgery is the aneurysm. My surgeon says I'm on the " cusp" , I can wait or if I decide it's time he'll do it. Have an appt. with him tomorrow and think I'm going to get it over with. Great to hear from others out here who snapped back pretty quickly, I've cut out any weight lifting since my diagnosis but been doing light cardio almost daily.

 

[Richie Rich]

I know how you feel, when to pull the trigger. I'm 45 and was diagnosed in March with BAV and a root of 4.8 cm and an ascending of 4.7. The valve shows no stenosis as of now and almost no leakage so my only cause for surgery is the aneurysm. My surgeon says I'm on the " cusp" , I can wait or if I decide it's time he'll do it. Have an appt. with him tomorrow and think I'm going to get it over with. Great to hear from others out here who snapped back pretty quickly, I've cut out any weight lifting since my diagnosis but been doing light cardio almost daily.

I've known about my BAV for 26 years as it's always leaked so doctors can hear the murmur, but in all that time my echos have shown it's hardly changed. In fact I feel great & am much fitter than most people I know, surgery was always a strong possibility for me but now with an enlarged aorta it's a certainty. I'm worried about how soon that will be now. Hope all goes well with your surgeon tomorrow & I totally agree with you, when my time comes I'd like it fixing ASAP. I guess I'm in the waiting room now, do I start thinking about valve selection now?

 

[Ryan CA]

Hi Richie,

Sorry I didn't respond sooner. My aorta was replaced because my uni-cusp aortic valve started to go down hill and needed replacement. The aorta could have gone on a little longer if the valve was getting bad.

My recovery is nearly complete now at 5 months. It has been MUCH faster than I, or my doctor, ever thought. My left ventricle has already completely re-sized and I am cleared for all activity with the exception of heavy weight lifting. Pretty miraculous in my opinion....

 

[AZ Don]

I've read that the typical growth rate for an aortic aneurysm is roughly 0.1cm per year, but that individual results can vary widely. I've also read that once it passes 4.7cm it is likely to keep growing - that implies that it may not keep growing at 4.1cm. While your odds for ultimately needing surgery went up I doubt that it will be anytime soon. You could easily be waiting a decade. You may also want to ask your Dr. about Losartan. It has shown some promise in slowing the growth of aneurysm for those with Marfan's and there is some speculation and anecdotal reports (including on this forum) that it may do the same for those with BAV. I was not able to track the growth of my aneurysm as it was already 5.1cm when I found out I had it, as well as a BAV. I had a valve sparing aneurysm repair a year and a half ago. For me the recovery went quite well.

For reference, some good info re. aneurysm: http://content.onlinejacc.org/article.aspx?articleid=1140497

 

[Richie Rich]

Thanks guys, I do feel a bit better about things now & after speaking to my Dr I now realise we won't know how this is progressing until my next scan. Out of interest what valves did you guys choose & why?

 

[Arne]

I was in the same position as you at 20. Ascending Aorta enlarging, BAV stenoic and regurgiation more and more. I was asymptomatic all the way to the point when I decided to have surgery at the age of 30. I'm now post op 4 weeks and I'm recovering well. I'm feeling good about having it done. As you wait your heart starts to enlarge because of how inefficient it is at pumping. Now I'm eagerly waiting for it to chill out and stop pounding so hard.

Don't rush into it, you're in a good place (the aorta has to be at least 5cm or more to start worrying it will explode). The experts will let you know when it's a good time to start thinking about the surgery.

 

[Richie Rich]

I was in the same position as you at 20. Ascending Aorta enlarging, BAV stenoic and regurgiation more and more. I was asymptomatic all the way to the point when I decided to have surgery at the age of 30. I'm now post op 4 weeks and I'm recovering well. I'm feeling good about having it done. As you wait your heart starts to enlarge because of how inefficient it is at pumping. Now I'm eagerly waiting for it to chill out and stop pounding so hard.


Don't rush into it, you're in a good place (the aorta has to be at least 5cm or more to start worrying it will explode). The experts will let you know when it's a good time to start thinking about the surgery.

Thanks Arne, glad to hear you are recovering well, I'm nervously playing the waiting game. What valve did you choose & why?

 

[Arne]

I chose the On-X originally, but then as time passed and my surgery creeped up, I read many articles and studies that didn't necessarily show that the benefits they claim have been proven or were advantageous.

Right before my operation, I talked to my surgeon and told him to decide for me (he's the expert). Sometimes the bigger On-X valve isn't the answer or doesn't fit quite well. He said they were all pretty much the same and it really came done to which one would physically suit me better. He gave me the SJM Masters HP.

I think overall the differences arent drastic enough to notice a difference. I don't think you could run an extra mile if you had one over the other, haha. But definitely get the valve your surgeon is experienced with. That's what counts I think. That and getting your life back!

 

[Richie Rich]

I chose the On-X originally, but then as time passed and my surgery creeped up, I read many articles and studies that didn't necessarily show that the benefits they claim have been proven or were advantageous.

Right before my operation, I talked to my surgeon and told him to decide for me (he's the expert). Sometimes the bigger On-X valve isn't the answer or doesn't fit quite well. He said they were all pretty much the same and it really came done to which one would physically suit me better. He gave me the SJM Masters HP.

I think overall the differences arent drastic enough to notice a difference. I don't think you could run an extra mile if you had one over the other, haha. But definitely get the valve your surgeon is experienced with. That's what counts I think. That and getting your life back!

Is that a mechanical valve, how do you choose? It all seems very confusing.

 

[pellicle]

Hi

Is that a mechanical valve, how do you choose? It all seems very confusing.

for myself I chose a mechanical "this time" ... I say "this time" because it is my 3rd valve OHS and as I was under 50 I did not want a 4th surgery (and all the associated risks that go with the reop of a reop of a reop).

To me the decision matrix goes like this:
are you less than 50 ? -> strong bias towards getting a mechanical, with an increasing bias towards mechanical the lower you are under 40 - IF you have no other complicating factors

are you over 60? -> flip a coin (with a personal bias of my own towards mechanical IF you have no other complicating factors, you just may discover that being on warfarin confers as many benefits as it brings problems)

I have a page on my blog about this, you may find that worthwhile reading.

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

Ultimately both choices have pros and cons. If you wish to make an informed decision, then dig through what is "out there" (ask questions here to get opinions / interpretations of that information). Be aware that there is an amount of myth and misinformation regarding warfarin out there ... it is not in any drug companies bottom line interest to see you managing yourself well on a drug which they make no profit from (that would be warfarin).

Ultimately there are no "wrong" decisions. You have a diseased valve, which if left untreated will harm and eventually kill you. Either of the replacement options are better options than inaction.

Best Wishes

 

[Arne]

Richie, yes those are all mechanical valves. At 40, you'll probably want to go with mechanical. But there are definitely other options, I just wanted to minimize my chances of re-operation.

 

[Richie Rich]

Yes I was kind of thinking mechanical would be best for me especially as I'm terrified of having it done once without the thought of repeat surgeries. The warfarin issues concern me though and am I right in thinking mechanical can make me more prone to endocarditis? Pellicle, I've had a quick look through your blog, very informative I will read it again when I get chance. Can you eat what you like if you monitor your levels closely or have I misunderstood and how much alcohol can be consumed without risking problems. I'm an NHS patient in the UK so I'm not sure how much say I will have in valve selection but I want to be well informed when the time comes, does replacing the Aorta at the same time limit what valves can be used?
Thanks, Richie.

 

[pellicle]

Hi

Can you eat what you like if you monitor your levels closely or have I misunderstood and how much alcohol can be consumed without risking problems.

pretty much ... I don't really find that food effects me that much ... my INR varies a bit naturally, but so far (after lots of sampling even twice weekly for months and daily for weeks) am unable to be entirely sure that drinking effects me at all.

Of course if I ate a Kilo of spinnache or a box of broccoli (like that's going to happen) that the INR would go down ...

some other readings from my blog if you are interested
http://cjeastwd.blogspot.com/2014/05/inr-management-goldilocks-dose.html

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

...does replacing the Aorta at the same time limit what valves can be used?

only in so far as some valves have pre-attached aortic grafts and others don't. I have an ATS (now Medtronics brand since they bought ATS out) which came with a pre-attached graft and I understood that the On-X does too. This simplifies surgery and reduces the time taken to implant (NB a good thing).

 

[pellicle]

PS: Richie, read this post:
http://www.valvereplacement.org/for...onitoring/43179-novembinr?p=785192#post785192

 

[Richie Rich]

Pellicle, Thanks for the links, you seem to be an expert on warfarin and it's effects. I'm impressed with your scientific approach at maintaining your INR levels whilst still living a full life with fewer restrictions than I thought possible. I now think mechanical would be the best choice for anyone of my age unless my cardiologist could give me a good reason not to.

 

[Richie Rich]

Ola's post is a great read too, I didn't realise people could drink that much alcohol on warfarin without messing up their levels totally.
Thanks, Richie.

 

[pellicle]

Hi

Pellicle, Thanks for the links, you seem to be an expert on warfarin and it's effects.

Thanks, and I'm glad anything I can do to help helps, but I feel far from "expert" but having a biochemistry background and some friends (pathologist and pharmacist) to lean on for discussions regarding my research and personal testing I've learned a lot in the last 3 years.

...maintaining your INR levels whilst still living a full life with fewer restrictions than I thought possible..

indeed, the combination of self testing and being rigorous in analysis has really helped me to see past the shackles I imagined it being back before I was actually on it. I'm expecting to head back to Finland next year for another period and will probably travel around Ireland a bit by bicycle in that summer. I find it disappointing how little medical practitioners actually do know about warfarin therapy.

Best Wishes for your upcoming procedure