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RBCola

Active member
Joined
May 10, 2012
Messages
31
Location
Chicago
Hey everyone,

Glad I found this forum! It nice to see posts from other people going through the same thing.

Just a little history on myself. I'm a 28 year old medical student with a history of bicuspid aortic valve replacement who just recently got diagnosed with a 4.6x4.7 cm ascending aortic aneurysm last week :(

I was originally diagnosed with BAV at 16 years old when my pediatrician heard a heart murmur and had me get an echo. I was diagnosed with moderate-severe aortic regurgitation and was monitored initially with echos every 3 months, then 6 months, then every year because it stayed about the same. Then at the age of 22 the regurgitation got bad enough that I needed a valve replacement. I ended up geting a bioprosthetic bovine pericardial valve because I was so young and active and did not want to be on blood thinners the rest of my life. The surgery went well but 2 weeks after, I developed a fever and some shortness of breath. I went back to the hospital and was found to have an infection in my blood stream and a large pericardial effusion which required drainage. They never found the source of the infection and luckily my valve survived without any problems. I just needed to be on 2 months of IV antibiotics after discharge.

Everything was fine and dandy after that. I moved cities to go to med school and was getting yearly echos to check the valve. Then at my appointment 6 months ago my cardiologist (a cardiology fellow at the my school) told me of the association with aortic disease and BAV (which I was unaware of until recently). He suggested I get a cardiac MRI because my aorta had always been slightly enlarged on echo. I ended up getting the MRI a few months later. Last week, the cardiologist told me I had a 4.6x4.7 cm ascending aortic aneurysm and needed a repeat MRI in 6 months to monitor it. He said if it changed in size I should get surgery, if not, a yearly MRI to watch it would work and that they usually operate at >5.0 cm.

I am thankful that cardiology fellow suggested I get a MRI, but me, being a good medical student that I am, started researching more about aortic aneurysms and BAV. I found a recent article which specified a subpopulation of people with BAV that suggested surgery at >4.5 cm. To my luck, one of them was "Small Adult Body Size" which unfortunately I fall under only being 5' 4". I did the calculation based off of aortic area and height which put me at 10.8 (I think its the Cleveland Clinic equation with cutoff for surgery being >10).

I then emailed the cardiology fellow with this information late last week and he has yet to respond which has been really stressful. I've been here the past few days anxiously awaiting a response! Being in the medical field I know the bad things that can happen with aortic aneurysms and this is driving me nuts, especially since I'm in the population that should have it repaired at >4.5cm. Regardless of what he says, I definitely want to get a second opinion on this whole matter because initially he said no surgery yet, but according to my research I should be having it.

It has been helpful finding this forum and reading other people's experiences. I'm just really nervous now about the size of my aorta and having to get open heart surgery again...Even worse is that I'm about to start my last year of medical school and I've been trying to think of how I can get this surgery done, apply for residency this year and still graduate on time. Talk about stress!

I'll keep you guys updated with what happens. Thanks for your support.

P.S. I'm in the CHICAGO area, so if anyone knows a good cardiologist and cardiothoracic surgeon in the area please drop a few names!!!

Thanks,
RBCola
 
Welcome. My surgeon from UofM recommended Dr. McCarthy from Northwestern when I was hemming and hawing about a second opinion. I think there are others on here who have more personal experience with him. Good Luck!
 
RBCola - What part of town are you in? I have a great cardio on the far northwest side, and another in northern suburbs. I also have a great cardio-thoracic surgeon at Northwestern - Dr. Patrick McCarthy. I could also suggest a cardio at Northewestern. If any of these locations make sense, either ask here or PM.

I'm up on the far northwest side of Chicago, almost in Park Ridge. We have a small group of fairly close and active members around the Chicago area who try to get together a couple of times a year, so keep watching things here on vr.org for future get-togethers.
 
RBCola

Let me also recommend Dr. McCarthy from Northwestern. Today is my 3 month date from my valve replacement and everything is going great!

I would start with Dr. Bonow who heads up Cardiology at Northwestern and is a former president of the AHA (and is also a great person to talk to about your condition). He will be able to provide you guidance on next steps. If these lead to surgery you are not going to do better than McCarthy.

Let me know if I can be of any help...

Gregg
 
Hello and welcome, although obviously sorry it's not under different circumstances. You are exactly right about the consideration of body size. Retrospective studies of those with aortic dissection indicated earlier onset when shorter in stature. The Cleveland Clinic threshold is 10 and the head of their Aorta Center, Lars Svensson, has written some journal publications on the evidence and reasoning for this approach. He is also one of the co-authors of the Aorta Disease Practice Guidelines (which if you haven't already found, should obviously be a great resource for you: http://circ.ahajournals.org/content/121/13/e266.full.pdf) that includes the body size formula as one of the means of determining when to operate, as well as the other considerations (growth over time, symptoms, etc).

It seems to happen a lot around here, but it's still pretty amazing to me how different professional medical opinions can be concerning aneurysm repair timing. For reference, I was diagnosed at birth with BAV, yearly echo ever since, but my aneurysm wasn't diagnosed until 5.0 cm due to rapid growth. My cardiologist, who from everything I've heard is the most well respected and regarded in Atlanta, advised me to wait until 5.5 cm. It took me about a day to do enough self research to determine he was wrong. A few days later, my surgeon, equally top notch, actually more so, told me he would have even operated at 4.5 cm, if it had been diagnosed sooner. He then pointed me to the Practice Guidelines in case I didn't know who to believe! :)

So anyway, you may just get a different answer once you meet with a surgeon, or even another cardiologist. Of course, surgical decisions generally come down to minimizing risk, and if the surgical risk is less than the risk of dissection or rupture, then the recommedation is for surgery. Sorry to hear of your situation, obviously the timing is not great. Also, how is the condition of your bioprosthetic valve?

Best wishes to you moving forward!
 
Hi
Is your dilation on the root or above the sinotubular junction?

They never mentioned anything about the sinotubular junction on the MRI report. Only the size of aneurysm. Everything else was normal.


Thank you everybody for the recommendations. Im trying to see if my insurance will cover Northwestern doctors because its insurance through my school which only wants me to see doctors affiliated with it...keeping my fingers crossed

Sent from my SGH-T989 using Tapatalk 2
 
Hello and welcome, although obviously sorry it's not under different circumstances. You are exactly right about the consideration of body size. Retrospective studies of those with aortic dissection indicated earlier onset when shorter in stature. The Cleveland Clinic threshold is 10 and the head of their Aorta Center, Lars Svensson, has written some journal publications on the evidence and reasoning for this approach. He is also one of the co-authors of the Aorta Disease Practice Guidelines (which if you haven't already found, should obviously be a great resource for you: http://circ.ahajournals.org/content/121/13/e266.full.pdf) that includes the body size formula as one of the means of determining when to operate, as well as the other considerations (growth over time, symptoms, etc).

It seems to happen a lot around here, but it's still pretty amazing to me how different professional medical opinions can be concerning aneurysm repair timing. For reference, I was diagnosed at birth with BAV, yearly echo ever since, but my aneurysm wasn't diagnosed until 5.0 cm due to rapid growth. My cardiologist, who from everything I've heard is the most well respected and regarded in Atlanta, advised me to wait until 5.5 cm. It took me about a day to do enough self research to determine he was wrong. A few days later, my surgeon, equally top notch, actually more so, told me he would have even operated at 4.5 cm, if it had been diagnosed sooner. He then pointed me to the Practice Guidelines in case I didn't know who to believe! :)

So anyway, you may just get a different answer once you meet with a surgeon, or even another cardiologist. Of course, surgical decisions generally come down to minimizing risk, and if the surgical risk is less than the risk of dissection or rupture, then the recommedation is for surgery. Sorry to hear of your situation, obviously the timing is not great. Also, how is the condition of your bioprosthetic valve?

Best wishes to you moving forward!

That practice guidline is exactly the one I read. The valve is holding up great so far according to my recent echo and the MRI. But i'm wondering when I need surgery if I should just have yet swapped out for a mechanical so I don't have to go through OHS again

Sent from my SGH-T989 using Tapatalk 2
 
Welcome aboard!

Like you, I'm small (only 4'10 1/2" and thin) so my 4.4 cm ascending aneurysm scares me - especially since I've had two previous surgeries. My cardio has mentioned the 5 cm threshold for repair but I printed out the information from Cleveland Clinic to take when I have my appointment in a couple of weeks. It just makes sense that a 4.4 cm would be worse on a short person than on someone who's tall.

Personally, I would suggest a mechanical valve at your age. I was 42 when I had my AVR and chose mechanical to (hopefully) avoid another valve replacement. The coumadin hasn't been a big deal for me at all.

Best of luck. Take care and keep us posted.
 
Hi
Is your dilation on the root or above the sinotubular junction?

This is a great question, by the way. Also, and this is just a personal opinion, I would really consider replacing your tissue valve with Mechanical so that hopefully you do not need a surgery again. Also, if you have only ascending aortic aneurysm, ask your surgeon to re-inforce your root with felt strip so that it does not develop aneurysm down the road.
 
Please don't go nuts over your aneurysm. My reading of the Cleveland Clinic index, which says you are a surgical candidate, is that it doesn't mean that you are in any serious immediate danger. It means the risk of having an event exceeds the risk of surgery; therefore, surgery is "reasonable". The risk of surgery is quite low. Hence...you get it.

Also, I recommend this paper to further your knowledge of the aortopathy of BAV.
http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

Finally, the evidence for the body size factor is very limited (relatively small sample of BAV patients - see chart below; note low number of short people, WIDE scatter, and that NO statistical analysis was done at all) and that criteria is not as widely accepted as the more general size cut-offs. So, don't get excited if your cardiology fellow and even well known experts do not concur with it. Still, as others around here have said, I'd rather be a little too early than a little too late.

------------------------------------------------------------------------------------------------------------------------
Relationship between aortic cross-sectional diameter and height at the size at which the aortic dissection was noted. MAZSZ, Maximum aortic size.
From: http://jtcs.ctsnetjournals.org/cgi/content/full/126/3/892
3006081.892.gr1.gif
 
Please don't go nuts over your aneurysm. My reading of the Cleveland Clinic index, which says you are a surgical candidate, is that it doesn't mean that you are in any serious immediate danger. It means the risk of having an event exceeds the risk of surgery; therefore, surgery is "reasonable". The risk of surgery is quite low. Hence...you get it.

Also, I recommend this paper to further your knowledge of the aortopathy of BAV.
http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

Finally, the evidence for the body size factor is very limited (relatively small sample of BAV patients - see chart below; note low number of short people, WIDE scatter, and that NO statistical analysis was done at all) and that criteria is not as widely accepted as the more general size cut-offs. So, don't get excited if your cardiology fellow and even well known experts do not concur with it. Still, as others around here have said, I'd rather be a little too early than a little too late.

------------------------------------------------------------------------------------------------------------------------
Relationship between aortic cross-sectional diameter and height at the size at which the aortic dissection was noted. MAZSZ, Maximum aortic size.
From: http://jtcs.ctsnetjournals.org/cgi/content/full/126/3/892
3006081.892.gr1.gif

Hi Bill,
Thanks for those articles and that data. Its helped ease some of my concerns and anxiety. Its helped to go back to the original paper to see the data that the recommendation comes from. I see what you say about the small sample size and relative variability.

Sent from my SGH-T989 using Tapatalk 2
 
The cardiology fellow just responded to the email I sent him about my aorta size and height.

Its easier just to quote what he said..

"I think your situation is a little tricky because this would be your second sternotomy (little bit higher risk surgery than the patients included in most trials). Your measurements are right on the borderline (even when indexed to BSA or height). Additionally, the studies referenced by the review article you sent have relatively few patients so difficult to form firm conclusions. I actually spent some time discussing your case with the chief of cardiology; normally, surveillance imaging would be done at yearly intervals, however since you were on the borderline, we thought that an earlier study would give us two data points and could provide some reassurance....I am always in favor of the patient having the most complete information so that you can make an informed decision, so I think that having you see Cardiothroacic surgery would be entirely appropriate. Even if they do not think you need intervention at this point, at least you will be on their radar and we'll have an additional person thinking about your case."

Seems like a pretty logical thought process. I guess I'll have to wait what CT surgery says. In the mean time, I'm also going to get a second opinion.

-RBCola
 
RB - Seems reasonable to have CT surgery involved, even if no intervention yet.

UIC? I knew it way back when it first opened. I was a student there from 1965-69. How it has grown!

Too bad I have no referrals to offer there. My cardio suggested surgeons at Northwestern and Loyola.
 
Hi, I started working on my Masters in Mental Health Counseling two months after my surgery. I could have went back a month after. I was pretty spaced out for the month of August (had my surgery late July). I wasn't really at the top of my game until probably January the next year. I don't know if it was the beta blockers or my tens of thousands of PVCs I have a day but if you really want to do it you can.
 
Hi
Is your dilation on the root or above the sinotubular junction?
Can I ask what he implication is of having the dilation on the root or above the sinotubular junction? I ask because my 4.4cm dilation is on the aortic root.

Thanks :)
 
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