The clock is ticking and I guess we will be replacing BAV this year

[TheGymGuy]

I guess it is time to get my BAV (bicuspid aortic valve) replaced pretty soon as well.

Let me start out by saying "Thank You" to everyone for the wealth of the information that I learned from your posts, and also thank you to all for sharing your stories and giving me the courage that I need. This topic and thought used to scare the bejesus from me, and look at me now, I can freely converse about it.

Here is my story. I am in my early-mid thirties and you could say I am in pretty good physical condition at the moment. I was diagnosed with BAV and Stenotic Aorta at birth. We monitored the condition yearly with echo-cardiograms. AVA (Aortic valve area) went from somewhere around 1.8-cm^2 to 1.1 cm^2 in past 11-12 years. Recently had a cardiac MRI to checkout aorta for aneurysms. It was found that I do have aortic aneurism in the ascending aorta and the outer dimensions of the aorta is around 45mm (inner is 41x41mm). So in combination with BAV it is my doctor's opinion that we need to fix things up this year.

Here are some data in case you are interested (this is from Cardiac MRI):
- severely dilated left ventricle, though normal global left ventricular systolic function (ejection fraction 59%) and left ventricular mass at the upper limits of normal.
- ascending aorta at the level of the right pulmonary artery 41mm x 41mm diameter
- descending aorta at the level of the right pulmonary artery 23mm x 21mm diameter
- Aortic Root Measurements:
-- annulus: 34mm
-- ascending aorta: 41 x 41 mm
-- aortic arch: 30 x 30 mm

After reading this site for several years and due to my affinity for lots of physical activity, including the sport of powerlifting which I take to very very seriously, I am 99% sure that I will be going with On-X valve for my aortic valve replacement. Somewhere along the line I also made an assumption, and this might be a silly one that I would get a full dacron graft for ascending aorta, which would be attached to the new valve.

I met with Dr. Siegenthaler from Suburban Hospital in Bethesda, MD today, and while he never installed On-X before, he seemed to be pretty comfortable putting it in, and he also suggested that it would be better to leave aortic root intact with my own attachments of right and left coronary arteries and just replace the part of aorta with the aneurysm which would end shortly before aortic arch, this way it would be a simpler procedure.


I have several questions for you guys and gals:
1. Are there any recommendations for great surgeons in MD/VA or surrounding areas that have lots of experience with On-X valves and maybe did some of your or your friends/loved-ones surgeries? I would love to get a second opinion and can provide my latest ECHO and CardiacMRI data if needed.
2. What are your thoughts (non professional, of course ) on leaving the aortic root with right and left coronary arteries intact and just replacing the part of ascending aorta with the aneurysm instead of the whole thing? This is currently the surgeon's suggestion.

Thanks,
TheGymGuy

 

[newmitral]

Try Johns Hopkins

Try Johns Hopkins

My On-X valve is a mitral valve, rather than an aortic, so I can't comment on the question about the aortic root options.

Regarding your question about other surgeons in the DC area that you might try for second opinions, I highly recommend Johns Hopkins up in Baltimore.

The surgeon that did my operation was Dr. Shah at Johns Hopkins. My situation was completely different from yours, as my surgery was an unplanned emergency valve replacement as a result of endocarditis. I was in no shape to do much research at the time, and didn't even know ahead of time that my illness was heart related. They only made the diagnosis of endocarditis the day that they checked me into the hospital for tests, and my heart valve gave out that same night. I never even met Dr. Shah until I was at death's door being kept alive with an arterial pump for a few days until they could fit me into the surgery schedule. Nevertheless, he did a great job. All the staff at Johns Hopkins that I interacted with, both during and after my surgery, were excellent. My experience is that you can't go wrong with any of the surgeons at Johns Hopkins, and you would be OK picking most any of the cardiac surgeons there for your second opinion.

I was asked about the tissue versus mechanical valve choice, and I opted for the mechanical. The choice to go with On-X was made by the surgeon. I knew nothing at all about heart valves at the time. But, from what I have learned since, the On-X was the best valve he could have picked for me.

Best of luck with your surgery.

 

[Jkm7]

Sorry to hear you are facing surgery soon and totally agree with the 'newmitral' suggestion to get another opinion at Hopkins. It is one of the finest heart centers in the country and if it is reasonably close to you in MD, it might be a good idea to speak with a surgeon there.

Let us know how it is going for you.
All Best Wishes.

 

[TheGymGuy]

Dr. Shah, was also recommended by On-X rep that I called up. They said he installed 5 On-X valves, which is the highest number of valves in MD so far. Let me call and setup a consult.

 

[Superman]

When I had my replacement in late 2009, On-X didn't have a one piece valve/graft available so I stuck with St. Jude. If they have one now - that's be pretty cool. I didn't like the idea of two seperate pieces. Just seems like more stitching for the surgeon and more places for things to go wrong.

My concern with only fixing the currently damaged part (and I'm only speaking for my own understanding of our congenital defect here), is that BAV tends to also include a broader systemic connective tissue disorder. I would be worried about an aneurysm forming later in my remaining native ascending aorta and root. I would want them to just replace it while they were in there instead of potentially inviting another surgery a few years down the road. Especially if your going with mechanical.

But that's just me. Your surgeon might give me several reasons why my concerns are unfounded - but that wouldn't help me sleep at night. Or maybe it would - depending on what data was presented! As they say - every situation is different. For example, my carotid arteries didn't join at two seperate points in my aorta. They left the aorta at one spot, the branched off in kind of a 'V' or a 'Y' with a double wide base. Surgeon told me that was rare - but not a concern. I also had two spots of scar tissue that led to bulges in my aorta where the heart lung bypass machine connected from my previous OHS for only the valve. There may be something about your anotomy or presentation that is leading to your surgeons recommendation.

 

[sarahsunshine]

My step son just had his Ascending Aorta, and Aortic valve replaced, along with his mitral valve. Both valves with On-X. The surgeon did exactly what your surgeon described, with replacing the ascending aorta, and the valve, but not the aortic root. I quizzed him about it afterwards (we didn’t know about the aneurism prior to the surgery), and he said that the aortic root tends to heal itself very well once the pressures are removed with the replaced valve. I haven’t done the research on this particular aspect, but I believe him since he’s done tons of these (he only does On-X, and he’s in surgery practically daily. He’s also supposed to be one of the best world-wide).

As well, from some of my reading on this site, there have been a few people with some weird annoying reverberations and noises going on with their aortic valve-root-arch combination. St. Jude doesn’t seem to have an answer for it, or a cure.

In any case, I would go for a second opinion and find out what information you can.

 

[SB42]

TGG,

I am 42 and recently had my bicuspid AVR on Jan 18, 2012 at the Virginia Hospital Center (Arlington) - www.virginiahospitalcenter.com. The surgery was performed by Dr. John Garrett - http://www.virginiahospitalcenter.com/aboutus/vhc/executive/bio_a.aspx. He is exceptional and was trained under the renowned pioneer of Dr. Cooley at the Texas Heart Institute. If you are open to watching the actually procedure, here is a link to the surgery and it is from 6 years ago under the direction of Dr. Ott while Dr. Cooley provides commentary - http://video.google.com/videoplay?docid=-6218906821548692571#. My pain level has been 1.5 - 2.5 (10 being worse) and have already started weaning off of the pain meds / narcotics. I was able to place phone calls to family the same evening as my surgery. I was in the hospital for 3.5 days and received the best care and customer service throughout the entire process. VHC is a state of the art facility! I even accidently bumped into the Carl Bahnlein, COO, one morning and he stopped in his tracks and spoke with me for 20 minutes after I complimented the facility. Carl took it a step further and came down on the morning of my surgery during pre-op to wish me luck. I also had my cardiac catheterization there and received the same level of service. If you have options, I would highly recommend getting connected with Dr. John Garrett and his support staff. Please let me know if you need any specific contact info and I will be happy to provide. I am cleared to drive tomorrow (less than the typically four weeks). You are going to do very well and will be on the road to a speedy recovery (as long as you follow Dr's orders - lol, which can be hard for athletic type personalities like ours. Good luck, sir.

Best,

Scott
BAVR - 18 Jan 12 - Virginia Hospital Center - Dr. John Garrett

 

[Superman]

I quizzed him about it afterwards (we didn’t know about the aneurism prior to the surgery), and he said that the aortic root tends to heal itself very well once the pressures are removed with the replaced valve. I haven’t done the research on this particular aspect, but I believe him since he’s done tons of these (he only does On-X, and he’s in surgery practically daily. He’s also supposed to be one of the best world-wide).

This is where I tend to get the impression that not everyone in the cardiology profession has embraced the notion of broader systemic connective tissue disorder in BAV patients. My valve was replaced at a young age (17 - 18), and I didn't even develop any indication of an aneurysm until I was 35 (aortic root went from 2.6 cm in 2006 to a 4.9 cm aneurysm in 2009) - well after my new valve would have alleviated any pressure.

When I grew up - a potential aneurysm was never even mentioned to watch out for. I was always given the impression that once the valve was replaced - the mechanical will last forever, I'd be "normal" and not have to be monitored as close. Based on that, I went a good five plus years w/o seeing a cardiologist and another seven or more after that. Just had my PCP monitor my INR and that was it. Wasn't till a prolonged episode of Afib landed me in the ER for a cardio-version in 2006 that I started going back annually and three years later the aneurysm needed to be repaired.

I've learned much more about my condition in the past six years than in the previous 33.

 

[sandpoet]

Dear TheGymGuy

I read your blog with interest. First, being from California, I can't make any recommendations in Maryland. I know a fantastic Cardiac Thoracic guy in Boston(Harvard) who I can provide contact information, if you like.
Next, despite my cardiac surgeons recommendation not to lift weights again, except light weight and limited reps, I researched that argument and found information refuting that recommendation. I began lifting again two months post surgery in 2008. I was doing chest work on the Hammer Strength equipment to avoid damage to my sternum, but progressed to free bar at the 6 month mark. I went from 149 lbs to 190 lbs of muscle within six months. The GP who originally diagnosed me told me soon thereafter that I had absolutely no limitations and that fear of malpractice leads the cardiac surgeons to err on the conservative side. I used to be a competitive powerlifter/bodybuilder, but that is when I was in my 20's. I am now 57 and bench pressing 300, instead of my youth when I was pressing 400. It's more about fitness now. My big struggle is aerobic capacity. It's like starting all over again. I was running intervals and times of 6:30 in the mile at 185lbs. Now, it is difficult to finish a mile. Back to my pre-running fitness.
My medical dilemna was bacterial endocarditis along with a bicuspid valve. I had valve failure and a stroke within ten days of hospital admission. The 25mm St Judes valve failed in rehab and I returned to Stanford 3 months later for a 23mm St Jude. Four months in hosp/rehab.
Your situation seems more complex, so I advise you to get the "best of the best" advice. I have no fear and I am driven to return to my pre-op fitness. Good luck with your health isues and you are lucky to know ahead of time versus emergently, like I experienced. Cheers, David

 

[TheGymGuy]

Thank you everyone for the comments and support. I will post up more questions shortly.

 

[Lynlw]

Is Suburbian partners with Hopkins? I also would reccomend getting a 2nd opinnion from Hopkins. I don't know if it helps, but US News now ranks hospitals by location that is also broken down by specialty, both ranked high nationally or local http://health.usnews.com/best-hospitals/area/baltimore-md/specialty

Like others I would recomend getting a second opinion especially since you have quesions about replacing the root or not. I was wonderring since you have an annuerysm and BAV, so chances are might have a connective tissue disease, I was wonderring if your cardiologist or surgeon said anything about powerlifting?

 

[TheGymGuy]

Lyn,
Thanks for the usnews link. Wow, there is a lot of data about hospitals there. Almost makes it a no brainer to go with Hopkins. Only negative against it (based on a rumor, of course) is that it's a teaching hospital and some of the work might be done by residents.

Superman,
I completely agree. I wonder if there is a way to have tests for systemic connective tissue disorders and have proof that it would be best to just replace aortic root and ascending aorta up to the arch. Though, replacing root sounds complicated as re-attaching of right and left coronary arteries (little things that they are) sounds somewhat complicated. Unless, the conduit comes with graft left and right arteries for easier attachment.

Sarahsunshine,
I will be meeting with Dr. Shaw from Hopkins and I will make sure to discuss his exact thoughts on replacing of root and aneurysm vs just the aneurysm. It seems all surgeons have their preference, and second opinion will really help here.

SB42 (Scott), it is so great to hear that you are on the way to recovery. Placing phone calls same day and driving less than 4 weeks after? You must be genetically gifted to recover from this sort of thing. Thanks for your links to surgery videos. I watched and read about this procedure alot. At this point I could even narrate one.

Finally, Sandpoet (David), I've read lots of your posts on this board. Also, thanks for responding to my email here - much appreciated.


Quick Update for you folks is that, the first surgeon I spoke to mentioned that after surgery and proper recovery time, i will be able to return to my sport of Powerlifting and compete further. I still plan to set records and am going with an artificial valve in order to continue exercising, staying healthy and living longer.

 

[Boston Tiger]

Lyn,
Thanks for the usnews link. Wow, there is a lot of data about hospitals there. Almost makes it a no brainer to go with Hopkins. Only negative against it (based on a rumor, of course) is that it's a teaching hospital and some of the work might be done by residents.

Don't worry about the teaching hospital part. I went to a teaching hospital for my surgery, and my surgeon assured me that he would be throwing all the stitches during my operation. There were a lot of doctors hanging around for the little bit of the pre-op that I remember and in the cardiac ICU when I woke up, but they were always accompanied by the teaching doctor who was in charge. I found it interesting to watch how the head of the ICU was training his fellows, and told him so when we had some time alone.

 

[TheGymGuy]

UPDATE from today.

I met with Dr. Shah from Johns Hopkins hospital. He was my choice for second opinion and he also installed 5 On-X valves. Just like meeting my first surgeon, Dr. Siegenthaler from Suburban Hospital, I really enjoyed meeting Dr. Shah as well.

Dr. Shah looked over the Cardiac MRI results and the CD with all the pictures, etc. He also measured my ascending aortic aneurysm to about 42mm. He said that if I am truly asymptomatic we could wait for surgery until aneurysm gets to 5.5-6cm. Of course, since I am powerlifting he would recommend doing the surgery at 5.0cm or when I have symptoms, whichever comes first. He suggested a CT scan of aortic aneurysm in 6 month to see if it has progressed.

Basically, his message was that I do not have to do the surgery now unless I am ready and want to, given that I am asymptomatic and appear healthy at the moment.

My question now is where do we go from here? 1st Surgeon wants to fix things asap and is genuinely concerned for my well being if I keep on powerlifting with my current condition, the 2nd surgeon says its ok to wait some more.

I feel that I might need a 3rd opinion. Should I set up a consult for 2nd, scratch that, 3rd opinion with Virginia Hospital Center or someone else at Johns Hopkins?

EDIT: 2nd surgeon confirmed that we can most likely spare the aortic root and once any surgeon is in there they can make a judgement call. If the root looks healthy they would keep it as is and possibly reinforce it with something outside and then replace the aneurysm.

 

[ElectLive]

Dr. Shah looked over the Cardiac MRI results and the CD with all the pictures, etc. He also measured my ascending aortic aneurysm to about 42mm. He said that if I am truly asymptomatic we could wait for surgery until aneurysm gets to 5.5-6cm. Of course, since I am powerlifting he would recommend doing the surgery at 5.0cm or when I have symptoms, whichever comes first. He suggested a CT scan of aortic aneurysm in 6 month to see if it has progressed.

Basically, his message was that I do not have to do the surgery now unless I am ready and want to, given that I am asymptomatic and appear healthy at the moment.

My question now is where do we go from here? 1st Surgeon wants to fix things asap and is genuinely concerned for my well being if I keep on powerlifting with my current condition, the 2nd surgeon says its ok to wait some more.

I feel that I might need a 3rd opinion. Should I set up a consult for 2nd, scratch that, 3rd opinion with Virginia Hospital Center or someone else at Johns Hopkins?

As you're probably already aware, BAV is a genetic condition associated not only with the development of aortic aneurysms but also with dissections at smaller diameters than usual. A "golden rule" used for BAV patients for quite some time has been to operate at 5.0 cm, so first of all, I'm surprised to read the initial remarks of waiting until 5.5 cm and shocked to read 6.0 cm (although it appears that's in a non-powerlifting scenario?). The relatively recent 2010 guidelines indicate surgery between 4.0 and 5.0 for asymptomatic BAV patients depending on several circumstances. I had no symptoms at 5.0 cm, and this is very common even at larger sizes. Did Dr. Shah give you the risk of aorta dissection/rupture if you wait until higher than 5.0 cm? It's almost always higher than the risk of the surgery itself. Also, heavy lifting does significantly raise thoracic/arterial pressure, and many experts believe this could trigger dissection or rupture.

Anyway, I know it's probably frustrating getting two polar opposite opinions. Equally tough is volunteering for a surgery one surgeon doesn't believe you need. But even the best surgeon in the world cannot predict with absolute certainty at what size your, or any other patient's, aorta will in fact dissect. The only certain thing is you absolutely don't want it to happen.

If it were me, I think I'd be looking for another expert opinion, from another location, perhaps to include a focused review of your power lifting. I think you may be just fine post-surgery, but I'd personally be a little worried about doing that now. Sorry, don't mean to discourage, just feel like caution and aneurysms should always go hand in hand. Best wishes moving forward. I have nothing but positive things to say about my own return to normal, so whenever it happens for you, you should plan on the same.

 

[TheGymGuy]

ElectLive, thanks so much for your post. Might you have a link to recent 2010 or 2011 guidelines which indicate surgery between 4.0 and 5.0 for asymptomatic BAV patients?

I believe that my risk of surgery is lower than other risks, and this has helped alot with my decision.

In all honesty I am leaning towards the first doctors opinion, but still trying to get some research and learning done, if you know what I mean.

 

[ElectLive]

GymGuy - One more thought...since I know seeking out 2nd and 3rd opinions is not always the easiest thing thing to do, or at times even that productive. There might be a way you could get a quick broad-brush "consult" from the comfort of your own home on big picture stuff (surgery timing, lifting restrictions, and maybe even the root issue). Cleveland Clinic does webchats peridocially with many of their top-tier surgeons where they answer patient specific questions such as yours. As luck would have it, surgeons from their well known Aorta Center (specializing in connective tissue disorders and Marfan's) will be doing two relevant webchats in the next month. The first topic area is "Aorta Disease and Treatments" (http://www.clevelandclinic.org/health/ChatReg/ChatPage.aspx?ChatId=1276) and the second is "Valve Disease - Diagnosis, Interventions, and Surgery" (http://www.clevelandclinic.org/health/ChatReg/ChatPage.aspx?ChatId=1363).

The first is co-hosted by Dr. Matthew Eagleton and Dr. Eric Roselli (both connective tissue specialists, Eagleton a vasular surgeon, and Roselli a thoracic and cardiovascular surgeon) and the second is co-hosted by Dr. Lars Svensson - who is the well known Director of the Aorta Center and also one of the writing committee members of the guidelines I mentioned above (see page 22 (21 of this executive summary of the guidelines) here: http://content.onlinejacc.org/cgi/reprint/j.jacc.2010.02.010v1.pdf for the reference to BAV intervention - there is also a lot of other good information throughout the full guidelines: http://circ.ahajournals.org/content/121/13/e266.full.pdf+html). Of the two webchats, probably the first on March 5th is more direct to your situation. Anyway, unfortunately I have no personal experience with these surgeons, although many here have, but I think it's fair to say they would fall in the "best of the best" category.

In past webchats, I have submitted a few questions, and most of them were answered, usually the ones submitted early (up to a day ahead) got the best response I think. As an example, here's a transcript of a webchat Dr. Svennson did on Aortic Aneurysms last year: http://my.clevelandclinic.org/heart/webchat/1207_aortic-aneurysm.aspx. If you should pursue this, you may want to include your height and weight in your question because they normally evaluate aorta repair timing based on size ratios at Cleveland, not just fixed measurements such as 5.0 cm.

Now, there's no guarantee any of your questions will be answered, but it only takes about 10 minutes to register and submit questions, so I think definitely worth a shot for an easy "consult" of sorts. Obviously, if you want to be more direct in your approach, you could always contact Cleveland Clinic directly to arrange a formal evaluation. But you'll have to decide how set you are on staying somewhat local. I'm not familiar at all with your area...there may be other well qualified surgeons much closer. Anyway, just thought I'd mention. I do think it's important to consult with a connective tissue / aorta specialist, particularly in the context of your power lifting. For what's it's worth, though, Jeff Green (forward for the Boston Celtics) recently had aneurysm repair at the Cleveland Clinic, and all communication since has indicated a full return to his athletic career. Granted, he's not a power lifter by any means, but obviously you can't play his position in the NBA without some degree of heavy weightlifting.

I understand completely about wanting to do more research and self-education. I've done an enormous amount since my surgery, and only wish I'd been able to do so beforehand.