24 year old with BAV

[cewilk]

Good evening everyone.

Almost a year ago I found out I had BAV, ascending aorta about 4.3cm, moderate AR, and a dilated left ventricle. I am in the military and recently was not cleared medically to move to my new overseas duty station because of this.

I had a MUGA Scan a week ago and will be seeing the doctor again in 4 days to talk about the results and the next course of action to take with this.

The doctor informed me that I may have to go ahead and get this fixed. If so, he said I would have to get a mechanical valve because I am only 24, and getting a biological valve would not be the best route to take because I would have to get multiple replacements throughout my life. This highly concerned me because I know I would be on blood thinners the rest of my life and the side effects would have a huge impact on my lifestyle, and would probably medically discharge me from my job.

I recently read about a valve replacement procedure called the Ross procedure. My doctor has not mentioned this as an option, but it seems like a great option for a young adult desiring to maintain a very active lifestyle without needing permanent medication and blood testing.

So my questions are: Does anyone have any personal knowledge/experience about the Ross procedure? Is a mechanical valve really a better option for me considering I am only 24? Despite the severity of the condition, I feel well and am not experiencing any noticeable symptoms.

I have to deal with all of my medical appointments through military providers, so I can't just go and get second opinions from private practice facilities or civilian doctors. I am just worried that the doctor will recommend me to have surgery that I don't think I need just yet.

Thanks for taking the time to read and any info or advice!

 

[normofthenorth]

cewilk, if you search here for Ross Procedure, you'll find a lot of discussions about the pros and cons. I'm no expert in it, but I've never seen any solid evidence that it (the transplanted pulmonary valve in Aortic position) lasts any longer than a non-human tissue valve. I've seen so many similarly "logical" or "reasonable" procedures in medicine that were finally tested scientifically, and failed those tests, that I've gotten very suspicious of procedures that aren't evidence-based. The evidence may be out there, but I haven't seen it. That extra durability is the payoff, in return for a more complicated operation, and two valves that have to recover transplantation instead of just one -- so if it's maybe not there. . .

 

[karla]

Good evening everyone.

Almost a year ago I found out I had BAV, ascending aorta about 4.3cm, moderate AR, and a dilated left ventricle.

One thing that jumped out at me about your post is that you already have an enlarged left ventricle. One of the reasons for surgery - even if you feel well - is to prevent permanent damage to your heart. I might be worthwhile to talk to your doc about this aspect of things. Just a thought....

 

[Fundy]

Another option would be to go with a tissue this time and a mechanical later. At 24 years of age, later may come fairly fast.

As far as worrying that a doctor is recommonding surgery you may not need just yet. It seems that an aneurysm of 4.3 cm in someone with a BAV is approaching a danger level. Seems like 4.5cm and up surgery gets recommended.

Also with only moderate aortic regurgitation, its possible that valve may even outlast a tissue replacement as I think many have gone more than a decade after moderate diagnosis before valve replacement surgery needed.

 

[dick0236]

Hi cewilk. welcome, you will find a lot of info, on this forum, regarding THIS question. Valve replacement is not a cure, it is only a "fix".

Mechanical valves normally last a long time, maybe lifetime, but require an anti-coagulant(not a blood thinner) to delay the clotting of blood, by a few seconds. Normally, most patients on warfarin, find the drug easy to take and monitor.

Tissue type valves, normally do not require anti-coagulants, but can not be expected to last indefinately, especially in a young active person. At 24, you should expect, from what I have read, to have the valve replaced every decade or so. That's a lot of surgeries to reach old age, although, at some point, you'll probably opt for a mechanical.....or science may come up with a new solution.

Personally, I have found taking a daily pill easier than having, maybe, four or five repeat surgeries.....if that many where even possible. BTW, how did you get in the service without the murmur being detected at your pre-service physical exam?

 

[TheGymGuy]

cewilk, I am a very active person who has just gotten a mechanical valve. Ross is a great procedure too, though, technically very complicated. Consider this, there will be 2 valves that they will mess with instead of one. Best case scenario it will last for several decades (there is not evidence for life time lasting yet, except for maybe when it is done in a young child and even that has limited evidence), and worst case scenario you will need 2 valves replaced much much sooner.

I can tell you that taking anti-coagulants does not limit your lifestyle much. You just need test your INR often enough (possibly weekly) and stay in the suggested range. As you read more, you will see that slowing down clotting time from say 12 seconds to 22 seconds is not that big a deal. You might not want to get a serious head injury, but most people continue biking, motorcycling, soccer, etc. They'd probably advise against american football or rugby.

On to the left ventricle. There is plenty of research about athletes (I consider most military personnel very athletic) having enlarged and hypertrophied left ventricle. The goal is to keep that under control or when that muscle gets too hypertrophied, things like heart-block can happen or irreversible heart muscle damage and subsequently heart damage can occur. This whole conversation pertains to BAV, so just keep that in mind. Ok, so when they say that that you have LVH (left ventricular hypertrophy) you need to find out if its moderate or severe. If severe you want the fix asap to allow your heart to remodel. Shoot, even in moderate LVH it would help to get surgery done sooner than later to let your heart remodel back to a healthy size and state. By surgery I am talking about BAV replacement. I'm a competitive and drug-free powerlifter. My aortic valve area was 1cm^2 before the surgery, I had moderate LVH and ascending aortic aneurysm close to 4.8cm. Now, after the surgery my Aortic Valve Area is 2.7cm^2, the aneurysm has been fixed, and I can already feel my heart beating a lot lighter (note: my resting heart-rate of 60 before surgery had my heart thump agains my side chest wall) and hopefully the LVH will reverse itself as needed. Just think that your average healthy adult, depending on body size will have aortic valve area between 2 - 3 cm^2 and also be aneurysm free. Aortic Aneurysm is a very dangerous condition to have since in case of dissection or bursting the death is pretty much imminent unless you are very close to the hospital and they are ready to operate. The survival rates for when "it is too late" are very freaking low.

One last thing for this post from me is the following. My cardiologist and surgeon told me that once my BAV and Aneurysm were fixed, after the recovery period, I should expect the same or better lifestyle than before surgery. Also, my life-expectancy would be same as that of my clone with a healthy aortic valve. As soon as I am cleared I will try to go back to powerlifting or hope to set more national records.

Hope this helps.

 

[Lynlw]

HI, Sorry to hear you ned surgery and on top of everything else, you have to consider what would be the best valve choice to be in the Military. There have been a few other people in the military and i BELIEVE ones that hope to stay in service or join, got tissue valves because it gave them the best chance of staying in. With the thought as fundy mentioned getting a tissue valve now and then mayb getting a mech valve when that needed replaced, depending what things looked like when that time came. ce as far as i know , a mech valve and coumadin would disqualify you
Yes the ross procedure would also be an otion, but i would definately get opinions from surgeons who have ALOT of experience so would know if you were a good candidate. Some people with BAV are not good candidates because their pulm valve alsomight be effected with the weaker tissue that CAn go along with BAV, etc. I dont have personal experience with Milatary insurance experience, just what I know from various heart groups,As for which hospitals, arent you able to go to other centers that take the insurance? especially if the military ones dont have alot of experience in what YOU need?
This link goes to one of the guys in the Air force, I believe he also got in touch with a couple others who had valve replacements and in the services http://www.valvereplacement.org/forums/showthread.php?37854-BAVlogger!-) I would PM him and he could probably share what he learned looking into everything
Good Luck and thank you for all you do

 

[Duffey]

If you want to stay in the military, I think you will have to go with a tissue valve. I looked into the Ross procedure prior to my valve replacement, and although I am a proponent of the procedure, considering your limitations on medical facilities/cardiothoracic surgeons as active military, I don't think the Ross would be a viable option for you. Dr. Paul Stelzer, of NYC, is the surgeon I discussed the Ross with. If you do a forum search using his name, you will find a great deal of information about the Ross procedure.

After you get the results from the MUGA, you should have more information with which to work with. Perhaps replacement can be postponed for a bit. The rate of enlargement of the aorta is of major concern, but you won't know how fast it is growing until you have prior test results to compare it to.

If you can get copies of your tests, I think I would see about sending them to a surgeon not in the military provider system, to get a second opinion. I don't believe it will cost that much to do. You'd have to pay for it yourself, but it would be worth getting another opinion.

I hope you keep us up to date on what you find out. Our youngest son was unable to enter the military due to his own BAV. In answer to Dick's question about why your condition wasn't discovered prior to your entering the service, I had no murmur until I reached the age of 49, and it wasn't diagnosed as a BAV until I had replacement surgery. After that, we had our children tested and found out that our youngest son, now 26, also has a BAV even though he has no murmur. Our 3 year old grandson also has a diagnosed BAV with a murmur. Not everyone presents with a heart murmur before discovering they have the condition.

 

[cewilk]

Thank you all for the replies. I will be sure to keep y'all updated with the situation.

On a side note...
The medical prescreening that I had prior to joining the Marine Corps didn't involve any in depth heart testing. I'm not sure how the doctor didn't notice anything unusual with the sound of my heartbeat, but nevertheless, it went unnoticed. The way my BAV was discovered was from an incidental finding during a hospital visit that I had one weekend last August. The staff decided to do an echo, not sure why, but that's how it was discovered. If it wasn't for the injury I had that lead to the hospital visit, then I still wouldn't know to this day.

@GymGuy:
reading your response definitely helped me feel better about being able to maintain a high level of activity despite potentially needing a mechanical valve with life long medication. However, I am almost certain being on life long anti coags would medically separate me from the military. I need to research that more.

 

[Glen Swan]

Yes the ross procedure would also be an otion, but i would definately get opinions from surgeons who have ALOT of experience so would know if you were a good candidate. Some people with BAV are not good candidates because their pulm valve alsomight be effected with the weaker tissue that CAn go along with BAV, etc. I dont have personal experience with Milatary insurance experience, just what I know from various heart groups,As for which hospitals, arent you able to go to other centers that take the insurance? especially if the military ones dont have alot of experience in what YOU need?

This.

My son has BAV and he is almost 3 months old. Although he is not at the stage of repair or replacement, we have already discussed options just in case. The procedure you mentioned is also something we discussed because if I'm not mistaken, taking the pulm valve is the recommended procedure for newborns/infants simply because it grows with the patient. Our doctor told us the same as mentioned above, it's pretty much like a tissue valve and will have the same 5 to 10 year estimate of expectancy. Although it could go longer, say 15 to 20 years, the averages say otherwise. Also, when you take the option of the pulm, they also must replace that as well (if I'm not mistaken). Our doctor also said that would cause problems as well like leakage. The only difference is that the leak or complications it may provide is a worthy tradeoff in some eyes instead of the mechanical.

But honestly, it sounds like that procedure or whatever is similar to it is a great option for kids. I don't see the benefits of not just going with a tissue if you were older and didn't mind further operations later in life as opposed to taking your pulm valve.

Summary of what our doctor mentioned

The Ross procedure using pulmonary autograft provides excellent hemodynamics flow characteristics, is capable of growth, and does not require anticoagulation. Despite several shortcomings of the Ross procedure, it has emerged as a popular choice for aortic valve replacement in infants and children. This review focuses on the role of the Ross procedure in the treatment of aortic valve disease in children and young adults.

 

[Derek L. Shenefelt]

Tissue vs mechanical in younger patients

Tissue vs mechanical in younger patients

I have a family friend of similar age who underwent the ross procedure. Unfortunately, her pulmonary prosthesis only lasted 12 years and her aortic valve is showing signs of calcification.

I had my aortic valve replaced at 21yo (2005) with an Edwards MAGNA Perimount bioprosthesis and it lasted until 3 weeks ago when it finally wore out and I had an On-X mechanical valve installed. If you are considering a mechanical valve (which should last a lifetime) I would HIGHLY recommend the On-X as it is the most advanced mechanical valve to date and they are near FDA approval for reduced anticoagulation therapy. I certainly am happy with my choice at 3 weeks post-op.

http://www.onxlti.com/

Good luck and thank you for your service!

 

[neil]

hi there, yea i would make more enquires about things,cert going tissue now and getting mech later would be an option,i know most on here do well on anti coags but i think you also have to weigh up long time usage against re ops?, whatever is said anti coags are still a drug you wouldnt want to be on by choice, before anybody jumps down my throat i know re ops arent a piece of cake,its a very hard decision BUT which ever you choose is gonna save your life, good luck which ever path you go down and i am sure you will be just fine,

 

[camgough]

Hi there. Sorry to hear your news. I was 30 when I learned I was BAV. I am also active as a police officer. As was already said, you may have the option for a valve sparing procedure. My aneurysm was 6.7 cm so my surgery was soon. My surgeon was able to spare my BAV since it was still working pretty well. I will likely need another surgery at some point but for more I feel good and do not take any medication. Might be worth looking into.

Cam

Sent using tapatalk on Samsung Galaxy S2

 

[Bryan B]

cewilk,

I had a Ross Procedure in 2004. Unfortunately I developed a dilation of my aortic root and ascending aorta after a few years and it reached the point that I needed surgery again to replace my aortic root and ascending aorta. The dilation also caused my aortic valve to leak and it needed to be replaced as well. However my surgeon said that my (homograft) pulmonary valve still looked great and he felt it will last indefinitely. He also felt that if the time came where is did need replacing that it would be able to be done by catheter. A lot of surgeons don't advise using the Ross Procedure for BAV patients, especially if they already have dilation of the aortic root or ascending aorta due to the possible link between BAV and connective tissue disorders. I would highly recommend contacting Dr. Paul Stelzer at Mount Sinai Hospital. He is known as one of, if not the best Ross Surgeons in the world and he is very good about helping patients out with advice concerning the Ross Procedure. I wasn't his patient but I communicated with him by e-mail after I found out about my dilated aortic root and ascending aorta. I was inquiring about a valve sparing procedure to replace my root/ascending aorta and he really was a great help. I'm sure if you contacted him and gave him your medical history he could give you a better idea if you would be a good candidate for the Ross Procedure. His contact information is here: http://www.mountsinai.org/profiles/paul-stelzer

I can't help you with the military aspect of things but I wish you good luck with whatever choice you make.

 

[LiMbTwIsTeR]

I had a Ross done younger than you...at 18. The tissue valves lasted me about 10 years. I had a second aortic replacement Jan 2010. Personally, I'd stay away from a mechanical valve. I was an amateur fighter, and still am an avid downhill skier and whitewater kayaker. I also LOVE brewing and drinking beer. Anticoagulants can mess with your quality of life. I know some members here have had zero problems with taking them, but I never wanted to chance it. I recently retired from the ring and cage, but I did train,fight, and win after my Ross procedure. I'm not advising that intense of activity I'm just saying I did it. (often skirting medical exams). You need to ask yourself what is most important to you. For me, it was feeling "whole" and not having limitations. Remember, mechanical valves are not "permanent" replacement parts either. Many people need to get them replaced with frequency. I'd consider all the options, but I'd skip the Ross at this point. You're done growing, so save the pulmonary and skip the mechanical. Dr. David Adams at Mt. Sinai in NYC is your man if you have that option. My 2 cents

 

[neil]

wow you fought after your op, even if somebody touches my chest now i cry lol

 

[hannahsmom]

Hello,

My daughter had her AVR at the age of 10. Our initial plan was for the Ross procedure, however when her surgeon began the operation, he determined that her pulmonary valve, while functioning perfectly fine in its current position, would not make a very durable aortic valve and that she would most likely need another replacement before reaching adulthood. We planned for an event such as this and it was decided ahead of time the mechanical was best route for her as a tissue valve would not last more than a few years. We were lucky enough that she received an adult sized valve, so it should last her several decades (and if you use Dick as an example - maybe her whole life). Anti-coagulant treatment has been pretty easy on her so far. Her INR has been at the target range since about 5 mos post op. It's just a matter of consistency with diet and taking her medication on time each day. She is now 12 and is going to more and more sleepovers, social functions, etc and has done very well with keeping up on her responsibility. As far as activity level - She is doing better than ever...dancing, gymnastics (returned to both at 6 wks post op) and more recently has joined cheerleading.

For a young patient from what I have read, been told, etc - The Ross Procedure or Mechanical seem to be the best fit. While we were hoping for the Ross, I am very grateful that our surgeon made an informed decision that best suited her future. The idea of lifelong medication needs scared me so badly, but it honestly has not changed her life very much at all. Hannah is doing wonderful and will hopefully not need any surgical intervention any time in the near future - or maybe never

Best wishes to you.

 

[fgarran]

Hi.

I had Ross Procedure (March 28th) with Dr. Paul Stelzer from Mount Sinai Hospital in New York.
I am 37, live in Brazil and made the whole way to NYC because of Dr. Stelzer's reputation.
I couldn't be more satisfied. The surgery was successful and he is such a great person, who really makes you feel comfortable. For such a procedure, the surgeon's experience is crucial. I was the 511th Dr. Stelzer's patient for Ross.
I chose Ross procedure after reading a lot of papers on the subject and analyzing recent statistics showing significant improvements in the technique, which are likely to increase durability of the procedure to 20 or more years without reop.
Off course, time will show how successful my surgery was. By now, I am walking 10 blocks twice a day with no blood-thinner and eager to play tennis again.
As you are very young, I wouldn't think twice to talk to Dr. Stelzer.

All the best,

Felipe.

Good evening everyone.

Almost a year ago I found out I had BAV, ascending aorta about 4.3cm, moderate AR, and a dilated left ventricle. I am in the military and recently was not cleared medically to move to my new overseas duty station because of this.

I had a MUGA Scan a week ago and will be seeing the doctor again in 4 days to talk about the results and the next course of action to take with this.

The doctor informed me that I may have to go ahead and get this fixed. If so, he said I would have to get a mechanical valve because I am only 24, and getting a biological valve would not be the best route to take because I would have to get multiple replacements throughout my life. This highly concerned me because I know I would be on blood thinners the rest of my life and the side effects would have a huge impact on my lifestyle, and would probably medically discharge me from my job.

I recently read about a valve replacement procedure called the Ross procedure. My doctor has not mentioned this as an option, but it seems like a great option for a young adult desiring to maintain a very active lifestyle without needing permanent medication and blood testing.

So my questions are: Does anyone have any personal knowledge/experience about the Ross procedure? Is a mechanical valve really a better option for me considering I am only 24? Despite the severity of the condition, I feel well and am not experiencing any noticeable symptoms.

I have to deal with all of my medical appointments through military providers, so I can't just go and get second opinions from private practice facilities or civilian doctors. I am just worried that the doctor will recommend me to have surgery that I don't think I need just yet.

Thanks for taking the time to read and any info or advice!

 

[scott.eitman]

Thank you all for the replies. I will be sure to keep y'all updated with the situation.

On a side note...
The medical prescreening that I had prior to joining the Marine Corps didn't involve any in depth heart testing. I'm not sure how the doctor didn't notice anything unusual with the sound of my heartbeat, but nevertheless, it went unnoticed. The way my BAV was discovered was from an incidental finding during a hospital visit that I had one weekend last August. The staff decided to do an echo, not sure why, but that's how it was discovered. If it wasn't for the injury I had that lead to the hospital visit, then I still wouldn't know to this day.

I was first told I needed AVR when I was 24 as well. It went something line this: Do you know you have a murmur? I responded that I did not. I was and still am amazed that no one had ever noticed it while growing up. I had plenty of physicals for camps and sports.

Luckily, I was able to wait another 10 years before my 1st surgery.

I wish you luck in making your decision. I would say definitely get a mechanical, but I not sure that is the right choice. I enjoyed 5 years after my 1st working out with the local HS wrestling team. I could not have done that on Coumadin. On the other had, 2 OHS sucks, yet I have meet many who have had more.

As for having to go to military docs, am I correct in assuming that you can, but it is just not covered. I am a big fan of 2nd opinions. I have seen many people that are not covered. It is my only life and I want the best care, not just what is convenient and low cost.

 

[TheGymGuy]

Just wanted to let ya know we are still thinking about you. Any updates or decisions that you have made?