Recommended surgery before end of year

[jdroe31]

I have a Congenital Bicuspid Aorta and on my last ECHO the doctor upgraded me from moderate Aortic Insufficiency to Severe and has recommended surgery to replace the valve before the end of 2011. Up until last Monday I was exercising for 90 minutes 5 days a week including a 3 mile run every morning. I have the typical items of noticeable heartbeat when lying on left side but have no other symptoms of our disorder. I am scheduled for a CT-A this coming Wednesday and I have the following questions for the group.

1. Has anyone had surgery prior to becoming symptomatic, i.e. shortness of breath, etc
2. I have read that a bicuspid aorta is the most eligible for repair. Is this true and has anyone opted for a repair as their first OHS?
3. How many opinions/consultations did everyone have prior to deciding surgery was required?
4. Has anyone had surgery by Dr. Rich Morrison in Chattanooga, TN?

This webpage is a tremendous resource so thanks to all who are willing to share their experiences both good and not so good.

 

[Julian]

Greetings jdroe31! Concerning question number 1 I've read about many people that went into the surgery symptom free from this forum and for many after they recovered they found that they were symptomatic and didn't know it. Personally I was knocking on deaths door for years before surgery so...

Question 2 I've read that typically its not common to repair the aortic valve and if it is eligible for repair its a valve that has regurgitation issues and not stenosis. The majority of the time they just replace the aortic valve but there are times when they can repair it. The surgeon doesn't know until he gets in there so it's good to have a plan b and c concerning the aortic valve. The mitral valve is more commonly repairable.

Question 3 I had 4 consults with cardios before surgery, it really just ended up that way, its a long story. You probably don't need more than 3. My symptoms told me I needed the surgery more than the cardio after a certain point. DON'T WAIT FOR THAT.

Question 4 I have not had surgery by Dr. Rich Morrison.

Others members will be along shortly to give their experiences. Keep searching and find out all you can. Don't take my answers as the Gospel truth these are just my experiences and my readings.

 

[jdroe31]

Julian, in response to Question #2 I do suffer strickly from Regurgitation (aka, leaky valve). I will certainly take you advice on the plans B and C. I greatly appreciate the feedback. I think the mindset has changed since they first found my Bicuspid Aorta (1995 @ age 18). It seems as though doctors are doing their best to initiate surgery before symptoms arrive to preserve the health of the heart. I absolutely agree with this approach, was just hoping to make original valve last alittle longer.

 

[AgilityDog]

One thing we say on this forum: When valves go bad, they go bad fast. So if your doctor says it's time, then it's time. You probably do have some symptoms, but don't realize it, because you are used to them. That said, bad aortic valves tend to have fewer symptoms than bad mitral valves. I've had both, so I know from experience.

I had my MVR right after labor day in 2006. If I hadn't had it done, I would not have seen Christmas. I was deathly ill, and knew it, I just couldn't convince my internist I had a heart problem. By the time I was diagnosed, my mitral valve was "blowing in the breeze," I was in advanced CHF, had a-fib, an enlarged left atrium, thickened heart walls, and couldn't speak a full sentence without gasping for air.

In contrast, I had barely (like 2 weeks with the cardio visit already scheduled) started to notice some very mild, almost imaginary, chest discomfort when taking my daily walk, when my cardio said it was time to finish up my heart work and get the leaky aortic valve replaced, because he was seeing strain on the ventricle.

If your doctor says you have "severe" regurge, it's time to call the surgeon. You are not just dealing with the valve, itself, but risking potential long term damage to the left ventricle, arrythmias, even sudden cardiac death caused by the added strain. So do not delay your surgery. Not having symptoms, or not thinking you are having symptoms, is not a good enough reason for delay.

 

[rubywhistle]

Hi jdroe31

Just some of my own opinions here..
I would do it asap - i know it seems really daunting but if you wait it can cause long term damage as agilitydog said above and lead to a replace rather then repair - Drs usually recomend repair if possible as you may never need another op and never need a replacment. Repair is my first option for upcoming mitral valave surgery.

Ps I also excercise regularly (30 mins a day) had 'no' symptoms until they listed them and asked me to compare to 5, 3, 1 year ago - i was blaming alot of it on my pregnancy and then lack of sleep but it was all valve related.

Hope any of this helps I havent alot to say as I am in same boat as you really just waiting now...

 

[jdroe31]

Agilitydog and Rubywhistle,
Comments and advice from people looking from the outside in always opens the eyes of those closer to the situation. A replair with no eventual replacement would be my dream and I hope and pray that will happen. Thank you both for your input. We already have a week picked so now we just need to find the right doctor.

Any recommendations for surgeons who have a heavy track record of repair over replacement?

 

[ElectLive]

The Cleveland Clinic website has some bits of info on valve repair, if you haven't seen:

http://my.clevelandclinic.org/heart/disorders/valve/aorticvalvesurgery.aspx

http://my.clevelandclinic.org/heart/webchat/1274_heart-valve-disease.aspx

I'd suggest that your surgeon search might want to include at least one of the top 5 or 10 heart surgery centers in the country, at least for an evaluation anyway. This seems a little more important for repair than replacement.

 

[spartangator]

Hi JDRoe,
Just want to chime in as someone else who was asymptomatic prior to surgery for a bicuspid valve. For the reasons you mention above concerning health of the heart overall, this seems to be a fairly common case. I can't comment much on the repair issue or your other questions, unfortunately, but did want to welcome you here as well. All the best.

 

[Mentu]

J, welcome to VR; hopefully, you will find this a good place to air your concerns and to find information. The whole issue of repair vs. replacement is dependent upon the cause of the valve failure. The most common cause of aortic stenosis is the calcification of valve leaflets which is corrected by replacing the valve. To make decisions about treatment, you must have a clearer understanding of the nature of the damage to your valve so you and your doctor are doing the right thing by investigating the problem.

I would also add my voice to those who encourage you to consider surgery sooner rather than later. The appearance of the most severe symptoms is an indicator that your condition is becoming more dangerous and is not something for which you want to wait. As you meet with your cardiologist, you might take the opportunity to ask for his recommendation with respect to surgeons. The surgeon to which you are referred will examine the test results and give you his own opinion which in effect is a second opinion after that of your cardio. If you still feel uncomfortable with the surgeon's recommendation you can certainly seek another opinion. It is important that you feel comfortable with the expertise of your surgeon.

Larry

 

[Bill B]

I have a Congenital Bicuspid Aorta and on my last ECHO the doctor upgraded me from moderate Aortic Insufficiency to Severe and has recommended surgery to replace the valve before the end of 2011. Up until last Monday I was exercising for 90 minutes 5 days a week including a 3 mile run every morning. I have the typical items of noticeable heartbeat when lying on left side but have no other symptoms of our disorder. I am scheduled for a CT-A this coming Wednesday and I have the following questions for the group.

1. Has anyone had surgery prior to becoming symptomatic, i.e. shortness of breath, etc
2. I have read that a bicuspid aorta is the most eligible for repair. Is this true and has anyone opted for a repair as their first OHS?
3. How many opinions/consultations did everyone have prior to deciding surgery was required?
4. Has anyone had surgery by Dr. Rich Morrison in Chattanooga, TN?

This webpage is a tremendous resource so thanks to all who are willing to share their experiences both good and not so good.

You and I might be twins.

1. I was asymptomatic. This somewhat confounded the healthcare people, as my "numbers" were pretty awful and getting quickly worse. I had a tiny and shrinking calcified valve, high and climbing pressures across the valve and inside the chambers. My heart was only slightly enlarged and hypertrophic. I felt fine. I was not exercising nearly as much as you, but I had been a marathon runner at one time, and my heart seemed able to compensate for the extra load put on it by the stenotic valve. Having clean coronaries helps.
2. My valve was so diseased, repair was not a consideration. Determining this would be part of the surgical evaluation. But, sure, repairs are possible some times.
3. I had one surgical consultation and knew this was the surgeon for me. I went to him after seeing rapid change in my echo results, despite no symptoms. My cardiologist did not recommend the consultation, but would have watched and waited a bit more. I initiated the surgical consult on my own just as an FYI. After another echo at the surgeon's request with even worse numbers and his recomendation that I have valve replacement surgery within 6 months and his comment that my lack of symptoms was not a reason to ignore the worsening conditions inside my heart, I went ahead with the operation 3 months later, only a year after first receiving the diagnosis rather serendipitously. Even though there has been a general idea that you don't operate until there are SOME symptoms, as certainly a good portion of BAV never need surgery, that is a simplification of how this decision should be evaluated. You can detriorate rather rapidly once symptoms appear, and there are advantages to taking care of this while you are still very healthy.
4. No.

 

[LeakyUK]

Aortic repairs are uncommon in the UK - this is the high pressure side. My cardiologist indicated that my valve might be suitable for a repair, the surgeon said NO - he knew I wanted to minimize risk of a Re-op.

 

[chaconne]

Hey jdroe31,

I'm in a similar situation as you. Fairly active (up to 100 miles of cycling a week), moderate to severe aortic insufficiency in my BAV, not many clear symptoms, advised to have surgery by the end of the year (planning on November, not scheduled yet).

I did notice some shortness of breath that started a year ago, but it is fleeting and is hard to pin down as a real symptom. However, my ride times do seem to have slowed by 10-15%. I also have a 47cm aortic aneurism and will need it replaced as well. I've decided it's better to have surgery now while I feel good, rather than wait too long. I have 3 little kids and I want to make sure I'm around a long time for them.

God bless whatever decision you make!
-Steve

 

[jdroe31]

Thanks to everyone for welcoming me to the community. Every response to my post makes me more and more happy that I found this forum. Billb and chaconne, I am compiling my records from when the found it in 1995 and preparing to send to my preferred surgeons. I hope to get it scheduled for early October so that I can be recovered for the holidays. Please keep the posts coming, I will likely transition to the pre-op forum once I have my surgery scheduled with questions and then document my recovery in the post-op forum.

 

[yagernc]

1. Has anyone had surgery prior to becoming symptomatic, i.e. shortness of breath, etc

Sept 20th will be my 1 year point. Last May I had no idea my problem existed. (I'm 37 now) Had a friendly health evaluation type clinic at work and had my blood pressure tested. 169 over 70... Nurse was very bright and said thats not right you need to have this looked into.. Several tests later, echo said severs AR. Dr. said exactly those words. "I'd like to have you get this fixed by the end of the year" I had zero symptoms that I knew of. Afterwards I think I was just starting to decline. (I had 50% leakage) I'm otherwise in good overall health, 155#, fairily active, exercise eat ok. No other health issues.. etc..

2. I have read that a bicuspid aorta is the most eligible for repair. Is this true and has anyone opted for a repair as their first OHS?

The plan with my surgeon was a) repair if possible at his discretion b) mechanical valve (OnX) I now have a mechanical as it was to far diseased.

3. How many opinions/consultations did everyone have prior to deciding surgery was required?

only one, I felt I was at the best possible place for me to be..

4. Has anyone had surgery by Dr. Rich Morrison in Chattanooga, TN?
no

Good luck