Ascending aortic aneurysm and Bicuspid Aortic Valve--Please talk to me! (New to this)

[HopefulHeart]

Hello everyone--
I'm new to the world of heart issues. I went to the Dr. 7 years ago for a sore throat and came out with the bombshell that I had a heart murmur. The heart murmur turned out to be a Bicuspid Aortic valve (I'm 38 years old and never knew). Investigation of the BAV revealed I also have an ascending aortic aneurysm of 4.2 cm (again, I'm 38 years old and never knew....never had symptoms). My shock continued when I discovered that my grandmother and my uncle both died of heart defects....uncle died in surgery for defective valve. This past fall, my mother was horrified to find out she also has a BAV. I'm shaking my fists in the air with anger at the fact that this heart defect is so prevalent in my family and my family has been blind to it all these years, even with family members dying! Anyway, I have no symptoms and feel great, but am being monitored yearly by a cardiologist. The aneurysm has been stable for the past 7 years. At some point, I will have to have heart surgery to repair the aneurysm. Surgery scares the heck out of me since my uncle did not make it out......Frankly, I think my uncle went to the wrong surgeon. Have any of you had the ascending aortic surgery?? My valve may be spared if it continues to have no symptoms. Can anyone comment on the surgery?? Where did you have it done?? I'd love to hear some good outcomes!

 

[Heart Of The Sunrise]

Hopefulheart- read my posts. I would have the surgery sooner than later. Follow the link below. It is my surgeon discussing the procedure that I had.
The only difference is the patient in the videos elected to have a tissue valve.

http://www.youtube.com/watch?v=d5jGG4sH2Cc

 

[ElectLive]

Well, I certainly haven't been counting, nor even paying that much attention, but I bet I could probably name at least 50 folks on here who have gone through one or both parts of your potential surgery (aneurysm graft and/or bicsupid valve replacement) in the last few years, including myself. BAV is the most common valve problem and aorta issues very often are part of the picture. This is good news...there is a world of surgical experience and risks are surprisingly low. If you were to go back 10 years, 20 years, and especially 30 or more years, surgical risk was a completely different world than it is now.

Heart surgery is scary, no doubt, but interestingly enough, you face generally no worse risk than you would driving a car the rest of your life, and no one thinks twice about that. I had mine done at Emory in Atlanta which could easily be the best in the southeast. But there are plenty of great places closer to you also, and I'll let folks in the neighborhood fill you in on that. You may even want to start a thread specific to location to help.

It sounds like this may have already happened but just to be sure: please ensure that everyone in your family (first degree relatives at a minimum) be tested (echo) for both BAV and/or an aneurysm, if they have not already done so. Even in those without BAV, there could be an aneurysm. It can skip generations, or be successive, and it does cluster in some families.

Back to you, for what it's worth, my condition was known since birth, but in a way, I was equally blind. When you have nothing but good results from yearly echo's, it just starts to get boring after 30 years or so. Ironically enough, I had only a month to prepare for surgery. You are lucky...you know about your condition and are being monitored, and you are now starting the preparation process. The surgery doesn't have to be the defining worst moment of your life...it can just as easily be just a small part of your best years ahead: http://www.valvereplacement.org/forums/showthread.php?38916-The-Best-Year-of-my-Life&highlight=.

Best wishes to you...

 

[Rachel]

Hi HopefulHeart,

Yes, I also had a bicuspid aortic valve and an ascending aortic aneurysm (mine was 5.2cm when discovered) - I was 45 years old when mine was discovered and I was shocked also because I'm a middle distance runner (running half marathons) - I had no symptoms.

I only had to wait 3 months to get my surgery due to the size of the aneurysm (and I might add, I'm also a very small person) - In my case I begged for surgery because I knew it would save my life and now I'm back to running and moving forward with my life.

There are lots and lots of great hospitals around the county - I happen to live in Michigan so I went to Meijer Heart Center Spectrum Hospital for mine. I’m sure there’s something near you as well. Lots of people also go to Cleveland Clinic.

My grandfather also died of a heart condition in 1970 - no one in my family really knows exactly what heart condition he had, but my guess is that he had what I had.

Good luck to you, and keep posting here for questions/support - great group of people here!!!
Rachel

 

[AZ Don]

Hi,
I just found out in March that I had an ascending aortic aneurysm. In April I also found out that I had a bicuspid aortic valve, an aneurysm of the aortic root, and that I was already past the surgical criteria. On May 22 I had a valve sparing aneurysm repair at Mayo Clinic in Phoenix and my recovery is going well. I've documented it in this thread:
http://www.valvereplacement.org/forums/showthread.php?41644-Good-to-be-back-home

Very tough call to spare the valve and take the risk that it will have to be replaced down the road, but my valve was functioning well and sparing the valve is generally the recommended option in such a case. Not sure when your uncle had his surgery, but techniques have certainly improved over the years. It is important to find a Dr. experienced in aorta repairs. My surgeon does 50-60 major aorta operations per years, as well as heart transplants. It was just another day at the office for him.

As far as living with an aortic aneurysm, I documented some of what I found in this thread and it has spurred some good discussions:
http://www.valvereplacement.org/forums/showthread.php?41543-Exercise-and-stress-with-Aortic-Aneurysm

I would also suggest that you take a look at the Cleveland Clinic webchats:
http://my.clevelandclinic.org/heart/webchat/aorta-disease.aspx

While I think the surgical criteria tends to be on the conservative side, leaving many people to live with the risk of an aneurysm for an extended time, you are quite a ways shy of the surgical criteria (5.0cm w/ bicuspid valve). I have seen comments in the webchats above from the Dr's indicating that the risks and recommended restrictions for those with smaller aneurysms are much less than for those closer to the surgical criteria. Some people live for many years with smaller aneurysms that never progress. It is important that you have it monitored regularly (every 6m to 1 year at first) and you should avoid heavy weightlifting and extreme exercise.

 

[HopefulHeart]

THANK YOU all for your posts! I'm so grateful for your information. I've felt very alone with this heart condition and it's a relief to talk to other people with similar circumstances. I did have both of my daughters (age 8 and 5) scanned and thankfully neither one has the BAV nor do they have any other defect. My brother and sister were also scanned and they do not have any heart defects. My cardiologist told me I was the unlucky one that got the mutant gene. But I feel better after reading the posts on this site.

 

[Ryan CA]

Hi HopefulHeart,

I am a new member also. What a great site huh?

Anyway, I was born with BAV and Aortic Stenosis and still have little to no symptoms. Like ElectLive said, I just kind of went along, did my yearly check ups and put it in the back of my mind until just recently when the cardiologist told me my defective valve has gotten a bit worse.

That is when I started reading and finally doing a little more research into this stuff. Browse through this site and look around at some of the videos for valve replacement on Youtube.....It has really helped to put me at ease learning how common this is and how advanced the treatments have become. Hopefully it will have the same affect for you!

As for feeling alone.....Im with ya. I had never had a conversation with anyone else with the same issue until joining this site.

 

[TheGymGuy]

Hey HopefulHeart,

I second, no third, no 57123123ndth, what everyone says. I knew of my BAV and Stenosis from very little age, but I had no idea about my Aortic Aneurysm till very recently. Like many of us, I had zero symptoms, none. Not even the day before surgery. I'm a competitive athlete and my condition did not stop me from doing really well.

Finally had surgery March 2012, during which they replaced what was broken and got me a new shiny valve as well. Since then I am back to where I was before surgery, lots of training, living life, and doing better than ever.

All will be good, we are here to support ya.

 

[Agian]

Hopeful heart, I know how you feel. About a week and a half ago I was told I'd need an Aortic Valve replacement for Bicuspid Valve, within the next five years. Alone and scared, I chanced upon this forum, which gave me a sense of comfort. I've only just been approved, so this is my first post.

 

[AmyBL]

Hopeful heart and Agian: Welcome! I too, am waiting for surgery for an aneurysm and bicuspid valve. Every six months I have an echo or a pet scan. This place is a lifesaver. The people are positive and very well informed about our conditions.
AmyBL

 

[HopefulHeart]

Agian and AmyBL.....Welcome and thanks for responding to my post!! I'm sure you'll be as happy as I am to have found this site and these wonderful people. I'm actually finding it hard to gets things done because I've been spending so much time reading all the great posts on this site. The information is wonderful as well as the support from everyone!!

 

[Guyswell]

HopefulHeart,

Sorry you've had a bad surprise but you're in good company. These days, the surgery you will probably need at some point has a very high success rate. The valves are much better too.

My pediatrician discovered my BAV when I was a baby so my family knew (and I knew) from a very early age. We monitored it for 41 years before I had my first surgery. When I was younger, I had several heart catheterizations (in the days before echocardiograms). In later years, I went in for annual echo studies. When my heart started to enlarge and my aneurysm reached a certain size, I also started to experience some symptoms during exercise. I had my aneurysm repaired and my valve replaced 9 years ago. The first valve (a tissue valve) became calcified and narrow after 8 years so I had it replaced one year ago with a mechanical valve (yes, I've done this twice).

I feel very good these days and I feel blessed to have access to great medical care. If I had been born in an earlier time, There's nothing that could have been done and I would probably be gone by now. I'm 50-years old, physically-active, and I lead a very normal life. I ride my bike most nights (1.5 hours last night) and feel great doing it. Even though your cardiologist will need to monitor your situation regularly and you probably will need surgery some day, I can assure you that there are very good solutions for this problem and you too can go on with your life.

Good luck!

 

[Duffey]

THANK YOU all for your posts! I'm so grateful for your information. I've felt very alone with this heart condition and it's a relief to talk to other people with similar circumstances. I did have both of my daughters (age 8 and 5) scanned and thankfully neither one has the BAV nor do they have any other defect. My brother and sister were also scanned and they do not have any heart defects. My cardiologist told me I was the unlucky one that got the mutant gene. But I feel better after reading the posts on this site.

It's good to read that your daughters are ok, and only you have the BAV. I say that because our son has "my" BAV and our 4 year old grandson also has "my" BAV and is being followed by a pediatric cardiologist. It was shocking when I was first diagnosed at the age of 49 but even worse to learn that it had been passed down to two generations of our family. This forum is a good place to find answers and share information. Welcome!

 

[dpalz]

Glad you are here HopefulHeart... Well, sort of...... You will find once you have the procedure done, this is the best club you will have never wanted to be a member of. It sure beats the alternative!!!

I'm 44 yrs old, and back in 1986, while a Sr in HS; my Grandfather (@ 72) went in for a wild surgery where they were going to replace his aortic valve with one from a pig!! He had a BAV and unfortunately, he didn't make it home from surgery.... Life went on and some 26 years later I suddenly began feeling very, very bad. I had participated in sports, been physically active along with physical training all my life (5-6 days a week), but I thought I was having a mid-life crises! Well, I'm glad I didn't go out and buy a corvette!! My symptoms (they came on very sudden) were so strange to me and I didn't think they had anything to do with my heart. Last year I suddenly lost my appetite, developed severe insomnia, had terrible fatigue and continuously experienced heart palpitations. I had begun @ 35 yrs old to complete annual physicals always with a clean bill. I just happened to switch Dr's about a year prior to my surgery, leaving the more expensive PPO for an HMO because prior to the symptoms, I thought, heck, I'm in the prime of my life, nothing physical wrong here, lets save some $$! Moving forward now, I go to my new HMO primary feeling very bad and he is this old timer Dr and within a few minutes he tells me I have a heart murmur and orders further testing. One week later, he's telling me I very likely have a BAV which has created a 4.5 - 5.0 cm aneurysm of my ascending aorta. Now I'm in a panic! What did I do!?! A CAT scan confirms my aneurysm is over 5 cm and surgery is suggested soon. Due to my insurance dip switch, my options are limited (no Cleveland Clinic, Mayo, etc..). Little did I know that while this was serious surgery 25+ years ago, today it is rather routine. Luckily, I had a few good options in the HMO plan and I went with Loyola here in Chicago. I certainly would pick Loyola again. I had a top 1% surgeon (I still don't know what that really means but people use that term often), and the hospital staff was amazing! Yes, I did feel like I had been hit by a truck, but upon wakening from surgery, I could immediately tell things were better! Like many, I had a setback due to fluid on my heart which found me back in the hospital, but now almost 8 months out, I'm a new man! No fatigue, heart palps, insomnia and excellent energy! I didn't think I would ever feel this way again! Thank You Medical Professionals, Technology & Advanced Science!!!

Thank you for giving me the opportunity to vent my story and I believe and wish you an even better experience. When recovered, you might just find you have had symptoms that you have basically written off or have got used to and adjusted without really thinking about it.

BTW - In my fortunate case, the Surgeon, Cardiologist and Dr never even recommended cardio rehab nor did they put me through more testing prior to surgery. They knew what they had to do and would adjust as needed if the situation called for it while on the table. This made me nervous at first, but looking back now; I really appreciate it. I was poked and prodded enough! I had such a hard time hearing people call me "lucky" but now after the experience, I'm so much better physically, emotionally and mentally. I'm actually glad to have gone through it! Did I actually write that?!?

Sorry so long of a story. I certainly wish an even better experience for you and everyone else who goes through this. Please use this site along with reaching out to people who have gone through this before. We are very glad to help in anyway possible. Posts, emails, phone calls, coffee with friends really help the journey. I was so lucky to have a gentleman who went through this bring his wife to meet me and my spouse for coffee and share his story, answer questions and listen. Things like this really restores the whole faith in humanity thing!

Good Luck!
Dion

 

[Agian]

Agian and AmyBL.....Welcome and thanks for responding to my post!! I'm sure you'll be as happy as I am to have found this site and these wonderful people. I'm actually finding it hard to gets things done because I've been spending so much time reading all the great posts on this site. The information is wonderful as well as the support from everyone!!

You too huh? I just can't get this Aortic Valve thing out of my mind.

 

[Bracken]

HopefulHeart, our situations are nearly identical. Asymptomatic, 38yrs old, family history, BAV, aortic aneurysm, etc. You can read my first post here.

My surgery was just three months ago and in all honesty it rarely crosses my mind any more. At the time of my diagnosis I recall my cardiologist and surgeon were so nonchalant about the procedure. This really surprised me at the time, but in hindsight I know why my doctors felt this way. This procedure is very common and the success rates are incredibly high. This is a life altering event for those that go through it, but for our doctors this is an every day occurrence.

After surgery, while recovering in the ICU, one of the first things I told my family was "no big deal, I can do that again". Which is good, because I'll have to at least 2-3 more times in my lifetime. I was taking baby steps within two hours post surgery, doing laps around the hospital floor within 24 hours, and walked one mile straight the day I got home - four days after surgery. I mention this to give you hope and insight that a quick and easy recovery is very possible. You'll find countless others on this forum that had an easy recovery as well. It's not all doom and gloom. Disclaimer, everyone's situation is unique and your experience may differ.

Feel free to post or hit me up any time if you have additional questions/concerns.

 

[Agian]

Hi Bracken,

Did you have a full sternotomy?

 

[jhc1]

Hopeful-while my valve was not bicuspid, I just went through what you are facing...on June 10th I had my aortic valve, and root replaced, along with a graft on the ascending leg. I'm 9 days post-op and feeling good. I too was asymptomatic for quite some time, and feel luck to have had my problem diagnosed before it got too serious. As many may have already said, do your research, choose a hospital and surgeon that do this frequently, and place your trust in them. my surgeon had performed over 6000 valve replacements when he operated on me, I think I was his second AVR of the day. As scary as this is for you (and as it was for me), this is another day in the office for the surgeon and his team. You'll be fine. As far as your anger, I think we've all been through that "why me" stage. I finally realized that all the worry was for naught, and I was lucky to have found it before problems got worse.

 

[Gail in Ca]

In '89, at age 34, I had my first OHS, to replace my aortic valve, and attend to my 6cm aneurysm, discovered only 6 weeks before surgery. My only child was 2 1/2 at the time.
In surgery, my aorta fell apart in the surgeon's hands and he had to cut out the bad portion, and add a Dacron graft, separate from the valve.
I have had 2 surgeries since then, and have come thru very well. My last replaced the valve and graft with a valve inside a hemashield graft. It's larger and so better for me in general. This was 4 years ago. We all are nervous going into surgery, and yet, I always felt I would survive before each one.
I had a great surgeon here in CA, Dr. Miller, and that's what you need to find. One that exudes confidence, and has lots of experience.

 

[HopefulHeart]

Bracken......THANK YOU so very much for your post. As I read it, I started feeling a great deal of relief. I'm so happy to hear that your surgery and recovery went so well. I will keep your words in mind the next time I mention my heart condition and someone looks at me with that "Oh my! How horrible!" look.

How do you feel with the new heart valve? Does it give you any symptoms or require any meds to be taken (such as blood thinners for mechanical valves)?