bicuspid aortic valve

[booger1286]

went to doctor a month ago and was told i would need surgery within a couple of years so im kinda stressin out, i think the aortic root is just like 2.7 or 3.7 but the leak is bad. just wandering if anybody can give some info or experiences with this , the surgery, the longterm outcome, and the risks. im only 24 and i have never had any type of surgery, it gives me the impression like im gonna die from it or that it will shorten my life.

 

[skeptic49]

Hello and welcome to the forum! There are a number of people here who have been in a similar situation to yours and have had successful valve and aortic surgery. It can be upsetting to get this DX (diagnosis) but you will find that the surgery is life-saving with a low mortality and morbidity rate if done at major centers (e.g. university hospitals) where they do a lot of these more complex procdeures. Your life expectancy post surgery can be as long as the average. Please post any questions you have and have a look at the bicuspid aortic valve forum and check out the links especially the Bicuspid Aortic Valve Foundation.

Best wishes,

Jim

 

[Lionheart]

Booger1286,

It's pretty tough emotionally when you first find out that you need surgery and everyone handles it differently. For me I used that time after I found out that I needed surgery to learn everything I could about the surgery and recovery and how I could make it all go as easy and successful as possible. When did your doc tell you to come back for a retest- I assume it was an echocardiogram that he used to detect your bicuspid valve?
The surgery is fairly quick and yes it hurts but they have great pain meds to reduce pain. Afterward you be a bit sore as you heal and you will feel like a little old man for a week or two and then over time your strength and confidence will return in the next month and amazingly you will soon start feeling like your old self or even better! I ran my first 5 k race 5 months after surgery, there are others here who have done much more than that, like 10k or marathon races. I now feel better than I did when I was younger and my new valve does not hold me back from anything.

As far as your long term outcome-well your new valve will probably provide the best chance for a long and happy life- it will fix something that's broke. Some of us had heart surgeries at your age or younger and most of us old farts are doing pretty darn well many, many years later.
Best
John

 

[ALCapshaw2]

Welcome aboard Booger!

First, you need to know that we live in an age and time when just about anything Heart Related can be FIXED with Very Low Risk by experienced Surgeons. The key is to find a surgeon who has experience dealing with your issues.

You will find LOTS of pertinent information on BAV and the often associated Connective Tissue Disorder(s) that can result in aortic aneurysms in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum. The Gold Standard for checking for Aortic Aneurysms is either a Chest CT or MRI. The head of the Connective Tissue Disorder group at the Cleveland Clinic (#1 rated Heart Hospital) is Dr. Svensson.

You will also find answers to many of your other questions in the Pre-Surgery and Post-Surgery Forums.
Feel free to ask any questions that come to mind as you learn more about your heart.

'AL Capshaw'

 

[scott.eitman]

Welcome aboard.

I was 24 when I was diagnosed with a BAV as well. I was able to put off surgery for 10 more years. I lead a pretty active lifestyle for those 10 years. One difference, I was told that someday I would need surgery, not in a couple years. I saw my primary Dr quarterly and my cardio yearly. I had many types of tests, but mainly a yearly Echo. You should learn about this and take control of your situation. For instance, in the 9th year, I started realizing surgery would be coming up soon and I wanted to get 2nd opinions. I then started visiting a number of hospitals in Cleveland, knowing that I would eventually end up at the CCF. My 1st cardio had his head up his a.. and after my surgery told me he still did not think I needed it: I did! In otherwords, do not just blindly trust.

As for shortening your life, keep in mind that we do things every day which can shorten our life if it goes wrong; driving, crossing the street, walking down a flight of stairs... This is just another chance for things to go right and live a great and full life; your life.

Keep up a positive attitude and things will be good for you. it is not the end of your life, just a change in course.

Scott

 

[yotphix]

Hey boog,

My BAV with stenosis and "moderate to severe" regurgitation and an enlarged ventricle was diagnosed at age 32 and I pretty much thought it was the beginning of the end too. Then I carried on as normal, which for me was a pretty intense lifestyle, for another 7 years. Only then did I become symptomatic and even that didn't slow me down too much. When the actual surgical time came up a year after that, I really started to worry.
I'm on the other side, 18 months out now and I have to say, it's not half as big a deal as I thought. Certainly not the end of the world, or even my active life. A surgeon other than mine, a friend of a friend, told me not to worry a bit. He said that we younger (under 60 is young to a cardiologist or cardiac surgeon) patients are good for the stats!. We don't tend to have a lot of other problems (co-morbidities) and tend bounce back pretty fast with great outcomes.
Everyone is different but I found that the more I educated myself about the condition and the surgical solutions the less I worried about it. At the time of diagnosis I used to tell people, mostly jokingly, that by the time I needed surgery they would be really good at repairing the valves and I would get to keep mine. 8 years later the surgeon told me that when he had me open he was considering trying to save the valve but ultimately decided it was too far gone. Who knows what will be possible by the time you need surgery, assuming that you ever do. Even if technology never advances further, I'll testify that it is pretty awesome right where it stands.

Paul

 

[booger1286]

i appreciate it

i appreciate it

thanks to everyone for the advice and input it does help alot i guess i just just worry too much

 

[epstns]

Booger - My own opinion is that worry is only a problem if it doesn't lead to a conclusion. In other words, if you worry about something, make sure you can reach a comfortable decision about it and then put it aside. Don't keep coming back to it -- you can't change it and your initial decision was probably your best.

I wasn't diagnosed until I was 52. Then they told me of my aortic stenosis, which was already "moderate to severe." I went on for another (almost) 9 years before deciding it is now time for surgery (March 1). During those years I did whatever my life took me to -- running, weight lifting, travel, work (too much!), family. I just got on with my life until I decided that it it "time." Then I got on with choosing a surgeon and picking a date. As the Nike slogan says. ". . . Just Do It!"

 

[TXWildflower]

It is freaky to get that news at first - I'm with you. 12 years ago by gynecologist discovered a murmur and suggested I see a cardiologist. From the very first echo, I was told that I would have to have my valve replaced one day. I freaked out too - did some research and then just went about living my life and not dwelling on what the future might hold. Now it finally is time and I am looking foward to getting it over and done with and then moving back on with my life again - only feeling much better I hope.

They have made major advances in technology lately. By the time you are really ready for surgery - who knows what the latest techniques will be. A decent change it could be done percutaneously - which is in clinical trials know with good results - but only for cmpassionate cases (ones who due to other risks could not survive surgery). Best of luck to you. Hope you get over the freaked out stage soon and just get back to living - but continue to follow you cardio's suggestions and stay on top of your check-ups, etc.