Im from the chicagoland area and I did my homework, I heard nothing but great things about the Cleveland Clinic. So last August I had my Arotic valve replaced at the CC. My surgeon was Dr.Gillinov, he replaced my valve and saved my life. Why not go with the best. Remember IIana the fear is worse then the reality. Thank god it's 2011.
One of the greatest disservices done to people is the constant promotion of the idea that if you have heart problems it must be your fault in some way. IT'S NOT. Bicuspid valves are there when you're born. It's not something anybody causes to themselves.
In fact, this whole media thing of telling people their cholesterol or lack of exercise or smoking is what causes heart problems absolutely ignores the fact that:
1) nobody knows what cuases heart valves to get calcified.
2) many people are born with problem valves.
3) the great majority of people who have valve surgery have absolutely nothing wrong with their coronary arteries.
4) You can have perfect blood pressure, perfect cholesterol, exercise till you turn blue, avoid all bad foods, etc., and still develop a bad heart artery.
5) genetics is more powerful than all the environmental or life conditions around. The reason they promote all the information about cholesterol, etc., is it's something people can control, but they cannot control their genetic makeup. Sure it helps to live healthy lives, but it's not a guarantee. Sometimes you just inherit things.
I wish the heart association would change its publicity and start telling people the truth--that there is more than one kind of heart disease because nobody publicizes valve disease so everybody goes around thinking that they're doing everything right, so they won't have a heart problem. That's the way I thought, and I had aortic stenosis--had a heart murmur for as long as I can remember. Thank god for modern medicine which saves our lives.
Please don't go around thinking you did something wrong, and be happy if they do the surgery SOON. Waiting is worse than recovering from surgery. The quicker it's over, the quicker you can recover and get on with your life.
Thanks for asking for inputs from those with experience with the minimally invasive heart vavle repair. I'm scheduled, March 11th now, with the same doc you are and the Da Vinci robot as long as they, the Cleveland Clinic folks, determine my anatomy is OK for the robot. I've read very positive comments about Cleveland Clinic, some saying its the top place in the world for what we need. You can find videos on you tube and at the Cleveland Clinic Web Site as well as by googling da vinci robot heart surgery. Good luck to you
I had my aortic valve replaced (I had a bicuspid valve with severe calcification and stenosis) last May at the Cleveland Clinic. I had minimally invasive surgery - my incision is 3 inches long. If you read back through my journals you'll see it was much easier than you're thinking. (I know you're thinking it will be horrible because that's what we all think!)
Yes, you are young but we've had younger people on this site - there were 2 19-year old young men who had surgery last summer.
Good luck with your second opinion and feel free to ask all your questions. There's lots of expertise here.
I too was diagnosed with a valve problem at 27. I thought I had asthma at the time, but my GP told me it was a pretty severe mitral valve prolapse - I too was terrified at the time - I had no family to support me - it was very hard to take. Fortunately medication turned out to be enough for the next 20 years or so, but not anymore...
Some 25 years later that type of surgery has improved so much - we are very fortunate.
Welcome to HVJ! I had AVR surgery at the Celevland Clinic last May and you will be in the very best of hands. I was not a candidate for minimally invasive as I had an aoritc anuerysm repaired, in addition to a diagnosis of aortic stenosis and regurgitation.
Di you see Adam Pick's blog from earlier this week? Dr Svensson spoke specifiaccly about the opportunity for repairs when just a diagnosis of regurgitation is involved is much greater. Here is the link: Cut and paste this.
Hi Ilana, as Ruth said welcome to the site. You can gain so much insight from other members' experiences here which will hopefully put you a little more at ease. At least knowing, there are many more of us with similar heart problems. I would recommend you get and read Adam's book and maybe also check out http://www.valvereplacement.org/forums/forum.php
I too have a bicuspid aortic valve which has become heavily calcified to the point I have severe aortic stenosis. Feel free to ask the questions you need answered.... Eric B.
Hi Ilana and welcome,
Well, all I can say is join the club. We're all pretty much in the same boat. I have a prolapsed mitral valve and will be having surgery at the Cleveland Clinic (Dr. Gillanov) on April 21. I also have tremendous fatigue and recently shortness of breath. You have chosen the best heart hospital in the country and one of the very best cardiothoracic surgeons. And you're fortunate that you don't have to travel too far.