Comments on: Unicuspid Aortic Valve… Really?

By: Jaimie

Jaimie — Thu, 15 Dec 2011 22:11:06 +0000

My son was born with an unicupid aortic valve requiring heart surgery at 1 day old, 3 months old and 5 months old. He is now 4 and we are getting ready to have a ROSS procedure done. I wish there was more information about this congenital defect as I am told this happens about 1 in every 200,000 babies. He would not have lived long if this was not caught right after his birth.

By: Suzanne Johnson

Suzanne Johnson — Thu, 29 Sep 2011 03:26:13 +0000

I was diagnosed with a bicuspid aortic valve in 1990, when I was 43 years old. We had moved to Minnesota by Rochester, so I needed a new doctor and went to the Mayo clinic. The doctor said I had a world class heart murmur and scheduled an echocardiogram, which showed a bicuspid aortic valve. I had had irregular heart beats for years and shortness of breath. The doctors watched me for 7 years and in 1997, I had the valve replacement and that’s when they discovered that the valve was actually unicuspid. I have a St. Jude’s mechanical valve, and the biggest drawback has been taking warfarin and the dietary restrictions and blood work.

By: Stephanie

Stephanie — Fri, 17 Jun 2011 06:40:23 +0000

My husband has a unicuspid valve which was just identified. It is believed he had a heart attack at the age of 9. He had a heart cath at that time during which he was tied to a table and the anesthesia didn’t work! He was traumatized and made it till 38 and now cannot go any longer without a valve replacement. He says, however, that he has had pain all his life. In the past year he deteriorated so fast…eventually his job said he could not return until the problem was solved and he gave in to the surgery. Luckily medicine has changed since then and he realizes that! I think everyone is different. He has severe stenosis, moderate regurgitation and has delevoped a small aortic aneurysm at the root. He also has problems tolerating heat (when he was VERY young he broke out in a rash when he was in direct sunlight), he has early onset arthritis (started in his 20′s)in most joints, mild scoliosis in the mid-back and a very large chest. I’m sure such a rare thing is probably related to these other rare things…I just don’t know how. I think if he had done the procedure sooner he would have been better off. His doctor had reccomended 20 at the latest when they left opted not to proceed with surgery as a child. He was just too scared. He never went back to a single doctor unless he was deathly ill until about 3 years ago.

By: Thomas Sims

Thomas Sims — Fri, 19 Feb 2010 20:32:49 +0000

On December 4th 2009 I had aortic valve replacement that was severtly calcified went home four days later, after three days at home I had A Fib back to the hospital for four more days.
After about ten weeks I started cardiac rehab and I love it, every time I go I feel great I think this is the best thing you can do for aortic valve replacment.

By: Andy Rao

Andy Rao — Fri, 19 Feb 2010 20:31:57 +0000

Hi Adam,
I started my 12-week rehab six weeks after aortic valve replacement surgery. I was foggy after surgery. However, I was not depressed because I kept busy working on a laptop computer while sitting in a reclining chair. Andy

By: Carla

Carla — Thu, 16 Jul 2009 19:08:22 +0000

Hi Nikki and Adam,

I am the parent of a 17 year old son. He was diagnosed with bicuspid aortic stenosis when he was one year old. We were told he probably wouldn’t need surgery until he was 30 or 40. He was fine with a normal childhood until he turned 15, when he started having rapid heart beat. I knew then things were changing for him. When he was 16, he started having chest pains. We were told he needed surgery soon. He had open heart surgery one week later. Last August, at age 16, he underwent aortic valve replacement surgery in which he received an artificial valve. I chose the artificial valve hoping he would not need another surgery later in life. During the operation they found he actually was unicuspid, but the way the valve moved on the echocardiogram it looked as though it was bicuspid. The surgeon said we were lucky we chose not to wait awhile for the surgery. My son recovered quickly from surgery and is doing great. He is a typical high school student and will be a senior this year. I just wanted to let you know that it’s been almost a year since my son’s surgery and he has a great, healthy future ahead of him. Good luck with you and your son.

By: Scott H

Scott H — Tue, 02 Jun 2009 01:31:14 +0000

Hello Everyone –
I am a 30 year old Male who was born with a unicuspid aoric valve. I had surgery at age 14 at Childrens Hospital of Milwaukee at which point they cleaned up the valve and split it in half (it is now bi-cuspid). I had a second operation at age 25 at Cleveland Clinic where they replaced my Ascending Aorta and again cleaned up the Aortic valve (still bi-cuspid). I have a son that is 11 months old with a clean bill of cardiac health!

Nikki … I played Varsity Soccer, Varisty Tennis, Swimming, and Basketball. Your son will be fine, but trust me he will have a different appreciation for life then you can imagine!

I am currently only on a Beta-Blocker and low dose aspirin. If you have any questions feel free to contact me at ko37784@gmail.com

Thanks.

Scott H

By: KRIS PINN

KRIS PINN — Wed, 25 Feb 2009 02:36:20 +0000

DEAR ADAM, I JUST UNDERWENT WHAT I THOUGHT WAS A BICUSPID VALVE REPLACEMENT. DURING SURGERY IT WAS IDENTIFIED AS A UNICUSPID. I AM 40 YRS OLD HAVE THREE CHILDRED AND LIVE A ACTIVE LIFE. I WANTED TO LET NIKKI KNOW THAT AS LONG AS YOU WATCH IT EVERY YEAR WITH A CARDIOLOGIST HER CHILD WILL LIVE A GOOD LIFE

By: JANET COYLE

JANET COYLE — Sun, 21 Dec 2008 18:02:36 +0000

I have had three pleural effusions since my aortic replacement on Oct 30th.
The procedure to drain them is unpleasant and each episode seems to take more energy out of me. Do you have any info on this, how long they usually continue and if ther are nay more permanent solutions? Thanks

By: nancy mallinger

nancy mallinger — Sat, 20 Dec 2008 02:30:50 +0000

I had aortic valve replacement 5 weeks ago at the Cleveland Clinic. What they suspected was a bicuspid valve actually turned out to be unicuspid. I didn’t realize that was so rare.