Severe Aortic stenosis and possible coronary artery problems?

[carly011]

Im 19 years old and i have a bicuspid aortic valve, aortic stenosis, aortic regurgitation and an enlarged aorta. I was born with the BAV and AS. I have had issues with shortness of breath, chest pain, palpitations, fatigue, and dizziness for the past 7 or 8 years. All of my echos have showed mild stenosis and my heart function fine. Finally on my 3rd cardiologist they ordered an echo stress test that showed abnormal readings both at rest and during exercise. They then ordered a cardiac cath. The cath showed severe stenosis. They wanted to balloon it but it was to severe so now i am waiting on a PET scan to check my coronary arteries(because there are some abnormalities that suggest coronary artery problems) and then we will schedule surgery to replace my valve.

Has anyone had severe stenosis NOT show up on an echo? I have had echos every year up until 3 days before my cath, they all showed mild stenosis.

Does anyone have coronary artery problems?

 

[dfelder]

Echos don’t always show everything they need to. It has happened to me before. Some of it depends on the skill of the tech. I have a totally collapsed right coronary. Do you know what specific issues they are looking for with your coronary arteries?

 

[carly011]

I am not sure exactly what they are looking for. All they said is that something about my EKG suggested coronary problems. My pediatric cardiologist is going to talk to an adult cardiologist and then they will do a PET scan of me before and after exercise to look at my coronary arteries.

So an echo can show mild stenosis even though it is severe? WOW! never knew that!

What did/are they going to do for your collapsed coronary artery?

 

[Sarah_Louise]

Hi Carly,
Welcome to the boards
Good luck for the PET scan,
Love Sarah xxx

 

[carolinemc]

Even at that, an enlarge aortic valve is not good anyway. Be sure to ask questions before the procedure and after. You need all the information you can get to know exactly what is going on. No two cardio see the same thing, unless they are on the same board, so to speak. So good luck in finding out everything and hugs for today.

 

[Roberta]

Hi Carly,

Welcome to the forum, but sorry for your circumstances. From my history, I know that my echos haven't always been accurate for me. Often a Transesophageal echo or an angiogram can confirm the degree of stenosis.

Good luck and keep us posted!

 

[carly011]

thanks everyone!! I am having a cardiac CT scan tomorrow morning at 10am to look at my coronary arteries!! After i get those results back i will be scheduling my surgery i believe

 

[Jkm7]

Good luck tomorrow, Carly.

Hope it goes well.
Please let us know.

 

[Duffey]

Did you get your results back, Carly? Have they scheduled surgery?

 

[carly011]

I did get my results back! Thankfully my coronary arteries look good, so no bypass for me!! I have a surgical consult on the 7th to talk about possible valve options and to pick one. Hopefully i get to schedule my surgery that day, or at least im going to push for it! im sick of this waiting game

 

[Eva]

Good luck, Carly.

Keep us posted.

 

[carly011]

So i just got back from my surgical consult! Apparently my valve is pretty bad, they said not to wait even 6 months to do it, they want to do it this summer, probably early summer. I called his nurse to schedule a preop date and a surgery date. I am just waiting for the call back.

He is going to attempt a repair, but if that does not work he will replace it

I have decided to get a tissue valve, probably pig or cow. Though he is not 100% sure it will fit, he says he thinks it will but i am right on the edge of it fitting and not fitting so if he gets in there and it doesnt fit he will replace it with a cadaver.

 

[carly011]

Just got the date! My pre-op will be July 5th, Surgery will be July 9th!

 

[escargome]

Good Luck Carly. Now that the important decisions have been made. Take some time for yourself. Get your house and finances in order and just enjoy your friends and family. So your heart will be mended and you shall get a whole new lease on life.

 

[Garrett]

Hey Carly,

I am 19 too, and going in for surgery to get my aortic valve replaced on later this month. I have Aortic Stenosis and a Coarctation of the Aorta. My experience with cardiologists has always been something like: "we will just keep an eye it <aortic valve> and see what happens" ..this was a fairly common line I received the past couple of years in my (yearly) check ups. It really wasn't a problem until I went into a fib for the first time, this last spring...that wasn't a fun experience. I talked with my cardiologist and we decided that an AVR would be the best thing. I can relate to the shock of "Wow, I am getting surgery" after you have been living under the assumption that everything is -alright-.

Also, I received an MRI and EKG in prep for for my valve replacement. The EKG, like yours, was irregular both at rest and with exercise.

I also posted the same thing on forum.achaheart.org, feel free to pm if you like to talk.

-Garrett

 

[Rachel]

Hi Carly,

I'll be thinking about you, I had my surgery last July and everything went fine (I found that waiting is/was the hardest part)! I also agree with Chris, now take some time to prepare for recovery and enjoy your time with family/friends.

Good luck!

Rachel