Ascending Aortic Aneurysm

I am in central NJ. We currently see a pediatric cardiologist in Hackensack. I am not sure when he would go to a regular adult doctor? He is 17. We have also had a consultation a few years ago, at CHOP. Any recommendations you could give me would be useful. There are some very good cardiac surgeons in this area, but when you narrow it down to pediatric surgeons who have done a lot of aaa cases, there are not many left.

Thanks jdiane

Post Edited (linda88) : 2/23/2014 11:01:39 AM (GMT-7)

Thank you for the links.

Oh, and I guess I should have mentioned New York-Presbyterian Morgan Stanley/Komansky Children's Hospital,they are ranked #4 in heart programs for kids and would be closer to you. I don't know anyone there, but have heard great things.

http://childrensnyp.org/mschony/cardiology.html

Glad you chose a hospital to start with and hope it is the one that meets your needs. Your son is fortunate to have a loving and caring Mother.

I wish you peace,

Kitt

 

I don't know what I have to add to the discussion but I wanted to reach out to a community of understanding people and tell my story. I was recently diagnosed with a thoracic aortic aneurysm off 5.5cm. I am a 38yo, pretty healthy guy. I have run, lifted weights and done competitive martial arts for 20 years. I started having chest pains last spring. This started leading up to a major reconstructive ankle surgery due to a trail running injury. I had never had surgery so my primary care do chalked it up to anxiety. A few weeks go by, still having pain so he does an EKG. He comes back and says he sees an abnormality that would be indicative of congestive heart failure but it is probably an anomaly. But he sends me for a nuclear stress test to be safe. That shows that about 15-20% of the blood being pumped out of my heart is leaking back in. So, now they clear me for surgery and say we need to investigate this more thoroughly a few weeks after your ankle reconstruction.

A few weeks after surgery, I get an echo. The echo says I have a bicuspid valve and a 4.2cm aortic aneurysm. I am referred to a cardiologist at this point. My cardiologist who is a great doctor says we just need to keep an eye on it, come back in a year. Well I keep having these chest pains that come and go and occasional shortness of breath. So I called the cardiologist and he set me up to do a CT scan. This was 2 weeks ago, about 8 months after the echo. Doctors nurse calls me a couple days later, says the cardiologist wants to talk to me himself, can we set up a time tomorrow? Always a good sign when the cardiologist wants to talk to you directly, right? :) In the meantime in she called in a script for Toprol XL. So, I talk to the doc, he says I do NOT have a bicuspid valve and my thoracic aneurysm is about 5.5cm. I have no idea what to think at this point. Obviously, the CT scan is a much better imaging technology, but could my aneurysm have grown 1.3cm in 8 months? I wish I had the echo at the local heart center at the hospital. I just had it at the primary care doc by a traveling technician because at that time they were still trying to figure out what was wrong. I see a cardio-thoracic surgeon on Wednesday. The waiting is nerve racking. From all that I have read, I will be having it repaired soon. 5.5cm seems like almost a no brainier and I am having symptoms.

rnc76
Wow, what a lot to have to deal with! I totally understand what your going through. Please let us know how it goes with the surgeon on Wednesday. It's a process, but you will make it through all of it, and be on the other side before you know it. Anything you want to know about the surgery, how you will feel afterward, etc., please feel free to ask. Kitt gave you an excellent link, knowledge is power.

Well, I had my appointment with the surgeon this morning. I think I may have had my terminology off. I actually have an aortic root aneurysm. He is recommending at my age that I have a valve saving procedure called the David Procedure because my aortic valve is healthy. He does not want me taking blood thinners for the rest of my life. He is calling colleagues around the country to see who the best surgeon for my situation is. He trained with and is friends with Dr. Lars Svensson at the Cleveland Clinic, who he knows does this procedure, if I was willing to travel. However, he also wanted to research some options closer to home. He is doing some research for me and I have a follow up in a week to discuss my options. He is a good man to do this for me, I feel blessed.

Just found this forum today, have read posts in the past about thoracic aortic aneurysms but they are very old. I am 37 and have a 4.3 aneurysm at the root of my aorta. Also, have a right to left shunt and just recently had an ablation for A-Fib. I'm 6'1" 170lbs and like to run, but am scared to... I'v seen several different doctors and some say to run and some say not too... this is frustrating, feels good to run, but get paranoid.. I used to lift weights to stay strong because of back issues, but with the aneurysm I have stopped, and now the back pain is worse than ever... Need to exercise more to stay healthy and ease the anxiety, but don't know... life is miserable!!