Aortic Aneurysm

[Tab814]

On Feb 9, 2007 I was diagnosed with an acending (ascending) aneurysm.  I have been having problem with pressure on my throat and breathing (especially at night) since Oct. 2006.  The doctors believe that the aneurysm is putting pressure on my esophagus because it already measures 4.1 cm.  They want to monitor it for another six months but that makes me very uncomfortable to wait that long.  Should I asked to have it recheck sooner?  I am a new mom and only 32 years old.  I am scared that if it aready measures 4.1 now it could be well over 5cm in six months.  I do have a heart condition that I have known about since I was six years old, aortic stenosis, but it has alway been a mild case.  Since I have the stenosis checked yearly I would have thought that they would have seen the aneuryam if it has been there for a while.  I am unsure if I should question the doctor but waiting another six month scares me. I already feel like a ticking timebomb.  Any suggestions?  

[Forum-M.D.-MM]

Hello,

Congratulations on being a new mom -- that is great news.  I can understand your concerns.  It sounds like the doctors want to evaluate the rate of progression over the next months before making a decision about surgery.  If the waiting makes your uncomfortable, you should mention that to your doctors and see if they would be willing to reevaluate sooner, like 3 months.  Six months is probably not unreasonble.

It is important to follow your symptoms and make sure that they are not worsening.  It is also important to understand more about the aortic stenosis (bicuspid, membrane, etc).  Bicuspid AVs are more likely to develop ascending aneurysms.

The key is communication with your doctor and making sure you trust them.  Never be afraid to seek a second opinion -- that is your right as a patient.

I hope this helps.  Thanks for posting.

[pbanders]

Sorry to hear about your condition, I had surgery to graft my ascending aortic aneurysm in early '04. I'm male and 48 years old. Typical growth rates are slow, there's a Scientific American article on this topic ("Beating a Silent Killer") that quotes a figure of 0.12 cm/year, so a six-month monitor interval should be OK even for an aneurysm that is progressing rapidly from 4.1 cm. Usual threshold for surgery is 5.0 cm - but if there is family history or a genetic condition is indicated (e.g. Marfan's, Ehler-Danlos), the threshold may be lower. Your aortic stenosis may be a factor, too. You need to work these issues with your cardiologist, and you should feel 100% confident in their plan of action - if you feel uncomfortable that they're not communicating with you, then get a second opinion or a new cardiologist.

If you do progress to the surgical threshold, be aware that the surgery for this condition has progressed and while still risky, it's much better than 10-20 years ago. You want a surgeon who has done hundreds of these operations and has a proven track record. You'll generally get that by going to a major center, e.g. Cleveland Clinic, Stanford, etc.

In my case, I recovered from the surgery well and was back to doing the things I wanted to and was back at work in about 8 weeks. Today, I get monitored yearly and so far have had no ill effects. I take a beta blocker daily, and am fully active. While there may be complications in your case, most people are able to resume their normal activities on about the same schedule as I did. Good luck.

[Schmoomcgoo]

Hi Tab!  Just wanted to back up PBanders said about slow growth.  Six months is pretty cautious even.  

Since you are such a young'un with an aneurysm and known aortic stenosis, there is a good chance you have a bicuspid aortic valve.  About 1-2% of the population is born with a BAV and an inordinately large number of those have ascending aortic aneurysms.  It is most typical for BAV's to have aneurysms mid-ascending on the aorta rather than at the root, which is more typical of Marfan Syndrome.  (Note:  "typical" not "always")

There are a couple of excellent websites I would recommend you visit.  The first is very informative, run by medical people, and I suspect you'll recognize yourself in the descriptions of BAVD: http://www.bicuspidfoundation.com/About_Us.html

The second is an online community of people whose lives have been touched in one way or another by valvular heart disease.  This site is purely for support and they will welcome you warmly and help you get through this difficult time in your life.  There are literally hundreds of people there who have been where you are (or their family member has).  It's www.valvereplacement.com

All the best to you.

[lionne_sg]

Know your concerns.  I have had an aortic valve replacement for 10 years.  The ascending aortic aneurysm is now at 4.8 cm and stable for the last 2 years.  No surgery is planned unless the size starts to change again.  I have a CT to check the size every year now and an echo every 6 months. When my ascending aorta was first found to be 4.6 cm, I had just had a CT for another cause a year before and CT showed no enlargement.  After the valve replacement surgery, the size was 3.9 cm so it took quite a few years to reach the 4.8.  Yours may not change anymore at all.  My advice would be to have it checked as recommended and then put it out of your mind.  Worry is a stressor most of us do not need. Congrats on your new baby.