UPDATE**Surgery for ascending aortic aneurysm much sooner than I ever imagined

[HopefulHeart]

Just found out this afternoon that my ascending aortic aneurysm has gotten larger (went from 4.2 to possible 4.8 in 1 1/2 years). I'm going for an MRI in a couple days to get a measurement on it, but surgery looks likely since I also have a BAV. I'm 39 years old and honestly thought the surgery would not be until I was 50 or 60, now it looks like it will be very soon. So I will be getting a repair near the aortic root for the aneurysm and possibly getting the valve replaced although the valve is fine other than being bicuspid. To say I'm scared is an understatement. I'm beyond terrified when I think about the surgery and just want to come out ok on the other side. Thanks to all of you for being here and listening to me. Your advice means the world to me and is what helps me sleep at night. I live in Charlotte, NC. If I have to travel to Cleveland, OH for Cleveland Clinic or the Mayo Clinic in MN I will. Although I will do my research to see if I can stay and have it done locally. I'm not too crazy about sitting on a plane or riding in a car for several long hours after the surgery. :frown2:

 

[Guyswell]

See my other posting. As for being 39... I was 41. It's a good age to have this surgery. You're stonger, your immune system is robust and you will heal quickly. As I read the statistics, your odds of coming out O.K. on the other side of this surgery are close to 99%. If you choose to travel, don't worry about the plane trip home. Twice, I've flown from Cleveland to Kansas City about one-week after OHS. You'll be tired but it's really not bad at all.

 

[mbeard]

Just found out this afternoon that my ascending aortic aneurysm has gotten larger (went from 4.2 to possible 4.8 in 1 1/2 years). I'm going for an MRI in a couple days to get a measurement on it, but surgery looks likely since I also have a BAV. I'm 39 years old and honestly thought the surgery would not be until I was 50 or 60, now it looks like it will be very soon. So I will be getting a repair near the aortic root for the aneurysm and possibly getting the valve replaced although the valve is fine other than being bicuspid. To say I'm scared is an understatement. I'm beyond terrified when I think about the surgery and just want to come out ok on the other side. Thanks to all of you for being here and listening to me. Your advice means the world to me and is what helps me sleep at night. I live in Charlotte, NC. If I have to travel to Cleveland, OH for Cleveland Clinic or the Mayo Clinic in MN I will. Although I will do my research to see if I can stay and have it done locally. I'm not too crazy about sitting on a plane or riding in a car for several long hours after the surgery. :frown2:

Hopeful heart,

I am thinking about u. My ascending aorta is 4.2. 4.5 diagnosed in August 2013. I have no idea how fast it is growing, but I am living with a pounding heart beat. I go back to surgeon in January 2014, after 6 months . I also have a BAV. I am 57 years old and we just discovered it. Blew my mind to find this.

I am so grateful to have found this site for research into other people with similar issues. It helps ot to feel all alone.

 

[pellicle]

I too agree that having surgery younger is much more sensible than waiting. Apart from to simply delay it what possible benefit could one get from waiting till one is sick, frail, weaker, weaker bones ... to have surgery?

Get in early and then start building your strength again before you become old.

I wish you all the best for the surgery. Remember that these days (compared to my earlier surgeries) its a well oiled machine and every contingency has a procedure.

Best wishes

 

[epstns]

If you feel most confident going to somewhere like Cleveland Clinic, do not second guess yourself. Also do not panic about travel after surgery. Just tell the Clinic what you fear and let them help you plan it all. They do this all the time. They have lodging available after surgery and will know how to monitor you and manage your care until you are ready to travel. They will also know how to gauge when you will be ready to go. Since they are so experienced in all the logistics, just use their skills to manage your situation and I'm sure it will work much more smoothly than you expect. Things that are major issues to mere mortals such as we, are everyday commonplace tasks to the folks at these world-renowned clinics. That is, to me, one of the signs of a true professional. They undertake tasks that to us seem overwhelming, and they make it look easy.

 

[jhc1]

I'll echo some of the comments above…I had my AVR and ascending aneurysm repaired in Houston in June…the folks that do this are consummate professionals, and they do it all the time…it's a shocker for those of us who go through it, but "another day in the office" for the pros. Choose a hospital that does frequent OHS and a surgeon who's done your specific procedure a bunch, then let them do what they do best…Best wishes for a great result

Joe

 

[Rachel]

I'm sending positive thoughts your way as well - I had my valve replaced and my aorta repaired when I was 45 (days shy of being 46) - I remember being in shock and I kept asking myself - "how in the heck did this go on for 45 years undetected" – those thoughts quickly changed to "Thank heavens this was detected"

Stay positive - you're lucky that you know about your aneurysm growth before something bad can happen!

 

[Bryan B]

Hi, I posted this on your other thread before I saw this one. I thought I would post it here in case you don't see it on the other thread.

Hi HH,

I had my aortic valve, aortic root, and ascending aorta replaced at Duke Medical Center by Dr. G. Chad Hughes. Duke is ranked as the 6th best heart hospital in the country and is only about a 2 hour drive from Charlotte (give or take depending on traffic). The link below is Dr. Hughes contact page at Duke. I highly recommend Dr. Hughes as a surgeon and Duke as a hospital. Part of the reason I chose Dr. Hughes is because he specializes in ascending aorta repair as well as aortic valve replacement. Good luck with your surgery wherever you decide to have it.

US News Heart Hospital Rankings: http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery

Dr. Hughes Bio / Contact Info: http://surgery.duke.edu/faculty/details/0066100

 

[Superbob]

I had a similar surgery at age 63 -- replace aortic valve and aortic root. Aneurysm was measured at 5.3 during the surgery; had grown rapidly in the months before. From the stats you gave, it does seem that your time to have it done is drawing near. You should do well.

Though my surgery was done at a great facility in Northern Virginia, I, too, have heard great things about Duke.

All best to you.

 

[AZ Don]

Like you my BAV is well functioning but I needed surgery for my aneurysm - aortic root and ascending aorta. My surgeon estimated a 50% chance that my valve would ultimately need to be replaced, while my Cardiologist pointed out that my valve is the best possible valve I could have right now, better than tissue or mechanical. Tough choice but I decided on a valve sparing procedure. OHS is not something to take lightly, but it wasn't bad and I'll do it again if I have to. I definitely was well enough to travel when I was released from Hospital, though I didn't need to. It is nice to be able to follow-up with the same team that did your surgery and I'm sure there are very capable surgeon's in your area.

A list of top doctors is available here for a small fee: https://www.castleconnolly.com/index.cfm. I believe they provided the data behind the list that US News and World Report used to offer for free.

 

[AZ Don]

I remember being in shock and I kept asking myself - "how in the heck did this go on for 45 years undetected" – those thoughts quickly changed to "Thank heavens this was detected"

Stay positive - you're lucky that you know about your aneurysm growth before something bad can happen!

I'm still wondering how mine went undetected for 51 years. All the times that Dr's listened to my chest and the first time I was ever told that I had a heart murmur was by the echo technician. By that time it was already known that I had an aneurysm. It was mentioned in passing on a test for another condition, and that Dr. didn't even tell me about it. I only found out because I asked for a copy of the report - something I will always do from now on. I do feel very lucky mine was found (something that is probably easier to do after surgery than before).

 

[HopefulHeart]

Hi everyone.....thanks for all your responses. I'm coming to grips with this whole thing and am now looking forward to the surgery as odd as that sounds. MRI for measurement of the aorta will be in the next 2 days, then surgery decisions will have to be made. I will have to decide on whether or not to spare the BAV. If I have the valve replaced, will then need to decide on mechanical vs. tissue valve. All in all, I feel very, very lucky that I know about the aneurysm. Being in the "waiting room" has caused a lot of anxiety for me, so getting the surgery over with would be kind of nice. My goal is to share what I learn with you all and provide the same support to you all that you have given to me. Everyone on this site who has shared their knowledge and experiences with me has been the one thing that has kept me calm through this situation.

 

[HopefulHeart]

UPDATE #2......MRI was done and showed that my ascending aortic aneurysm has not changed. It's still at 4.2 cm. Apparently the echo showed my aneurysm as being larger, but in fact it was not. I am relieved. So I guess it's back to the waiting room for me.

 

[Superman]

Didn't see this before I responded to your other thread. A 4.8 echo would make me want a CT scan or an MRI. And I'd gladly pay the $2,000 (okay - not too gladly) for it.

Had my valve replaced two days prior to my 18th birthday, and my aneurysm repaired with a valve / graft conduit when I was 36. It's a rough month or two, but gets behind you fairly quickly. I know my recovery at 18 was easier then at 36 - but I also look at the coach for the Denver Bronco's is back coaching 4 weeks post op - and he's much older than I was. Everyone is different.