How long have you had your aneurysm?

[Bigred]

For the members that have aneurysms and are watching and waiting, how long has it been since you've been diagnosed?

For those that have had the surgery, how long was it from being diagnosed to getting surgery?

And if you could include if you are on or were on beta blockers.

trying to get a "real world" average. I know there's data that shows growth rates from.07cm - .17cm per year but not sure how accurate it is considering my aneurysm has been 4.5 -4.7cm for the last 8 yrs.

 

[Danny]

I was diagnosed in Feb of this year, and had surgery Oct.13th this year.

 

[Equusz]

Found out about it last month, but when they pulled my only other chest CT (2006) they found out it was the same size then. So, 4.5 cm for the last 3 years (or longer, who knows).

The radiologists won't call it an aneurysm. 3 of them have insisted it's "ectatic" not "aneurysmal". I'm getting an opinion I can trust next month at Stanford, so we'll see what they have to say. In the meantime, watch and wait and hope there's no explosion.

 

[mainframe]

During my first surgery the doc's told me the aneurysm was at 4.2 The last couple of months as I've gone through the grind again, I've been measured at 4.9; 5.0 and most recently at 4.8 at my pre-surgical tests at Stanford. The first surgery was 7.5 years ago.

The surgeon I saw up here in Seattle told me that it was really hard to predict the size an aneurysm would grow.

While he was trying to tell me he might only replace the valve rather than valve + aorta work depending on the complexity of the surgery, he said that my aorta stay at 4.8 - 5.0 for ten years. I didn't like the idea of waking up with a new valve and a aorta still at 4.8 - 5.0, thus the trip to Dr. Miller at Stanford.

 

[Star54]

Diagnosed 6/09/09 5cm
Surgery 07/30/2009
No prior CT scans to compare it to.
On Metoprolol for 8 years.

 

[Equusz]

Mainframe: Did Dr. Miller say you needed surgery?

I haven't seen him yet, but have been corresponding with his nurse practitioner (who handles his intake) and he says Dr. Miller's not likely to recommend surgery now. But he'll know more after he sees my images and does some of his own.

--Equusz

 

[Duff Man]

I found out about my "dilitation" in march of 08. They measured it at 4.5cm. I've since had Ct scans and an MRI that measure it at 4.1-4.2cm. In the few years prior, I had echos that measured 3.7-3.9 centimeters, albeit echos are notoriously inaccurate.

I don't know how long I'll have to languish with it before I get it corrected, but Dr. De3b (the aorta guru) at UofM says 4.5 cm is the minimum to consider surgery as an "elective" procedure. I don't mean to be morbid, but I still don't know if I will elect for it at 4.5 cm considering that some people just never wake up from the surgery. I have serious trust issues in that regard. I just don't want to be "that guy".

I've been on beta blockers for about 5 years. I'm 26 years old. I imagine I'd be dead right now without them.

My game plan is to get a yearly MRI and deal with the big decision when i get to 4.5 or if it grows faster than acceptable. I will try my best not to get another CT scan because of the ionizing radiation. I wear a medical alert bracelet and medical alert wallet card that will let paramedics know if I pass out that it's not just some guy having a dizzy spell. I fight to keep my fears about my aorta shelved in the back of my mind every day.

Best wishes my friend.

 

[Lynlw]

I found out about my "dilitation" in march of 08. They measured it at 4.5cm. I've since had Ct scans and an MRI that measure it at 4.1-4.2cm. In the few years prior, I had echos that measured 3.7-3.9 centimeters, albeit echos are notoriously inaccurate.

I don't know how long I'll have to languish with it before I get it corrected, but Dr. De3b (the aorta guru) at UofM says 4.5 cm is the minimum to consider surgery as an "elective" procedure. I don't mean to be morbid, but I still don't know if I will elect for it at 4.5 cm considering that some people just never wake up from the surgery. I have serious trust issues in that regard. I just don't want to be "that guy".

I've been on beta blockers for about 5 years. I'm 26 years old. I imagine I'd be dead right now without them.

My game plan is to get a yearly MRI and deal with the big decision when i get to 4.5 or if it grows faster than acceptable. I will try my best not to get another CT scan because of the ionizing radiation. I wear a medical alert bracelet and medical alert wallet card that will let paramedics know if I pass out that it's not just some guy having a dizzy spell. I fight to keep my fears about my aorta shelved in the back of my mind every day.

Best wishes my friend.

Interesting, Justin's aortic root is 4.3 on MRI

 

[mainframe]

Yes I need surgery but because the bovine valve that replaced my native valve 7 years ago is leaking severely, not necessarily because of the aorta. The aorta is something he will fix while he's in there.

 

[Lynlw]

I found out about my "dilitation" in march of 08. They measured it at 4.5cm. I've since had Ct scans and an MRI that measure it at 4.1-4.2cm. In the few years prior, I had echos that measured 3.7-3.9 centimeters, albeit echos are notoriously inaccurate.

I don't know how long I'll have to languish with it before I get it corrected, but Dr. De3b (the aorta guru) at UofM says 4.5 cm is the minimum to consider surgery as an "elective" procedure. I don't mean to be morbid, but I still don't know if I will elect for it at 4.5 cm considering that some people just never wake up from the surgery. I have serious trust issues in that regard. I just don't want to be "that guy".

I've been on beta blockers for about 5 years. I'm 26 years old. I imagine I'd be dead right now without them.

My game plan is to get a yearly MRI and deal with the big decision when i get to 4.5 or if it grows faster than acceptable. I will try my best not to get another CT scan because of the ionizing radiation. I wear a medical alert bracelet and medical alert wallet card that will let paramedics know if I pass out that it's not just some guy having a dizzy spell. I fight to keep my fears about my aorta shelved in the back of my mind every day.

Best wishes my friend.

Interesting, Justin's aortic root is 4.3 on MRI (his ascending is 3.6)
sorry for the duplicate I tried to delte this but can't

 

[DavesMom]

Thanks for posting this question, bigred. I've been wondering about it myself and am very interested in the replies. Wow! Yours has been stable for quite a while.

I had an aneurysm repaired in '99 and another (4.5 cm) was found in 2008 when I had my first CT scan. Don't know exactly how long it's been there. I've been on a beta blocker since March of this year and will have another CT in March of next year.

Cheers,
Michelle

 

[Superman]

Per echo, my aorta showed 2.6 cm in 2007; 3.2 cm in 2008; and 4.3 cm in September of this year. A CT scan showed the aneurysm at 4.9 cm. I had it replaced on October 15.

Everyone has their opinions, but I trust my chances on a table far more than driving down a road somewhere miles from a hospital. I felt mine was growing way too fast to wait for yearly CT's to try to peg down a rate. With four young children and a wife depending on me, it just seemed the right thing to do to put this behind me.

 

[Equusz]

Wow, Superman, that's pretty fast growth alright. Surgery definitely was warranted.

I wonder when/if mine will start growing like that...

 

[surfsparky]

Mine has grown slowly since surgery 6 1/2 years ago. Latest echo shows 4.4 cm. I've been on beta blockers since surgery.

 

[skeptic49]

This is an interesting thread. I found out about my "dilated" aorta about a year ago. In a few weeks I'll get another echo and hopefully find out if it is stable.

Jim

 

[tphillips]

Mine was discovered in 2005 and I will be having surgery to replace my aortic valve on Oct 30th and will have the aneurysm repaired at the same time. When it was first discovered, the aneurysm measured at 4.2cm and now is at 4.6cm.

 

[csutherland]

Jerry's was discovered in Jan, 2005 by echo and he underwent a TEE the same day. They were saying 5.3 at that time but now it sometimes measures 5.0 - 5.1. For the first time his cardiologist made the comment that "It's not really an aneurysm, just a widening." That's not what two surgeons have said, one of which is world-class.

The good news is it's not growing.

 

[Maryka]

My aneurysm was discovered on a "routine" chest xray in 1991. I gave up all aerobic exercise, took huge amounts of beta blockers and other BP meds and had checked CT scans for years. It was stable at about 4.6-4.7 for many years--even just before surgery. In 2002, however, Stanford's Dr.Liang found I had a bad and bicuspid aortic valve which would have to be repaired in a few years.

I had to have valve replaced in Dec. 2008 and Dr. Cameron fixed the stable aneurysm at the same time. 17 years from discovery to repair!

 

[Equusz]

I've heard good things about Dr. Liang - supposedly one of Stanford's best cardios. Dr. Miller's clinic is hooking me up with him for a full workup to find out exactly what my condition is and when/if they're likely to recommend surgery.

 

[cbdheartman]

I sort of learned in retrospect where things stood for me. My 2004 CT Scan which the radiologist read as being normal turned out to be about 4.2 cm (according to Dr. Cameron). My 2006 CT scan was read at 4.6 cm by the radiologist (never had Dr. Cameron look at that one). My Cardiac MRI and CT Scan from (both taken this spring) read somewhere between 4.8 and 5.0 cm (my aneurysm was about 5.0 cm at surgery). So in 5 years I grew .8 cm. Dr. Cameron told me that the average growth rate of .1 cm a year really is deceptive because that takes into account folks whose aneurysms remain steady for 10 years and those who grow 1 cm in a year.

As for when to get surgery, this is a difficult question that folks on here know I struggled with. Things worked out well in my favor and I understand and am sympathetic to the reasons surgeons and cardiologists say to wait. Based on their experience many aneurysms remain steady -- Dr. Cameron couldn't remember anyone he'd told to wait having a dissection or rupture -- and also they worry about starting the clock on future surgeries. I think many here and in the medical community (Hopkins Genetics Clinic for instance) including Ross are rightly more aggressive in their approach (or conservative from another perspective -- they don't want someone walking around with this risk for years and years. Also, after seeing the incredible numbers for the 372 Marfan aortic root replacements that Hopkins did over 30 years (http://ats.ctsnetjournals.org/cgi/content/full/87/5/1344), two operative deaths out of 372 surgeries and those two were dead when they arrived in the OR, I am more inclined to agree with those who say go for the surgery now (especially if you are like me and you are a worry wart who would be weighed down by anxiety watching and waiting).