Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Hello,

I've been looking for a forum where I could share my heart experience with others.  Hopefully this will be a great place for that.  Here is my story.

I was born with a bi-cuspid aortic valve and when was 24 years old (2005) I began showing symptoms that could not be ignored. ie... trouble breathing. I underwent a open heart valve replacement surgery. At the time my aorta was mildly enlarged at 4.1 cm. The doctor attributed this enlargement to the excess pressure my heart was under and it was not indicated to do a aortic repair as well. While I am tall, 6"2", I do not show the classic physical signs of Marfan's syndrome other than having valve issues. Fast forward to 2012. Upon having to switch doctors due to mine leaving his practice, I had a new echocardiogram performed for my new doctor to look at. This test indicated that my valve and heart looked great, however my aorta has expanded and needed to be looked at closer. In April of this year I had a cardiac MRI to get the most accurate measurement possible. This test indicated that I have an aortic aneurism that was at 4.9 cm wide. The hard part is that it is difficult to compare this to my prior tests because those tests are not as accurate as this current one and they were performed by yet another doctor when I was living in a different state.

From what I understand, typically aortic aneurism repairs are recommended when the aorta is at the 5cm mark. My doctor has told me that for me, this will be pushed back a little bit further (5.3-ish) as a 2nd open heart procedure for me would be a little more dangerous due to scar tissue. I will be having another MRI in October of 2012 to see if there is any change from my test in April. This will tell us if it is still expanding and what our next steps might be.

So I suppose my question is this.  Has anyone ever had a 2nd open heart procedure?  How much more dangerous is it to have a 2nd one?  Also, at 4.9 cm wide, am I in immediate danger?

Another question, does anyone have any experience with an aneurism like what I have without having any sort of connective tissue disorder?  Are there any other disorders that need to be explored other than Marfan's syndrome? 

I look forward to having discussions!  It will be nice to know that I am not by myself out here!

Blessings,

Michael

Tags: Aneurism, connective, disorder, heart, marfans, open, tissue

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Michael, I don't have the exact issue you do, except that with my AD, I have no answers either - even with them having biopsied my aortic tissue after both of my surgeries.  Marfans doesn't run in my family - I'm only about 5 foot 4.  I wasn't aware of any birth defects and I never had high blood pressure etc., and am only on the meds now in order to prevent further issues.

I have had 2 major surgeries - 12/28/2004 and 7/7/11(and then 7/17/12 due to a hernia along the incision site from last years surgery).

It's scary no matter when or how "serious" the surgery might be as knowing what we have - the risks are higher than for "normal" people.

Is it survivable - I believe so - it's not easy - I won't lie - the blood loss we sustain during surgery(even with blood transfusions) takes its toll.

My first surgery was an emergency so I had no choice - the 2nd I had to decide when since my aneurysm had grown to surgical recommended size (for women it's smaller than for men).  It's not that I had a choice as to if I had the surgery.  I have 4 kids, a great husband, and a caring family/friend network that I had to rely on during recovery.  For me, I chose to have it while I was still strong - and not weakened by the toll my aneurysm could have taken on me as my arteries to my kidneys were enlargening also. 

Have they suggested doing another MRI in like 6 months, to make sure if anything has changed?  I know it's hard to distinguish between tests unless done exactly the same way -- for me, just the angle of the test made a difference in measurement.

I just know that as the aneurysm gets larger, the percentage of chance of it dissecting or bursting increases --- the doctors can't say if it will or not, they can only base off of experience and recommendation.

I would base your decisions on what your gut is telling you.  I knew inside that something was off Spring of 2011 so I pursued finding another specialist as my surgeon had retired.  And when the catscan results came back, it was confirmed as to my needing surgery again.  I had to weigh how strong I was health wise at that time versus the percentage of risk in waiting.  I also made sure that I had a strong support system to fall back upon for my kids and so forth.  And then of course, I did alot of soul searching.

None of us want to face surgery again - but I would rather not have it be an emergency like my first time.

I wish I could be of more help as I don't have the exact issue as you - but anyone on this site that's had surgery once, twice, etc., can understand your predicament.  We can't win either way.

Please keep us informed of your path.  We are here for you even if just to listen.  I am very thankful to have found others who understand without knowing me or without having the exact same AD issue.

Take care,

Cher

HI Michael,

 

Like Cher I had a second opp in August 2011 to have my enlarging aneurysm replaced by a Dacron implant. I think mine was hovering around the 5 cm mark & the risks, as explained to me, were too great to ignore.

My suggestions are you first keep the aneurysm under close watch, not easy, but any sign of expansion warrants investigation & likely surgery.

In the interim I would try & get fit as possible & as Cher indicated a strong friends & family support group are always a great help. Mentally it’s very important to get your head around the situation & what’s to come.

I don’t know where you aneurysm is but my repair was undertaken by surgery through the rear left shoulder. The Scar runs just below my left breast, under my arm pit & shoulder blade, avoiding opening the chest again. Find out from your surgeon what’s proposed & get as much information as possible.

It’s a long opp, about 13 hours; I lost my voice as the vocal chord runs near that side & had corrective surgery – as I said get as much info as possible. All in all I found the second time around recovery less daunting, but that’s me.

A year later I am almost back to work full time, still a long road ahead, & still much healing needed, but I am alive.

Best wishes on your pending surgery, keep us informed.

Harry

michael,

i am not sure it helps, but i had a 2nd open heart procedure. after my dissection was repaired i was sewn and wired up and sent to icu, but on the next day i had a stroke and during the chaos that ensued the team of doctors also noticed that i had a contusion of the lungs because something inside was leaking. so they cracked me open again. i know it is only a day after being initially open up and that realistically there was no scar tissue there to cause complications but twice is twice.

the only thing i notice from it is that the left side of my chest bulges slightly. i don't know whether or not it took longer to heal or was more painful than "normal" as i don't have anything to gauge against.

my dissection was caused by a connective tissue problem combined with a bicuspid aortic valve that weakened the point of dissection. i do not have marfan's, ehlers-danlos or anything similar. i do have an ACTA-2 problem though. you could get in contact with the university of texas and ask if they would like you to take part in their genetic study in order for you to find out if you do. see this link for information.

hope that this helps!

r

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