Familial Aortic Aneurysm

[Jjc2005]

In April, 2003 my only sibling died from aortic rupture/dissection).   Since my mother had died at the same age (60) of an aortic rupture, I was checked.  I have a dilated aortic root of 4.1 cm, no insufficiency.  I got my sister's medical records, learned that in Feb. 2003, she had been scanned, her root was at 4.5 cm, up 1 cm from the year before.  She also was told she had moderate aortic insufficiency.  She was a smoker (my mother was not), cholesterol numbers were not awful (175, 134 LDL, 54 HDL, 150 triglycerides), no history of hbp.  Went to the hospital  at 6 AM on April 2003 with  nausea, severe headache, lower back pain radiating into her legs.   She died that night at 6 PM, still waiting to be scanned. I also discovered that a male cousin's sudden death (paternal side, non- smoker, age 51) was from an aortic dissection.  An Aunt on the paternal side (smoker) survived a surgery for aortic dissection in 1985.  Since my sister died with the root still below the standard usually used to determine surgical intervention, it leaves me wondering.   How much should I press for surgical intervention?  I am 59 years old so I am coming up on the age where my mother and sister died.  In four scans my dilation has not changed.  My cardiologists wants me to limit scans to one per year instead of every six months.  His goal is to keep me out of surgery.  
Should I continue scans every six months or is that too much radiation?  What other test could be used?  I have no symptoms at all so far.  Thanks

[Cleveland Clinic]

Jjc,

You certainly have an impressive family history. I think close surveilance is certainly indicated. General recommendations are every 6 months to 1 year.  I think it would depend on your physicians comfort level. If youve had a few scans with no change, then moving to a year is not unreasonable.

We are trying to figure out ways to identify people at risk before they have changes on the scans. This is still a ways off.  Until then, periodic screening and close management of your blood pressure and cholesterol are peobably best.

good luck

[Gaspipe]

Are you two on preventive meds?  Beta blockers or the like to reduce shear stresses on your vessels. Many cardiololists seem to advocate this in situations like yours.

[Jjc2005]

Yes, I am on 25 mg of atenenol, as well as 25 mg of a diuretic (hdz), and folic acid. I walk daily for over an hour and take my blood pressure every other day and run about 105/67 pretty consistently.

[PJmomrunner]

I can only imagine how frightened you must be given that your sister and mom both died of aortic root dissection!  How fortunate you are to know in advance of any symptoms that you also have root dilation.  I would be very concerned about monitoring your dilation frequently enough given that your sister had documented dilation of 1 cm in a year.  I know that various studies have attempted to quantify average dilation and I have no idea if there is concensus on what is average (hoping to find out), but I am certain that 1cm in a year is way above average.  As a non-smoker, I would like to think that my aneurysm couldn't possibly dilate as swiftly as a smoker's, but since your non-smoker mom and your smoker sister both dissected at age 60, it seems that smoking status may not be a key factor for you.  Certainly smoking effects overall tissue health, but may not have as much bearing on your particular aortic tissue condition as its inherent genetic make-up does.  I also wonder if radiation from CT scans is an issue or whether the benefits render the risks insignificant.  What about MRI instead?  You don't mention your size.  I bring this up because some of the literature I have come across suggests that particularly small people and women in general should be assessed with different criteria. Good luck.  I'll be keeping a look out for you on this forum.

[Jjc2005]

Thanks pjmomrunner.  I am pretty average size, 5'5", about 159 lbs (and working on losing another 15 lbs at least).  Most of my life and my sister's life we were about the same height and weight (about 130 to 140 when we were younger but both gained weight slowly after menopause).  I did smoke at one time.  I had smoked for about 15 years, quit for 10, then smoked for 10 then quit again FOR GOOD.  My sister on the other hand smoked for 40+ years.    But I agree, in that I think the genetic component is the greatest issue in our family because there are several other sudden deaths documented on both sides of our family with smokers and non-smokers.  We always just assumed they were all heart attacks or strokes.

Every decision I make comes with a consequence so I want to be as informed as possible from many sources.  It is helpful (for me) to talk with others facing such decisions and hearing what they have been told.   I hope both of us can get appropriate information to help us make the best choice for each of us.

[PJmomrunner]

I am carrying a brief synopsis of my "delicate condition" :-) in my jacket and in my wallet in hopes that if I find myself in an emergency room and unable to relay the info, I will not be assessed for indigestion or heart attack while I die of aortic dissection!

[Jjc2005]

I wear a medic alert bracelet that says I have an aortic aneurysm.  One source of my concern (as well as anger and frustration) is that my sister went to the emergency room with knowledge of her condition (dilation of 4.5 and insufficiency) on a card and with her husband who brought her card along.  It was also noted on the records that our mother had died of an aortic rupture.  Still she was there 12 hours and was never scanned nor did the ER call in any cardiologist, let alone her cardiologist.  I am hoping the official medic alert bracelet will be of more value if needed.

[PJmomrunner]

Yikes!  That is NOT very reassuring.  I'm with you on the bracelet--I'll order one today.  Do you live in the same area your sister did?  How far are you from a major medical center?  I'm at least two hours from where I would choose to go and at least an hour from a hospital that has experience handling dissections.

[Jjc2005]

Good idea pj. I think the bracelet is a better choice.  I got my bracelet off the medic alert website.  
No, I don't live in the same state as my sister.  She was in the Philadelphia, PA area (suburbs where the hospital is not very good).  However, in Philly there are many large teaching hospitals where they are very experienced in aortic surgery.

I live in Colorado Springs, CO.   There is a hospital here that does the surgery, and I am about an hour from the University of Colorado Hospital which also does it.  How experienced they are in this procedure, I really do not know.  But I have already talked to a thoracic surgeon here.   If an emergency does occur, I wanted to know which surgeon to ask for.  If I have elective surgery, I guess I can go anywhere insurance will cover.

[58mom]

I also have what has been termed "familial aortic disection" although nobody inmy family has a dialated aorta.  I had a valve replacement and aortic arch graft in 2000.  I am curios to know if you have any dialation in your pulmonary artery?  My pulmonary artery dialated 5mm from 2000-2004 and another 5mm in the last year.  It seems to be rapidly approaching the size that my aorta was when it needed repair however, the internal pressure is low.

[scrph]

A related discussion, Familial Aneurysm was started.