What Diameter Aorta Requires Replacement?

[Brynn]

Thank you guys. I am so grateful to have found this forum, your posts are informative and valuable. I agree Ultrarunner and Don, the change is alarming. I believe my size would make my numbers much more dangerous than someone who is bigger, the body surface index calculator I believe it is called. I had an appointment today to measure bp and have blood work. I have never been on any medication because I have never had any issues and I still don't, but now I am on Losartain and a hydro...... I asked the nurse to also convey this concern and my new dr is very good about getting back to me. I am fortunate to live in NC, so my next step is a trip to Duke if she doesn't feel the need to do another CT sooner, this time with contrast. Honestly, I feel amazing, I work out everyday, run, bike, tennis, golf, I was doing HIIT workouts which involve weights but was told these are very dangerous, I never knew this! Now I'm afraid to do anything, this diagnosis certainly is paralyzing. Thanks for your feedback, I will def take your advice

 

[Ultrarunner]

I'm surprised they would do a CT scan without the contrast medium. And that you were put on blood pressure meds. That wasn't even brought up with me. But my running means my BP is normally 100/60. Don't let it paralyze you. There's lots you can do to stay fit. My cardiologist said to keep on running, although I did stop racing, intervals etc.

 

[Brynn]

To address a couple comments and clarify my history. My bp has been running around 140/80 for a couple years, none of the new Drs I went to last year seemed concerned about this, so when I found new ones this summer I suggested to my internist that perhaps I could benefit from a diuretic to lower this number and help with fluid retention. He agreed and I take a low does 25 mg when necessary. The 20 mg losartain was prescribed only 2 weeks ago, after I met with a new cardiologist for my routine annual exam. She prescribed after reading the unexpected results of my echo, she explained that it changes the way the aorta functions and she is closely monitoring my bp, labs, etc. Also, I learned that the echo I had a year ago was not legible, the incompetent cardiologist I went to last year never told me this, and so was told, with all things being said, I was doing great. Also, my coarctation repairs were due to congenital heart defects, not aneurysm, besides this and BAV, I also have a VSD. Needless to say neither new cardiologist or I expected the results to turn out the way they have, since my 2011 echo was normal in regard to aortic diameter. . Also I think it's important to note, I have had a very stressful 2 years. I had to sell my beautiful waterfront home in 2013 due to downsizing, it sold in 1 week, moved to a horrible rental for 1 year and then moved from Lake Norman to the coast of NC in March of 2014, huge life changing events. I had to establish new Drs. and unfortunately the 1st cardiologist I went to was incompetent. Also, I spent 8 months this year traveling back and forth to MI to be my moms caretaker when she unexpectedly was hit with leukemia, she passed in May. I am executor and have had a great deal of stress as a result of this responsibility, including selling her home, all her possessions, dealing with my siblings etc etc and great sadness and loss. This stress, all the heavy lifting that multiple moves involves, I think, may have exacerbated my condition. I would appreciate any input on this thought? At bp check with nurse on Thursday, I did request a CT with contrast now as opposed to 6 months and she concurred, waiting to hear. My new cardiologist likes to make personal phone calls on Sunday, she's called me the last 2, lol so we shall see!? I am playing golf today, went for a nice run yesterday and am feeling great physically, so am trying to stay optimistic. Thanks for listening, any feedback is much appreciated, happy Saturday

 

[Ultrarunner]

That's great that you are getting a proper CT scan now vs. six months from now. And such personal attention! I can't imagine a call from my cardiologist. My last call from a physician was a year and a half ago when my GP called to tell me that an echo showed my valve wasn't too bad yet. I did another 20 races after that, mostly involving mountains and a heart rate that would get into the 170's. He had missed that the aorta diameter was double flagged and in red! I ask for copies of everything now.

As to your stress question, I want to know the same thing. I posted a question on stress and dissection here, but didn't get a huge amount of info. Maybe there just aren't studies on this. There was the study that showed 40% off dissections happened after a stressful event. I've read a number of stories where dissections happened after death of a loved one or major gambling losses. What's not clear is can stress speed the degradation of the aorta even if blood pressure is low (in my case), or controlled? With all the stress you went through, maybe your higher blood pressure was higher than you realize, and sped up the increase in your aorta diameter?

 

[Brynn]

Thanks for your feedback Ultrarunner. Yes, I was under a great deal of stress, not only caring for my mom and all that entailed, but stressing, along with my 2 kids about graduating college, finding jobs which resulted in moving far away, and cutting the apron strings, very hard for a mom I know my blood pressure was actually much higher at times during this period, especially from November 2014 till July of this year, when everything, including selling my moms home were resolved. Obviously, losing her is still very raw for me. I think you are probably correct, no studies on stress, but there needs to be one! I believe it plays a huge factor in many things. I still haven't heard from my Dr. either on the mychart system, which is an awesome way to communicate with all my physicians, etc., or by phone but I know her nurse put my request in so just waiting to hear what she thinks. Yes, I am very fortunate to have a personal relationship with my cardiologist, she is very devoted to her patients and it is wonderful to know I am finally in good hands.
Just found out the incompetent dr. I saw last December, isn't even board certified as a cardiologist in NC. Seriously, how can he call himself a cardiologist! He told me he had privileges at Duke! He freaked me out last year when he said I had several problems related to my VSD, my electrical system and my BAV. all based on an echo that he couldn't even read, nobody could, it was illegible, but never said anything about my ascending aorta size. Said I was going to need several procedures over a 3 month period and ordered a catheterization just to confirm what he suspected. The doctor who did the cath said there was absolutely nothing wrong and acted like I was wasting his time. He too, said nothing about my ascending aorta being dilated. He told me the cath was unnecessary as there was nothing seriously wrong with my heart, all my defects were working perfectly and couldn't understand why it was ordered in the first place. Told me I didn't need any further tests and didn't need a follow up for a year! He was so convincing and affiliated with a very respected practice that I took his advice. Now 1 year later I am sitting at anywhere from 4.8 to 5.1 depending on which result is most accurate and I have to believe that it didn't get that size in less than a year. Sure would like to know what it was last year, as this has by far been the most stressful year of my life. A comparison would certainly be helpful in determining how big a factor stress plays on this condition!

 

[Ultrarunner]

I hope things are handled properly for you going forward. Please post your aorta diameter when you get, what should be, the definitive measurement. And also any feedback on the effects of stress, or excercise limitations, you come across. A big lesson for me, as for you, is the necessity of being more involved and not just taking one physician's comments at face value.

 

[Garserin]

I also believe that stress can speed up the growth rate of aneurism. I was fairly stable at 48/49 mm for several years and then my husband of 40 years passed away and I underwent an extremely stressful and terrible time. I was on yearly echoes at that time and went from 48/49 mm to 57/58 in 15 months. Needless to say I had surgery within 2 months and at surgery was measured at 60mm. I'm only 5'3", so my cross sectional aortic area compared to height was way over 10. Of course I can't say with certainty that stress caused my aorta/root to expand so rapidly.

 

[Brynn]

I am so sorry for your loss Garserin, loosing our loved ones is very painful and incredibly stressful. I agree stress is reeks havoc on our bodies in many ways. I am starting to believe, after reading several posts about stress and increased size, that is does indeed have an affect. I too am short, 5'2" so I am sure by cross sectional aortic area is over 10, even if the actual measurement is 4.8. My doctor left me a message saying I cannot have another CT now, I'm not sure what her reason is but she will be calling me tonight with an explanation. Feeling a bit frustrated.

 

[dangerousmotto]

Wanted to chime in as an active person who recently had the repair. I was at 5.2 cm (6'2", 180lbs) - they basically told me that my surgery risk was so low ( 32 years old, cyclist/nordic skier) that it really made a lot of sense to do the surgery. I waited about 8 weeks, and during that time I stopped all exercise. This was not what they advised, but I was so anxious. The big thing they told me was to avoid holding my breath (valsalva maneuver) while doing any strength training, and to stick to weights I could do for sets of 15.

Here's what I can say about recovery. By week 5 I was starting to jog on the treadmill at cardiac rehab. By week 7 I was doing 20-30 minutes of sustained jogging. If you come into the surgery fit, and with a positive mindset you will be fine. Here I am 14 weeks after surgery: https://www.youtube.com/watch?v=UdxYFPfsBRQ&feature=youtu.be - most people would hardly know. I feel about 85%, mostly because my fitness and strength aren't back yet, and also because a week ago I had all my sternal closures removed.

Bottom line - the peace of mind of getting it done, and removing the risk was worth it for me. I would seek additionally opinions.

 

[MethodAir]

The big thing they told me was to avoid holding my breath (valsalva maneuver) while doing any strength training, and to stick to weights I could do for sets of 15.

I did heavy powerlifting for decades using Valsalva, my ascending aorta was measured at 4.4cm with an echo prior to surgery (6'1, weight between 200-220lbs) at age 43. Clearly there are a lot of other factors coming into play (that are probably somewhat ill understood).

Most of the cases I've read about aortic dissection occurred when the subject was somewhat sedentary.

 

[dangerousmotto]

I did heavy powerlifting for decades using Valsalva, my ascending aorta was measured at 4.4cm with an echo prior to surgery (6'1, weight between 200-220lbs) at age 43. Clearly there are a lot of other factors coming into play (that are probably somewhat ill understood).

Most of the cases I've read about aortic dissection occurred when the subject was somewhat sedentary.

Do you still lift heavy after surgery? I agree that theres other factors and also the research is weak. I would never consider myself a powerlifter by any means, but heavy deadlifts and squats are the main thing that keep my back and knees happy. I'm just getting to the point where I can tolerate any lifting at all (a little over 4 months out) and the recent surgery to remove the wires set me back a bit. My cardiologist communicated it to me that my "risk was gone" after surgery. I take that to mean I can work back up to heavy lifts.

 

[MethodAir]

Do you still lift heavy after surgery? I agree that theres other factors and also the research is weak. I would never consider myself a powerlifter by any means, but heavy deadlifts and squats are the main thing that keep my back and knees happy. I'm just getting to the point where I can tolerate any lifting at all (a little over 4 months out) and the recent surgery to remove the wires set me back a bit. My cardiologist communicated it to me that my "risk was gone" after surgery. I take that to mean I can work back up to heavy lifts.

That is excellent progress. Did they also replace your bicuspid aortic valve?

Yes, I have recently started lifting heavy again. In terms of potential risk factors, the bicuspid valve and ascending aorta were replaced with this prosthesis (http://www.onxlti.com/product-divisions/heart-valve-products/ascending-aortic-prosthesis/). And my arteries are clear.

 

[Ultrarunner]

Awesome video dangerousmotto! Thanks for posting. And yes, I do agree that another opinion would be good because of the variance in advice by cardiologists and surgeons. My surgeon said the mortality risk of the procedure would be 3 to 4%, which would be more than the risk of dissection. If, as you say in the video, the annual risk of dissection is 5% per year, it would make sense to me to do the surgery sooner rather than later. But I'm also told that my surgeon is the best one to do the job in Vancouver, so for now I'll just continue measuring my aorta.

 

[dangerousmotto]

Awesome video dangerousmotto! Thanks for posting. And yes, I do agree that another opinion would be good because of the variance in advice by cardiologists and surgeons. My surgeon said the mortality risk of the procedure would be 3 to 4%, which would be more than the risk of dissection. If, as you say in the video, the annual risk of dissection is 5% per year, it would make sense to me to do the surgery sooner rather than later. But I'm also told that my surgeon is the best one to do the job in Vancouver, so for now I'll just continue measuring my aorta.

One interesting thing the surgeon said was that they were going to quote the risk to me at 1-3% for surgery, however that's a risk for a population of individuals, and given my specific state (young, highly active, etc) the risk would be far lower than even 1%. 20-30 years ago watchful waiting was the course of action for most individuals until they hit 6 cm. At 6cm there's a strong limit to the mechanics of the vessel itself, whereby the dissection rate skyrockets. I'll see if I can dig up the article I read about that.

Jordan

 

[Ultrarunner]

That's what I though too Jordan. But I asked if the fact that I was very fit would reduce the mortality rate from 3-4% and the surgeon said no. He did say that he would try to save my valve. Maybe the risk of a valve sparing procedure is higher than replacing both the aorta and valve at the same time?

 

[dangerousmotto]

That's what I though too Jordan. But I asked if the fact that I was very fit would reduce the mortality rate from 3-4% and the surgeon said no. He did say that he would try to save my valve. Maybe the risk of a valve sparing procedure is higher than replacing both the aorta and valve at the same time?

Interesting - Mine was a valve sparring operation. The originally plan was to possible repair the valve but they ended up leaving it alone - and in fact, after reading the surgical report it looked as though there was no calcium build up or stenosis, just a very mild regurgitation. The procedure start to finish was completed in 2.5 hours - very quick.

At the end of the day a dr. is always going to watch his/her liability in what they say. My surgeon happens to be a little... brash and direct, is the best term. He's got some notoriety around that. Some people don't like that, I loved it.

 

[cldlhd]

Valve sparing usually takes longer, which is probably riskier, because in addition to the graft the surgeon does repair work to the valve but not in the case of 'dangerous motto'. Its also considered more complicated. My valve had no stenosis but mild leakage ,after the repair it had zero leakage. Getting an echo next month for my one year follow up to see how it's settling in.

 

[MethodAir]

Interesting - Mine was a valve sparring operation. The originally plan was to possible repair the valve but they ended up leaving it alone - and in fact, after reading the surgical report it looked as though there was no calcium build up or stenosis, just a very mild regurgitation. The procedure start to finish was completed in 2.5 hours - very quick.

I personally would be cautious about doing heavy deadlifts or squats with a bicuspid aortic valve. It is not able to withstand the same forces as a tricuspid. Mine had developed an acute tear on one of the leaflets and severe regurgitation followed.

 

[cldlhd]

I personally would be cautious about doing heavy deadlifts or squats with a bicuspid aortic valve. It is not able to withstand the same forces as a tricuspid. Mine had developed an acute tear on one of the leaflets and severe regurgitation followed.

I hadn't heard this at all. I was under the impression the heavy lifting restrictions was only if you have an aneurysm. At 3 months my surgeon, also a bit brash northernlights-maybe it's an occupational hazard, said I have no restrictions at all and I should go and enjoy life.

 

[MethodAir]

I hadn't heard this at all. I was under the impression the heavy lifting restrictions was only if you have an aneurysm. At 3 months my surgeon, also a bit brash northernlights-maybe it's an occupational hazard, said I have no restrictions at all and I should go and enjoy life.

The cardiologist also noted the relationship between heavy weightlifting and the bicuspid aortic leaflet tear. It makes sense -- the valve by medical definition is 'diseased' and prone to premature wear and tear.

Furthermore, if the ascending aorta is replaced (and the bicuspid valve spared), whose to say that the valve isn't then subject to greater forces. The pressure has to go somewhere.