aortic root anuerysm

[aldonova]

I am 40 years old, 5'9'' and 190.  I ran track and cross country in high scholl as well and lifted weights regularly. I am in very good health and up to now was running 2-3 miles a day threes a week.  Through an exec physical I was asked to get an echo.  My cardiologist confirmed a biscuspid aortic valve and has given me diff numbers of 5.2, 5.8 and 6.5(?) as a dilation of the aorta (aortic root?) I have no symptoms.  I have had the trans esoph and CT.  I am taking this very serously but am having a hard time with this.  Does my previous running and lifting have anything to do with this?  I am now taking beta blockers and ace inhib to keep BP down.  I am averaging 120/80 at home but jump to 135/92 or so at work.  I have a very stressful job.  Should I be trying to more agressively lower BP?  Is that he rupture or disection determiner?  Is sytolic or diastolic that is most troubling?Should I consider a reduced work schedule or fewer hours until I can get this repaired?  The reviews I have done note the 6 cm as the point of suggested repair and lower for BAV is this true?  Any input is welcome.

[Cleveland Clinic]

aldonova,

thanks for the post.  

Does my previous running and lifting have anything to do with this?

Nothing you've done has les to this. The dilation is related to the bicuspid valve.  You were born with that!  However, you do want to avoid strenous weight bearing exercises now.

I am now taking beta blockers and ace inhib to keep BP down. I am averaging 120/80 at home but jump to 135/92 or so at work. I have a very stressful job. Should I be trying to more agressively lower BP?

You want to be on a good dose of beta blokers. I usually monitor heart rate and would target the low to mid 60s.  There are no hard and fast rules for this though.

Is that the rupture or disection determiner?

The main 'determiner' is the size of the aorta.

Is sytolic or diastolic that is most troubling?

Both, but mostly systolic.

Should I consider a reduced work schedule or fewer hours until I can get this repaired?

Nothing specifically should impact your daily activities. Some depends on your job, as I mentioned heavy weight bearing activities should be avoided.

The reviews I have done note the 6 cm as the point of suggested repair and lower for BAV is this true?

Generally 5.5-6 cm is the hard cut off we use. After this point the risk of rupture increases.There are some factors which one would want to operate earlier such as rapid expansion, the presence of diseases such as marfans or symptoms.  

good luck

[smp48]

Hi,
Reducing your stress load, if you can really helps. I have been having unexplained problems with my BP. Found out I have CAD. I just had to take a medical leave from work,as my BP was always out of control at work. Since I have not been working my Bp has been a lot better. It is really hard to get a real answer from the Drs. as to how serious or not things are. I think they forget that as humans with no medical knowleged, we tend to worry about everything. If they could just take the time to really explain things in our language I think we would all feel a lot better!
Good luck

[PJmomrunner]

I am in your very same boat minus the stressful job:  5'10", 160, runner (make that ex-runner, per surgeon), former weight lifter, physically fit at 42 when diagnosed, 4.5cm ascending aortic aneurysm.

Ascending aortic aneurysms associated with BAV's are typically operated on at between 4.5cm and 5.5cm. The vast majority of surgeons seem to operate at 5cm.  Timing is based an analysis of the odds of surviving surgery vs. the odds of surviving without surgery.  High volume surgeons with great success rates (98%+) tend to operate sooner.  (Descending aortic aneurysms are usually allowed to get bigger--6cm or 6.5cm, I think--because descending doesn't take as direct a hit from the forceful pumping of blood coming out of the heart.)

There are two websites you must become familiar with:  www.csmc.edu/3893.html  (This is an excellent source of information about Bicuspid Aortic Valve Disease) and www.valvereplacement.com  (This is a forum for people who have had or are waiting to have heart valve surgery.  Many also have aneurysms (and most of those have BAV's).  All are very supportive and the forum is a wonderful source of practical information--it's a great place to get a little control of the "freak-out factor," 'cuz there are people undergoing surgery and relating their stories--literally--every day on this website.)

Take care.

[Billy!]

At what maximal heart rates did doctor(s) allow you to jog,exercise and for how many minutes in duration?

[PJmomrunner]

I have also heard anecdotally  that the MRA is the gold standard, but I've not heard that the CT overestimates...interesting.  I would suspect that whatever technology the surgeon is accustomed to reading is the one he/she is most accomplished at interpreting.  As to which axes my CT was taken in, I would guess all since it produces a 3D image.  Measurement is apparently quite an art as every medical professional who has had an opportunity to read mine has come up with a different measurement!  I have decided to go with the measurement of the surgeon I will probably use.

[PJmomrunner]

Simple enough question...complicated answer...

I saw three cardiologists who all said, "keep running."  One did want me to cut back to three times a week (instead of five).  One surgeon said, "stop running.  Keep your heartrate in the low 100s.  When I finally do open you up I will be able to see the spot on your aorta where that BAV has been directing an eccentric stream of blood.  If you continue to run you'll probably be fine for the first (pick a number) times, then you'll dissect."  Another surgeon said, "blood pressure control is key.  If you maintain your systolic BP between 105 and 110 while at rest we find it does not go above 135 with moderate exercise.  Most patients require beta blockers and an ace inhibitor to accomplish this."

[Billy!]

Did they assess ascending aorta aneurysm with axial,coronal and sagittal mra technique measurements and was there difference between axial,coronal and sagittal measurements >2.5mm? Doctor told me mri/mra is the "gold standard" for detecting ascending aorta aneurysm and dissection.CT overestimates ascending aorta aneurysms?

[pbanders]

FWIW, I had surgery last year to graft a 5.0 cm aneurysm of my ascending aorta (likely due to FAA, no Marfan's/Ehler-Danlos/Lowes-Dietz, etc). My aortic valve was fine, tricuspid, and not involved. I'm 47, male, 6', 160 lbs, and athletic. I'm on 50 mg of Lopressor and 150 mg of Avapro (ARB) daily. My BP is under 100/70.

My surgeon and cardiologist have no issues with my exercise level since my surgery. I do not lift heavy weights, but I bicycle fairly intensely. I ride an average of 7+ hours per week (~140 miles) at a high exertion level, including significant climbing. I've shown my both of them heartrate recordings from my exercise sessions and they have no issues with the levels I'm at (up to 160 bpm).

[Billy!]

Do you know how is the ascending thoracic aorta maximal diameter determined and reported on patient mra report if for example ascending aorta axial measurement is 5.0cm and sagittal is 4.5cm (from the same mr/mra study)?

[pbanders]

Have you spoken to you cardiologist or your surgeon about the kind of detailed questions you have? I doubt whether any patient who posts here could accurately answer your query, nor am I sure I'd trust their answers.

[PJmomrunner]

I haven't a clue!

[pbanders]

Accuracy is important. But it's more important to find a single specialist that you trust to make the needed judgement calls that translate the data into actions. There are always differences of opinion when measurements are near the limits of normalcy. Add in the patient's own interpretation of the data (informed or not) and you can increase the level of confusion and indecision.

I designed microcontamination analysis systems for the semiconductor industry for 15 years - I always want to see the data. But when it came time to make a decision whether or not I needed to have surgery to repair my 5.0 cm aortic aneurysm, I found a surgeon that I trusted (20 years of working with one of my closest friends) and let him tell me what I needed, based on his experience (over 6,000 procedures), his interpretations, and his judgement of the situation, outside of the many emotions I was experiencing at the time.

[tickertock]

Great advice by pbanders.Trust one with experience and who knows all the pros and cons.

[Billy!]

I think it is important knowing accurate aortic root and ascending aorta measurements because a 5mm difference between axial and sagittal measurements can tell whether person has a normal findings (3.5 vs 4)and even sometimes whether surgery is indicated (4 vs 4.5). Cardiologist says "Whatever is the highest." while other doctor goes by sagittal measurement.I think even non medical proffesionals can measure aortic root and ascending aorta as long as scale on film is accurate.Did surgeon who told you "stop running.Keep your heart rate in the low 100's." also tell you not to lift anything over 20 pounds?What heart rate he meant when he said low 100?

[Jjc2005]

I am a 59 year old female.   In May I had an aortic root dilation of 4.5 cm repaired with a dacron graft in open heart surgery.   My surgeon believed that due to a family history (sister and cousin) of aortic dissection sudden death, I should not wait.  While I was in pretty decent shape (walked daily for two years before for 60 to 90) I doubt I was in as good a shape as some of the posters here.  However, I did very well, recovered and was pretty much back to walking at least two miles within two and a half weeks after surgery.   In fact 24 hours after surgery I walked out of ICU to my new room on cardiac care and ate a full meal.  Four months now since surgery and I am thrilled to have the peace of mind that surgery gave me.  And I feel great and take the same meds I did before surgery.  My blood pressure is low and I exercise daily still.

Find a surgeon in your area who specializes in this field and do a consult.  My cardiologist was content with watch and wait.  But so was my sister's cardiologist and unfortunately she dissected and died at 4.5 cm.   It is an unpredictable condition.  While it is possible to go one's entire life without a dilated aorta expanding or dissectiong, for me living with it was mentally stressful.   It is easier said than done to say keep one's blood pressure low and one's life stress free when you KNOW you have this condition.
For me, the answer was simple.   Fix it!!!  Yes there is a risk.   But everything in life carries risks.  
Find the best doctors in the field and Cleveland Clinic is the best IMO (My surgeon trained there).  If surgery to get it fixed is what you want, do it. If not, don't.
Do what feels right for you, then you will get the stress free days you want. But the surgery was not all that bad IMO.

[PJmomrunner]

Yes, my surgeon did say to limit my lifting to 20 to 30 pounds.  He gave me a list of don't does and threw in "don't do anything that makes you go "unh!""  That is probably the guiding rule for me.

I found it very frustrating to get measurements from "about 4cm" to 4.8cm from doctors looking at the same imaging studies.  I spoke with a doctor friend about my frustration with the discrepancy between measurements and he likened the process of measuring an aorta to making a cross cut on a tree trunk.  Three different people will easily get cuts of three different diameters by making cuts in very minutely different planes.  My aorta doesn't look anything like a tree trunk either.  It has been described as "diffusely ectatic," which, I am told is typical of aortas associated with BAV's.  That would, no-doubt, complicate measurement as well.

You and I can try to understand the nuances of measuring an aorta, but I have come to the conclusion that safeguarding my future is best accomplished by relying on the experience of my surgeon.  That said, everyone has a different idea of what "experienced" is. One of the cardiologist's I consulted at a large, well-respected, big-city, tertiary care facility recommended that I get a surgeon who has done "at least 15" of my type of procedure.  I have chosen to trust a surgeon who decided ten years ago to do only aortas and valves.  He does 300 per year.  Who is in a better position to judge the size of my aorta...him or me?  By the same token, the cardiologist who said, "find someone who's done at least 15" may not be such a great judge either!

So, I say if you have a problem only a surgeon can fix, find a surgeon you trust and rely on his judgement.

[Billy!]

You wrote "There are always differences of opinion when measurements are near the limits of normalcy." Why? Is it because of hydration status of patient at the time of imaging? Does fasting plus not drinking any water for 12 hours prior to aorta mr/mra imaging have any effects on aortic size dimensions results?What does your cardiologist or surgeon think is the best test for assessing aortic root and ascending aorta (for aneurysm and dissection)?

[pbanders]

Your questions regarding the details of testing would be best referred to YOUR cardiologist or surgeon, not mine. If you're not comfortable with their answers, I suggest you get a different set of doctors. If you are happy with your two doctors, and they disagree on a critical aspect of your treatment, you should make a decision as to which one is the decision-maker and stick with it.

There's a difference between being informed and being your own doctor. Doctors recognize this issue when they themselves become patients - the smart ones do not attempt to manage their own diagnosis, treatment, and care - they let the doctor managing the condition have control.

[Billy!]

No,this is not an issue.I just want to know which doctor knows better and thus is better qualified to do his job.What does your doctor or surgeon think is the best test for assessing aortic root and ascending aorta?

[pbanders]

What test that my surgeon or cardiologist thinks is best is meaningless to your case. If I say that they both think CT with contrast is the standard, would that somehow change your mind as to which of your doctors is best to decide your treatment? You don't know my doctors, why would you trust them, or let their opinions influence your decisions? The question here is what test do YOUR surgeon and cardiologist think is best? If there's a difference of opinion, have them hash it out in a joint conference.

[Billy!]

As for whether test that your surgeon or cardiologist thinks is best being meaningless in my case and somehow influencing my decisions,I think it should help on the way of finding out.

[gem12]

Important cutting edge information is available at www.bicuspidfoundation.com

[gem12]

Please visit www.bicuspidfoundation.com
This site is invaluable for information and support.