BAV with 4.6 TAA and Symptoms. When should we push surgery?

[Purdue]

First posting for me and a reader of the forum for about a year. By far the best place on the internet to get organized, detailed information on "our" type of health issues (our meaning BAV and associated heart related issues). A thanks to what seems like thousands of people for posing experiences.

44 years old. TAA has grown from 4.3 to 4.6 in the last year or so. 6 month interval check-ups for me to measure the aneurysm. A heart cath recently and it confirms the TAA, moderate regurgitation, slight stenosis on the bicuspid, and clean as far as build up or artery desease.

We are in the waiting stage but I have symptoms and that's the reason for the reach out to the group. SOB for any activity. I feel like I have been punched in the left chest area and it radiates to the jaw, left shoulder, neck,first part of the arm, and a little (not much) in the back as back pain. When I eat, aforementioned chest pain increases and it's not like a burning indigestion pain. It magnifies the pain that is there and then goes away after a short period. Almost like the food is pushing it's way down my throat and pressing on other areas. If I sit completely still for an hour or so, the discomfort goes to very little. As soon as I get back in action, it goes back to pain. Lastly. If I think of something fun or a customer that has something exciting to work on (I am in sales), I get a rush and then the pain increases. I don't really experience the opposite if something "bad" happens and never have any anxiety issues.

Emergency room visit a month ago because the pain was scaring us. Fluid build up was the diagnosis and we are not so sure that's the cause. We think it was a rush to judgement call and either I have something weird happening to me or I am experiencing the same thing many of you have and need to find a way to get this fixed sooner than later. My wife is very scared and if this were her experiences, I would not be able to stop thinking about it and want action before the 5.0 TAA measurement mark.

Thanks in advance for any help.

 

[Bina]

Hello and welcome !
Are your docs wanting to wait for any other reason besides the 5.0 mark?
Will they do any valve work along with the TAA?
My doc was the opposite; he was pushing me for surgery and so I naturally freaked out and delayed as long as I could, which was not a good idea in my case.
Maybe another doctor's opinion and evaluation would make you feel more at ease.....

 

[Purdue]

The doc feedback so far has been that he does not feel my symptoms are from my heart even with the slight disfunction's such as stenosis and regurgitation...and the size of the bulge. We wonder if my SOB, pain in the neck, left chest, jaw, and absolutely tired are in fact from it and that's why I am reaching out to see if others had / have this. Sort of on the bubble symptoms. Not at or over 5.0 yet and a still functioning BAV...not perfect but not needing replaced based on measurements and tests. I don't like to sit still and between the pain and SOB, my life is changing and I don't like it. We contacted the Cleveland Clinic and may go there for a second opinion. A family doc who knows me for the past 20 years said surgery will be in my future sooner than later (based on his knowledge of other people he sees). Ohio State doc seems not so convinced this is from the BAV or bulge so again, there lies the reason I am reaching out. Maybe I am at the start of this process?

What size was your aneurysm when your doc requested surgery?

 

[Bina]

I didn't have an AA, but was diagnosed with Aortic Stenosis from the valve a few years earlier. My symptoms of
SOB and palpitations were slow to increase which made it easy to ignore them. After a couple of years my valve
size still showed only moderate but I was having sternum tightness and palps, feeling faint, etc. During the last
year before surgery everything went downhill fast....which was the kick in the butt that I needed to get my
valve replaced.
Hopefully our members with AA will come along and share their experiences with you.

 

[ElectLive]

Hello Purdue. Obviously sorry for the circumstances, but welcome to the community. My ascending aortic aneurysm was repaired at 5.0 cm, although my surgeon said in my circumstance, he would actually have recommended it at 4.5 cm. Several factors go into the decision of when to operate including genetic disorders (BAV is one), related conditions (coronary artery disease and/or valve repair or replacement), growth rate, size, and symptoms, if any. I actually had no symptoms (very common, if not more so, with thoracic aneurysms) either from my aneurysm or my valve. I did have a BAV with moderate to severe stenosis and rapid growth of the aneurysm. My valve actually might have been fine another few years, maybe, but the handwriting was on the wall, so it was replaced at the same time. This actually works both ways. Both the heart valve guidelines and the aortic aneurysm guidelines indicate a slightly lower threshold for surgical intervention if the other conditions is already at the surgery stage. However, some patients really only need one or the other, and that might turn out to be the case for you - valve sparing.

The symptoms you describe are not at all familiar to me, but they do sound somewhat similar to the "classic" non-emergency symptom list of those that do experience, based on info from the Cleveland Clinic: pain in the jaw, neck, and upper back, chest and back pain, coughing, hoarseness, and difficulty breathing. I think the symptoms depend on the exact location of the aneurysm. Anyway, if you are truly symptomatic from the aneurysm, and with BAV, the trigger point for surgery might be closer to 4.5 than 5.0. The guidelines changed in 2010, with an increasing emphasis on those with BAV and operating "preemptively". My cardiologist was not either up to speed or on board with the new protocol, and would have deferred even at 5.0. As I said, my surgeon, based on the new guidelines, would have recommended it even at 4.5. The Cleveland Clinic obviously has a great reputation, and you should get a much better understanding of the situation overall. In fact, they often use body size formulas to determine the surgical threshold for aneurysms too.

I wish you the best moving forward. Your thoughts on sooner rather than later do ring very true for me. If there were ever a heart surgery to have slightly early, aneurysm repair would be the obvious one. In my mind, the surgery was much less scary than the alternative of wait and see. By the way, have you been put on beta blockers to control heart rate and blood pressure? Hopefully so, as that helps decrease stress on the aorta in the interim.

 

[Ovie]

I didn't have an AA, but was diagnosed with Aortic Stenosis from the valve a few years earlier. My symptoms of
SOB and palpitations were slow to increase which made it easy to ignore them. After a couple of years my valve
size still showed only moderate but I was having sternum tightness and palps, feeling faint, etc. During the last
year before surgery everything went downhill fast....which was the kick in the butt that I needed to get my
valve replaced.
Hopefully our members with AA will come along and share their experiences with you.

Bina, I had never heard of sternum tightness and the last 3-4 months I've been having that issue quite frequently, just thought it was bad panic attacks and all my adrenaline was going to my chest. Makes so much sense!

Sorry for going off topic Purdue, i too am fairly new here, and have no information to give, for I'm in the waiting room and none of your symptoms sound familiar to mine, but a second or third opinion is never a bad idea.

You've chose a great site, since I've been here the people have been nothing but a blessing for knowledge and support. Hope you get everything figured out!

 

[Lynlw]

The doc feedback so far has been that he does not feel my symptoms are from my heart even with the slight disfunction's such as stenosis and regurgitation...and the size of the bulge. We wonder if my SOB, pain in the neck, left chest, jaw, and absolutely tired are in fact from it and that's why I am reaching out to see if others had / have this. Sort of on the bubble symptoms. Not at or over 5.0 yet and a still functioning BAV...not perfect but not needing replaced based on measurements and tests. I don't like to sit still and between the pain and SOB, my life is changing and I don't like it. We contacted the Cleveland Clinic and may go there for a second opinion. A family doc who knows me for the past 20 years said surgery will be in my future sooner than later (based on his knowledge of other people he sees). Ohio State doc seems not so convinced this is from the BAV or bulge so again, there lies the reason I am reaching out. Maybe I am at the start of this process?

What size was your aneurysm when your doc requested surgery?

Which part of your Aorta is dialated? If it is the root chances are you have a much longer wait than other parts of the Aorta, as long as the valve stays at mid to moderate. FWIW Justin has had many OHS and we keep an eye on his Aorta, his root has been 4.3, 4.4 the past few years and we're not even dicussing the possiblity of surgery any time soon, and he gets opinions from the top 2 CHD centers. It probably wouldnt hurt to get the 2nd opinion from CCF that way if they say it isnt time to, you might feel better about it.

 

[Mentu]

It seems to me that you can only resolve the conflict between your cardiologist's slow approach and your own concerns by seeking that second opinion. I will say that on the day I first experienced radiating chest pain, my own cardiologist made an appointment for me with my surgeon and called me back within the hour to tell me so. It is certainly possible that some of your symptoms might be caused by other things even so, hearing "wait and see" from a doctor is not reassuring when you are not feeling well. A second opinion will help resolve some of that conflict and one way or another give you some confidence that you are being treated properly.

Larry

 

[ElectLive]

Which part of your Aorta is dialated? If it is the root chances are you have a much longer wait than other parts of the Aorta, as long as the valve stays at mid to moderate.

Lyn - Thanks, I neglected to mention that.

Purdue - At normal size, the root is actually around 1 cm larger than the rest of the aorta, so location is another important factor that enters into the surgical decision process.

 

[Purdue]

We go for a second opinion this week. I think the root is normal or at least it has not been a discussion topic for us. TAA at 4.6 at the curve just past the valve, BAV, mild stenosis, and mild regurgitation have been the areas mentioned of concern. Pain elevates with any activity or excitement and radiates into the jaw and left arm. I am out of breath from just dressing or showering and that's not normal at all. Symptoms subside after I sit still for 30 to 45 minutes but I need to remain very still and not get excited. I'm mentally okay with waiting...or with anything for that matter. I don't get worked up about things like this and don't experience anxiety of any form as well. I am experiencing more pain and that's the reason I want more checks. Otherwise, I gravitate to numbers and black and white situations so waiting for the "5.0" or "5.5" measurement fits my line of thinking. If I had no symptoms or pain, I would be very happy in waiting. I appreciate the discussion.

 

[Arlyss]

Pain in the presence of an aneurysm of any size should be taken very, very seriously. There is a published paper that found that 60% of a group of patients whose ascending aorta dissected (tore), a life-threatening emergency, had an aorta smaller than the current size guideline of 5.5 cm, 40% were less than 5 cm. Here is the link to that paper, http://www.ncbi.nlm.nih.gov/pubmed/17709637 Size is just one factor when assessing a diseased aorta.

Aortic pain has been described as increasing with pressure - activity and or stress (excitement) can raise blood pressure, increasing pressure/tension on the aortic wall. Aortic pain has been known to be relieved by lowering blood pressure.

It is published in the medical literature that the presence of symptoms from the aorta call for surgery, regardless of the size of the aorta.

If myself or any member of my family were experiencing the symptoms described here, I would immediately seek aortic disease expertise. I would not wait for a scheduled appointment. Any medical resource with true aortic disease expertise would recognize the symptoms described here and act on them immediately to relieve stress on the aorta and determine the urgency of the next steps for that individual.

I hope anyone reading this will never hesitate to push for the help they need when dealing with aneurysm of the aorta, which is a known risk factor for those with BAV. Don't let your aorta tear while waiting for an appointment. http://bicuspidaorticfoundation.blogspot.com/2012/01/life-from-death-contributions-of.html

 

[Lynlw]

Pain in the presence of an aneurysm of any size should be taken very, very seriously. There is a published paper that found that 60% of a group of patients whose ascending aorta dissected (tore), a life-threatening emergency, had an aorta smaller than the current size guideline of 5.5 cm, 40% were less than 5 cm. Here is the link to that paper, http://www.ncbi.nlm.nih.gov/pubmed/17709637 Size is just one factor when assessing a diseased aorta.

Aortic pain has been described as increasing with pressure - activity and or stress (excitement) can raise blood pressure, increasing pressure/tension on the aortic wall. Aortic pain has been known to be relieved by lowering blood pressure.

It is published in the medical literature that the presence of symptoms from the aorta call for surgery, regardless of the size of the aorta.

If myself or any member of my family were experiencing the symptoms described here, I would immediately seek aortic disease expertise. I would not wait for a scheduled appointment. Any medical resource with true aortic disease expertise would recognize the symptoms described here and act on them immediately to relieve stress on the aorta and determine the urgency of the next steps for that individual.

I hope anyone reading this will never hesitate to push for the help they need when dealing with aneurysm of the aorta, which is a known risk factor for those with BAV. Don't let your aorta tear while waiting for an appointment. http://bicuspidaorticfoundation.blogspot.com/2012/01/life-from-death-contributions-of.html

Thanks Arlyss. It is always so nice to see you stop by and share your knowledge

 

[Arlyss]

Here is a link to a specific page of information specific to this topic from the TABAV program at Valley Heart in New Jersey. There are several helpful pages on this center's site.

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx

Best wishes,
Arlyss

 

[Bev]

Hi Purdue, From reading your posts and the description of your symptoms, all I can say is that YOU know YOUR body. LISTEN TO YOUR BODY!
So glad you are going for a second opinion.
Good luck

 

[Arlyss]

The experience of this teacher, Candie Frank, is a real-life example of finding thoracic aortic disease expertise, including the aortic valve, and making an informed decision. Surgery is not the end of the story - Candie will have life-long follow up.

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Testimonials/Meet-Candie-Frank.aspx

Best wishes,
Arlyss

 

[Purdue]

Surgery scheduled for early February. We just met with a surgeon this morning and what a difference it was compared to ER / Heart / regular doctors. My advice to anyone who has harsh symptoms related to BAV, TAA, or both is to seek the opinion of a surgeon along with your heart people. We had an ER doctor tell us my problems were absolutely not related to my heart all the while I am 4.6cm on the AA and tests showed moderate to severe BAV problems. The surgeon helped my wife and I understand how I fit into the typical profile of a BAV TAA person. I fit 100% right in line with progression of the problem. The surgeon helped explain how ER doctors see a person like me once in every few thousand and they don't have the perspective the heart surgeon has. Another topic was measurements and test data related to "you will not escape surgery". I'm 4.6cm and 5.0 is the rule of thumb on surgery to avoid the chance of bursting. At a low 3% mortality rate for surgery, I don't understand why anyone would sit around and wait for 5.0cm if you have problems. I need to mention that my mother passed away at age 40 from multiple aorta/ valve and heart problems so the gene pool is not perfect. I am, however, in good shape and can't wait to get back to feeling good. I'm absolutely tired, have a lot of left chest pain, jaw pain, and left arm numbness and pain. I feel very worn out. My wife is very helpful in this process and I am so glad I have her. We have a very strong marriage and if this were her, I would be extremely nervous. FYI. Mechanical valve for us. I'm 44 and it sounds like a pig valve won't last long for my activity level and the situations like minimal dark green veggies and blood maintenance are very tolerable conditions. I wanted to ask the doctor if anyone in the viewing gallery would be eating JR Mints during surgery but I passed. Anyone get it

 

[Makro]

No, don't get it. I had AA after a Ross procedure 7 years earlier. I went into AFib because the aneurysm was pushing on the heart itself. Very SOB, and radiating pain in the jaw. I'm glad you' re talking care of this now. Best of luck!

 

[Purdue]

Seinfeld had an episode where they were in a viewing gallery during a surgery. Kramer was eating JR Mints and ended up tossing on into the chest cavity of there person being operated on. More to the story but that was the start.