Growing aneurysm

[annie10]

I had my 6 month checkup at CCF yesterday: Aneurysm has grown from 4.5 to 4.8. Cardio wants to continue watching it. (Patient wants to choke cardio ) Doesn't that rate of growth seem a little FAST? Cardio also wants to do a stress echo... I think I am stressed enough, thankyouverymuch. I invested in a BP monitor early in Dec. My BP is staying low, however I am setting off the "irregular heartbeat" alarm quite frequently. The Cardio has discounted my symptoms as being unrelated to the aneurysm, although he hasn't come up with any other explanation.
Why do the doctors talk of immediate resection of "symptomatic" aneurysms, when they don't believe aneurysms HAVE symptoms?

 

[Granbonny]

Annie

Annie

Where is this CCF?and where is your Cardio?.....Your Cardio is correct in saying ..that aneurysm's have no symptoms..I didn't..but for the Grace of God and a very concerned PCP worried about my high b/p..mine was found in time. ..after a few tests..Mainly I think back..an MRI..that led to a Cath of heart..done at St. Joseph's in Atlanta...that they saw mine at 5.0....surgery 3 days later at St. Joseph's .....have posted this many times Vr.Com..that I lost my wondeful B/I/ law at age 50 when his dissected. thinking he had heartburn. Doctor's too)Waited too late. died the next day. .......Do what you think is best. It's your life. Bonnie

 

[PJmomrunner]

Why do the doctors talk of immediate resection of "symptomatic" aneurysms, when they don't believe aneurysms HAVE symptoms?

Hi Annie:

Fabulous question! I have felt pulses of mild, sharp pain about 1"-1 1/2" to the left of my sternum in the third intercostal space all afternoon. Is this a symptom of my aneurysm or a symptom of chest muscles stressed by shoveling snow??? What kind of symptoms are you having?

Was your CT from 6 months ago also done at the Cleveland Clinic? If so, 3mm is a lot of growth. If not, it may be difficult to judge change between two machines with different tolerances. What was his thinking? Since I have been told not to let my heart rate rise above the low 100's (because it poses a danger, i.e., dissection), I don't understand the rationale behind a stress test.

 

[Kate]

Hi Anita!
I understand what you are going through - I also wanted to strangle my CCF cardio when he didn't want to operate on my 4.8 cm aneurysm almost two years ago now. One possible source of support - Dr. Lars Svensson (or Svennson - I can never remember how to spell it) who is also at CCF has published a paper arguing that height should be taken into consideration when evaluating aneurysm size (since the same aneurysm is actually relatively larger on a shorter person). Because of this research, I was actually able to convince them that they should do surgery at 4.8cm because I'm only 5'3" tall (3/4 of the people with aortic aneursyms are men, so the magical 5cm number is based on their larger body size). So, depending on how tall you are, you may want to try to contact Lars for a second opinion. Best of luck and try not to get too frustrated! Kate

PS - Regardless of your height, .3 cm growth in six months seems very fast. However, ass mentioned above, variations may be the result of different machines, techs or angles of measurement.

 

[Ross]

Let me interject here a moment. Some of those aneurysms that they say are only such and such size turn out to be much larger when they go to fix you too!

 

[MrP]

Was your ascending aortic aneurysm measured using echocardiogram, CT scan, or MRI?

An echocardiogram will give the tech/cardiologist limited visibility of the entire ascending aorta, and echo measurements will have a greater margin of error than a CT scan or MRI.

Although many folks with ascending aortic aneurysms do NOT have symptoms, a significant number will have symptoms, including chest pain (from stretching of aortic media).

I don't understand the need for a stress echo at this point, and prior to surgery, coronary arteries will be evaluated via catherization.

Best,
MrP

 

[Susan BAV]

Hi Anita -

I think I would get a second opinion. Quickly. Can't hurt, right?

(edit - Remember that cardios and surgeons look at problems from different angles...)

 

[briansmom]

My son had chest pain right in the center of his chest. Docs of course dismissed it because he was so young. His aorta dissected and it is a miracle that he is alive. I firmly believe that you know your body much better than any doc ever will. Do whatever you have to do to get the care that you think you need - 2nd, 3rd opinion, etc.
Good luck, stay strong and keep us posted.

 

[Traveler]

I'm new to the aneursym world, but I know that if you have a bicuspid aortic valve and an aneurysm >4.5 cm that Mayo will want to operate. But maybe it depends on the surgeon. My understanding of risk is that a 4.5-5 cm aneurysm has a ~5% annual risk of failure if you have a bicuspid valve the risk is higher. That risk is then compared with the risk of the operation - which of course has its own factors.

 

[PJmomrunner]

This is a lot of info, but it is a nice synopsis of treatment taken directly from the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease.

To Kate's point, Annie might consider mentioning the 2.5cm/square meter of body surface area criteria (below in red) to her cardiologist. Annie, there are several online BSA calculators and you can simply multiply your BSA by 2.5cm to determine what the recommended operating diameter would be for you by this method.

3.3 Bicuspid Aortic Valve With Dilated Ascending Aorta
Class I
1 Patients with known bicuspid aortic valves should undergo an initial transthoracic echocardiogram to assess the diameters of the aortic root and ascending aorta. (Level of Evidence: B)
2 Cardiac magnetic resonance imaging or cardiac computed tomography is indicated in patients with bicuspid aortic valves when morphology of the aortic root or ascending aorta cannot be assessed accurately by echocardiography. (Level of Evidence: C)
3 Patients with bicuspid aortic valves and dilatation of the aortic root or ascending aorta (diameter greater than 4.0 cm*) should undergo serial evaluation of aortic root/ascending aorta size and morphology by echocardiography, cardiac magnetic resonance, or computed tomography on a yearly basis. (Level of Evidence: C)
4 Surgery to repair the aortic root or replace the ascending aorta is indicated in patients with bicuspid aortic valves if the diameter of the aortic root or ascending aorta is greater than 5.0 cm* or if the rate of increase in diameter is 0.5 cm per year or more. (Level of Evidence: C)
5 In patients with bicuspid valves undergoing AVR because of severe AS or AR (see Sections 3.1.7 and 3.2.3.8), repair of the aortic root or replacement of the ascending aorta is indicated if the diameter of the aortic root or ascending aorta is greater than 4.5 cm.* (Level of Evidence: C)
Class IIa
1 It is reasonable to give beta-adrenergic blocking agents to patients with bicuspid valves and dilated aortic roots (diameter greater than 4.0 cm*) who are not candidates for surgical correction and who do not have moderate to severe AR. (Level of Evidence: C)
2 Cardiac magnetic resonance imaging or cardiac computed tomography is reasonable in patients with bicuspid aortic valves when aortic root dilatation is detected by echocardiography to further quantify severity of dilatation and involvement of the ascending aorta. (Level of Evidence: B)
*Consider lower threshold values for patients of small stature of either gender.
There is growing awareness that many patients with bicuspid aortic valves have disorders of vascular connective tissue, involving loss of elastic tissue (348,349), which may result in dilatation of the aortic root or ascending aorta even in the absence of hemodynamically significant AS or AR (350?353). Aortic root or ascending aortic dilatation can progress with time in this condition (354). These patients have a risk of aortic dissection that is related to the severity of dilatation (349,355?357). Recommendations for athletic participation in patients with bicuspid valve disease and associated dilatation of the aortic root or ascending aorta from the 36th Bethesda Conference (138) are based on limited data but with the understanding that aortic dissection can occur in some patients with aortic root or ascending aorta diameters less than 50 mm (344,356,358). Therapy with beta-adrenergic blocking agents might be effective in slowing the progression of aortic dilatation, but the available data have been developed in patients with Marfan syndrome (359) and not in patients with bicuspid aortic valves.
Echocardiography remains the primary imaging technique for identifying those patients in whom the aortic root or ascending aorta is enlarged. In many cases, echocardiography, including transesophageal imaging, provides all of the necessary information required to make management decisions. More accurate quantification of the diameter of the aortic root and ascending aorta, as well as full assessment of the degree of enlargement, can be obtained with cardiac magnetic resonance imaging or computed tomography. These techniques also allow for an accurate depiction of the size and contour of the aorta in its arch, descending thoracic, and abdominal segments. When the findings on transthoracic echocardiography relative to the aortic root and ascending aorta are concordant with those of either cardiac magnetic resonance or computed tomographic imaging, then transthoracic echocardiography can be used for annual surveillance. The dimensions of the aortic root and ascending aorta show considerable variability in normal populations. Regression formulas and nomograms have been developed for adolescents and adults that account for age and body surface area (360). An upper limit of 2.1 cm per m2 has been established at the level of the aortic sinuses. Dilatation is considered an increase in diameter above the norm for age and body surface area, and an aneurysm has been defined as a 50% increase over the normal diameter (361).
Surgery to repair the aortic root or replace the ascending aorta has been recommended for those patients with greatly enlarged aortic roots or ascending aortas (344,349,357,358). In recommending elective surgery for this condition, a number of factors must be considered, including the patient?s age, the relative size of the aorta and aortic root, the structure and function of the aortic valve, and the experience of the surgical team. Aortic valve-sparing operations are feasible in most patients with dilatation of the aortic root or ascending aorta who do not have significant AR or aortic valve calcification (362?364). It is recommended that patients with bicuspid valves should undergo elective repair of the aortic root or replacement of the ascending aorta if the diameter of these structures exceeds 5.0 cm. Such surgery should be performed by a surgical team with established expertise in these procedures. Others have recommended a value of 2.5 cm per m2 or greater as the indication for surgery (365). If patients with bicuspid valves and associated aortic root enlargement undergo AVR because of severe AS or AR (Sections 3.1.7. and 3.2.3.8.), it is recommended that repair of the aortic root or replacement of the ascending aorta be performed if the diameter of these structures is greater than 4.5 cm (366).

 

[Karlynn]

I firmly believe that you know your body much better than any doc ever will. Do whatever you have to do to get the care that you think you need - 2nd, 3rd opinion, etc.
Good luck, stay strong and keep us posted.

Bingo! Very good advice.

 

[susieq14]

Annie,

Sorry I have no knowledge about aneurysms but I did want to give you a little HUG and send my best wishes as you figure out your next steps. You sound a little frustrated as you should be. Have you thought of a second opinion?

all my best!

Susie

 

[annie10]

Thanks everyone for your replies!

Granbonny- CCF is Cleveland Clinic. I have read the sad story of your B/I/L, and am glad they found yours in time!

P.J.- I have various symptoms ranging from 'bee-sting' like pains in my chest and/or back, to sharp pains that stop me in my tracks, but pass quickly. I feel like there is a fist inside my chest, pressing to come through just left of my old sternal scar. It is worse when I lean forward, and better when I recline. In the last month or so I have started having irregular heartbeats when I am relaxed. Many of the symptoms are the same as before my AVR. At that time they were attributed to the valve.

Kate-I am waiting for a recommendation from Dr. Lytle after he reviews my information. I had the CT scan on the same machine, but I don't know which tech actually ran it. The cardio said he reads them himself though, so both these measurements are his.

Ross-I have read your story, and it served to scare the **** out of me. No, it HAS made me more skeptical of things I used to take as gospel just because the person saying it wore a white coat. Thank you for that!

MrP-It was measured with a CT scan. I don't understand why he would want a stress echo either, although he DID say I am at the age when arteries develop plaque...(48?) I think he is looking for a reason for my chest pain other than the aneurysm.

Susan-Cleveland IS my second (and third) opinion. The Cardio and Surgeon I spoke to in my hometown know nothing of BAVD.

Deanne-I am so sorry for what happened to your son, and glad to see he is doing so well!

Traveler-I had my bicuspid valve replaced with mechanical in 2000. At that time, I had a 4.9 cm aneurysm which the surgeon elected to repair rather than replace. This will be OHS #2, which I think is what is making them hesitate.

P.J.-I used the formula for BSA. and depending which calculator you use, it came up 4.7 to 4.9. However, does the same criteria apply for re-ops?

Karlynn-Your punkin'pie is adorable!

Susie-Thanks for the hug.

 

[PJmomrunner]

I used the formula for BSA. and depending which calculator you use, it came up 4.7 to 4.9. However, does the same criteria apply for re-ops?

Ooh Dang! There's another good question, woman! The guidelines do not specifically address that issue, but since it says somewhere in there (if I remember correctly) at what size one should address the dilated aorta when doing a concomittant AVR, maybe the guideline does apply to re-ops. Worth asking. I have my doubts about this method, BTW, because the fatter I get the bigger it lets my aneurysm get. Now does that make sense? (The harder my heart has to work to get the blood to my fat @$$ and back, the safer my arteries are???)

 

[MrP]

Since you have symptoms, including chest pain, you need surgery right away regardless of the aortic diameter and growth rate.....you are at risk! Please identify a surgeon who understands BAV and who is very experienced with aortic aneurysms and reops. You may need to travel, but this could save your life and make life better after surgery. Get the very best surgeon...not one who has limited experience.

MrP
PS I had sharp chest pains at 5.1cm. Joseph Coselli in Houston is one of the top three surgeons in the world.

 

[annie10]

MrP-
YOU know I need surgery, I know I need surgery, the problem is finding a Surgeon who thinks I need surgery!

P.J.-
ROFL I already put myself on a diet to reduce my BSA.

 

[MrP]

I guess more opinions are needed from surgeons who understand your condition. Have you talked to anyone at the Cleveland Clinic or Cedar Sanai Medical? Your chest pain is most alarming, and a stress echo right now may not be such a good idea.

You may want to find another surgeon if your current one doesn't understand BAV....there are some good ones available out there....see the bicuspidfoundation website also.

Here's an article on timing of surgery and based upon research at Yale Medical. In addition to the guidelines posted earlier, this may prove useful for your cardiologist and surgeon (especially see questions and answer section),

http://72.14.203.104/search?q=cache...+valve+aneurysm+yale&hl=en&gl=us&ct=clnk&cd=9

As stated in an earlier posting, any coronary blockage will be identified in a cath test before resection of your aneurysm. Also, many BAV patients are "protected" against atherosclerosis of coronary arteries. It is possible that a mechanism exists from the same genetic mutation that predisposes one to ascending aortic aneurysms also exerts a protective effect against systemic atherosclerosis. This is based upon recent research at Yale University School of Medicine.

All my best,
MrP

 

[savysmommy]

annie10
I am sorry to hear about your growing aneurysm. That is very scary. I think your situation is scary, because it reminds us all that have a BAV that this is a possibility.

I am curious though, you mention that your surgeon repaired the aneurysm the first time. Do you know what his method of repair was? My surgeon "repaired" mine as well, with a technique called plication. Basically, he cut a football like shape out, and sewed it tighter.

Its definitely worrisome because of the compelling information about people with BAV that have the return of the aneurysm.

Please keep us posted.
Best wishes,
Shannon

 

[ruth]

Sorry to hear of all this Annie.

I have Rheumatic Heart Disease, not what you have. I was 'asymptomatic' or so I thought (reality check: I had convinced myself I was out of shape, getting older, oh that pain is from straining while doing X, etc). The cardio wanted to do a stress echo. The thinking behind it was as a means to justify surgery. IF the test showed marked difference between my heart at rest and under excercise then they would have hard data to show I needed surgery even though I thought it was not a symptom to be short of breath walking 30 yards across a parking lot to the car.

Once I took a hard look at myself, and how I *really* was feeling, and communicated fully to them they proceeded right away because I really did have shortness of breath and chest pain (aka shoulder pain). The surgeon said the only reason for me to have a stress echo would be if I wanted to try to convince her it would be OK to wait 6 more months.

What I'm trying to say is that I think the stress echos have their place in revealing symptoms in asymptomatic patients. Personally I was scared to even have one once I realized how sick I really was.....

All my best,
Ruth

 

[annie10]

Shannon-
The surgeon performed a 'reduction aortoplasty' which sounds very similar to the 'plication' you spoke of.

MrP- I was just at Cleveland Clinic this week, where the cardio wants to watch and wait. He is also the one wanting the stress echo. He believes my symptoms are caused by stress. (I guess I stressed my aneurysm into growing from 4.5 to 4.8.)

Ruth-I can't for the life of me (hah) figure what he would be looking for, unless he thinks my pain is caused from clogged arteries or something.