Ascending aorta aneurysmal dilatation

[rufus]

Hi,

I only seem to post when i have a problem but once again i am hoping for some words of wisdom / guidance from the wonderful people on this site.

Basic background of AVR dec 2007 due to Bicuspid Valve, CRT (biventricular pacer) dec 2011. 41yr old female, 5'4", 10st 6lb.

I went to a&e (ER) with a very tight band of pain around my chest (roughly where a bra would sit), blood tests, ecg examination and physical examination all clear but i still had this pain. it would ease off but never go away and then be extremely painful again. I am constantly fatigued and become light-head with quick movement and i am unsure whether this is related. The 'duty' member of the cardiology team suggested a CT aortagram.

The results of this came back "aneurysmal dilatation of the ascending aorta, measuring approximately 48mm up to and involving the brachiocephalic artery origin. The arch and descending thoracic aorta is of normal calibre. No dissection or leak". I was allowed home and advised that all will be ok until my next scheduled cardiologist appointment in february 2013.

Now this concerns me, i still have this chest pain, pain level going up and down and feel that february next year is quite a time to wait to discuss this further with a specialist. I want to contact my cardiologist now but am i being over-cautious - can this wait until next year ? I am now worried that it is going to rupture, i live on my own.

Has anyone experienced the same and at 48mm should i be pressing for action now.

I have read on this wonderful site that this type of aneursym can happen to those with BAV so im hoping for some guidance to hopefully stop me worrying so much.

Thanks in advance ;O)

 

[Duffey]

I haven't had problems with an aneurysm, but from reading posts from those who do, 4.8 is the number approaching intervention. I believe six month checks are used to keep track of the rate of growth; however, if this is the first indication that it is enlarging, I can understand why you would be concerned. It's hard to monitor growth with no previous data. I would want to talk to someone for clarification before your February appointment. Are you on blood pressure meds?

 

[Jkm7]

Good to see you back here but sorry for the reason.

I would be calling my cardiologist requesting to see him sooner.
While I'm sure the care and advice you received in the ER was fine, your relationship is with your cardiologist and even if for no other reason, hearing reassurance from him would be comforting for you and you wouldn't worry so quite so much.

Best Wishes.

 

[Rachel]

I agree with Jkm7, I think it's a really good idea to see your cardiologist sooner than Feb.

Also what Duffey said is true as well, it's really hard to measure any growth rate with only one measurement.

I do know what it's like to be told that your ascending aorta is dilated, mine was 5.2cm the first time I found out that mine was dilated. I was very nervous about it rupturing (I was 45, and same height as you are).

The first doctor I saw told me to calm down and didn't do anything, and I was not comfortable with that. The second doctor put me on lisinopril, told me not to lift anything over 20 pounds, and set me up for an MRI.

I'm not trying to make you worried or nervous, just to say that I do know what it's like to feel as though you're living with a potential time bomb. I think most doctors say the cut-off for surgery consideration is when you reach 5.0cm.

I still don't know how fast mine was growing because I only had one measurement, but at 5.2cm my doctors felt that surgery was a good idea (my surgery was 3 months after finding out).

So in my opinion, seeing your cardiologist sooner is a great idea, that way you can at least come up with a plan, and I think it will make you feel a whole lot better.

Wishing you well,

Rachel

 

[Fundy]

I'm no expert for sure, but from what I've been reading here 4.8cm ascending aorta aneurysm for someone 5'4'' that had a bicuspid valve would most likely get a recommendation for surgery. You should probably at least contact your cardiologist and mention you'd at least like him/her to look at the CT report.

I think its definitely worth worrying about.

 

[Superbob]

I agree with the others that it should be taken seriously and checked out promptly. I always heard that about 5.0 was the magic number, but it only figures that the number could be smaller than that for people of smaller frame, and even a little larger for those of larger size (like me). Mine was measured at 5.5 during the surgery, and had increased significantly in the months leading up to surgery.

All best to you..keep in touch with us.

 

[Matt C]

Had samething was 4.9 they told me magic number in USA was 5.5 they changed it to 5.0. Get it fixed asap keep your bp down meanwhile they can put you on a beta blocker so it does not enlarge meanwhile or attempt to keep it that size.

 

[hetmarie]

Hopefully you've called your cardiologist by now but as many others on here, I would call the cardiologist and inform him/her of the recent development. Especially if you are having pain. I had an aneurysm from the childhood until March 2011. I've been told that a normal measurement of an aorta can be anywhere from 2 to 4 centimeters or larger depending on the person and their size. Mine was at 4.8 for 12 years but I had no pain and am also 5 ft 10 in. tall. There are meds they can put you on to try and prevent the aneurysm from growing as well. Maintaining a low BP, being on beta blockers to slow the pressure of the blood flow. Personally I'd rather have my doctor telling me its nothing to worry about rather than waiting to go in February and having my doctor yell at me for not getting in sooner.

 

[rufus]

Hi all,

Thanks for all the advice - I have contacted my cardiologist who has brought my appointment forward to next week which is a start.

Still feel pretty anxious and have that 'time bomb' mentality at the minute, every pain concerns me but I'm sure these thoughts will subside after my appointment. I will keep you all updated.

In response to questions from above , I'm currently take 75mg losartan daily which I have done since avr. I am advised that I can't take beta blockers due to copd. I have today also been informed that my over-active thyroid has returned but I cannot see a specialist until 6 November....... It never rains but pours !!!

Fingers crossed next week will reassure or at least prepare me or the coming months !!

 

[chaconne]

I had a 47-48mm aneurysm before my OHS a little less than a year ago. It had been there for at least 1 year with no associated symptoms. I've read the symptoms you are describing can be associated with aortic aneurysm, particularly if it is in the arch. Not a bad idea to follow up more on it, and get some specific answers.

 

[Jimjam]

I was BAV and have had the valve and ascending aorta replaced 5 weeks ago ( tissue valve ) I went from 45 to 51mm dilation in 4 months (I'm 38) Things I remember - readings can vary by up to 2mm depending on the technician. The magic number is 50mm from global guidelines. I live in Australia and they take quite an aggressive approach to surgery. The risks of not operating can be higher than the op itself. I would be getting a second opinion and starting to plan for the op. everyone is different but mine went quite well. I found out after the op- the valve was not in good shape and was actually stepped, main cause of regurgitation.

I concentrated on getting as fit as possible before hand - walking every day, dropped all alcohol and researched as much as possible. This forum is excellent and been a great help for my mental preparation. Ask questions. Good luck!!!

 

[rufus]

Hi All,

Well i saw my cardiologist on wednesday and he is not concerned in the slightest !! Apparently you dont get symptoms when you have an aortic aneurysm ??!! And my tightness in chest, wheezing, light headiness etc etc are due to something else (but no idea what). In addition my height and size are irrelevant and i dont need to worry as 5.5 is the magic number and he doesnt see that it will grow that much for a good five or six years !! He will book me a scan in 6 months just to check.

I had avr 2007, my aorta wasnt large at this time as they would have 'fixed' this at the same time. I had crt implanted dec last year and im sure that they would have noticed if my aorta was enlarged so my feeling is that in the last year it has enlarged quite quickly.

Now be harsh with me if you think im being to anxious but i feel i should look at a 2nd opinion - others views appreciated before i make a fool of myself by going to my regular doctor and asking for another referral.

Thanks guys and girls - look forward to comments

 

[Rachel]

Glad that you got in to see your cardiologist sooner! I'm pretty sure that aortic aneurysms do not cause any symptoms, which makes them a bit scary IMO.

Also IMO - I don't think you would be foolish to ask for a second opinion, if anything it might make you feel better - it is your health and life after all!!!

I'm not sure about the 5.5 being the magic number, where I went it was 5.0 (and I think that height is a factor) but you are not at 5.0 right now. I also think that different doctors and/or different countries have different standards (all the more reason to get a second opinion).

Good luck to you, I'll be thinking of you!

Rachel

 

[ElectLive]

Well i saw my cardiologist on wednesday and he is not concerned in the slightest !! Apparently you dont get symptoms when you have an aortic aneurysm ??!! And my tightness in chest, wheezing, light headiness etc etc are due to something else (but no idea what). In addition my height and size are irrelevant and i dont need to worry as 5.5 is the magic number and he doesnt see that it will grow that much for a good five or six years !! He will book me a scan in 6 months just to check.

I had avr 2007, my aorta wasnt large at this time as they would have 'fixed' this at the same time. I had crt implanted dec last year and im sure that they would have noticed if my aorta was enlarged so my feeling is that in the last year it has enlarged quite quickly.

Now be harsh with me if you think im being to anxious but i feel i should look at a 2nd opinion - others views appreciated before i make a fool of myself by going to my regular doctor and asking for another referral.

Thanks guys and girls - look forward to comments

Some do get symptoms from an aneurysm, some, perhaps most, do not. It's probably at most 50% odds that one does, and based on the feedback usually seen here, symptoms are even less likely. I think it's a stretch to say that your height and size are irrelevant, but definitive studies of large volumes of patients are still lacking to fully prove out the initial studies indicating that body size is an important factor in evaluating surgical timing. But, in any case, your baseline (normal aorta size where no aneurysm exists) measurement is probably the more important consideration. As others have said, 5.5 used to be the magic number here in the US, and still is for those without genetic disorders or other factors (like rapid growth). But for those with BAV, the official guidelines here in the US now indicate 4.5 to 5.0 for BAV patients, depending on specific circumstances.

Sorry to be blunt, but your cardiologist really has no idea how much it will grow, if at all, in the next five or six years. There are no predictable patterns...everyone is different, some have rapid growth and some are stable for years and years. So, that's why frequent monitoring (6 months or up to a year depending on the outcomes) is very important. If it has actually enlarged quickly, that's a very important factor in the surgical decision, as reflected in our guidelines here in the US.

For me personally, I would certainly be on board with seeking a second opinion. Just so you know, I had yearly echo's my whole life with no indication of significant aneurysm dilation until one at age 35 that was suddenly 5.0 cm. A cardiologist told me to start thinking about surgery, meet with a surgeon, but probably not do it until 5.5 cm. I did my own research and determined he was probably wrong and walked into my meeting with the surgeon thinking it should be done at 5.0 cm, so it was time. Well, a few minutes later, my surgeon said that he actually would have done it at 4.5 cm, and he pointed to the page in the guidelines explaining why (rapid growth). Now, anyway, this is me, not you, different circumstances. But the moral of this story is that you shouldn't necessarily take one cardiologist's opinion as absolute gospel, and certainly not without surgeon input as well.

By the way, there may not be "magic" in the magic number, but there are certainly a lot of factors in play. In addition to your measurements and growth rate, as well as your genetic condition (BAV), there's the skill of the surgeon and your related risks profile. If you and I were of equal size with equal measurements, that doesn't mean we'd necessarily have the same magic number, whether in the same country or not. Also, while there is a slight risk to leaving aneurysms alone, as long as that risk is lower than the risk of surgery, then surgery is usually not recommended. So, a lot obviously to consider, and I don't mean to discount any encouragement your cardiologist has given you. But I do think it's pretty fair to say that the most reliable and definitive source for your true magic number would be a surgeon who can evaluate all of these issues.

Now, all that being said...not at all trying to cause undue worry. But particularly given the nature of aneurysms, I personally would much rather err on the side of extra caution. Aneurysms are extremely unpredictable, you should never think you are a fool for pressing the issue if you don't think it's getting the attention that is deserved. Best wishes to you and no matter where your follow up path leads, just hope the next scan turns out to be nothing but good news!

 

[Fundy]

From what i've been reading for awhile, most cardiologists and surgeons have lowered the 5,5cm figure to approx. 5cm for quite some time now. Rather than just a 2nd opinion, you maybe need a cardiologist more in tune with the needs of those with connective tissue disorders.

This was taken from a webchat transcript with a cleveland clinic surgeon.
http://my.clevelandclinic.org/heart/webchat/aorta_aortic_valve_webchat_transcript_svensson.aspx

"Speaker_-_Dr__Lars_Svensson: The decision when to operate is somewhat dependent on your height. We use a formula in which we calculate the maximal cross sectional area of the ascending aorta or aortic root and divide the total in square cm, by a patient's height in meters.

If that is more than 10, then we will usually recommend surgery. The reason is we have found inpatients with bicuspid valves or Marfan Syndrome with a ratio greater than 10, have an increased risk of aortic dissection or rupture. We also found that shorter patients dissect at a smaller size."

 

[DavesMom]

Hi rufus,

Sorry to hear about your current problems. I had valve repair back in '76 and then AVR/aneurysm repair in '99. I now have an aneurysm that after three years at 4.4 went to 4.5 this year. Like you, I also have aneurysmal dilation of the braciocephalic artery and a couple of the other great vessels.

I would also encourage you to get a second opinion. I am very small (only 4'10 and thin) and worry about the impact of size and the fact that I've had two previous surgeries. I have a lot of scar tissue built up (my right ventricle is stuck to my sternum) and would rather not risk an emergency surgery.

However, doctors seem stuck on that 5.0 number (mine has mentioned it) but I would think your symptoms are more important than the size.

So best of luck and I do hope you get a second opinion. Keep us posted.

Cheers!

 

[Duffey]

I would definitely get a second opinion. Perhaps your symptons are unrelated, but it appears that the aorta is growing at an undetermined rate. For that reason, I would want to consult with another cardiologist.