Taken back by CT Aorta measurements

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M

marka

Hi

My cardio just gave me the results from my CT scan of the Aorta, ascending measured 42mm, a few weeks ago the echo measured 37mm, as you would expect I'm quite taken back from this and it's not the news I wanted to hear. I suppose all one can do is live life normally and play the waiting game. My cardio gave me no restrictions and was happy with yearly checkups.

Anyone else had not so great news like this? It's hard to handle.

Thank you all
Mark
 
Oh yes. Many of us have had news like that and, there's no question, it's not easy to handle. I was initially told 48mm and it was adjusted downward to 45mm, which is (of course) better. I was initially told we'd do a recheck in six months and then yearly. I requested my first recheck after three months, then six months and now we're on yearly. My thinking was something like, "if this is the first time we've seen it, how do we know how fast it's expanding?" I was diagnosed in early November of 2004 by echo and TEE. Three CT's later (Jan, April and Nov 2005) I'm still at 45mm. Now, I'm pretty okay with waiting (except that now they're also following a paraspinal tumor at the level of my aortic arch, so I "get to" have an MRI for that on June 26 which will, incidentally, also image my aorta--but that's a whole other matter. :rolleyes: ) For me, the keys to being okay with waiting are: 1.) I have found an aortic specialist (cardiothoracic surgeon) who I trust--both to read the CT accurately and to operate when the time comes. and 2.) I have become as familiar as possible with published studies about aortic disease (in my case, particularly bicuspid aortic valvular disease***checking your profile, I see this is your case too) and sought out information, particularly on VR.com.

This is not news any of us wanted to hear. It is hard. It does get a little easier with good company. :cool:
 
Should I be on blood pressure medication and beta blockers at 42mm? My blood pressure usually sits around 120/75.

Thanks
 
Good question. I can't answer for you, but I can relate my experience.

Because I read on the Bicuspid Aortic Foundation website ( http://www.bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html) that bicuspid aortic disease very often included labile hypertension, I started monitoring my blood pressure soon after I was diagnosed. Although my average BP was nearly exactly yours (I think it was 120/78), I found it varied enormously (this was especially so because I was spending a lot of time online, reading and freaking out! :eek: ). I found that when I was on the telephone talking about my diagnosis with a family member, my BP sometimes hit 200-something/100-something! Subsequent doctor's visits (and the accompanying "what are they going to tell me next?" feeling) also made me mildly hypertensive--like 130 or 140/80 or 90. I brought print outs of my BP record with me to the doctor's and was immediately put on a beta blocker. I subsequently talked to Dr. Raissi (whose the Bicuspid foundation's advisor) who told me that he likes to have BAVD patients' systolic BP average between 105 and 110 at rest and usually ace inhibitors, along with beta blockers, are required to accomplish this. He further said that if resting BP is in this range, then exercise BP systolic usually does not go above 135, and is safe. I got my doctor to prescribe an ace inhibitor too and now my systolic averages 107. It takes a little getting used to the drugs, but I feel fine now and I feel I'm doing all I can do.
 
Hi Marka,
Here's an excellent article by Yale researchers regarding timing of surgery....see url below.

http://72.14.203.104/search?q=cache...horacic+surgery+yale&hl=en&gl=us&ct=clnk&cd=4

Also, an echo is not very accurate for measurement of your ascending aorta, whereas a CT scan with contrast will provide an accurate measurement. You didn't mention having symptoms, and given your current aortic size, I think you are most likely going to be able to delay surgery for several years...if not many years. The dilation increases in size slowly. Six month CT scans (and echo tests to evaluate your valve) may be in order for a year or two (thereafter CT scans once per year) to determine how fast your aorta is growing. Usually the size will increase about 0.1 cm per year, and surgery is recommended at 5cm unless you begin having symptoms..... in which case surgery is advised right away. I know how stressful you must feel right now, but don't feel like you need to rush into this surgery. The article above is excellent reading.
 
Hi Marka,
I am in a similar situation. I have known about my BAV since 1987 and have had regular checks. 18 months ago it was noticed that my ascending aorta was dilated (about 5cm). After an MRI scan the cardiologist decided to leave it for the time being (after consulting a surgeon). I am due for my six months check this Wednesday. They are looking for any change in dimensions. I am still a active runner (I just did a very hilly half marathon yesterday). I feel the best I have done for years but I know that the decision about when to have surgery will not be based on that alone. Also a year ago I had a 24 hour blood pressure monitor done as every time I had my blood pressure checked at the hospital it was sky high. The results of that during the day my blood pressure was normal (120/70). I now monitor my blood pressure every now and then just for peace of mind.

Martin
 
Don't panic

Don't panic

Marka I think you have already been given some good advice, echo?s are not that accurate and until it is measured using a CT with contrast you will not have an accurate measurement. I very much doubt it would dilate 5mm in a few weeks. The normal rate of growth of these aneurysms is 1mm a year. I would ask the cardio their thoughts on if your blood pressure is OK for the dilated Aorta. :)
 
Echo vs CT

Echo vs CT

Hello Marka...
Having BAV and a dialated root, I too have received conflicting info regarding the anuerysm dimensions. Last November, the echo showed a diameter of 4.0 cm whereas the Ct/contrast was at 4.5cm. My 6 month follow-up (about 3 weeks ago) are as follows...4.5 (echo) and 4.3 (CT scan). At the suggestion of my cardiologist, I had a consultation with his surgeon of preference. He suggests surgery within 6 months for my situation. In November, another surgeon advised that I have surgery in 6-12 months. Although I am 100% asymtomatic, and the aorta appears to be stabile (??), my valve has deteriorated a bit during the last 6 months. The cardio-guy wanted me to wait, but now 2 surgeons have recommended surgery....mine and his. Hmmmmmmm?
BillB
 
BillB,

Yes your measurements would be confusing and it just makes matters worse, I would listen to the surgeons now.

I believe my measurements are different because the echo is 2D, the area of 42mm is no visable on the echo as it's straight on, maybe of the echo could be done side on it would be visable.

From what I've gathered the general size for operation in Australia is 50mm whereas in the U.S. 45mm seems common.

Mark
 
Marka, if aneurysm is driving the surgery and not valve deterioration, I'd say most experienced surgeons in the U. S. operate at 50mm. A few operate at 45mm. Surgeons with less experience operate later, usually 55mm. The reason that some operate sooner, at least in part, is that their skill is reflected in statistics that favor the patient's survival if they have surgery over the patient's survival if they do not have surgery. There is no doubt variability based on age, general health, comorbidities, prior surgeries, etc.
 
I gotta tell you guys waiting....I don't know how you do it. I thought waiting for a dental appointment was bad. The only break I feel I've caught in my life was showing up to the ER with some great doctors who checked me over thoroughly and found that I needed right then, what you guys are waiting for. If I had to have it, which I did.. BAV 5.9cm aneurism and suffering from high blood pressure for at least the past 12 years...I'm glad I didn't know about it until a day before they operated.

Having said all that, how did you all find out you had the BAV in the first place? Apparently none of my doctors ever suspected anything for my entire 46 years before having a heart attack.

JohnnyV......or just JV works too..or just John...but ya's doesn't has to calls me johnny...nevermind. :)
 
Jonny V,

I don't know how I'm going to wait this out, I only have known for a few months, I suppose you just learn to deal with it and get on with your life. Most disaster stories come from people who didn't know they had it, whereas I'm being monitored with a clearance of no restrictions from a good cardiologist. From the stories I've read the surgery is big but people are mostly back to normal weeks after and living life so you need to be optimistic, I suppose it's similar to a valve, just monitor it and when it's time to sort it out, it's time.

Dissection is my only concern and if it wasn't for this it wouldn't even be on my mind, but my cardologist has put my mind to rest about this. The people on this forum have also put it into perspective and have made it through the surgery and are living life normally.

I complained of fast heart beat to my GP and when to a cardio who found the Bicuspid valve, the fast heart beat was probably due to my asthma medication. It wasn't until a second opinion and some reading on the internet till I found about aorta problems.

A guy at my Dad's work returned from a few weeks away and looked skinny, my Dad asked why he was looking so skinny and he said the doctors came across a 10cm (yes 10cm) aortic aneurysm after he complained of being tired, he had the operation the next day. He was lucky he didn't have to wait but he was probably very close to dying, I would prefer to wait then no know since I have the choose. If I hadn't have gone to the GP I would has never known ever, I read it catches a lot of people out in a bad way unfortunately.

Mark
 
I'm waiting on a callback from my cardio to ask questions about blood pressure and beta blockers. From your experience when would someone generally start using beta blockers? My blood pressure sits around 120 but I have read ideal is 105 to 110 would that warrant blood pressure medication?

Thanks
 
Beta blockers are used for tachycardia and arrythmia as well as hbp. I was on a beta blocker for years for these, altho my bp was quite low.
 
Waiting... and other stuff

Waiting... and other stuff

Marka,

Waiting.... Just do it - better to wait (if appropriate) than cut. Cutting is is better when waiting more will start causing permanent damage to the heart. Don't freak out. Read, Learn, Plan....

Get a second (and third if necessary) opinion.Get good advice from more than one doctor. Echos are estimates. Skill of the tech and the doctor interpreting can affect the measurements significantly. Get a second opinion from a different practice. Do so more than once over time if you need to ease your mind. It will either confirm what you doc is saying or contradict his assessment which will then send you to a "tie breaker". Having another well respected doctor weigh in on my issues gave me comfort that I was proceeding correctly.

Blood Pressure - Lower is Better for BAV
I would think an Angiotensin II Receptor Blocker or ACE Inhibitor might be a good idea. Basically as low as you can stand without symptoms may extend the life of your valve. If you pass out (or even get light-headed) when standing up then that is too low.

Symptoms - Pay CLOSE Attention
I didn't think I had them. They sneak up on you and can be subtle. They can be attributed to "getting older" (Not for you but for some of us older than you). I wouldn't say I'm "Short of Breath" which my cardio almost twisted my arm to get me to say. I would now say that I don't have the cardiovascular stamina that I would expect. I feel my heart working harder than it should be with less exhertion than I would expect. I am breathing harder sooner than I would expect. I feel like I have to "take ONE very deep breath at the top of a flight of stairs" - I'm not breathing hard I just need that one extra deep breath. That didn't used to be the case.

Semi-Annual Echo (Annual at least)If your insurance will pay for 2 x a year echos then I would convince your cardiologist that twice a year is better than once (it will help to sooth your worry as it is a very reasonable timeline). If insurance won't pay twice a year then go for once a year unless you "feel" a reduction in your cardio capabilities.

Find a great doctor
This is key. Find a doctor who will talk with you regarding your personal research, BAV disease and the correlation to Cystic Medial Degeneration that leads to Aortic Aneurysm and Dissection. If he doesn't understand the correlation then find a different doctor. Do your research here too (not just on your condition). Talk with other docs, read, get referrals.

Be aware that you are more aware (and maybe worried)
I was/am more aware of my heart rate, chest feelings, cardio conditioning, "chest tightness", etc... than I was before I found out about my valve. I have to remind myself not to freak out when I feel something different. That "tightness in my chest" may be discomfort from a too spicy meal or may relate to the fact that I ate twice as much as I should have or I'm feeling a tremendous amount of stress from work (or heart issues) that day. I monitor myself - I wait an hour or two to see if it goes away. I remind myself what I ate or how much (sometimes too much). I check my stress level. I haven't had a situation where the feeling lasted beyond my self imposed time limit and sent me to the doctor. But I never would have noticed those feelings before my diagnosis 3.5 years ago. I'm not saying "disregard serious symptoms". I'm saying evaluate yourself. Be smart but know your own freak out levels and issues (and when you ate too much).

Heart Measurements
Consisent increases in Left Ventricular size are not a good thing. Please read the consistent here. I have 1st, 2nd, and 3rd echos within one month of each other (from different doctors) where the measurements of EF, EDD, ESV, Aortic Root were all different (not huge differences but some).

Consistent increases in Acending Aorta size are not a good thing. Same discussion as above.

Black and white measurements for surgical timing.... Before Dissection or Rupture! Not very definitive but true. If you have dissection at 4.8 then it won't matter to you that conventional wisdom says surgery should be 5.0 . This to me underscores the critical need for a good doctor. Also- size is relative. Depends on where you started (i.e. if your aorta is bigger than average as "normal" then 4.5 may not be a catastrophic deal. If you are a 100 pound female then 4.5 could be huge).

Consistent increases in measurements over time push the surgery date closer. Stable measurements over time confine us to the waiting room.

Perspective sometimes changes
Waiting didn't bother me too much. 6 month echos were just cautious because my doc didn't think we were in line for surgery for a few years (maybe). For some of us (not all) the change comes and the priority shifts from waiting to planning since surgery is dictated by decreasing heart function (i.e. increasing heart dimensions). I would rather still be waiting.... But I don't have that choice. Planning for surgery sucks. However, I am eternally grateful to my general physician who heard the almost inaudible murmur 3.5 years ago and sent me to the cardiologist. If I didn't know about my valve I wouldn't recognize the subtle symptoms I have and who know how much damage to my heart I would have let occur before I realized what was going on. And I still would have ended up in surgery - just in much worse shape.

Conflicting feelings. Sucks to be here. Glad it isn't worse. Glad I live in a big city with top heart centers and great docs and surgeons. Wish I was 60 just getting to this point rather than 41. Glad I don't have CHF due to an unknown BAV....

Anyway - I hope some of these ideas and thoughts help. It may be years before your surgery (maybe not). Either way my suggestion is to live your life, enjoy everyday, keep you eyes and ears open, be aware of symptoms but don't freak out.

Good Luck,
David
 
Hi there Mark,

Our Aussi surgeons dont all operate at 5.0cm...
I believe they evaluate each patient individually and go from there...
My annie was 4.8-5.0 when I had my OP. I also have a family history which suggested early dissection. (Cystic medial degeneration was confirmed by pathology tests on my tissue after surgery). There are quite a few things they will consider before making the decision as to when to operate. Use this down-time to learn all you can so you can ask the questions that will ease your anxiety while you wait it out.
At 4.2 you are still a while off and I agree that your annie probably didnt grow this much recently. (if it did I think the Docs would have raced you off to surgery) its tricky and requires great skill to measure a moving curve accurately.
As for BP medication, I dont know, why not just ask. If you have a BP cuff take your BP for a while and record your readings so you can show the Doc. Mine was alot higher than yours and would climb to the 200/100's level when I exercised (not good for a dodgy Aorta).
I cant recall where you are in Aus.? One thing we dont have is the huge choice of specialists like our USA friends here. I let my Cardio chose my surgeon and he did a marvellous job :D . I think its important to put your trust in the team you have working for you.
 
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