dilated ascending aorta at 4.2cm...

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bethanne

After my second opinion appointment (by the way my new doctor is so awesome...) she questioned what my aorta looked like, as my symptoms did not line up with the performance of my leaking bi-cuspid aortic valve. Well my MRI revealed a dilated ascending aorta of 4.2 cm. When she gave me the information over the phone I was not sure of the significance of the news.
and told her I thought I could live with the fatigue a while longer and would follow up in six months(she said my regurgitation was showing 2+) which gave me a false sense of security before I began to read up on the dilated aorta...
I have placed a call to her office to schedule an appointment to talk about the new news.

What I am reading is that over a 4.0 is considered an anneurysm. and surgery recomended at 4.5 when bi-cuspid aortic valve is present?

I would appreciate any information or experience y'all have with dilated aorta's...

thanks, bethanne
 
If it gets to 5, your in significant risk for a rupture. It could feasibly do this in a very short amount of time. Mine ruptured 2 months after they discovered it. I never made it to the 6 month check up. I would certainly question why they are waiting. Not to scare you, but dang, I'd hate to see your go through what I and Rob thats me and a couple others have. We were just darn lucky to remain alive.
 
Thanks Ross...
My sentiments exactly! This has really rattled my cage because I had come to terms that I will need an AVR, but thi is new and I wouldn't even have this information If I had not sought out the second opinion....
 
My aorta measured at 4.4 cm during my angio. I mentioned this to the surgeon during my pre-op, wondering if it should be fixed while he was doing the AVR. He said NO, that it was not pre-aneurysmal, and didn't need anything done to it. He also said it would likely shrink in size after the VR, and that its size was related to the bi-cuspid valve.

I'm still wondering if that was good advice and whether or not it will become a problem in the future, but both the cardio and the surgeon seemed to think that nothing was necessary.

I guess size doesn't always matter? I do have pretty low BP, and the angio report didn't say anything about dissection.
 
Sorry but this homie played that game and LOST!!! I would never listen to anyone that would leave something like that go.
 
Bethanne,
I had a mod- severe leaking aortic valve and was found to have a 4.7 ascending aorta during the TEE. I went to one of the top heart surgeons- Dr Cohn and they resected by aorta and replaced my valve. I am only 6 1/2
weeks post op but I am already finding how much more energy I have to exercise. Here I thought I was just getting lazy getting close to 50, but I walked 5 miles yesterday without any fatigue.
Good luck with your appt.
Kathy H :)
 
Hi,

The good news is that you discovered this condition prior to you really becoming a "ticking time bomb". You have some time to determine your course of action.

My doctor is also watching 2 areas that are potential aneurysm growth issues.
His has told me not to worry, it was his job to watch these areas, and that once they hit 5.0 cm it would be time to discuss surgical options.

I should also point out that a medication I am currently on, Beta blockers is very helpful in preventing further development of the aneurysm. The other helpful thing is that I am restricted to "No Heavy Lifting or exertion." My doctors have advised that I should not lift more than 50 lbs. Well, I may stretch that from time to time, but the main thing is, "Is that I am very much aware of not trying to lift or strain myself through exertion.

I would strongly recommend that you visit the following site for some very helpful information on aneurysms. You can read many narratives from folks that have had them.

http://www.westga.edu/~wmaples/aneurysm.html


Good luck,

Rob
 
Rob

Rob

I went to the web site you have posted......I clicked on the left side..Aortic Aneurysm and dissection Narratives....Wow..there are over 200 narratives from people who have had dissection aneurysm ect. I spent 30 minutes and plan on going there again later. My Dad, age 90, has a stomach aneurysm..His doctors, say he would never survive the operation... Read several family members narratives that told of what a horrible death when one does dissect..... :( :( :( :( :( :( Several family members just told of finding their loved one dead..This site is not for the weak of stomach... but, did learn of their symptoms just before dissection. Bad back pain..ect..Dad knows of his aneuurysm..but we never mention it..He is healthy...Reading only 20 narratives..I PRAY that if his burst. he will go quickly...but most linger for about 2 months in ICU.. :( :( :( Anyone with an aneurysm..I say, again..this is so scary..Bonnie
 
P.s.

P.s.

For those who have not read any of my posts about my wonderful brother-in-law...At age 50..14 years ago, he came home from work and cooked dinner. Was reading in bed..when he screamed out. sister rushed him to hospital where he died 24 hours later with a burst aneurysm in his heart. Left my sister to raise 2 teenage sons. :( :( :( He only said that evening that his legs hurt. Bonnie
 
Hi Bill - I am glad to hear that your blood pressure is low. From what I am reading the recommendations for blood pressure with dilated aorta's are lower than otherwise considered acceptable blood pressure. Not to worry you but the cedars-sinai website recommends surgery at 5cm unless Marfarns or bi-cuspid aortic valves and a few others. There was some additional info there as well...

thanks kathy, it is testimonies such as yours relating fatigue to heart issues help me feel sane...

Rob- thanks for the link to the site. My cardio gave me strict instructions to check blood pressure daily and take a double dose of med if systolic is higher than 130... Many of the testimonies helped me to understand the importance of this as well as limiting activity..

I have contacted Methodist to request a copy of a TEE I had in '97. I am curious to see if anything was noted then ... of course before i found this site i would not have known to ask for a copy:)

thanks everyone for feedback, i will keep you posted.

bethanne
 
update...
I scheduled an appt with cardio for june 1st to go over mri results and talk about timing of surgery .
I also contacted methodist for copies of all echos and TEE reports since 1997. They will be mailing me the info.

YEAH! This is a great victory for me. As silly as it sounds.
I have read through alot of other posts and have great compassion for those of you going through even more serious situations than mine. I know how all of this has affected me and my mental health.

I have been wanting to call my cardio for the past 4 years and tell him what my second opinion cardio appointment has found ... that my ascending aorta is dilated.

what do y'all think... Do I call him and give him a heads up? My six month check-up was scheduled for next fall, and I will need to cancel as I plan to change to the new cardio I have contacted for second opinion...


Trying to find the balance between trusting God, walking in faith, and being wise, informed and involved with my health and well being. :)

granbonny - i understand your emotions with all that you have been through. This anneurysm "stuff" seems to be a little uncharted as the information i am finding out there is not completely consistent. Unlike the bi-cuspid aortic valve issue that I have also researched. It does appear to have some familial tendencies. Have the doctors recommended screenings for your family members?
 
Could aorta come back to normal size after AVR?

Could aorta come back to normal size after AVR?

Hi Bill,
It's been 3 months since your AVR... do you know if your aorta has gone down from 4.4cm?... You can provide all of us with very valuable info.. if it does bring the size down to say 3.5cm for you over time, then it would mean that your dilation was purely specific to the valve problem and not to the aortic tissue.. please do share your results with us on this..

It seems that the awareness of needing to replace dilated aorta especially for people with valve problems is a relatively new phenomenon... and if ALL of people born with valve problems has also aorta problems, then many would need re-operation for aorta at some point, if dilated aorta was not replaced at the time of AVR... In the history of valve operations (40-50 years now??), there must have been hundreds of thousands of people with valve problems undergoing only AVR and not the aorta replacement (even in dilated state e.g. 4.4cm)... and in their case it really MIGHT have come down in size after AVR... Do the proponents of new research of aorta replacement at the same time as AVR mean that (i) SOME of such people end up rupturing aorta (e.g. 10%), (ii) ALL (100%) of them would one day rupture... Unless their research concludes (ii), they might be replacing a lot of aortas during AVR without even needing it, just to cover that it MIGHT be needed later... I wonder if (ii) was true, then a large percentage of people (say 90%) would have needed another aorta surgery to replace root or ascending aorta, as this combo did not seem to be a norm in the past decades...

So while we have heard from so many folks whose aortas were replaced at the time of AVR, we also need to hear from folks like Bill whose aortas were spared and eventually got back to normal size, if at all... so Bill please help us out solve this puzzle..
thanks
taranjit
aorta also dilated at 4.4cm, BAV regurgitation..
 
Hi Taranjit

Hi Taranjit

Missed your posts. Are you still bodybuilding? Where is that handsome picture of your avatar? :D :D :D We have some new members interested in weights, ect. You must post more to inform them...Bonnie
 
Taranjit,

I don't know the answer to that question yet. I trust my surgeon and cardiologist; I have to think that they would not knowingly open me and and then close me back again with a "ticking time bomb". They even did a CABG for me on a small coronary artery that was about 30% occluded, just to avoid the possibility that I would have to undergo OHS again.

My follow-up stress echo is scheduled for August 4. I don't know how accurate of a measurement can be taken of the aortic root, but I do plan on asking the tech to measure that specifically. My original 4.4 cm measurement was from the angiography during my heart cath in December. It was brought to my attention because my cardio said it was about the largest aorta he'd ever seen. Still, neither he or the surgeon thought there was any danger with aneurysm or dissection.

And interestingly, I thought I'd be getting a HUGE valve with an aorta of that size, but they used a 23mm St. Jude. So maybe the aorta wasn't actually as big as it appeared on film? I don't know.

I definitely will update you all when I get my echo in August. And, I'll tell my wife that if my aorta blows and I fall over dead, to be sure to post here and let you all know..... :eek:

Just kidding-

As you can tell, I'm not going to lose any sleep over this. All I know is that I feel great since the surgery. And being a lawyer, my surgeon made a lot of comments to me about the *risk* of operating on one! I seriously doubt he left anything "undone."
 
Hi Granbonny,
As for bodybuilding, it is something that lives on my head 24 hrs a day but not in my body at the moment... everytime I visit cardiologist and visit this site, I get good news of "don't lift more than 40 lbs" suggestions... It is so mental and devastating.. Sure it is good to know the truth and face it, rather than ignore it like a fool only to let it bite you.... but I feel that after a while when you have gathered all the info there is to know from everyone, it is time to apply sensibly in your own case and ward off any negativity.. I truly hope good lord will provide me another oppurtunity to get back to my bodybuilding once again, and only then I will post that picture of mine again :).. it is 1.5 years old now anyways..

As for not lifting more than 40 lbs and things like that, it is amazing that same doctors don't tell you to not (i) have sex anymore, (ii) or have constipation, or (iii) fists of anger, etc - what they call ADL (Activities of Daily Living)... When they put limitation of lifting heavy, they probably assume (i) someone lifting like a powerlifter maximum poundages (i.e. only one rep), (ii) holds breath, etc... if those things are not done, why can't people lift relatively lighter weights for many repeatitions and train their body (including their heart, aorta, etc) to bear with the occasional and abrupt demands which people can't avoid on a daily basis, e.g. sex, constipation, etc.. anyways, I hope everytime I come to VR.com, there are some successful stories with people accomplishing amazing feats inspite of this challenge we are in, and not just sad stories.. I truly recognize that able to have another life inspite of valve problems is in itself a BIG success story for everyone here, and God has to be thanked for it.. I hope we all keep seeking God's miracles like this and be able to do more and go beyond than what we think is possible..

Last 2 paragraphs are a total waste of bandwidth for this important topic under discussion on aorta dilation.. I hope people like Bill (I am sure there are more) will help us track this in the next coming months to see if the aorta slowly goes back to the normal size or not...

good luck everyone and sorry for diverting the topic...
taranjit
 
I would think that any surgeon worth their salt would check the aorta when they have you open. I guess they could tell if it was bad tissue and needing replacement. Apparently they can't tell from the tests if the aorta tissue is bad or not. In my case, the surgeon thought he could just open up the aorta and place the graft inside and then surround it with my original tissue. But when he got in there it fell apart in his hands and had to be cut out, sent to pathology, and just the graft was sewn in.
Also, for many of us I would assume, it was the aneurysm that spread the valve, causing it to be replaced. Had I not had the aneurysm, I would never have had aortic valve problems. But, then again, my mitral is leaking so maybe the connective tissue issues would've gotten my aorta as well.
Gail
 
Need more info on aorta!

Need more info on aorta!

From what I gather, some of the possibilities are:

(i) Primarily a valve (aortic) problem which causes the aorta to dilate over time...
(ii) Primarily aorta (tissue) problem which causes the aortic valve to malfunction over time...
(iii) Both problems occuring together..

Now my questions are:
(a) Is (ii) above and Marfans syndrome the same thing?
(b) Any other disease (than Marfans Syndrome) that can cause (ii)??
(c) Is there any test to find out if one has aortic tissue problem (i.e. (ii) and (iii) above)??? - Not echo or anything, but may be blood tests, etc???... My wife is currently pregnant and they just tested the baby for Down's syndrome using blood work (thank lord, turned out negative)... So that made me think, there must be some sort of test to find out if one has aortic tissue problem or not (for adults like us).... As for benefits of that test, it might put someone like (i) at ease that his/her aortic root/ascending aorta dilation is because of aortic valve and not because of the tissue problem itself.. Even if in that case aorta replacement is required, at least it helps knowing if or not aorta in general is healthy (and is not going to degenerate after an AVR)... Please let me know if you can help me out with this info... any source you can point me out to..

And Gail, could you please tell me who your surgeon and cardiologist was?.. I also live in Fremont and looking for some good ones... and if you don't mind, you know how big your aorta had become when the surgery took place?... How did they determine that your (original) problem was only that of the aorta and not of the valve also?..

thanks everyone... this aorta business really keeps me worried.. especially with my weight training tendencies... so will really appreciate your help..
taranjit
 
Hi Bill, I guess the good news is that you have a baseline to go by with your aorta, Did your doctor specify if it was the ascending or descending or abdominal area? That could make a difference regarding the size I would think.
As with all of this I would think the important thing to know is how long has it been at that size. Is it stable or is it slowly enlarging.

What I think is unsettling about it all, is that unlike the regurgitation and/or stenosis aortic annuerisyms are asymptomatic until the disect(sp) or rupture.

My cardio explained that there is a relationship with congenital bi-cuspid aortic valves and dilating aorta's. What I have read supports this and explains them as connective tissue disorder. One article mentioned that it varies, and gives an example of an individual having an aortic anneurysm as long as 16 years after valve replacement.

It is something to keep an eye on for us bi-cuspid aortic valvers...

Ross what size was yours when you were first diagnosed? you mentioned you did not make it to your six month check up, was your enlarging at a fast pace... I think I will take a peek at your story to understand more of the details.

My internal medicine doctor wanted me to do a follow-up lab work today to compare blood test for thyroid function, etc. from 6 weeks ago. I advised her to my latest info and she was quick to let me know that having a dilated aorta offered no explanation of symptoms of fatigue, etc. My first cardio had sent me to her to find the cause of my fatigue, etc. because he did not believe they were from my valve. ..

Kathy would you mind sharing more of your specics, numbers, etc. before surgery. I was quick to let her know that I had been chatting with others who had did not realize until after their surgery how much they needed it and how much better they felt. How can science argue with real life experience?
 
Bethann,

I would be concerned too. How bad is your fatigue? I don't know if waiting for it to get intolerable is such a good idea, particularily when it seems that it is going to need fixing at some point of time anyway. I'm glad you found a doctor you like. I like both my cardiologist and my PCP and I know how fortunate I am in that department.

Bill,

I would really follow that dilated aortic root very carefully. Like you, I'm not sure how they judge what to repair and what to skip. Here they bypassed you with a 30% blockage and after surgery I was told my RCA and lst diagonal branches were 50% blocked but I might never need anything done to them. The blockages are in difficult places and may be the result of some radiation treatments I had as a teen-ager so maybe they arn't as likely to progress. I thnk I'll compile a list of questions for my surgeon. I haven't seen him since my discharge from Duke last August.
 
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