aortic dilation vs aortic aneurysm

[MNmom]

I thought I would change the placement of my post since it is more of a heart talk than an active lifestyle topic. To continue the discussion from the pre-surgery restrictions post, I did go to the cardiac surgeon, had a CT scan, and he measured my "dilated aortic root" at 5.8 now. I asked him if that was the same thing as an aneurysm, and he said yes, same thing. But he maintained that the valve was in worse shape than the root, though they will both be replaced. Surgery scheduled on June 10th (as i mentioned in the pre-surgery post). He also wrote a note putting a medical hold on my gym membership. SO i guess I will be just getting out in the fresh air and doing some good old walking, though he advised to keep the heart rate until 120 now, which isnt much.
OH well, glad it will be over with soon.
Thanks for the support

 

[Philip B]

That's pretty big

That's pretty big

At 5.8 you're where I was at when my cardiologist and surgeon recommended surgery as soon as possible. I hope the wait until June doesn't present any serious complications. I had to wait three weeks to get a spot on my surgeon's calendar. It was a rough three week wait. Good luck.

-Philip

 

[ALCapshaw2]

I'm glad to see that your surgeon has taken a more conservative approach to your exercise limitations before surgery.

I *assume* (hope?) that your CT scan included the Aortic Arch and that the surgeon evaluated that as well. Did he make any mention of your Aortic Arch?

Out of curiosity, did you ask how many aortic roots he has replaced?

You've not mentioned where this surgery will take place, but I'm guessing that it is a Local Hospital and not at the Mayo Clinic.

You are correct if you assume that I am biased towards using Experienced Specialists for Complex Surgeries.

 

[MNmom]

I had the choice between week of may 13th and week of June 9th. The surgeon said either would be fine- but he wouldnt adivse me to wait through the summer. Its still coming up quick- and i just couldnt pull it together in time for the week of the 13th- that is way too soon, and not going to do that if I didnt have to.

 

[Gusdog]

SO i guess I will be just getting out in the fresh air and doing some good old walking, though he advised to keep the heart rate until 120 now, which isnt much.

Do take it easy. DON'T lift anything too heavy with that size aneurysm. I know it's frustrating, but it's vitally important that you don't overdo it. Like I said in another thread, I overdid it right before surgery, and I'm lucky to still be alive to share advice.

 

[MNmom]

deciding to stay "local"

deciding to stay "local"

I had my first surgery at Mayo with dr Shaft. I am still with the same cardiologist that I have been seeing for over 20 years and the one who sent me to mayo (from a metro hospital he was working out of) 11 years ago. He is now at a different metro hospital heart center, and is very comfortable with the surgeon here for this particular surgery. We trust his recommendations, feel comfortable now with the two consults I have had with the surgeon, and feel especially comfortable that I will continue to be followed by a cardiologist who we really trust. For my first surgery, he was researching all over the country for the best surgeon and the best procedure. We decided on Mayo because of thier plan to repair the valve. It didnt work, and they ended up putting in a tissue valve in since i was a 20 year old female. After the experience we have had with one of the best places, i am no longer convinced that the best known always provides the best result.

 

[Rick]

If feasible for you, and if I were in your shoes, I would look at least for an opinion at Mayo Clinic or another major center. Its great to find a good cardiologist one trusts but I would like the thought of one of the place's that does these operations all the time. Why do you say your first operation was not good? I presume that they placed the tissue valve knowing well that a reop would be in place but that you had other reasons for prefering this; and I understand that sometimes a repair is not a good option once they see it, a decision made with the benefit of direct sight of the valve ....I make these comments with my best intentions in mind though obviously I do not know more about your situation than what you wrote and may just not know enough.

My best wishes to you on your continued health while waiting for surgery.

Rick

 

[Phyllis]

I put you on the calendar for June 10th. Please follow your surgeon's advice and take it easy until then. Best wishes to you.

 

[Ross]

I had the choice between week of may 13th and week of June 9th. The surgeon said either would be fine- but he wouldnt adivse me to wait through the summer. Its still coming up quick- and i just couldnt pull it together in time for the week of the 13th- that is way too soon, and not going to do that if I didnt have to.

Hon mine never got to 5.0 before it blew. I didn't have the luxury of choosing a date. It was now or die. I don't want to see it come down to the same thing for you or anyone else. I would not wish a dissection on my worst enemy. I can't stress enough how dangerous waiting can be.

 

[ALCapshaw2]

I had my first surgery at Mayo with dr Shaft. I am still with the same cardiologist that I have been seeing for over 20 years and the one who sent me to mayo (from a metro hospital he was working out of) 11 years ago. He is now at a different metro hospital heart center, and is very comfortable with the surgeon here for this particular surgery. We trust his recommendations, feel comfortable now with the two consults I have had with the surgeon, and feel especially comfortable that I will continue to be followed by a cardiologist who we really trust. For my first surgery, he was researching all over the country for the best surgeon and the best procedure. We decided on Mayo because of thier plan to repair the valve. It didnt work, and they ended up putting in a tissue valve in since i was a 20 year old female. After the experience we have had with one of the best places, i am no longer convinced that the best known always provides the best result.

It sounds like you are being a little "hard" on the surgeon at Mayo because you didn't get the result that you WANTED 10 years ago, i.e. a successful Aortic Valve Repair.

You need to understand that Aortic Repairs are Difficult and often NOT successful, even today, because the aortic valve must withstand the highest pressures of all the valves. 10 years ago, that was cutting edge technology. Even today, Aortic Repairs are almost exclusively performed at the Major Heart Centers and there is still a fairly high chance that they will NOT work.

The Bovine Pericardial Tissue Valve that you received has a PROVEN record as the longest lasting tissue valve, giving you the opportunity to have children without the risks of going through pregnancy while on Coumadin or other type of anticoagulation that is required for LIFE with mechanical valves.

The fact that your Tissue Valve 'only' lasted 10 years is not surprising given that you received it at age 20. Tissue valves are KNOWN to wear out faster in younger patients. In 60 year olds, the Bovine Tissue Valves typically last close to 20 years or more. Consider yourself FORTUNATE to have gotten 10 good years from your Bovine Tissue Valve. It did it's job and you have healthy children to show for it.

EVERY Valve choice has it's positive and negative aspects. When given a choice, most choose the option whose negative aspects they can best live with.

MY impression of your experience at the Mayo Clinic is that you received the Best Outcome possible at the time assuming that you wanted to have children. From my perspective, your Surgeon at Mayo made the right call.

'AL Capshaw'

 

[Arlyss]

I have not read the entire background of this situation, but assuming that the aorta, and not just the valve, were being followed over time, it is shocking that an aneurysm was allowed to grow to a size of 5.8 cm without intervention.

It is possible that the size of the aorta jumped suddenly, but that is also a high risk situation. Rapid expansion is an indication that the tissue is weakening quickly, and tearing or rupture may be imminent.

I would never allow myself or my family members to wait casually for surgery with a 5.8 cm aortic aneurysm in my chest. I would find an aortic surgeon that specializes in the aorta in the chest. In expert hands, the risk of the surgery would be much less than the risk of the aneurysm tearing or rupturing.

Generally speaking, valves do not kill or disable without warning in the way that aneurysms do. I say that despite my husband being disabled from complications related to his mechanical valve.

The stakes are very high in a situation like this, and as others have posted, for anyone who may read this thread, it is vital to find expertise when thoracic aortic aneurysms are involved.

 

[ALCapshaw2]

Arlyss,

This thread started in the Active Lifestyles Forum where she (MNmom) was disappointed that her surgeon was recommending that she keep her HR down to 140 during her workouts. (See the "pre-surgery restrictions" thread in the Active Lifestyle Forum)

She reported that her "dilation" was 5.0 in year 2000 and had increased to 5.5 at the time of her first post.

'AL'

 

[Mike C]

I suggest you go back and take the earlier week.

That is a big aneurysm which could easily disect.

I had my surgery at MGH at 5.2, my cardio said over 5.5, meaning 5.6, he wouldnt elt me go home.

by the way, the first comment from surgeon was abotu how thin my aorta was.

are you on a beta blocker or losatran? you may want to inquire.

 

[Fred4]

Mom,

Please don't wait, and please don't do anything to increase your blood pressure in the meantime. I have been waiting on a 4.8 cm ascending aortic aneurysm since 2000. It has not changed in size since it was discovered then. The doctors have been superb with medication that controls and relaxes my arteries, and as a result, my aneurysm has not done what they usually do (even with the best medicine) which is get bigger. However, I still feel like I live with a ticking time bomb. I am very alarmed by your situation. From what I have read, 5.8 is very risky on a day to day basis.

I also rebel at the thought of OHS, but as others repeatedly point out, the alternative is worse. Read the "stories" section of this forum. They are very motivating as to the need to do this now. Please forgive me if I am misreading you, but the tone of your email makes me think you are still in denial over the seriousness of this. Your case also sounds complicated. As others have mentioned, the Cleveland Clinic can do a very quick records review that might help you get a second opinion while not delaying the scheduled surgery. I suspect that the Clinic will only encourage you to expedite this treatment.

Fred K

 

[Kathleen]

I would suggest a second opinion as soon as possible at the U of M or Abbott or Mayo. Sounds like you should be post surgery by Mothers Day with a 5.8.
Kathleen

 

[aussigal]

I can see that our members are concerned about your aneurysm. I hope you aren't pannicking too much, its probably not the best thing for your Blood Pressure.

It's an awful lot to mentally digest when you first learn you need OHS. Luckily you have the advantage of already having one OHS so you know pretty much what to expect.

Trust your instincts and do what you feel is right for you. I remember being told that its really good to be mentally ready for elective OHS. I wish you all the best while you map out your journey through OHS.

 

[MNmom]

Thank you all for your concern, but

Thank you all for your concern, but

I can see that our members are concerned about your aneurysm. I hope you aren't pannicking too much, its probably not the best thing for your Blood Pressure.

It's an awful lot to mentally digest when you first learn you need OHS. Luckily you have the advantage of already having one OHS so you know pretty much what to expect.

Trust your instincts and do what you feel is right for you. I remember being told that its really good to be mentally ready for elective OHS. I wish you all the best while you map out your journey through OHS.

Thank you, and yes, I see there is common concern. Another friend told me at the beginning of this process to "trust your gut" and I immediately said my gut is leading me back to the Hospital where I am comfortable and have a connection to the cardiologist and feel good about the surgeon. And yes I know Mayo is the high volume place to go.
I have a surgeon who talked very frankly about what he would do, and it is the same thing that would be done at mayo. He has been doing this since 88, and is comfortable working on the root as well as valve. It is a top rated heart center nationally. My cardiologist told me I have the benefit of living in the MN metro, where there are several heart centers that are very closely rated. The root was never presented as the pressing concern in the first place, but more of a thing to fix with the next surgery. It has been a slow growth for the last 8 years, and has gone from 5 -5.5 in that time.The concern has always been the valve and the root is being fixed since they will be in there anyway. The difference between 5.5 measure from a few weeks ago and the 5.8 yesterday was the difference between tests- the Echo and the CT. Just when i feel comfortable with my decision, i read all these posts and second guess myself, which is very stressful and keeping me up at night. So I appreciate the concern, and understand the concern, but what i need more than that is the support. Thanks to all.

 

[Gusdog]

I remember being told that its really good to be mentally ready for elective OHS.

I would second that. The folks here are concerned about you, and there's a lot of knowledge and experience here. However, it's ultimately your decision in consultation with your doctors. If you still feel comfortable waiting until the 10th, and your surgeon is fine with that, then go with it. It is important to have confidence in what you are doing, and in the people who are doing it. That's my opinion, anyway.

My aneurysm was measured at 6.7cm by TEE, and 6.2 cm by the CT. Either way, it was really big. Still, my cardiologist let me go home. My surgeon told me to take it easy, but didn't treat it as an emergent case (though he did suggest I take a cancelled appointment that was coming up soon; I did). Now I'll grant that my aorta did dissect before surgery, so maybe my case makes the argument for getting in ASAP. However, I think if I had been more diligent about taking it easy, that wouldn't have happened.

That's why I strongly encouraged you to take it easy, especially with lifting. Also, if you have any symptoms, do not ignore them. Call your cardio, or get to the ER, or whatever you have to do. Otherwise, if you need to wait to be mentally ready for this, then that's what you have to do.

 

[Ross]

We are supporting you whether you realize it or not. People die from these things everyday that could have been avoided with intervention immediately, but for some reason, are told to wait. Frankly it disturbs me that your surgeon isn't concerned about it's size. Bonnie, the member that died last month, knew she had one and said her Doctor didin't seem concerned either. She is no longer alive to tell the rest of the story. I'm sorry if this is upsetting, but you do need to fully realize the danger your in.

 

[Arlyss]

Gusdog mentioned that his aorta was measured at something over 6cm, and that he did dissect. No matter how "quiet" he was, it might still have torn at that size. Fortunately, it did not rupture completely.

Our statistics about aortic size and dissection or rupture are incomplete - some people are not counted because they suffer a "massive heart attack" and there is no autopsy. They may be the ones with the most fragile aortic tissue. They never make it to the ER at all.

Some day there may be better predictors of the risk of aortic disease to each individual. That is not currently the case.

I personally would feel safest by removing the threat, and having it done by hands who can offer that surgery to me with the lowest possible risk. There are aortic specialists who can do this (entire ascending aorta) with the same risk as the valve replacement alone would be.

I hope this helps someone struggling with a diagnosis of an ascending aortic aneurysm associated with BAV.

Best wishes,
Arlyss