Avr and assending aorta annurism

[Mike59]

Hello Everyone
This is my first post on this forum, which I have been following for a couple of months since being told I require OHS
I am a 52 year old male, born with BAV
Had the valve repaired when I was 19
To my great surprise knowing I would need the valve replaced in the near future, following a recent Echo and CT Scan I was told I need a graft (dacron) to repair aorta AAA as it is 52mm dilated

Is this rare and have many members had this double condition

Is the success rate similar to AVR and what is the long term prognosis

My operation is next month April and basically I'm quite frightened

Currently asymptomatic

Any help and advice would be a great help

Mike

 

[escargome]

Hi Mike,
Welcome to the family. I don't know too much about your condition since my BAV was my only problem. But I believe that others who went through what is proposed for you will come along shortly. Just take heart, you are not alone. When in April is your surgery scheduled?

 

[RobThatsMe]

Hi Mike,

I have, and had, a triple condition.
My 1st surgery in 2000 was due to an ascending aortic dissection. This was an emergency surgery, and they only gave me a 6% chance of surviving it. They had to stablize the dissection and fix my torn aortic valve. So, I wokeup with a mechanical aortic valve and a graft.

In 2010, I was told that pannus tissue growing around the valve liflets was preventing the valve from functioning properly and that it had to be replaced, or I would not be around in another 12 months. That is when they also discovered my ascending aortic anneurysm that had developed. I should mention that I too was asymptomatic. I was working out, jogging, and living a very active lifestyle.

So, I had an Ascending Aortic Dissection that needed support, an Assending Aortic Aneurysm, a bad Aortic Root, and a bad Aortic Mechanical Valve with Graft that needed to be replaced. They also had to bipass my carotid artery because is was connecting to the aorta within the aneurysm area. They moved it to a more stable part of the aorta.

They also installed a stent in my aorta with 20 cm of dacron tubing attached to it decending down my aorta to the abdominal area to help further support against further dissection.

I had two surgeons working on me, and I was in surgery for 13.5 hours, with a followup surgery to complete coiling off the aneurysm 3 days later. This followup surgery took about 3 hours.

The good news for you is that they found the aneurysm! These can be fixed or stabilized. Interview your sugeons and try and gain both knowedge about how they will approach your surgery, and in doing so, you should gain confidence in their abilities. If you don't feel confident, interview other surgeons until you do. I interviewed a few where I live locally, but didn't feel confident with them. I then went to the Cleveland Clinic, and these surgeons knew exactly what they were going to do to fix me. I felt good about it, and the rest is history. There are risks with all surgeries, but doctors work on heart valve replacement and aneurysms frequently. It is much better to get the aneurysm fixed than to worry about when it will burst. There is a reason they call these the silent killers. Your are fortunate that they found yours, and that they can fix it. After the surgery and recovery period, you should find yourself back to an active lifesyle.

Wishing you a successful surgery,

Rob

Feel free to PM me if you have any questions that I can help with.

 

[Fundy]

Yes, aortic anneurysms are quite common with BAV. Although I didn't need any aorta repair with my valve replacement, it seems that it does happen a lot with others with BAV. I think anneurysm repairs seem to have less trouble afterwards then valve replacements do. Although I may be wrong about that stat.

 

[Mike59]

Hi Chris

Operation is scheduled for 17th April

Being done in the UK have met the surgeon

Says there is a 5 to 8 percent chance of mortality, seems slightly high but other than that I have confidence in him

Thanks for your reply

Mikd

 

[Mike59]

Hi Rob

You are a credit to determination and modern medicine

How do you find your lifestyle now

Are there any major restrictions or limitations to your day to day activities and energy levels, I understand the coudamin restrictions but am wondering really about general cardiac ability.

Thanks for your advice so far

Mike

 

[Mentu]

Mike, being frightened at first is a very natural response when we hear the words "open heart surgery". Fortunately for us, OHS has become very safe for the patient and the prospects for recovery are excellent for most of us. I was 59 at the time my valve was replaced and had begun feeling as though my life was over. Today, I have a new future and am feeling very well. These problems are serious, Mike, and it is better to have the valve replaced and the aorta repaired before it is an emergency. The best recovery can be expected when surgery occurs while one is still in good health. You are likely to find that surgery is much less traumatic than you may currently imagine. Welcome to VR, Mike.

Larry

 

[ElectLive]

Mike - The double condition is not rare at all, many members here have had both conditions taken care of at the same time. The Cleveland Clinic here in the US has done studies of several thousand BAV patients, and 20% had an aneurysm. Of those who require valve replacement fairly early in life, I believe the percentage is even higher. There is an underlying connective tissue disorder that causes BAV and also very often affects the tissue layers of the aorta. Not only do BAV patients develop aneurysms fairly commonly, the aneurysms are susceptible to dissection or rupture at earlier stages due to the weakened tissue.

Outcomes from best case aneurysm surgery (elective) are vastly different from worst case (emergency). The success rate overall for elective procedures is very good but does depend of course on the scope of aorta repair (such as the exact location (root, ascending aorta, arch, descending aorta) and the related "parts" (valve, arteries, etc). The Cleveland Clinic found in one of their studies that the success rate of a bicuspid valve procedure (replacement or repair) combined with an isolated ascending aorta repair was identical (1.5% mortality) to those who underwent the bicuspid procedure only. I was quoted identical mortality risk for my procedure, and just a half a percentage point higher stroke risk.

Now, some of the other aorta repairs are riskier such as composite valve grafts, arch replacement, and descending aorta replacement, but top level centers are usually able to do those anywhere from 2% to 6% baseline risk. Obviously, individual patient factors come into play, so only a surgeon evaluating your particular situation can give a well studied answer on your particular risk. By the way, mortality risk obviously gets the biggest headline for any of these procedures, but additional stroke risk or other complications can come into play too with the more complicated aorta repairs requiring circulatory arrest.

Anyway, sorry to go on and on, but my point actually is that you should be in good position for a very successful outcome. Rob, on the other hand, faced the worst case, and thank goodness, lived to tell us all about it. Being asymptomatic is very common, about half of those with aneurysms share this. Long term outcomes are also excellent. The grafts are overgrown with native tissue and generally never need replacing. There is a possibility of developing aneurysms elsewhere, but the percentages are pretty low. You'll probably be advised to keep blood pressure controlled with a beta blocker long term, and warned not to do extreme weight lifting, but other than that, generally no restrictions.

Best wishes to you!

 

[Bill B]

To my great surprise knowing I would need the valve replaced in the near future, following a recent Echo and CT Scan I was told I need a graft (Dacron) to repair aorta AAA as it is 52mm dilated

Is this rare and have many members had this double condition

Is the success rate similar to AVR and what is the long term prognosis

My operation is next month April and basically I'm quite frightened

Currently asymptomatic

Any help and advice would be a great help

Mike

No, this is not rare at all. It is not a separate issue but is a common part of the BAV syndrome. If you want some light reading, here's a paper on the "aortopathy" (aortic pathology) of BAV witten by my surgeon and his colleagues.
http://billsworkshop.com/Some_AVR_lit/Miller_Aortopathy_of_BAV.pdf

You should be thankful this was discovered and will be fixed along with the valve. I had more extensive aortopathy, involving my aortic arch as well as the root and ascending aorta - Also, not that rare according to my surgeon as he covered in the reference I cite above. So, I got a valve that had a Dacron sleeve already attached to replace the root and ascending aorta, and a separate Dacron patch for the arch of the aorta. The latter is a more risky part of the repair. The AVR and ascending aorta are routine repairs.

The odds are overwhelming that you will have a very successful surgery. Also, the repair is so good that almost always there are NO restrictions on activity after the recovery period (about 6 months). My surgeon was very clear that I am free to do whatever I want, period.

Like you, I was essentially asymptomatic, which makes the whole thing seem rather surreal, doesn't it? I mean, right up until the moment they wheeled me into the OR I expected someone was going to pop out from behind a curtain and tell me I had been "punked", if you know what I mean (from a US TV show involving complex pranks). It seemed like a cruel joke of some sort. But, no, it was very real. Despite the lack of symptoms, my life was in serious jeopardy from the valve and the aneurysm. As my surgeon said, my first symptom could be my last.

I know it's almost futile to suggest this, but please, try not to worry. This surgery is performed many tens of thousands of times a year and is the most successful form of OHS. Your surgeon is quoting mortality figures that sound like "all comers". A big factor affecting your outcome is your over all health. Many patients getting AVRs and aneurysm repairs have other serious medical conditions. In most studies about half the patients undergoing AVR have serious coronary artery disease, and that repair complicates the surgery and is riskier, or they have lung disease, kidney disease or diabetes, all of which increase the risk of surgery.

Take some time to learn more about your condition. If you do, I think you will find that you are almost certainly going to do well and that worrying is a useless waste of energy. It's the unknown aspects of this, something all of us must face if this is the first time, that is frightening. Since you had a valve repair before, you already know quite a bit more about what to expect than most others. Keep asking questions and reading and you'll do fine.

 

[Tom Berning]

Hi Mike,

Welcome to the club! I'm 54 and had my AVR and Dacron graft done in December. Mine wasn't discovered until about ten years ago. I was mostly asymptomatic until a few months before surgery(ran my last marathon in 2009). I'm now 3 months post op and feeling really good. Waiting for surgery is the hardest part! The more you read you'll discover that BAV is about the most common of congenital heart defects. As long as you don't have other issues in our age bracket the mortality and complication rates are really low, while bad things do happen they're pretty rare. Hang in there!

Tom

 

[Mike59]

Hi Mike,

Welcome to the club! I'm 54 and had my AVR and Dacron graft done in December. Mine wasn't discovered until about ten years ago. I was mostly asymptomatic until a few months before surgery(ran my last marathon in 2009). I'm now 3 months post op and feeling really good. Waiting for surgery is the hardest part! The more you read you'll discover that BAV is about the most common of congenital heart defects. As long as you don't have other issues in our age bracket the mortality and complication rates are really low, while bad things do happen they're pretty rare. Hang in there!

Tom

Thanks to all who have posted so far --- really appreciate the information and comments ---

Certainly give me encouragement.

Op scheduled for the 17th April

 

[Gregg]

Mike

I am 45 years old and had the exact procedure done just over a month ago and am doing great. Back to work, driving, walking 3-4 miles etc. Having the graft done basically added 30 minutes on the machine so it went from a 30-40 minute procedure to a 60 minute one. My doctor said mort rate for me was under 1 percent. It is definately something you will want done while they are working on you.

 

[Mike59]

Wow Gregg,

Thats great news, what I didn't realise is time of these operations and hour on the bypass machine sounds a really short time.

Was yours the assending aorta.

Congratulations to you on your fantastic recovery!!!

Mike

 

[Gregg]

Mike

Yes. An ascending aorta that was measuring 4.8. I agree that an hour is quick, but as one of the other doctors on the team said of my surgeon 'he works scary fast'. I put up a post about my hospital stay called 'Valentines Day Special' in the Heart Talk section if you want to read about it any further. Also please let me know if you have any questions on anything at all.

Gregg