Bucuspid valve replacement and ascend aorta

[zztimeout]

Well I was diagnosed with the aorta valve being bicuspid when I was 1 year old.. Many ecg's in my life showed the valve was operating ok... Now I am 41 the last few ecg's have showed that the valve is still working ok but the ascending aorta is 49mm. It has grown 3mm in one year which is a concern. Well I am booked for a MRI early feb and if it proves that it's 49mm its time to talk to a surgeon. My Cardio said that they will replace the valve while they are there but he says the ascending aorta is a complicated operation which scares the "you know what" out of me...
I have private insurance and was looking at the Prince Charles Hospital for the operation.... Anyone have any other ideas??
Anyone out there had sane operation as I am looking at?? Love to hear the choices you made and some more info ...
Thanks
Dave
Brisbane , Australia

 

[traveler]

Dave,

Don't worry too much. It's a big deal but many of us have faced the same (or similar) circumstances with the same fears. And it's worked out fine.

Traveler

 

[Marko2011]

G'day Dave,
Firstly can I mention that if you have been affected by the flooding in Brisbane or other parts of Queensland recently I wish you and your fellow Aussies all the best, may you recover soon and stronger. With regard to your enlarging aorta, and bicuspid valve, the cardiac MRI is the gold standard for measuring the aorta and having a detailed look at your bicuspid valve. Good plan to replace the valve and possibly the aortic root at the same time, a big fix and I know it sounds a bit scary. I'm going for the Ross procedure if possible when the time is right, my aortic root has grown 4mm in 3 months it seems, but that's via echo, it's only 41mm but i'm a short well built bloke, with chronic and poorly controlled severe hypertension (180/95) and take 4 anti hypertensives. Ringing the cardiac nurse this morning. Good luck with the MRI and be sure to let us know the result.

 

[ALCapshaw2]

Surgery of the Aorta is a Step Up the Ladder of Complexity in Heart Surgery, BUT, in the hands of an Experienced Aorta Surgeon the risks are not much higher than ordinary Valve Replacement Surgery which in this country is around 1% risk of morbidity and 1% risk of mortality versus almost certain demise if those conditions are NOT fixed, even less in the hands of Top Aorta Surgeons.

The Key is to find a Surgeon with lots of Knowledge and Experience dealing with Aortic Aneurysms and the often accompanying possible Connective Tissue Disorder which is a congenital disorder often seen in BAV patients.

There is a 'Valve Sparing' type of Aorta Repair / Replacement that can be used IF your BAV is still in 'good working order'. Again, it is best to find a Surgeon who has done this procedure enough to be proficient in it. Be sure to Ask the Right Questions about Experience and Results when interviewing Surgeons. A surgeon who primarily sees only Coronary Artery Bypass patients with the ocassional Valve Job is NOT the kind of Surgeon you want to put your trust in.

'AL Capshaw'

 

[epstns]

I'll second Al Capshaw's comment. I'm currently preparing for surgery to replace a bicuspid aortic valve and asked two surgeons how much more risk is involved if I need repair of my aorta. Both said it was additional work, but not unusually risky in their opinion. The over all risk is similar in their opinion whether they need to replace a portion of the aorta or not. Just longer in the OR.

 

[camgough]

There is a 'Valve Sparing' type of Aorta Repair / Replacement that can be used IF your BAV is still in 'good working order'. Again, it is best to find a Surgeon who has done this procedure enough to be proficient in it.

I had the valve-sparing aortic root replacement sugery in July 2010. I am 30 and was just diagnosed with a bicuspid valve and ascending aorta aneurysm. Mine was 67mm, so way past the point of needing surgery. My valve was apparently working OK too, and the surgeons were able to save it. This means no mechanical valve and blood thinners. There is the possibility my valve will need replacing in the future, but I will cross that bridge when we get to it. A Dacron graft was used to repair my aneurysm.
It is a big, very invasive procedure and I am finding the recovery long. I also need a placemaker now as a result of the surgery, but am not on any meds.

Good luck with it all, you will be fine! Ask any questions you have!

 

[Sbullock]

Hi Dave. I had a bIcuspid valve and an ascending aortic aneurysm. I had been having yearly echos and the last two showed the aneurysm was 4.9 cm. I asked for a CT to get a more accurate reading of the aneurysm. The CT came back saying my aneurysm was actually 5.4 CMs.
It was now time for surgery. The hospital I went is a major heart centre in Toronto where they do a lot of surgeries in a year. The surgeon does aortic replacements all the time and I was comfortable with his expertise. When I had my pre surgery angiogram my bicuspid valve was working fine so the surgeon said that he would leave it as it is if he could and just fix the aneurysm. The aneurysm surgery was short (2.5 hours)and I kept my valve.
I felt just the same as you did prior to my surgery but you will find that in a good heart centre this surgery is really a workaday event for the surgeons. Once you're on the other side and taking your first steps with your physio you'll see how calmly these professionsls deal with your recovery. Good luck.

 

[Mentu]

Hi, Dave, and welcome to our community here in VR. For many of us heart surgery is our first major health issue and at first it is scary to think about. If you read people's experiences here, you will learn that normally it is routine for the surgeons or, as Steve said a "workaday" event; but it is not for us. The great news is of course that this type of surgery can produce excellent results. It is very wise to learn about your condition and what the surgeon will do, but try not to get too focused on every detail. During surgery, when the surgeon see the actual state of things, he may need to alter previous plans. This isn't too uncommon and it is only what you would want him to do.

Let us know how we can help, Dave.

Larry

 

[Rosebud54]

Hi Dave. I was born with a bicuspid valve just like you. I also have developed TAA. My has grown from 4.6 to 5 since 2009. I am having surgery before 1 Apr 2011. Don't have the exact date yet, but will soon. I'm still trying to choose between a mechanical and tissue valve. Bethesda Naval Hospital in Bethesda, MD is where I'm having my surgery. I'm a little scared but I want to get it over with.

Carol

 

[yotphix]

One other thing worth mentioning that two cardiologists and a surgeon all pointed out to me when I went in a 39 is that the already fantastic stats on cardiac surgical success would be even better for relative youngsters if they were broken out that way. They all said that anyone under 65 was 'young' by their standards so you have an extra advantage going in.

 

[buncle]

I had a dialated aorta but, a regular valve.I had the aorta replaced and my original valve put back in. Like Al said you will want a surgeon who has alot of experience doing this procedure.It is more complicated but, there are surgeons who excell at this and that is who you want to do your ohs.

 

[Greg a]

I just want to weigh in with a BIG HEARTFELT WELCOME TO OUR FAMILY you are one of us and we care so keep posting and keep us posted

 

[zztimeout]

Hi all,
Thanks for all your information... I really did feel isolated as no one could help me through this difficult time in my life. Reading all your posts has made me feel a little easier (and I mean a little) about what lies ahead for me. I am not that concerned about the recovery at present, but more inportantly the opening the eyes after the operation is what I pray for.

Has anyone got any information about The Prince Charles Hospital in Brisbane as the place to get the op done...?? I have Holly Spirit, St Andrews ect to look at...

I have been told that Prince Charles is the Cardio central for Briabase... Anyone have any experiences here??

Thanks again for all your postings
Dave

 

[Allisoninoz]

Hi Dave. Happy Australia Day!
I'm in Melbourne. I'm 42 and am booked in to have my bicuspid aortic valve replaced on Feb 22 at the Epworth Private.
I've come across a few Australians on this site but not loads. There are a couple of others in Melbourne and at least one from Perth (skigirl). I'm pretty sure there's somebody from Brisbane too, so maybe do a search on that?
I was diagnosed young too (had two other surgeries as a kid) and have been checked every year by my cardio and have been having yearly echos since I was in my early 30s. I don't have a lot of symptoms but my valve is down to .6 cm, which is very narrow. However, my cardio also tells me that surgeons replace valves at an earlier stage in some countries than Australia... not sure if that's right. He says that surgeons/cardios here tend to let us go as long as we can with our natural valve. I'll be having a mechanical valve as I don't fancy facing another surgery in several years' time (could be five, could be 15 but regardless, don't fancy the idea). And I'm scared about not waking up or about having a stroke but as the surgery gets closer, I'm becoming less anxious and just want it over with. While I don't have serious symptoms (i.e. I can easily walk for 45 minutes, I don't have puffy ankles etc) so many people on this site say they didn't realise how bad they felt until after the surgery when they feel so much better! So that's really reassuring.
Everybody says the waiting is the worst part. I've been booked in since just before Christmas so am now just hanging out for it to be over with.
This is a great site to dip in and out of - you'll nearly always find somebody else with the same concerns - or even better, somebody who has the answers.

 

[Philip B]

Risk?

Risk?

Any kind of open heart surgery is a big deal. Many of us have gone through AVR surgery with the added complications of having aortic replacement. Yes, it adds some complications, but like others have said, a competent surgeon can handle the task.

Some of us opted for replacement valves which come with a factory-installed dacron conduit. It's an option that can save a few minutes in the operating room. Of course, there is a downside as not all valves are available with a factory-installed conduit.

-Philip

 

[zztimeout]

Hi Phillip,
I am only just learning about the valves and the short letters you all speak of so pardon if I sound a little stupid .... The way I understand is that there are two types of valves... One tissue from maybe a cow or pig and the other which is mechanical. No medication is required for tissue but will wear out maybe in 5 years or so.. Where as mechanical valve lasts for life but need to take medication for blood clots and other issues... Am I right or have I gOt it wrong ???

Thank
Dave

 

[epstns]

I'm no doctor or technician, but I believe that the expected time that a tissue valve will last is generally more than 5 years or so. I am having a bovine pericardial valve implanted in early March, and they showed me the data indicating that these tissue valves will last, on averagesomewhere between 5 and 15 years. This means that most patients will get 10 to 15 years from their tissue valve. People who get tissue valves often need to take anticoagulation meds (warfarin, etc.) for the first few months after surgery, but this is only temporary.

One thing that both surgeons I met agreed on is that tissue valves generally last longer for patients who are older when the valve is implanted. At your young age (I'm 63), they would likely recommend a mechanical valve unless you have a strong reason to choose otherwise.

I think Bob (tobagotwo) had posted some very detailed information on the various types of valves, when they are used, etc. in the Valve Selection forum. You should read through the info there.

Welcome - we're all in this together.

 

[neil]

theres no quarantee on which ever you pick, saying that yes mech should last you a life time.tissue depends on age, i was 52 and was told 10 to 20 yrs,bottom line do you take another op or be on anti coags rest of your life,either way its a win win situation

 

[ALCapshaw2]

Hi Phillip,
I am only just learning about the valves and the short letters you all speak of so pardon if I sound a little stupid .... The way I understand is that there are two types of valves... One tissue from maybe a cow or pig and the other which is mechanical. No medication is required for tissue but will wear out maybe in 5 years or so.. Where as mechanical valve lasts for life but need to take medication for blood clots and other issues... Am I right or have I gOt it wrong ???

Thank
Dave

Actually there are MANY manufacturers of valves, both Tissue and Mechanical.

The 'Big 4' Mechanical Valves in the USA are manufactured by ATS, Carbomedics, On-X, and St. Jude.
They each have websites describing their valves. Sorin in Italy is another manufacturer in the international market.

I'm not totally familiar with the Tissue Valve Manufacturers.

See the Valve Selection Forum form more information on the various valve options.

'AL Capshaw'

 

[Philip B]

Valves?

Valves?

Dave,

As others have already mentioned, there are a number of different kinds of valves. This is true for valves in both the tissue and mechanical varieties. I haven't done much research on the availability of tissue replacement valves with a factory-attached aortic conduit. My mechanical valve is a St. Jude Master's Series with a factory-attached conduit.

Longevity of valves is a topic we often kick around on the forum. Predictions regarding how long tissue and mechanical valves last are simply predictions. Someone else got it exactly right in the post which noted that there are no guarantees with any of the valves currently available.

At the risk of irritating other members, during my time with the forum, I've seen numerous posts from members concerning replacements of tissue valves which last less than five years. In fairness, there have also been some posts indicating failures of mechanical valves.

Personally, I believe re-ops are pretty much a sure thing with a tissue valve, but that's simply my opinion. Of course, if you stick around long enough, we can generate a lively discussion regarding the positives and negatives of mechanical valves and coumadin.

There are great valves on both sides of the tissue v. mechanical debate.

-Philip