Aortic Vave Replacement at 35 - Jan 7 2014

[buju]

Greetings

First time posting, but I've been devouring this site once I found out I was going to be needing valve replacement several months ago. Just had a pacemaker put in 2 days ago and I feel amazing thus far. I've lived my whole life with a 35bpm...now I'm sitting at 75bpm. Can't even describe the difference I feel...just a whole new life.

But now my real concerns are taking over, as the valve replacement still looms overheard for a leaking aortic valve. Before getting the pacemaker I wasn't too concerned and was all for pushing ahead. Now I'm having second thoughts and reconsidering getting it replaced and maybe looking into getting it repaired...or at least attempting to.

Anyone have any experience with repairs? I know its an uncommon thing...but something I figured I at least should look at.

Cameron

 

[pellicle]

Hi and welcome

I've lived my whole life with a 35bpm...now I'm sitting at 75bpm. Can't even describe the difference I feel...just a whole new life.

excellent

But now my real concerns ... Now I'm having second thoughts and reconsidering getting it replaced and maybe looking into getting it repaired...or at least attempting to.

my advice is to ask and listen to the doctors. Seriously we here are all patients, and while may be widely read and may know about specific things your condition and your best course depends on many things. Your surgeon is best to answer those things ... if you have reservations about the advice your surgeon gives you I encourage you to seek another opinion. Always a good idea.

Certainly discussing things here can help you to contemplate the answers your surgeon gives and perhaps give you more time to consider what has been said and get other questions to ask them.

I personally didn't think repair was uncommon, but then I'm not expert in that (I've had a repair done, then a homograft replacement then a mechanical replacement).

At 35 I'd be inclined towards a mechanical myself, at that age tissue valves tend not last the 20 years maximum that are claimed, as these times are more typical of elderly patients. I know that going on warfarin can be a shock for people but if you ask those of us here who are on it most will tell you that its not really an issue.

Of course a tissue prosthetic will delay such things but I would not be surprised to hear at your age a tissue valve only lasting less than 10 years (and there is a fellow here who had had his last less than two). There are arguments to both sides. Again I suggest being guided by your surgeon.

Best Wishes and look forward to seeing your future posts

 

[epstns]

Pellicle raises some good points. The one where my own understanding is different - and that is from what I've seen here, not that I'm an expert - is that repair of aortic valves is relatively uncommon. I think that many US surgeons feel that with the flow velocities and pressures affecting the aortic valve, it is better to just replace it and get it over with. In my case, I did not have significant regurgitation - primarily stenosis which kept my valve from opening fully. Replacement was my only option. Your case may be different.

I do agree that you should get at least one, maybe two or more, opinions from surgeons active in the aortic valve field. Then you can make your own informed decision.

Bear in mind that the common wisdom here is that once diagnosed with a heart valve condition, the only "bad" decision you can make is to ignore it and do nothing. Any of the repair/replacement paths offerred to you will allow you to continue to live your life. That's the prime objective, isn't it?

 

[knotguilty]

I agree to get second and even third opinions. Not something you go into on your own. I would not let anyone talk you into one valve or another, rather what is best for you. It is a very personal decision. There are no guarantees on either. Educate yourself on everything so you know what to ask the doctors.

 

[dick0236]

Greetings

...... I've lived my whole life with a 35bpm...now I'm sitting at 75bpm. Can't even describe the difference I feel...just a whole new life.

But now my real concerns are taking over, as the valve replacement still looms overheard for a leaking aortic valve. Before getting the pacemaker I wasn't too concerned and was all for pushing ahead. Now I'm having second thoughts and reconsidering getting it replaced and maybe looking into getting it repaired...or at least attempting to.

Cameron

I imagine you do feel a lot better and have more energy with the increased heart rate....but correcting the heart rate problem probably will have little to do with correcting a "leaking valve" problem. If you are uncomfortable with the current surgical decision, get another opinion.....but if surgery is indicated, remember it is no longer a BIG deal.

 

[Rachel]

I agree with everyone here - getting a couple of opinions from qualified medical doctors who specialize in this area is always a good idea!!!!

I've heard that your own equipment is far better than a replacement - and I thought that I read somewhere (like on Cleveland's site) that a regurgitative valve is easier and more successful to repair than a stenoic one

Yup – here’s their website

http://my.clevelandclinic.org/heart/disorders/valve/youngvalve.aspx


Aortic valve repair

Aortic valve repair may be an option for patients who have bicuspid aortic valve disease or other aortic valve conditions that are associated with valve regurgitation (leaking valve).
Aortic valve repair is performed less often and is more technically difficult than mitral valve repair. However, the majority (two-thirds), of leaky bicuspid aortic valves can be repaired with good results
Advantages:
• Preserved heart muscle strength, and preserved natural heart anatomy
• Decreased risk of infection
• Decreased need for life-long anticoagulant medication
Drawbacks:
• This type of aortic valve surgery is technically difficult.
• Aortic valve repair is only an option for leaky aortic valves, not stenotic valves.
• Although a repaired valve can possibly last a lifetime, about 20 to 25 percent of patients will require a valve replacement within ten years. In the best case scenario, the repaired aortic valve will function like the original well-functioning bicuspid valve.

 

[Garserin]

Hi Cameron, welcome to ValveReplacement.org. I had my aortic valve repaired 2 and 1/2 years ago and am very happy that a repair was possible. Because of my huge aneurism, close to 60 mm at the time of surgery, I had severe regurgitation but no stenosis and the valve was in good shape. The surgeon didn't know ahead of time if repair was possible and I didn't find out till I woke up after surgery.
I am very happy my surgery was done at Mayo, a first class clinic with a large volume of valve repair surgeries. I believe not every hospital will give you the same chance of a repair.
Just ask if you have any questions.

 

[Tom C]

Aortic valve replacement at 35

Aortic valve replacement at 35

I chose aortic valve repair because it offered an outside chance of being a permanent fix. My surgeon said I could expect 12 years from the repair but the Mayo Clinic's own data - 332 repairs done between 1986 and 2011 - show that 72% of repairs are working fine at 15 years. Those results seemed similar to a tissue valve, but at age 51 no tissue valve could possibly last the rest of my normal lifespan. The downside is that 11% of aortic valve repairs don't last 5 years and that is worse than tissue valve performance. I figured my choice was kind of a home run swing; I had a chance of a great result but also a greater chance of striking out.

As Rachel points out, the goal of the repair is to make a functioning bicuspid valve. Both my existing cusps were plicated, meaning a wedge was cut out and then resected to take the slack out of each cusp. One of my cusps was lower than the other so the low one was raised to the same elevation and sutured into the wall of the aorta. I had a ring sewn into the base of the valve for support, which is common in mitral valve repair, but not always used around the aortic valve. Finally the two cusps were held tight together and sutures were placed at each end. These sutures prevent regurgitation by holding the valve opening tight but they also introduce a bit of structural stenosis. I was only on the pump for 1 hour and 20 minutes, so my surgeons worked quickly.

This is what is meant by "technically difficult." There is a whole lot of sewing going on and it has to be done well to work. Once the heart is restarted, all the sutures and structural work have to take the pressure and movement right away. A few weeks after the operation I sheepishly asked my cardiologist if I was dependent on the sutures for, well, the rest of my life. I didn't know. He assured me that the heart tissue quickly grows over the sutures and over the course of the first year becomes stronger and smoother. It seems the main predictor of success of an aortic valve repair is how the valve performs immediately after surgery. If it's good, it's going to be good. Mine showed trace regurgitation after surgery and again at my six week post op echo. Hopefully I hit a home run.

For some, it will be interesting to note that my surgeon, who recommended and performed the repair, was Hartzell Schaff. He promotes mechanical valves over tissue and yet he believed a repair was right for me even though he gave an expectation of only 12 years. His main argument was the avoidance of blood thinners, even immediately after surgery, and a comparably lower risk of stroke and/or endocarditis. I have to think that, though unspoken, the outside chance of the repair being a permanent fix also played a part in the recommendation.

I think an aortic valve repair is well worth looking into, but as Gaserin suggested, go someplace that has plenty of experience with the procedure.

 

[AZ Don]

I went to the Mayo clinic for an aortic graft due to aneurysm. Although my BAV is well functioning, my surgeon estimated there was a 50% chance it would fail and so we discussed replacement options. I don't recall repair being an option. It's something to discuss with a surgeon if you can find one experienced with valve repairs.