Repairs vs. Replacement

[Ross]

There's an element of dice rolling for any option a patient chooses; may we all roll successfully!

I've been saying this for a long time now and I guess people just don't want to hear it, but it's the truth.

 

[7tonemonte]

Tony -

Have you consulted, or at least contacted, a recognized Bi-Cuspid Aortic Valve Surgeon with a long history of good outcomes? I really believe you need a second opinion from such an experienced surgeon.

'AL Capshaw'

I spoke to Dr Goldman at Lankenau outside of Philly. How would I go about finding a Bi-Cuspid Aortic Valve Surgeon? Any suggestions there?
And Maka your story sounds a little similar to mine, except that it is my aortic valve leaking. Im not symptomatic at all, and this was all discovered through a routine physical where they heard a murmur. My first cardiologist wanted me to go for OHS ASAP! I was frazzled and went for 2nd opinion who said it wasnt as urgent but the valve needed replaced. And the surgeon said repair it. My cardio said that if anyone can repair it that Dr Goldman would be the man. I am going to as Dr Goldman his track record the next time I speak to him.
Thanks for more confusion
Seriosly though, thanks for the info to everyone.
Tony

 

[Tom F.]

From what I have read BAV repairs are "iffy" for now, but give it time and the numbers may get better. The repair of a normal aortic vale damaged by an ascending aortic aneurysm has a great track record, however.

 

[debster913]

My mitral valve is classified as myxomatous. My cardiologist explained to me that my valve is degenerative, but that a repair would be in my best interest considering my age (almost 31 now). The surgeon explained the same to me, and said that he was 85% sure he could repair my valve. Thankfully I ended up with a repair. It also doesn't hurt that I had, in my and my cardiologist's opinion, the BEST possible surgeon for this type of surgery.

When I had my follow-up with the surgeon three weeks after surgery, he explained that repairs are sort of a crap shoot, you never know how long they will last. He said just to live, assuming that my repair will last me the rest of my life. While it's true that I may need a replacement at some point, I try not to worry about that. Got enough to worry about now. But still, in the back of my mind, I think about the fact that my valve is degenerative, and won't it get worse again? But it took 30 years for my valve to get bad enough to warrant surgery. Maybe another 30 years? I'd rather not have a replacement yet if I can help it.

 

[Sharlo]

I had repair done on my aorta valve March 14 of this year. I just found out two weeks ago that it didn't work and I'm right back to were I was before the surgery. My cardilogist is now talking about my going into Boston and having the balloon procedure done to try and open it wider. I'm afraid of doing this. I know it's a temp procedure. Has anyone had this done and how long does it normally last. The reason he is suggesting this is my root is 4.3 and he said they don't normally operate on that until it's 5. I go for a catscan on the 8th of Sept and then back to see my cardilogist on the 11 of Sept. I'm so confused and scared, I don't know what to do.

 

[Ross]

I had repair done on my aorta valve March 14 of this year. I just found out two weeks ago that it didn't work and I'm right back to were I was before the surgery. My cardilogist is now talking about my going into Boston and having the balloon procedure done to try and open it wider. I'm afraid of doing this. I know it's a temp procedure. Has anyone had this done and how long does it normally last. The reason he is suggesting this is my root is 4.3 and he said they don't normally operate on that until it's 5. I go for a catscan on the 8th of Sept and then back to see my cardilogist on the 11 of Sept. I'm so confused and scared, I don't know what to do.

I'm so sorry to hear this Sharlo. I don't know how long it would last, but if you've been through this once already, why do they want to screw around with it? They need to fix it once and for all and stop subjecting you to more invasive procedures. If only they had to go through it, they wouldn't do this crap.

 

[ALCapshaw2]

I spoke to Dr Goldman at Lankenau outside of Philly.
How would I go about finding a Bi-Cuspid Aortic Valve Surgeon?
Any suggestions there? Tony

Good Questions Tony !

One option would be to contact the Cleveland Clinic which is the #1 rated Heart Hospital, tell them your condition, and ask who has the most experience with your condition. They also offer an on-line second opinion service for around $500(?).

Another option is to ask your cardiologist (or even local surgeon) who they think is the Best BAV / Aneurism surgeon within a reasonable traveling distance (say 500 miles?)

I would be looking for someone who has done at least 100 identical procedures, and preferably more, with a high success rate.

I'm surprised none of our BAV patients have not come forward with recommendations. Maybe you should start a New Thread entitled "Looking for good BAV / Aneurism Surgeon in / near Pennsylvania".

There have been some threads on finding surgeons and checking their records. It is not always easy. It varies from state to state. GOOD LUCK in your quest!

'AL Capshaw'

 

[mntbiker]

I had been hoping for a repair of my BAV and the surgeon dismissed it as an alternative immediately. He gave me three reasons and I would imagine this would apply to everyone.

1) My valve had been leaking for so long it decreased the chances of a successful repair. (15 years with moderate or more regurg that we knew of)

2) There are two types of BAV's, one can be repaired the other can't. I had the type that couldn't be repaired. (can't remember what he called them - blame pumphead ) But the type can not be definitively determined until the surgeon is inside.

3) Since the ascending aorta was dilated the last thing I wanted was any further regurg and a repair will usually have a higher amount of regurg then a replacement valve even with a successful repair.

 

[Lynlw]

Good Questions Tony !

One option would be to contact the Cleveland Clinic which is the #1 rated Heart Hospital, tell them your condition, and ask who has the most experience with your condition. They also offer an on-line second opinion service for around $500(?).

Wow i can't believe they charge so much for a 2nd op. we have never had to pay anything to get 2nd opinions, just send everything they need records cath cd ect and that was it. many of the parent I know send records all over the country and i don't know of any of the hospitals charging. Lyn

 

[MikeHeim]

As my signature indicates, I had a repair about eight months ago. I posted a link awhile back from the Circulation Journal from the American Heart Association that showed extremely good success rate for repairs over the long-term (about 85% success over 25 years). Unfortunately, the link no longer appears to work, so I can't repost. As stated, the best case for a repair is that your chances of a re-op are low, without having to live with ACT. The downside (unfortunately, with OHS, there appears to be a downside with any option) is that a relatively small percentage of repairs fail, and some fail very quickly. However, for me, the choice was a no-brainer.

I did get the impression from my cardiologist that your surgeon choice is a huge factor in the long-term success rate. I was told to specifically wait for Dr. Laks, even though I ended up on his waiting list for a couple months. He is locally known as a repair specialist, and I'm hoping to get a good 50 years out of mine. I can only hope that I made the right choice.

 

[RossGurlie]

Both?!

Both?!

Well, when I went in for surgery, I know my surgeon first tried to repair my valve. Unfortunately, that didn't work, so the Ross Proceudre was done. Repairing th valve keeps the natural anatomy of the heart (do I even know what I'm talking about -- sounds right!!) and if it is successful, it can work. With a mechanical valve, you will have to take blood thinners all your life and with a replacement there is a possibility your heart will reject it. That's all I guess. And some will only need a repair and some will only need a replacement. The two don't always go hand-in-hand. But, I don't really know what I'm talking about....soo....someone tell me if this sounds right!!

 

[Mb]

Dear Sharlo:

Might I suggest that when you see a surgeon in Boston, that his opinion might be different than your local cardiologists? My husband has gone to Dr. Gus Vlahakes at Mass General. The first surgery 4-1/2 years ago, dual aortic and mitral St. Jude valves. And, now he needs his tricuspid repaired, and a pacemaker implanted.

Personally, I think it very possible that when you get to the "experts" that their opinions are often different than a cardiologist whose patients are 90% coronary candidates.

Marybeth

 

[mtkayak]

My surgeon said he always goes in there with the intention of repairing the valve but in some cases it's not possible or it wouldn't last. I don't think they can make that determination until they see the valve. Of course, the patient chooses the valve they want if he can't repair it. On my wrist band in the hopsital, it said "Repair vs Replacement". My first OHS was a repair and it lasted 22 years The thought of no more surgeries was very appealing to me... mechanical I can live with Coumadin, it's not a big deal.

 

[WayneGM]

An interesting tread........I had a mitral valve repair. Neither my Cardiologist or Cardiac Surgeon ever even mentioned the option of a replacement vs repair prior to the surgery, and I didn't know enough to ask. However, during pre-op as I signed all the disclosures, I was advised that once in if the valve can't be repaired they would use their discretion to replace. No discussion on type, and since I was always expecting a repair, I knew nothing about relacements. My impression from the discussions on the procedure is that they expect the repair to last "forever". Apparently my surgeon, Dr. Tyrone David, is one of the best when it comes to the repair I needed so never questioned this course of action. Guess I'll keep my fingers (and toes) crossed that it lasts.

 

[francie12]

RossGurlie

RossGurlie

To RossGurlie-- Sorry your repair didn't work out, but it sounds like you received an excellent "Plan B"! Your input is valuable and refreshing, not just to the younger set, but to everybody! I hope you will continue to share your knowledge and experience with us.

 

[Bryan B]

Everyone needs to keep in mind that repairing the aortic valve is in most cases technically more difficult than repairing either the mitral or tricuspid valve. I don't believe that the ring technique often used on the mitral and tricuspid valve is an option when trying to repair the aortic valve. Having said that, aortic valve repair is much more common today than it was in the past. My surgeon also tried to repair my aortic valve but I ended up with the Ross Procedure. I had endocardits 5 months before my surgery and I had multiple perforations he tried to repair. After restarting my heart he decided that the risk of the repair not being a permanent fix was higher than he knew I would want and he moved forward with the RP.

Personally I would try the ballon valoplasty in hopes that it would buy me some more time for technical advancements.