Repair or Replace

[Wade B]

I have a leaky bicuspid aortic valve. I had decided on the Ross procedure and have scheduled a surgical consult in Indianapolis on the 17th. However, I sent my info to Cleveland and they contacted me last week wanting me to considder repair instead of replacement. There is very little data on repair. Does anyone have experience with bicuspid aortic repair? Does anyone have reccomendations?

Thanks,

 

[catwoman]

Did they say why they were recommending a repair rather than a replacement, since this involves a BAV?

Find out how many repairs of leaky BAVs they do each year.

I'm most familiar with MV repairs, so I don't have info on AV repairs, except for stenosis when they might do a valvotomy (sp?).

 

[Wade B]

I'm not sure why, but Dr. Gosta Pettersson is the individual recommending repair. I was told that he doesn't do as many Ross these days. Perhaps because he is doing more repairs. His office admitted that there isn't much data. In 2006 only 11 percent of aortic valve suregeries done at Cleveland Clinic (where Dr. Pettersson prectices) were repairs. They also published that 20 to 25 percent should expect to have a replacement within ten years.

 

[ALCapshaw2]

Mitral Valve Repair is becoming fairly common at Major Heart Hospitals and certainly CC does many of them. I suspect that CC is one of the Leaders in doing Aortic Repair.

Dr. Gosta Pettersson is one of the TOP Surgeons at the TOP Rated Heart Hospital so it might be worth seeing / talking with him.

You can find several links to Dr. Gosta Pettersson by doing a Search on GOOGLE.

 

[pamela]

Hi Wade, If I may be so bold, how old are you?

You also know that if you choose to have a surgeon attempt a repair, that same surgeon will be ready to perform replacement and whatever other procedures that may be evident when they look at your situation in the OR, don't you?

It's all a matter of trust in the surgeon. We need to have faith that our doctor holds his oath sacrosanct and believes in "first, doing no harm". Once you feel that assurance, then you can be easy knowing that all that can be done, will be done in YOUR best interest.

Talk to the man and see if repair is for you. It's better knowing that you've explored every avenue open to you and made a decision based on that, than it is to spend a life of regret over what may have been had you attempted repair.

Re-ops are a fact of bioprosthetic and many homograft valvers' lives, perhaps he's simply delaying the first, to buy time down the road. The big thing is to keep the heart healthy, if a repair works, then there's a gift made of that invaluable commodity.

 

[oscar1113]

Repair 2+ weeks ago

Repair 2+ weeks ago

Hi Wade-
I had my BAV repaired on August 28th at the CC by Dr. Lars Svensson. I needed my ascending aorta replaced as well so I chose Dr. Svensson due to his specialty with issues of the aorta. Dr. Pettersen is very highly regarded and has been recommended by many on this site.

I spoke to DR. Svensson the night before my surgery about your same question. He was very helpful with the current stats on the repair vs. risks of replacement. You should speak directly to the doctor about this. It is true that there is little long-term data on the repair, however, the thoracic surgeons I spoke with (incuding Dr. Svensson) are encouraged by the early outcomes. It is important to note that not all valves can be repaired and the final decision is made during surgery.

For me, 38 years old, I decided the risk of possible resurgery someday was worth it as opposed to taking coumadin. As many on this site will tell you the coumadin is not so bad but there is still a small risk. Either way, its probably worth your time to check it out at Cleveland. These procedures are very common for them.

Doug

 

[Wade B]

I too am 38 years old. I had originally decided on the Ross because, although reoperation was likely, it would probably be the pulmonary homograft eventually needing repleced, which seems to be a much less critical surgery. Now I'm faced with a potential repair and yet another reoperation situation. The most practical thought process now seems to be having the repair with Ross as a backup, then hoping for a lifetime of trouble-free valve function. It a re-op is necessary, then I could consider the ross.

 

[pamela]

That's what I was trying to clarify in your thinking Wade. The other consideration here is the fact that you are congenitally bicuspid. This means that your aortic tissue could be compromised and may develop dilation of the root and/or the artery, it could also mean that the pulmonary valve may be weaker than first thought and fail earlier than the predictions indicate.

Please make certain your Ross is the best alternative. What's wrong with a bioprosthesis of either bovine or porcine tissue? These newer valves hold much hope for many of us and carry the same light risk of ACT that other tissue grafts do and if you face a reop for failure of the homograft, wouldn't a reop for a tissue valve hold the same weight?

I'm sorry if I'm asking questions you've already asked yourself, sometimes we need them phrased in a new voice to be able to see a different angle as well, there may be other younger people out there wondering how you arrived at the Ross as your optimal choice.

Take Heart,
Pamela

 

[DaveM]

Hi Wade-
I am new to this group too. I had 2 aortic valve repairs (valvotomies) when I was a child. One at age 3 and the other at age 13. I am now 36 and am facing AVR within the next few months - years. I am also leaning toward the Ross Procedure. Everyone agrees there is no way a surgeon could repair my valve a 3rd time....to much scar tissue. However, I am very thankful I had my valve repaired during my last surgery vs a mechanical (Ross was not an option then). I have had 23 years of not worrying or thinking about my heart (with the exception of annual visits). There may be some hemodynamic drawbacks to a repair vs a new valve. The repairs on my bicuspid valve improved the stenosis but added to the problem of regurgitation. Because I was still growing at the time, this was an acceptable trade.

 

[ALCapshaw2]

I recall a not too distant post from a member stating something to the effect that one of the Top CC Surgeons (Svennson I think) had changed his position on doing Ross Procedures because of increasing frequency of re-do's (i.e. failures) after less than 10 years.

You may want to so a Search for "Svennson" (or Pettersson) to see if you can locate that post.

Personally, I'd be reluctant to do a Ross given that you have a Bicuspid Aortic Valve. See the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for lots of discussion on the fairly high correlation between BAV and Connective Tissue Disorders (which can lead to weak valves and Aortic Aneurisms).

 

[lcwhitney]

I think that I would have to get a second surgical opinion if I was being told to repair a valve that will have to be replaced st some point whether it has been repaired or not. The rate of blood flow through that valve is too high for an adequate repair in an adult. I personally would not want to have something done that would require a second surgery in the near future. Areplacement would give you about 10-20 years. If I had been told to repair mine I would have gotten another opinion just to re assure myself.
Lettitia

 

[Duff Man]

I recall a not too distant post from a member stating something to the effect that one of the Top CC Surgeons (Svennson I think) had changed his position on doing Ross Procedures because of increasing frequency of re-do's (i.e. failures) after less than 10 years.

I believe Dr. McCarthy isn't doing them now because of that issue. Ross had the repair by McCarthy instead of the replacement and he had to have it replaced within like 5 or 6 years i think...?

Anyway, McCarthy won't do them anymore from what he told me at the consult and he mentioned the limited data and risk of failure because of the BAV disease also effecting the valve leaflets themselves.

From the videos I've seen on the CC site, they're still pushing the repair thing for aneurysms. Svensson is usually the star of the great vessel videos.

I personally am leaning toward either the on-x mechanical valve or bovine pericardial... or if I don't have the luxury to choose I'll go with whatever valve my surgeon wants. Most surgeons are very rigid about the type of valve they'll use. Usually they're not just going to implant whatever valve you, the subject, pick.

 

[Wade B]

Had my surgical consultation with Dr. Brown in Indianapolis yesterday. He is confident that the Ross Procedure is right decision for me. I feel comfortable in his statistics and confidence. When I inquired about repair, he stated that it is common practice to look to repair the valve prior to replacing, but that decision cannot be made until they actually have the chest open and can review the valve. Has anyone been able to have a repair, even though they were expecting a replacement?
Regardless, I'm still going to Cleveland for a consultation with Dr. Pettersson.
Whatever route I take, it looks like I'll be having surgery in late October. I may try to postpone until November so I don't miss any of the World Series.

 

[johnnycake23]

Wade,

If you search my username you can get more details of my history, but this is the gist.

I too had a bicuspid aortic valve that was repaired in September of 1993 by Dr. Cosgrove of the Cleveland Clinic. The repair lasted fourteen years; I had a replacement last November.

Feel free to contact me if you want more information. Waiting till after the World Series makes sense because this year will be historic. My beloved Cubbies will win for the first time in 100 years. It's Gonna Happen.

 

[ponygirlmom]

My doctor was pretty sure he would have to replace my valve, but he did try to repair it first. I think they always look for a way to keep your original valve if possible.

 

[geckley]

I picked a mechanical valve and was ready for it to happen. They repaired mine. The repaired valve didn't hold. So this time I'll have a replacement. I'm an Orioles fan so I could care less about the World Series. I'll take your place. The sooner the beter the wait is driving me NUTZ

 

[Wade B]

They just don't make these decisions easy do they? I almost wish there was only one option so I wouldn't end up second guessing the path I choose. In any case, I am scheduled for a Ross on November 3rd. Dr. John Brown will be performing the procedure. He assured me that they always look to repair first, but that he wouldn't do it unless he was sure it would last ten years. (If that's the case, I could do a ross later). Johnnycake... I looked up some of your threads and it sounds like we're in the same boat, just a few years removed. Your repair lasted quite a while. Are you pleased with the longevity of the repair?

 

[Phyllis]

Wade I put you on the calendar for your Ross procedure on November 3rd. Keeping my fingers crossed that he gets in there and finds he can do a repair, but we have you covered and our prayers and best wishes will be with you on the 3rd.

 

[johnnycake23]

They just don't make these decisions easy do they? I almost wish there was only one option so I wouldn't end up second guessing the path I choose. In any case, I am scheduled for a Ross on November 3rd. Dr. John Brown will be performing the procedure. He assured me that they always look to repair first, but that he wouldn't do it unless he was sure it would last ten years. (If that's the case, I could do a ross later). Johnnycake... I looked up some of your threads and it sounds like we're in the same boat, just a few years removed. Your repair lasted quite a while. Are you pleased with the longevity of the repair?

Wade, yes I was pleased. If you want more details I can send you a private message, or if you'd rather stay public that's fine too. Let me know and I will proceed from there.

 

[Wade B]

Surgery Complete

Surgery Complete

I was scheduled for a Ross procedure one week ago on the 3rd. When I came to after my surgery, Dr. John Brown (Methodist Indianapolis) informed me he was able to repair the aortic valve and is very confident in the repair's durability. When we originally discussed repair, I decided that I'd be content with a repair that would last ten years. Dr. Brown speculates that this repair will last much longer than that. All in all, I am very pleases.
I was discharged on Friday and am currently at home and feel great. I am walking a bit and keeping ahead on my meds. So far, so good!!
Dr. Brown and the entire nursing staff at Methodiest were great.
And, as an added benefit, my wife was able to stay at the Methodist Towers hotel which is connected to the hospital. Her hotel room was less than five minutes from my hotel room!!! Sure made things easy on her to be there to stay with me all week. The rooms were not five star, but who cares when they are so convenient.
Looking forward to my four week checkup!!!