New to this site - BAV awaiting surgery

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CHDDoug

Well, Where to begin.. Long story short, I need your help, guidance, advice whatever you want to call it!!!
Our first born son, was born with Hypoplastic Left Heart and passed away at 2 1/2 months old after the Norwood by Dr. Bove at U of M, that was when I was diagnosed with the BAV..
I am a healthy, active 33 yr old guy, whom was just told by my Cardiologist that I need surgery within the next 3 months. My wife is pregnant with our 3rd child due in 1 month and all of this has hit us like a ton of bricks!
I thought I would have more time, atleast a year to prepare and conduct research!!!
I have a Bi-Cuspid Aortic Valve with severe regurgitation and slight stenosis.
I am leaning toward the Ross Procedure because of my age and lifestyle but would like to hear about your experiences, especially those of you whom have had the Ross Procedure.
I have been reading historical threads on here for several weeks now, trying to learn the lingo...
We have researched several of the great Ross doctors but due to the fact that I will have a one month old child, we are trying to factor in convenience as well as success rates of surgeons.. Our local surgeon at Vanderbilt here in Nashville, has performed 77 of the Ross surgeries and we have been told if we did it here, he would perform the surgery in conjunction with the Pediatric Cardiothoracic surgeon whom performs the Ross on children.
Any help you can provide would be greatly appreciated!!!
Thanks,
Doug

BAV with severe regurgitation - 33 yrs old
 
Welcome Doug! I'm glad you found us. We have some very knowledgeable people here in the areas of the Ross and BAV and I know they'll be a long. The weekends can be a bit slow, so be patient. The one thing I can say is make sure they assess your aorta as well to make sure it isn't dilated. If it is, you'll want that fixed as well, depending on the size.

You have my sympathy on the loss of your son. But it sounds like no matter how short his life was, it was a blessing for you and your family to have him come into your life, in many ways - particularly having to do with your own health.

I wish you the very best!
 
Hi Doug and welcome to the group.
I hope that you can wait until your wife gives birth and has a chance to recuperate for a few weeks before you go in. Don't over exert yourself and don't stress too much....you are young and healthy; a good candidate for OHS. Things will fall into place.:)
 
Welcome to the VR community, Doug. Glad you found us. I had a mitral repair so can't offer any insights on BAV and Ross. Hopefully, those with experience will be along shortly. You're young and healthy so I'm sure you'll do fine. Best wishes and good luck.
 
Welcome, Doug. There are many here who have had the Ross, but one in particular has also posted a site with photos of his Ross procedure:http://stretchphotography.com/avr If you pm Stretchl, I am sure he will be happy to answer any and all questions.
 
Welcome Doug,

I am not a Ross patient but have followed many here on their stories. Since the Ross is not all that common yet, it seems to me that a surgeon who has done 77 has some significant experience. I would check on his success rate as well just to be thorough.

There is a lot to be said about staying close to home especially considering your family situation. It sounds like the folks at Vanderbilt have thier acts and procedures down so I would not hesitate to stick close to home.

I know there are a couple folks here who have had their surgeries in Nashville so perhaps they will chime in as well.

Let us know how we can help further.
 
Hi Doug.

I researched the Ross procedure throughly before my replacement, and actually intended to have it performed by Dr. Paul Stelzer (Beth Israel) before fate intervened, and I received a bovine valve instead.

I hate to put a damper on your hopes, but I believe that although a Ross can be performed on a patient suffering from regurgitation, most Ross surgeons feel the outcome is not nearly as good as though who have replacement due to aortic stenosis. The reason is related to your bicuspid valve and the connective tissue disorders that often accompany it.
You might consider contacting Dr. Stelzer (I have his address) and let him take a look at your echos and give his opinion on having a good outcome.

Having said that, I believe that Vanderbilt is a good hospital and you will do well having replacement there. And I'm also thinking that another member,
BryanB had the Ross performed at Vanderbilt. You might check his threads.

Good luck and keep asking questions!
 
Thanks!!!

Thanks!!!

Well, I must confess, this is Doug's wife responding, as he is away from the computer at this time..
Thank you all for your warm welcome and references thus far..
We are learning of more questions we need to ask already, and what was exactly what we were hoping to get back from everyone.
The surgeon at Vanderbilt stated he was a good candidate for the Ross procedure, but as we read more on this site we begin to question that.
We have no idea if his aortic root is dilated or not..
We do know the surgeon has had to 'fix' several Ross procedures performed by other doctors here in Nashville, in fact he did one just the other day.
Mary, if you don't mind me asking, how old were you when you had your Bovine valve surgery? What statistics were you given with the Bovine? How many years, before replacement?

Thanks again for your input and responses!!!!
Doug
 
Hi Doug's wife!

I was 52, received the Model 3000 Magna Perimount, and Dr. Kouchoukos (my surgeon) said he would guarantee 12 years. Of course, I hope I get many more than that, but I am ok with 12.
And honestly, I have never regretted my decision.:)
 
Welcome Doug and your wife too.

I personally can not answer your questions, but please ask away.

Please let me express my deepest sympathy on your loss, but wish you all the best for the future.
 
I sure understand the stress you guys must be going through. I found out in late April '06 that it was time for my surgery, and my wife was due with our first child 6 weeks later. Oh man.....talk about freaking out. Luckily, I was able to put the surgery off until August. I think that helped a lot, since the baby was almost 3 months old at the time. Maybe Doug's surgery could be put off a month or two?

I had BAV with severe regurgitation. My root was very mildly dilated. I received the Ross Procedure in Dallas. I think I made the right decision, and am doing great. So, it is possible. I'd second the suggestion of having a consult with Dr. Stelzer.

Please feel free to send me a Private message anytime with specific questions you may have about my experience with the Ross and having a new baby in the house.

Lee
 
Hello and welcome to this great site.

Sorry to hear about your son and all that you have had to go through...you've certainly been through (and our still going through) some tough times.
My husband had a BAV and chose the Ross Procedure at age 32 and has been very happy with the results. He did initially have some issues with an immune response on the donor valve, but this has stablised now. A close friend of ours also had the Ross Procedure and has been happy with his choice as well. The Ross Procedure can be a more technically difficult surgeon so I would choose one that has significant experience in this area.

We have had our third baby last year and life couldn't be better!

Hugs,

Yolanda
 
Thanks...

Thanks...

All that have posted a response, we really appreciate it! This site has been a huge help!

Keep them coming.

Thanks again,
Doug (BAV) and Heather (wife)
 
Please see www.bicuspidfoundation.com if you haven't already.

With respect to the Ross procedure, there are many pros and cons that are well documented and discussed in the threads here. I'm not sure who in this forum has had the "most run time" with this procedure without complications, but I do know there are several users who have had to undergo surgery again due to complications that arose after having a Ross procedure. With BAV, there are indeed significant risks associated with this procedure resulting from BAV connective tissue disorder and the potential aneurysmal dilatation of the ascending aorta that may occur later. Most definitely, a CT scan should be performed to get a precise measurement of your entire aorta....I suggest a 64 slice CT scan for better accuracy. At a minimum, this will serve as a good baseline measurement to monitor for future enlargement of the aorta.
With respect to your choice of surgeon (and this is so very important), find one who has performed thousands of valve replacement and aortic surgeries, including the ROSS procedure. I have no personal knowledge of your surgeons in your area, but I would not feel comfortable with someone who has performed only 77 of these procedures (regardless of his/her success rate thus far).
All my best,
MrP
 
Welcome Doug,

Out of curiosity, which (RP) surgeon are you talking with in Nashville?

"Bryan B" had an RP and I 'think' it was done in Nashville but don't remember the details.

Dr. Paul Stelzer in NY is one of the "Best of the Best" from what I read. I'm thinking I saw that he has done over 400 Ross Procedures. "StretchL" posted a LOT about his search for an RP surgeon and selected Dr. Stelzer as his best choice. I 'think' StretchL also had a BAV. It would be good to review his pre-surgery posts detailing his concerns and search process.

Dr. Ryan from Texas also comes to mind as an RP specialist.

Keep up your research / interviews until you find someone you are comfortable with based on Experience and Results.

'AL Capshaw'
 
Thanks....

Thanks....

Al,

Yes we are contacting Dr. Paul this week and we are also considering Dr. Ryan... We were hoping to find someone at Cleveland Clinic like Dr. Pettersson but not sure what his RP numbers are... I will be researching them this week..
The surgeon we have spoken with in Nashville prefers not to do the RP as he has had to do alot of fixes on the earlier RP patients performed by the 'not so skilled' RP surgeons who tried to learn the procedure in the 90's and failed..
He, Dr. Patracek, would perform the surgery in conjunction with the pediatric surgeon here at Vandy, Dr. Bishell.
We are leaning away from this option, as they just don't have the expertise we are looking for in numbers. He has done alot of repairs, so that is good to know and would do follow-up care here locally, which is also a big help.
He practiced at Johns Hopkins but has moved around over the past several years..
As for Dr. Stelzer, we have seen his RP video, and Stretch's experience and are pleased with his approach, bedside manner and success rates..
He is no longer at Beth Israel though, he is now at Mount Sinai in NYC as of early 2007...
Curious as to why he made the move after 11 years at Beth Israel but he does have a co- director title now, so this may have alot to do with it!!

Al, you seem to be very knowledgeable about many aspects of the heart, surgeries, valves, etc and I truly appreciate your feedback!

Heart Hugs,
Heather Ann - Doug's wife
 
Where is Brian B?????

Where is Brian B?????

Al,

On a side note, Brian B does not appear to be in the Members list anymore...
Does anyone know how to reach him?

Thanks,
Heather Ann
 
Hi Heather Ann - He posted just a couple of days ago or so. Maybe try taking the space out of his name? Welcome to the site, by the way; glad you found it. Hope all goes well for your husband.

Leave the space--I just checked and he's still active: Bryan B

[Edit - Another fairly recent Ross procedure recipient, in case he hasn't been mentioned, is rckcrzy1 and his name is Adam. I think he's in Texas.]
 
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