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nickd

Active member
Joined
Dec 18, 2008
Messages
27
Location
Fair Lawn, NJ
Hi all,

I am new to the forum and have a few questions. First a little about myself, I am an active 37 year old, who was diagnosed with BAV about 5 or 6 years ago. During that time, my cardiologist has been monitoring me and last month informed me that I have severe regurgitaion and need to have my valve replaced after the holidays. I was refered to and met with Dr. Len Girardi Cornell Medical in NY. I also have an appointment with Dr. Paul Stelzer Mt. Sinai in NY. I am looking in to either a tissue valve or possibly the Ross procedure. I know I have read about problems with the Ross and BAV, and Dr. Girardi thought it would not be wise because of the link between BAV and tissue disorders. I still have not spoken with Dr. Stelzer, meeting him on 12/22/08, one of my questions is has anyone else had the Ross and experienced problems or know someone who has?

Sorry this post was long winded, will try and keep them shorter in the future.

Thanks,

Nick
 
I can't answer you specific questions,but just wanted to welcome you.
Also Cornell and Mt Sinai are great hospitals,you couldn't have chose
better.Best wishes to you-Dina
 
Hey Nick, Welcome to the forum.
Your post is NOT long winded and it may be considered short. Many of us are long winded :)

I can't answer your question but someone will. I just wanted to say "Hi"
 
Welcome to VR, Nick! Glad to have you aboard. I can't address your question in regard to having a Ross, but yes, BAV disease is associated with other disorders. Did you ask your cardiologist about the condition of your aorta? Often the aorta is "dialated" in persons with BAV.

Welcome again and don't be afraid to post often...and don't worry about the length of your post...it was fine.

Jim
 
If a Ross is even an option for you, Dr. Stelzer is the man for the job. I'm not sure that it is an option in your case, but a consult sure wouldn't hurt.
 
Welcome to our wonderful community! Please do a search on the postings of our member StretchL. He isn't on as frequently as before, but he had a Ross and he photographed everything (he is a professional photographer and had a buddy photo his surgery). Whether or not you want to look through those is up to you. BUT, I know he has a website posted somewhere and I'm sure if you emailed him there he would be happy to share his experience with you. Not to mention that his photographs are amazing (I mean the ones he does professionally)!!

Please feel free to ask as many new questions as you want. Make your posts as long as you want (that one was way shorter than what anyone here would consider long!!! ;)) If you start a new thread with each new kind of question, and make your thread title reflect your question, you will likely get more responses.

Welcome! We can help you through this!

Best wishes.

Marguerite
 
Welcome. As you can tell, you are going to all the right places for an opinion. Please be sure to post when you make a decision so we can add you the calendar. We like to see you through to a complete recovery!
 
One way to find the link to "StretchL"'s PhotoJournal is to look him up in the Members Listing. The link is in his signature line.
 
Welcome Nick.

You might want to contact vprnet, a recent member who is from your area, close to you in age, and had his valve replaced by Dr. Girardi.

I believe his surgery was to be preformed on the 19th of December, so you might not hear from him for a few days...
 
Hi Nick ~ Sorry, i have no answers for you either. I just wanted to welcome you to VR. Don't worry about the length of your post ~ it was very short compared to some of mine. Please ask anything you want and someone will come along who can help you.

Again, welcome to the site. We're happy to have you here, but sorry for the reason.

Best wishes,

Dawn-Marie
 
yeah, your post was not long; many here are much more long-winded than you - and I am guilty as charged! Anyway, welcome aboard.

Don't know if anyone mentioned it to you, but the reason the Ross may not work with BAV is the possibility of connective tissue disorders that may be associated with BAV, if you do a search on Marfan's syndrome (both here and at your favourite medical site), that may help you find more info. I certainly don't want to scare you ! Can't help you re wurgeons etc., but I had an aortic valve replaced some 15 months ago, and the surgeon only found out when he took it out that it was bicuspid ! I wnet mechanical, and if you want any more info, please either e-mail me, PM me or post on the site. I do not have Marfans (I am short and fat, Marfan's people are usually tall/thin types) as far as I know.
 
Hello Nick and just want to welcome you to this great family.

zipper2 (DEB)
 
Welcome to the community Nick. I'm glad that you found us & hopefully in communicating with us, your fears & anxieties about OHS will be somewhat lessened. We have all been there before & we're here to help support you thru your crisis.

Good luck to you & Happy Holidays!:)
 
BAV in NYC

BAV in NYC

I know nothing of the Ross Procedure except that Stretch had his done at Beth Israel and is likely to recommend his guy there. I did not consider the Ross option for my BAV because of the greater potential for things to go wrong during or after surgery simply due to the greater complexity -- more stuff is being done.

For aortic valve replacement there's no shortage of excellent units in NYC, and Cornell is at the top of the list, according to my cardiologist. It is associated with the Columbia University hospital network that includes also Presbyterian, Methodist and other hospitals with cutting-edge cardio units, and I think the same group of surgeons is in rotation around that circuit. There is an equivalent hospital network associated with NYU that is excellent for cardio surgery, which is the one I have experience with and can vouch for the quality of. My BAV was replaced with a (Medtronic Mosaic) tissue valve at Bellevue, the NYU-affiliated teaching hospital. My attending surgeon was from the NYU Medical Center just two blocks up 1st Avenue. His name is Jonathan (?) Schwartz, and he was working out of the office of a big pioneer of minimally-invasive techniques (whose name might be Stephen Irvine?) at that place. I didn't go to Cornell because of $$, and I received top-notch care at Bellevue because of the NYU association. (The food was awful.)

<start personal opinion>
This is where I add my $.02 worth that others on this list might disagree with. Valve replacement is something that a really good cardio unit with good depth of experience knows very well how to do. Since it is such a well-known procedure among reputable cardio centers, don't get bogged down in searching for the best surgeon in the world. The other thing I advise BAV people, and you of course need to understand that ANYONE's opinion is based solely on their unique experience and might not apply in your case, is not to allow the prospect of a second surgery down the road determine what you do choose to do now. This is definitely an area where new technical advances are changing the landscape and valve replacement twenty years from now is likely to be a lot easier to undergo and superior in every way to what it is now.

<end personal opinion>

Good luck. I'm sure you'll do very well.
 
dlangton,

I agree with you about the possibility of medical advancements in the future, that is one reason why if the Ross is ruled out or I choose against it, I'm going with a tissue. The second is my job would not allow me to be coumadin. I'm lucky that my health coverage allows me to go into the hands of some of the best surgeons around, so my thought is that if I'm allowed, I'm using them. Dr. Girardi is who my cardiologist wanted me to see, no body else, even after asking about surgeons at Hackensack Medical Center in NJ. Dr. Stelzer did the Ross on a friend, but she is only about a year post-op, and I was looking if someone was longer and ran into problems. She recommended Dr. Stelzer and loves him, that is why I choose him as a second opinion, plus what I have read about him. I have an appointment with Dr. Stelzer in about 2 hours to find out about the Ross, I have alot of questions and know he will be able to answer most of them. Well,I will post what he said tonight. Thanks again to all that replied.

Nick
 
Hi Nick,
Welcome!
My husband, Chris had BAV (age 32) and had the Ross Procedure almost 6 years ago. He is very happy with his choice. The only thing I would add is that they should check the aortic root measurements...it is now recommended that this is replaced/reinforced at time of surgery as those with BAV have shown that the dilation can increase over time.

Chris is happy, well, running his own company and surfing at every chance he can get! Life's good!

Feel free to ask any questions...although I'm sure you will have many questions answered by Dr. Stelzer...he is 'da man for Rossers! If we lived in the US we would have made a bee line straight to him!

Cheers,
Yolanda
 
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