New to this site - BAV awaiting surgery

[Mary]

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

Ann,
I would say Dr. Stelzer's move probably says more about Beth Israel than anything else.
The top surgeon's can demand everything they need (in terms of the surgical team, facilities, etc.) and if one hospital won't, or can't, provide it, they will move on.
I think I've decided that although hospital choice is a component, the cardiothoracic surgeon, and his team, are really what are important in valve replacement.

 

[Lynlw]

Ann,
I would say Dr. Stelzer's move probably says more about Beth Israel than anything else.
The top surgeon's can demand everything they need (in terms of the surgical team, facilities, etc.) and if one hospital won't, or can't, provide it, they will move on.
I think I've decided that although hospital choice is a component, the cardiothoracic surgeon, and his team, are really what are important in valve replacement.

I totally agree.

 

[CHDDoug]

Thanks!!!

Thanks!!!

Mary and Lyn,

I agree, just curious as it took me several hours to find him last night googling everything on earth!!!

Adam - wow!!! I think my husband is a true bicuspid too but we need to confirm that. So glad that you are feeling/doing well and have lost so much weight..
We have gotten alot of feedback about Dr. Ryan, so I am sure he will be one of the 2-3 opinons we get..
Now we wait and get the current doctors here at Vandy to send all of Doug's info to these guys and see how long it takes to make this happen!!!
Any suggestions on how to get the right info to the other surgeons?

Susan - I spelled Bryan with a an 'I' my mistake, thanks!!!

Boy- I thought the TCHIN network I was on with our son was addictive,VR is now my new addiction!!

You guys are great!!!!!
Heart Hugs,
Heather Ann

 

[Lynlw]

Mary and Lyn,

I agree, just curious as it took me several hours to find him last night googling everything on earth!!!

Adam - wow!!! I think my husband is a true bicuspid too but we need to confirm that. So glad that you are feeling/doing well and have lost so much weight..
We have gotten alot of feedback about Dr. Ryan, so I am sure he will be one of the 2-3 opinons we get..
Now we wait and get the current doctors here at Vandy to send all of Doug's info to these guys and see how long it takes to make this happen!!!
Any suggestions on how to get the right info to the other surgeons?

Susan - I spelled Bryan with a an 'I' my mistake, thanks!!!

Boy- I thought the TCHIN network I was on with our son was addictive,VR is now my new addiction!!

You guys are great!!!!!
Heart Hugs,
Heather Ann

Hi Heather, I belong to THCIN too, Justin is 19 so I've belonged since we got computers lol.
Contact the other surgeons office that you want 2nd ops from, ask what info they need. Usually they need cdsor dvds of echos' mris, caths ect, then call where you go, tell them you need the records sent and ask for the HIPPA forms and what else you need to do to get the records sent, many need you to make the request in writing. IF you live close I find it easier/faster to just go fill out the forms in person, then you can either ask them to send everything OR send everything yourself.

 

[CHDDoug]

Dr. Stelzer just called CHDDoug

Dr. Stelzer just called CHDDoug

Wow!!!
Dr. Stelzer just called my husband, BAV Doug, after he emailed him this morning.
My husband is ecstatic after speaking to him and they spoke for 45 minutes about the Ross.
He is going to review Doug's medical records as soon as he receives them.
Doug is really excited about their conversation and feels so much better now with his choices...Said he was the most compassionate professional of his caliber that he has ever spoke with!
Thank y'all SO MUCH for your guidance and we will keep you posted!
We have also selected to get a 2nd opinion from Dr. Ryan too..

Heart Hugs,
Heather Ann - Doug's wife

 

[Mary]

Wow!!!
Dr. Stelzer just called my husband, BAV Doug, after he emailed him this morning.
My husband is ecstatic after speaking to him and they spoke for 45 minutes about the Ross.
He is going to review Doug's medical records as soon as he receives them.
Doug is really excited about their conversation and feels so much better now with his choices...Said he was the most compassionate professional of his caliber that he has ever spoke with!
Thank y'all SO MUCH for your guidance and we will keep you posted!
We have also selected to get a 2nd opinion from Dr. Ryan too..

Heart Hugs,
Heather Ann - Doug's wife

Dr. Stelzer is an amazing man!
I received several phone calls from him, and I was so appreciative of the amount of time he spent talking to me.
He treats all his patients--even those who are only potential ones--in the same manner.
I'm happy for you all.

 

[CHDDoug]

Please refresh my pregnant memory!!!

Please refresh my pregnant memory!!!

Mary,

I can't remember, so much to digest in the past 72 hours. Did you go with Dr. Stelzer?

Heather Ann

 

[Ross4BAV]

Hello Doug,
I am new to this board as well but had a very similar experience when I learned that I needed to have my bicuspid aortic valve replaced (which was a complete surprise). I am 52, but very active and had no symptoms at all. I did a lot of research and found a great surgeon in Los Angeles at Cedars Sainai medical center. Dr Trento has done well over 100 Ross procedures and many more valve replacements. He informed me that you cannot know for sure if a patient is a candidate for a Ross procedure until you open them up. I am not sure what he looks for (dimentions of your pulminary valve for sure), but his success rate is very high. I was prepared to go bovine, but was pleased to wake up and learn that the Ross was a success. My recovery was very smooth. I was walking on day 2 and really enjoyed having 6 weeks off after working for 30+ years. I would spend my time doing the right research, but would recommend you do not waste time worrying about this as odds are strongly in your favor that this will go smoothly. Best of luck to you.

 

[marky]

I just want to say Welcome! you are certainly in the right place for encouragement, support and advice!

 

[thenewmarket]

Reading your initial post made tears come to my eyes. I am so sorry about the loss of your child. Please be encouraged that many others before you have walked this road. How wonderful that you have already made contact with EXCELLENT surgeons. You will make the right decisions!

My husband recently had his bicuspid aortic valve and ascending aortic aneurysm repaired. He is 51 and his aneurysm was found through a routine chest x-ray. This is also when we learned about the bicuspid valve. No one in his family has every been diagnosed and there is no history of sudden deaths. We have two daughters and they are in the process of being tested. We are fellow Tennesseans and we wish you and your family the very, very best!

 

[CHDDoug]

Thenewmarket,

Thanks!!!
We are definately not strangers of the CHD world!
We have had to have each child, after Conner's birth and passing, checked in-utero at 23 weeks to determine if we would be facing more CHD issues, so far our 2nd born, Chloe, 24 months old has a HH and Callie our 35 weeks in utero baby girl is so far HH but one will never know until the after birth echo is performed. We do everything right now at Vanderbilt with Dr. Michael Liske, an amazing Peds. Cardiologist.
If you are looking for someone good to do a thorough echo of your daughter's, he is your man!!! What amazing bedside manner and he is in his late 30's - early 40's with 4 kids of his own..
Doug's family has no bicuspid history either as everyone on both sides of our family ran out to get echo's once our son passed away.
The professionals say there is a link to BAV and left side heart defects.
I pray that both of your girls, which are healthier by nature than boys, are completely fine!
We are thankful God has blessed us with 2 more girls, as we would be facing some very grim statistics if they were boys...

Ross4BAV - We do have a back-up plan just in case my husband is not a candidate, however we have already met with one surgeon here whom stated he was a candidate after reviewing the MRI / MRA and echo's but once again, until they open him open, they won't know for sure..
We heard Dr. Trento was good from Adam Pick but we are trying to stay a little closer to home than CA, even though NYC isn't a whole lot closer, but my twin brother's live there and could help out; a place to stay afterward discharge, etc..Thanks for the friendly advice and words of encouragement!

 

[dcpickle]

Doug and Heather Ann,
Dr . Stelzer did my Ross 3 years ago. I have done great since then. Dr. Stelzer looked at my last echo and said since it looked so good this long after surgery, I had a great chance for a "good long-term benefit" which I think means a long time with no re-op! Dr. Stelzer hung the moon. Everyone who comes in contact with him feels the same way. I'm glad you talked with him, to get his advice, whatever you ultimately decide.

I also had a 2-leaflet true bicuspid valve, and Dr. Stelzer was able to relocate the coronary arteries to accomodate the replacement valve. I didn't know beforehand about this, but I'm glad I went to Dr. Stelzer because my local Ross surgeon (In Georgia where I lived at the time) mentioned that if I had a true bicuspid valve he would not have attempted the Ross because of the difficulty in re-implanting the coronary arteries

Discussions about valve type bring out lots of emotions around here, but thankfully all the options are good, and they all save your life!