Teen scheduled for AVR surgery

[Julie]

Hello, my son, age 15 is scheduled for AVR and ascending aorta replacement next month. He has BAV w/ AS, also a dilated ascending aorta. My husband and I are struggling with the decision about the type of valve replacement he should have (Ross procedure or mechanical valve). Most everyone I talk to had AVR as an adult. I would love to talk with anyone who has dealt with this in someone so young. I guess I'm just looking for "been there, done that" experience to help us weigh all the pros and cons.

Julie

 

[Lynlw]

I can't help with the valve choice, my myson has had a few heart surgeries as a teen, if I can help. Where will he be having his surgery?

 

[daveguy14]

I had my first at 18 and received a homograft (human) tissue valve. It lasted around 7 years and about a month ago had it taken out and a mechanical put in. Tissue valves tend not to last as long in younger people, but Ross Procedure is another animal that I'm not too familiar with. Whatever you choose, best of luck to your son. He is young and will bounce back quickly.

 

[Mentu]

Julie, welcome to VR. You are right that most of us are adults but you will get some responses from younger people. If you or your son get to a point where you would like more information about surgery and recovery, most of us can help there. Wishing you both the best.

Larry

 

[skeptic49]

Welcome to VR.org, Julie. Hopefully more of our members will comment soon. Your son will be in my thoughts.

Best wishes,

Jim

 

[drivetopless]

I'm sure that you'll get replies from people with better input/experience that I, but I know that as I've been researching valve types if I were 15, I would want the Ross IF I had access to the best, most experienced surgeon in my region.

 

[Luckyguy17]

Julie,

Just a note to welcome you and your son to the forum.

Am an older adult as well, but to echo Mentu/Larry, let us know if we can help with pre op/post op recovery questions.

all the best, with valve choices and preparation at this time

 

[ALCapshaw2]

Julie,

You may want to look thorugh posts on the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of useful information on those related topics.

I would encourage you to check out potential Surgeons for Experience dealing with and treating BAV and CTD patients.
You need to know that Connective Tissue Disorders and Surgery of the Aorta are another Step up the Ladder of Complexity and that Local / Regional Surgeons typically do NOT have the experience level in those areas as Surgeons at Top Rated Heart Hospitals.

One of our members was in a similar situation as your son, had surgery in YOUR state, and later had to have the Valve Replaced because the Stitching was Failing to hold in that patient's compromised tissue. Dr. William Ryan in the Dallas Area saved that patient's life.

Another Excellent Hospital for complex cases is The Texas Heart Hospital in Houston.
Dr. Kouchoukas in MO is another famous Aorta Surgeon.

'AL Capshaw'

 

[hensylee]

just a welcome to our place. keep in touch so we can go along with you and your beautiful son. Blessins........

 

[Lynlw]

A couple more thoughts, Was your son just diagnosed or have you been following this for years? If you don't mind my asking, is your son going to a Congetial Heart Defect center? They probablywould have the most experience and probablyanswer alot of your question. You might want to get a 2nd opinion at another one of the CHD centers,(one of the largers ones would have alot of expeience with aortas, ross in younger patients ect) especially since you have to make a tough descision.

 

[BarbJean]

Welcome, Julie. My thoughts are with you. We are in the process of scheduling our son, 24, for an aneurysm repair. He will have it done by Dr. Cameron at Johns Hopkins The valve will be repaired and not replaced as of yet. He has Marfan Syndrome, a connective tissue disorder. I will be thinking of you and the hard decisions you are facing. If I can help in any way, let me know. The people on this forum are the most knowledgeable and caring people and can help you out with so much info. It has been a lifesaver for me.

 

[Julie]

Thank you for the welcomes and the replies.

Walter was diagnosed with BAV w/ AS at 6 months old. So we have been following it since then. I am completely at peace with our surgeon and facility. His surgery will be at Arkansas Children's Hospital, which is a CHD center and one of the top in the nation. Our surgeon is supposed to be one of the best in the world. I'm confident in his experience and abilities.

My main concern is which option is better for Walter at his age. I know no one can answer this for me, but your experiences definitely help me. So thank you for responding.

I'm sure I will have more questions as we get closer to surgery. I'm glad to have a place to post them and have them answered.

 

[Lynlw]

Thank you for the welcomes and the replies.

Walter was diagnosed with BAV w/ AS at 6 months old. So we have been following it since then. I am completely at peace with our surgeon and facility. His surgery will be at Arkansas Children's Hospital, which is a CHD center and one of the top in the nation. Our surgeon is supposed to be one of the best in the world. I'm confident in his experience and abilities.

My main concern is which option is better for Walter at his age. I know no one can answer this for me, but your experiences definitely help me. So thank you for responding.

I'm sure I will have more questions as we get closer to surgery. I'm glad to have a place to post them and have them answered.

Didn't Dr. Drumond Webb used to be the surgeon there? That was just so sad.

 

[Julie]

Yes, Dr. Drummond-Webb was at ACH. It was so sad. He was truly talented. One of the world's best. As is Walter's surgeon, Dr. Jaquiss, is the one that was hired to take his place. He's the chief pediatric cardiovascular surgeon now.

 

[malibu82]

sorry to hear about your son i am a 28 year old female and just had a tissue valve put in may 21st. if i were 15 years old, i would have made the same choice. it seemed like the best option for me. i am optimistic about the future of possible trans catheter tissue valve replacements. and the new tissue valves are being chemically treated to last longer then ever before. so maybe by the time i need a replacement, it will mean no open heart surgery!

 

[Jeanie]

Welcome to the forum, and that is reassuring that you have a good surgeon available. The surgeon is probably the best source of info on which valve to use, but the latest and greatest mechanical valves (On-X, and ATS Medical's Open Pivot AP360 to name the only two that I can think of right now) have expected lifespans of 100 years or so. On the other hand, the Ross procedure is supposed to be especially good for younger persons. Good luck and keep us posted!

 

[pikacat]

hi. i was 19 when i had my first OHS. i think the answer as to what is "best" for someone at that age is the decision your child will make. while he may be young, he has ideas about his own body and can make them competently. i felt that no one really listened to my opinions during my first surgery, and it was incredibly frustrating. i feel like he is the one who will live with it, and balancing quality of life vs. a second surgery is a decision he should be a part of. each procedure will have its pros and cons, but i hope that in the end, you keep his decision as "the best" decision. for me, back then, it was mechanical valves. when no one listened to me, that was the worst feeling of all.

 

[rib305]

hi Julie,

When i was 16 i had a homograph valve with 24 years on i still have, i was so ill the choice was my surgeons, its only just showing signs of wear so a replacment valve is looming, i think for me a mechanical valve will be next, the reasons my surgeon went with homograph was i was young, i had endocarditis ,and he was the best in the business here in the uk, im lucky not many people get 20 plus years with a homograph from reading this site, plus availablity is low, for what is worth, my experience with a homograph was right, i was young, i wanted to play football do all the normal stuff without fear, i no mechnical valve benefits- ive studdied all this stuff for the last 20 years, however although warfrin is no big deal, i think for me at 16 it would have been a another distraction, my homograph valve was my surgeons call, and not mine, but it was the right choice, for sure.
On Another note my cardiologist says mechanical valves in the young are excellent choices, for 2 reasons the risks are less for clotting in the young (under 50) and the longevity can be more pridictable to,
if you want my opinion on valve choice they are all good today, but the choice i think come down to lifestyle also, tissue valves pehaps allow a little more freedom to start with( up front)- and at 16 i can only say from my experience for the next 10-15 years thats important consideration- which my surgeon got right, what ever tissue valve you were to choose another surgery will be ahead, at which point like me 24 years on and just 40 mechanical looks the way to go now and doesnt seem restricted at all in life style.
good luck with your choice i hope my insite helps a little

rb

 

[gadoty1]

I had the Ross Procedure when I was 19. At the time I thought it was the best option for me because I wanted to have children and couldn't do that with a mechanical valve because of the coumadin. I thought the Ross would last 20 plus years. I was one of the unlucky ones and it only lasted 8 1/2 years for me. My drs told me it just wasn't a successful surgery. My aortic valve started leaking immediately after my Ross and the Dr's told me it would deteriorate over the next 8-13 years and at that point they told me I would have to get a mechanical valve. They told me if I wanted kids then I had 8 years to have them (being 19 I obviously didnt want to hear that).
So I got married a few years later and had my 2 daughters. In 2008 I was told I had a 5cm aneurysm on my aorta and my valve was leaking moderately to severely. I was given the choice to have a tissue valve or mechanical and I chose an On-X valve. I just didn't want to risk more surgeries if I didn't have to. My second surgery was 8 hours long and most of that was the surgeon trying to get through scar tissue. He said it was a very difficult surgery and I am lucky to have made it through. That being said, I now have to watch my Pulmonary valve. At this point it is fine but my surgeon told me it will eventually wear out too. It may me 20 plus years on that so I can't think about it now.
Dr. Tomas Martin in Shands in Gainesville, FL did my second surgery. He has done a few Ross repair surgeries and he is not a fan of the Ross. He told me it causes more trouble than good a lot of times. Yes, there are people who have it and it works just like it is suppose to. But what about the ones it didn't work on? I am hoping in 20 years when my pulmonary valve wears out I will be able to have it replaced transcath.
It is hard to say what I would have done looking back. If I wasn't a female wanting children I don't think I would have done the Ross. In my opinion if I was in your sons situation I would go with a mechanical valve and be done with it. Having to count down the years throughout my 20's knowing that my valve was deteriorating and that I would need another surgery was torture. It was always in the back of my mind. Once I got my mechanical valve a huge weight was lifted off my shoulders. I felt like I was almost in a depression for 8 1/2 years waiting on another surgery. Don't get me wrong, I am a very positive, happy person and I didn't mope around the whole time. But I always knew it was coming.
Coumadin is not really a big deal. I did have a bleeding issue 2 months ago. I am very active and I tore a muscle in my stomach that caused me to bleed out for a few days before they could get me stable. I was in the hospital for 4 days with that and recovered quickly. I haven't changed my lifestyle on coumadin much. I try not to ride horses or motorcyles or play any contact sports (I probably would still do those things if given the chance, very carefully). But I still exercise almost every day and boat and whatever else I feel like doing. I just pay attention to my body since the bleeding incident and if I notice a painful area that is spreading or getting swollen, then I better get it checked.
I don't want to tell you which valve to pick because any one you choose, even the Ross, will be the right choice. Whatever feels right to you at this time in his life is what you should choose. I posted an update on the On-x study last week on here. I still have hopes that the study will go through quickly. I try to keep my INR on the lower end of my range, which is 2-3. So far I love my On-x valve. I feel better than ever and healthier than ever.

 

[Lynlw]

hi. i was 19 when i had my first OHS. i think the answer as to what is "best" for someone at that age is the decision your child will make. while he may be young, he has ideas about his own body and can make them competently. i felt that no one really listened to my opinions during my first surgery, and it was incredibly frustrating. i feel like he is the one who will live with it, and balancing quality of life vs. a second surgery is a decision he should be a part of. each procedure will have its pros and cons, but i hope that in the end, you keep his decision as "the best" decision. for me, back then, it was mechanical valves. when no one listened to me, that was the worst feeling of all.

I think it is good advice to have your son really involved in the decisions being made at his age. Beside the fact he is the one that has to live with what ever choice is made and has an idea what he rather do at this point in his life, it is really good to really learn what all is involved at making these choices, from who/where to what are the pros and cons with each choice and what you are more willing to live with. I KNOW for ME at least it is very hard and so much easier just to make all of these important decisions as the parent, (plus I'm a bit of a control freak to start with) When Justin was 17 he needed his 4th OHS, there wasn't much choice in valve /conduit, but we met with 3 different centers and eventually went with the surgeon/hospital, he really wanted and thought he would do the best in (which really was MY 2nd choice) it turned out that didn't work out well and kept getting postpond so we ended up going where I wanted (which made be believe even more things work out how they are supposed to) The reasons I had him so involved in all of the discussions/ choices wre, I thought since he was the one that needed to do all the work and recovery it was important he was at a place he had fatih in and really believed hewould do well AND I knew the next time he needed surgery he would probably be an adult and need to know how to make these decisions. He ended up needing surgery MUCH sooner (2 years) and still counts on me to help and listens to my thoughts, but some day (hopefully far off, he will be making these descisions with his wife) so I want him to be as prepared as possible and doesn't feel totaly lost and over whelmed by it all.
I know there are several papers on the Ross and younger people, Justin's surgeon Dr Spray has written at least one. I do know since they started replacing part of the root/aorta and not just the valve, hopefully they will last longer since many of the REDOs are because of annuerisms tissue problems right after the valve.
FWIW all people/guys/young adults are different, but for what it is worth, Justin has had 5 OHS, plus quite a few bad complications, and is now 22. We are now watching his aorta (most of his problems /surgeries are on his right side) but he wouldn't be a candidate for the Ross because of his pulmonary valve. I asked him IF he had a choice right now, between a Ross (or tissue in his case) and Mechanical valve, knowing everything he knows- what would he choose? He said the Ross. Since he has had so many surgeries, I don't think I agree with him and doubt his surgeons would, but Since he was sitting here, I thought I would ask.

PS I don't know of Dr. Jaquiss, but have heard some good things about Arkansas childrens.