YEAH!! I finially found you all!!!

[FauxClaud]

Wow!! I am so glad I finially found the place that everyone is at!! I have been looking for like two weeks now for an active board.
My son, Garin, will be facing AVR probably the week after his 14h birthday...the end of July.
He was born with a murmer, diagnoisised with Aortic Stenosis at age two and monitored thoughout. ..perfectly healthy in all other ways.
So we have a Bi-cuspid valve with no restrictions..
Went from mild to moderate to severe based on echos during check-ups over the past 12 years Never had any "symptoms", no fainting, etc...he has always been self restricting regarding to physical activity until just this past month. Now he's "off" as his heart has begun to show physical signs of the stensois. He has begun to enlarge. The valve appears to behave more like a unicuspid now..and he has serious turbulence. he WILL have AVR, it's just which kind...
Dr. Survo Sett of The Maria Fareri's Children's Hospital at Westchester Medical Center in NY is our surgeon.
He would like to replace with a St Jude valve. Also part of Garin's Aorta as it is now 5 ( insert the medical terminology you use to measure them here).
We were also told to think about the Ross procedure in order to keep him off the Coumindin as long as possible.
Basically, it seems like we have to make the final decision.
My concerns:
I HATE the thought of making my child face a life time of Coumidin. I have been told by folks who live it ( and would be very interested in hearing all your opnions): their levels are always off, they have to be very careful with bruising ( which will be a major concern with a 14 year old boy whose one love in life is skatebaording), gym is out, weight gain in, it effects other organs over long term use.
Now I know the Ross is a bigger, more difficult surgery and the homograft will wear out eventually....BUT if it can get him though some normal teenage years, and most of college with out drugs? I mean, say we get ten years out of a homograft.he'll be 24. By that time is it conceivable that they will be cloning valves?? Or have some better answer than coumidin? Is that a chance worth taking?? I am one of those quality of life people..so making a normal boy become a borderline hemopheliac ( spell??) is not something I want to do if there is another choice. Keeping this cild off a skateboard will not only break his heart, but make him almost too miserable to deal with!!
So....what's a mom to do!!!!
Help!

 

[perrybucsdad]

First off Welcome! I had an AVR as well with almost the same types of problems your son is having.

First off, Coumadin is not that bad to live with. I'm on it, and it's no big deal. Am I constaly off my levels... absolutely not. In fact, the last dose change I had was over a year ago. Unfortunatly, some folks who have the Ross will have to be on coumadin too. Some are on it for a short period of time, and I have heard from others who have been on it for a number of years for various different reasons.

The one thing I am glad for is that I know I will most likely not have to have surgery again for my valve. With the Ross, he will most likely have to have surgery again some point down the road (esp since he is young).

With regards to brusing, etc. I've never had a problem. I'm 36 years old and had my AVR done when I was 28. In that time I have done all kinds of stupid things (roller blading w/out any protection, playing tackle football with friends, rapelling and rock climbing with a few spills, skiing, running, go cart raceing) and have never had a problem with brusing.

As far as testing goes, I do home testing which makes things very easy and quick. I have gotten to the point where I know how to adjust my diet to stay in range. Most of the time, I don't even need to adjust that much. Just a salad here or not a salad there and that keeps me in range. It's all about consistancy, not binge eating. If you can stay fairly consistant with your diet he'll be ok.

Unfortunatly, there is no correct answer on which valve to get. It comesdown to what your gut tells you.

Best of luck with your decision.

 

[francie12]

We found out about our 13 yr. old son's bicuspid AV a year ago. He has moderate regurg, with LV at 5.4 and ascending aorta at 3.25. So we are still in monitoring and research mode. I was interested that your drs. did not have the Ross procedure necessarily as a first choice. It was explained to us that the Ross was especially valuable in a growing young person because the transferred pulmonary valve will contuinue to grow with him. However, because of the connective tissue difficulties that possibly (probably?) come with a bicuspid AV and dilated aorta, some surgeons are reluctant to do the Ross. Are your drs. thinking this way? Many very valuable posts have been made on this subject by ARLYSS on this site. You can find them using the search mode or all posts by ARLYSS. You sound like a great mom. Our thoughts and prayers will be with you and your son.

Jane and Matt

 

[ALCapshaw2]

Glad you found us!

Yes, for young patients, the ROSS procedure can be a wonderful solution. I highly recommend that you seek a consultation with a SURGEON who has LOTS of experience performing the ROSS procedure (most do NOT so you need to find the right specialist). Several of our members have had the ROSS procedure including PapaHappyStar who did considerable research on the subject and went to NY for the procedure. Look him up on the Members List.

The condition of his aorta may be a factor in which case a mechanical valve may be the best solution. I would look at one of the new (third generation) type mechanical valves such as the On-X (see their website) or St. Jude Regent or ATS.

You can use the SEARCH feature on VR.com to find posts on each of those valves / topics. I think you will find more information than you have time to digest but once you get a better 'feel' for the subject, feel free to ask more detailed questions.

'AL Capshaw'

 

[PapaHappyStar]

Hi,

I had the Ross procedure done at the Columbia Presbyterian hospital by Jan Quaegebeur last december -- I have had a good result so far -- the new aortic valve looks ok, the pulmonary homograft has mild leakage and trivial stenosis but I have been told this sort of thing is expected with a pulmonary homograft and the cardiologist expects this situation to remain stable.

At 14 your young man has a few years of growth left and he would benefit even more from a Ross than someone like me ( 32 at surgery ) -- the new aortic valve grows in place more readily being ones own viable tissue, the RP is a bigger risk in terms of reops than a mechanical valve but it is the most benign ( to the body in terms of side effects -- clotting, turbulence, and lack of adaptability ) long term choice in the aortic position if it lasts. A tissue valve in the aortic position would probably not last very long given the wear and tear at his age, the pulmonary position is less taxing to tissue valves because of the lower pressure needed on the right side of the heart to circulate blood to the lungs.

This is my understanding -- there are elevated risks for some people and caveats to the RP -- you should get your son evaluated by a cardiologist who understands this procedure and works closely with a surgeon who performs many of these in children and young adults.

My cardiologist ( Marlon Rosenbaum ) is the head of the adult congenital heart disease center at columbia -- there are some other good pediatric cardiologists at CPMC and Dr. Quaegebeur is one of the best pediatric heart surgeons around, if the NYP is a possibility for you look these people up...

All the best,
Burair

 

[Emma]

Hi

Hi

Hiya,
I'm mum to Chloe, who's 5. She has a mitral valve replacement when she was 18 months old and so obviously has always lived on warfarin,and always will do.
Sorry to hear your son is heading for replacement and I understand your worries about warfarin/coumadin but it really is not as bad as it gets made out to be.
If you'd like to chat feel free to PM me and maybe I can explain a bit more about our experience with replacement valves and living with them and put your mind at rest a little perhaps?

You've found the right site to help you though - its been excellent for me - soooo helpful and such lovely people!

Love Emma
xxx

 

[Curtsmum]

My son is due to have his valve replaced but we dont find out when until september.I cant help with the ross procedure because my son Curtis is having his mitral valve replaced and as far as i can tell,he dosnt qualify for it.I understand how you feel about warfarin-coumadin as my son is only seven.It terrifies me but people here say its not as bad has it sounds and they know from experience.Hope every thing goes well for Garin, best wishes to you and your family. Paula x

 

[tobagotwo]

Welcome to VR.com, fauxclaud.

My two cents...

Regarding the Ross Procedure, it is important for the surgeon to be well experienced both the Ross Procedure itself and in determining tissue quality and likelihood of future tissue problems to be able to make the decision (it would have to be made during the operation). You would want someone with a great deal of Ross experience.

The reason for concern about tissue quality is that a certain percentage of bicuspid valve owners also have connective tissue problems, sometimes having mixomatous (fibrous or weakened) tissue in the valves themselves, making them unsuitable for reuse (they use your pulmonary valve to replace your aortic valve). The aortic aneurism and root growth can be a part of this type of syndrome, too, but are not always.

If it can be done, a successful Ross procedure can be the best of all surgical outcomes. There have been a few here who have had to be redone later with mechanicals, but not many.


As far as Coumadin, it seems to be a very personal experience. Many people sail through its use, but there are others who have trouble with keeping a stable INR or experience other difficulties, including with medical procedures that are complicated by its use. There have been some studies showing that genetics can be involved in how someone's body deals with warfarin, so someday, we may know who's a good candidate.

Still, there is no question that Coumadin is doable, and most people do pretty well with it. And, as long as he's wearing his helmet (elbow and knee pads would be nice, too), I don't think he would be prevented from skateboarding. (Extreme skateboarding, yes, but not the kind that most kids like to do.)


As far as the St. Jude mechanical, the surgeon may be choosing it because some St. Jude valves are prebuilt into dacron velour sleeves as an all-in-one replacement that is easier and faster for the surgeon, and because it has a long and comforting track record.

However, there is another mechanical valve, the On-X valve, that is in trials for aspirin-only anticoagulation therapy (ACT). Link: http://www.onxvalves.com/Med_Aspirin_Study.asp There is a possibility that this valve may not require warfarin (Coumadin) for anticoagulation in a five to ten years. You might want to see if you can find a surgeon willing to use that valve. It is an excellent valve in its own right, and is considered to be at least as good as the St. Jude valve, dacron sleeves aside.

However, the St. Jude, the Sorin, the On-X, and several other top contenders are all excellent valves, and you should feel confident with any of them that your son might wind up with.

Best wishes,

 

[bvdr]

Welcome to our online family! I remember the feeling of finding the site and suddenly not feeling alone anymore. It is great to have you with us.

 

[FauxClaud]

Thank you all!!

Thank you all!!

I have been reading here all day and I feel so much better already..just having the knowlwdge of WHAT to ask the docs on the next "meeting".

Garin is having an MRI on monday and they will get all his measurments then. Based on that info, we are to talk again.

My brother in law is a malpratice lawyer, so he has sent over some names of folks for a second opnion.

Has anyone been at Westchester Med? We are in the Maria Feria Children's Hospital which is a lovely new facility, but it's gonna take more than a big fishtank in the lobby to make me feel good about this all. We live only 90 minutes form NYC proper, so there could be other options if necessary.

I found one review that was stellar on the surgeon, but would like to know how you find out more of the stats on both the hospital and docs.

I am feeling a bit relieved to hear all the "bad" things you all do on Coumidin!!

Maybe its not so bad. Garin and I were talking today, and he, of course, wants the "Rosses". The thought of more surgery means nothing as it's just that..a thought. I tried to explain to him that what happens if after he has gone though it, he never wnats to ever do that again..and we know with the Ross it's pretty common for the pulminary.

I'm not sure why it was not the first choice of our surgeon. I was thinking that it was because he is mostly grown...there was talk of getting him the largest vavle possible for him since he is three inches bigger than my 5'3" now..and growing every day! We only expect him at most to get another 6 inches taller, so perhaps the growth thing is not a concern? Sometimes I feel I am just guessing, but at least now the real questions are forming.
I just want to say again...I am SO happy to have found this place!!

Thank you all.

 

[PapaHappyStar]

Maybe its not so bad. Garin and I were talking today, and he, of course, wants the "Rosses". The thought of more surgery means nothing as it's just that..a thought. I tried to explain to him that what happens if after he has gone though it, he never wnats to ever do that again..and we know with the Ross it's pretty common for the pulminary.

I'm not sure why it was not the first choice of our surgeon. I was thinking that it was because he is mostly grown...there was talk of getting him the largest vavle possible for him since he is three inches bigger than my 5'3" now..and growing every day! We only expect him at most to get another 6 inches taller, so perhaps the growth thing is not a concern? Sometimes I feel I am just guessing, but at least now the real questions are forming.

The Ross Procedure is not a common ( or easy ) surgery for aortic valve replacement, it takes a good congenital heart surgeon to do it well -- and since it is rarely done ( partly because most AVR's are done for people 50+ and the Ross is not the best option in most cases then ) it is rarely taught to surgeons in their residencies. Surgeons are often wary of things they are not themselves comfortable with...

At 14 a mechanical valve in the aortic position wont last his lifetime either ( there is wear and tear at the sutures and since the valve is an artificial object there is looser binding at the conjunction ). It is a very good idea to get your son evaluated at a major heart hospital connected to a larger research university -- Weill-Cornell, Columbia Presbyterian, Beth-Israel ( Albert Einstein College of Medicine ) are three I know in NYC. Complex heart surgery involving the aorta -- possibly needing circulatory arrest -- requires a high tech OR and an experienced surgical team. Choose also a hospital equipped to deal with possible complications of any type in emergency situations.

Regards,
Burair

 

[tobagotwo]

I agree with Burair about the value of going to a larger institution with more experience in these types of surgeries and the related tissue possibilities. As far as your surgeon not "advertising" the Ross, you will almost never get an opinion to seek out the Ross Procedure from a surgeon who does not work in a hospital that performs them often. Whether or not the Ross becomes the answer, it is a good idea to have very experienced people looking at him, including a surgeon experienced with the Ross.

Your son is still very young, his situation may still be evolving, and this affects his entire future. I would want an opinion from someone who is heavily experienced in tissue, to understand if this is really all of what is likely for him, especially as far as his arteries.

I would suggest considering the Cleveland Clinic, or Boston's Brigham and Women's as possibilities as well as those places already mentioned. Also, be aware that there is a world-famous Ross surgeon at Columbia.

Pulmonary valve surgery is not considered as critical or difficult as aortic or mitral surgery, although it certainly is nothing to sneeze at. Also, you should realize that many of us have intentionally opted for multiple aortic surgeries for the daily freedoms we trade for it.

I also agree that it's unlikely that a mechanical valve would mean no more surgeries for your son. While the valves themselves do not wear out, other issues in the body frequently occur to cause them to have to be replaced eventually. At your son's age, I would not base my decision on the idea that he will have no other valve surgeries with a mechanical valve, because that is unlikely to be true.

Best wishes,

 

[cocoalab]

Hello, I just found this sight through an online friend and when I saw your post knew I had to reply. I have a 15 year old son who will be having his valve replaced next week. Yikes! This will be his second replacement as he received his first at 6 yrs. Andrew has a St judes and has been on Coumadin these past almost 9 years. It hasn't been horrible but it does put some limits on what he can do. Andrew has a bit of a complex heart and it will probably slow him down anyways but if I had a choice I would look seriously at the Ross proceedure.

This time around we are hoping for a tissue valve. His Surgeon, Dr Mavroudis from Children's Memeorial did not specify what kind of a tissue valve but I am hopeful we can give him aleast 8 to 10 years with out the coumadin. Andrew was pretty steady the first few years but these last couple have been rollercoaster like. His cardiologist figures it is just because he is a teenager and they can be inconsistant about diet and everything.

If it is decided your son would be better off with the mechanical I would suggest you try to get a home monitoring system as soon as they will allow it. It would just be much easier. Normally you will only have to test once a month but in our experience it is sometimes been every couple of weeks when he is way off and even in a week. We never did get one even though I had asked for one. Now hopefully we won't need to test after a couple of months. Andrew has a carepage that we are keeping his updates on so feel free to check up on his progress at carepages.com. His carepagename is Andrewjosephspage. Feel free to email me if you want to ask anything or just chat.

Cocoalab

Wow!! I am so glad I finially found the place that everyone is at!! I have been looking for like two weeks now for an active board.
My son, Garin, will be facing AVR probably the week after his 14h birthday...the end of July.
He was born with a murmer, diagnoisised with Aortic Stenosis at age two and monitored thoughout. ..perfectly healthy in all other ways.
So we have a Bi-cuspid valve with no restrictions..
Went from mild to moderate to severe based on echos during check-ups over the past 12 years Never had any "symptoms", no fainting, etc...he has always been self restricting regarding to physical activity until just this past month. Now he's "off" as his heart has begun to show physical signs of the stensois. He has begun to enlarge. The valve appears to behave more like a unicuspid now..and he has serious turbulence. he WILL have AVR, it's just which kind...
Dr. Survo Sett of The Maria Fareri's Children's Hospital at Westchester Medical Center in NY is our surgeon.
He would like to replace with a St Jude valve. Also part of Garin's Aorta as it is now 5 ( insert the medical terminology you use to measure them here).
We were also told to think about the Ross procedure in order to keep him off the Coumindin as long as possible.
Basically, it seems like we have to make the final decision.
My concerns:
I HATE the thought of making my child face a life time of Coumidin. I have been told by folks who live it ( and would be very interested in hearing all your opnions): their levels are always off, they have to be very careful with bruising ( which will be a major concern with a 14 year old boy whose one love in life is skatebaording), gym is out, weight gain in, it effects other organs over long term use.
Now I know the Ross is a bigger, more difficult surgery and the homograft will wear out eventually....BUT if it can get him though some normal teenage years, and most of college with out drugs? I mean, say we get ten years out of a homograft.he'll be 24. By that time is it conceivable that they will be cloning valves?? Or have some better answer than coumidin? Is that a chance worth taking?? I am one of those quality of life people..so making a normal boy become a borderline hemopheliac ( spell??) is not something I want to do if there is another choice. Keeping this cild off a skateboard will not only break his heart, but make him almost too miserable to deal with!!
So....what's a mom to do!!!!
Help!

 

[perrybucsdad]

Dr Paul Stelzer

Dr Paul Stelzer

If he is really set on the Ross, then I guess the doc I would see is the renowned Dr Paul Stelzer at Beth Israel Medical Center in New York City. This guy is one of the masters at the art of doing the Ross and I would really trust him.

There is also a very good listing of all the physicians that are qualified at the Ross at http://www.rossregistry.com/PhysicianDirectory.asp

Best of luck in what ever you decide.

- John

 

[Ashley]

Is anyone aware of surgeons in Toronto, Canada who perform the Ross? I checked out the registry and only see surgeons in Quebec, but none in Ontario. I am pretty sure they are performing this surgery in Toronto (at Sick Kid's for one). Any idea??

 

[francie12]

Just wanted to mention that at this time Dr. Stelzer does not take pediatric cases. His reputation is so fantastic though, that we (and I'm sure many others) are hoping to hold out until Matt is old to have him for his surgeon. I've also read many great things about Burair's Dr. Quaegebeur. He's on our short list even though we live so far away. You are so lucky to be close to these world class surgeons. We're rooting for you. I'm so glad you found this site with all its kind and incredibly knowlegable people. It has been the difference between total ignorance and growing understanding for me! All the best.

 

[francie12]

Ashley--I'm pretty sure that Dr. Tirone in Toronto does the Ross procedure. GEOTHOIX from this site knows about him. You could probably email him for more info. Good Luck.

 

[FauxClaud]

Hmm...must be in the air!

Hmm...must be in the air!

I just sent off an Email to Dr. Seltzer last night. So nice to know that it was a good thing to do.

This flip flop is killing me...

I read up on Ross...sounds good.
Surgeon says St. Jude..OK
Then hear about the evils of Coumidin..so back to Ross
OK, Coumidin isn't so bad...so maybe St. Jude is just the smart way to go.
OH, the St. Jude won't last forever either..so if there is more surgery either way..then maybe back to Ross...

When will the heavens just open up and tell me the right thing to do!!!

I am also in contact with Marshall L. Jacobs MD
Chief of Cardiothoracic surgery @ St. Christopher?s Hospital for Children in
Phila. PA...He contacted me when my addy was given to him for the Ryan Kaiser Foundation.

And got this opnion forwardd from my Uncle:
Spoke to Dr. Gregory Fried last night. He's a general surgeon and a hospital administrator. Former job was NYPD chief surgeon. He managed Rudy Giuliani's initial bout with prostate cancer, set up the team that did the quadruple bypass for Police Commissioner Safer and the quad bypass for me. Good team, he is also a trouble shooter who has run and reorganized couple of city's hospitals. That said I asked him about the operation. He asked "How old is the patient" when I told him he said there was "no choice" but to go with a mechanical valve. Transplants, he said, "dry out" and have to be replaced every 10 or 15 years. Agrees "cumadin is not a good drug" but says that the hope is that new drugs or therapies will be found in the future. The bottom line he says is that you don't want to send a young man back to the OR every decade.

Just call me Ms. Yo Yo....I went to bed last night with visions of aortic arches in my head.

 

[Ashley]

Ashley--I'm pretty sure that Dr. Tirone in Toronto does the Ross procedure. GEOTHOIX from this site knows about him. You could probably email him for more info. Good Luck.

Thanks! I'll follow up with that and see what I can find.

 

[perrybucsdad]

Ms Yo Yo,

You are going through what all of us had to go through. It's not an easy choice. I'll make you a bet though. I'll bet you once you make the choice, after the fact (give it a few months) you will realize that the choice you made was the correct one. The fact is, there is no wrong choice in my book. But then again, I'm not a doctor too. I would get that second opinion from a doc you trust and who is versed in both procedures.