Options for my son, age 13, bicuspid Aortic valve + server Aortic Regurgitation

Help Support ValveReplacement.org:

neil

Well-known member
VR.org Supporter
Joined
May 27, 2008
Messages
1,766
Location
england
good advice and nothing i can really add, stay strong,
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,084
Location
Queensland, OzTrayLeeYa
Hi

m1ffb;n872043 said:
Thanks all, for your support..
one more angle on this (Supermans post got me thinking and remembering a bit more, cos its been a while since I was 20).

When I was 10 and had my surgery one of the things which occured before that (like from when I was about 6) was to pull me out of competitive sport, and indeed sport in general. It was also true right up till I was about 15 ... so in many ways I missed out on very important years for human growth.

After that time (during my Uni studies) it became understood that humans aren't like machines and that particular phases of life are critical for the proper development of bone strength, muscle strength and other important things.

Because of the decision to pull me out to protect me it put me significantly behind almost all my peers and certainly behind all my family in terms of strength and growth. Due to my nature I became quite rebellious of this before I actually knew that what I was doing was good for me (better than cotton wool wrapping) and developed strong interests in activities which allowed me to develop strength and fitness without having to conform to others (usually wrong) ideas of how to train.

I can't know for sure if pulling me from training resulted in my situation or not, but I feel strongly it did.

For sure now after so many years I'm "middle of the pack" ... not as fit as some fitter than others. However it usually takes me more effort to be as fit as I am. So while I'm fitter than sedentary "couch potatoes" I'm nowhere near what athletes are.

Just feed that into your son's situation as you see fit.
 

m1ffb

Member
Joined
Jan 9, 2017
Messages
11
Location
New Jersey
After reading quite a few articles and published literature it seems to me that Ross procedure
- even if successful, might not last as long in kids as a prosthetic valve
- introduces a problem with an additional valve
- might lead to other problems like aneurysms down the line

Because of these reasons I am leaning towards dropping Ross as an option.
The current solutions seem to be
- try the best to get the aortic valve repaired
- if not, replace with a tissue valve which do not need anti-coagulants

What is the general consensus about the longevity of a repaired valve ?

Can you please recommend a surgeon / facility which has had good outcomes from an aortic valve repair ?
Currently I am looking at hospitals mainly in North East US.

Thanks again for all your comments
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,279
Location
Levittown ,Pa 19054
m1ffb;n872279 said:
After reading quite a few articles and published literature it seems to me that Ross procedure
- even if successful, might not last as long in kids as a prosthetic valve
- introduces a problem with an additional valve
- might lead to other problems like aneurysms down the line

Because of these reasons I am leaning towards dropping Ross as an option.
The current solutions seem to be
- try the best to get the aortic valve repaired
- if not, replace with a tissue valve which do not need anti-coagulants

What is the general consensus about the longevity of a repaired valve ?

Can you please recommend a surgeon / facility which has had good outcomes from an aortic valve repair ?
Currently I am looking at hospitals mainly in North East US.

Thanks again for all your comments
I may be biased ( since he was my surgeon ) but one of the best surgeons in the states for aortic valve repair is right at Penn- Dr. Bavaria. Don't take my word for it though , check out his credentials.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,084
Location
Queensland, OzTrayLeeYa
Hi

m1ffb;n872279 said:
After reading quite a few articles and published literature it seems to me that Ross procedure
- even if successful, might not last as long in kids as a prosthetic valve
- introduces a problem with an additional valve
correct ... screws a good valve so that you go from needing one tissue prosthetic (for the tricuspid harvested for the Aortic) to needing two ... when that harvested valve fails. Note I said when.

Then there is the increase in scar tissue caused by the work around the other parts of the heart. That is seldom discussed and I've never ever once heard a surgeon say "well I look forward to doing surgery where scar tissue buildup is greater.

- might lead to other problems like aneurysms down the line
I've never heard of that, the primary cause of aneurysm is genetic related (with perhaps some environmental influence). If you have BAV the possibility of Aneurysm is increased in later years ... indeed that is what was the primary driver for my last surgery.

If you are young, and you have BAV and that requires surgery then I'd say you have a good chance of needing another surgery no matter what for repair of that aneurysm in time.

It should be monitored and you should discuss that exact question with your team.

Because of these reasons I am leaning towards dropping Ross as an option.
Curiously those are the exact reasons I personally would run a mile to avoid the Ross

The current solutions seem to be
- try the best to get the aortic valve repaired
- if not, replace with a tissue valve which do not need anti-coagulants
I would tend to agree with that assessment, as at 13 the growth in the body would seem to make a mechanical not a viable solution. I could be wrong there.

Best Wishes
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,279
Location
Levittown ,Pa 19054
I was looking for info regarding valve choices and younger patients and I came across an interesting article but it was regarding patients around 40 not 13. Obviously there are a lot of factors which makes it difficult to make a decision ,especially for we who aren't experts and don't have the information and test results that the experts will have. The best you can do is pick the right people and learn what you can so you can ask the right questions. The article is basically a discussion among a few surgeons , one being the surgeon who did my surgery, discussing repair vs tissue for younger patients. As expected they didn't all agree but what I got out of it is a tissue gives a certain predicable reliability over the first ,let's say decade, but once it starts to fail it will go downhill rather quickly. Repair seems to be more of a crapshoot on both ends due to more variables. The experience and skill of the surgeon in regards to repair is very important as is the condition of the valve. In other words a repair is more likely to fail at 3 years than a bioprosthesis but it's also the only one of the 2 that has a chance of lasting 30 or 40 years. There was a debate regarding the data which my surgeon labeled as "irrelevant" because it was based on older repair techniques and that they have improved considerably over the last decade. aortic valve repair vs replacement.pdf
 

Attachments

Last edited:

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,279
Location
Levittown ,Pa 19054
No problem. There were a lot of people out here who helped me back in 2014 when I was looking for it so just passing it on. Also figured if you tried to get Bavaria you could see a bit of his point of view on the subject.
 

MethodAir

Well-known member
Joined
Apr 27, 2015
Messages
204
Location
Canada
pellicle;n872050 said:
Hi
Auschwitz is an ordeal, medical treatments to save your life are not.
Point taken, but my own hospital experience pre-surgery resembled being in a concentration camp. Always have a strong advocate.
 

m1ffb

Member
Joined
Jan 9, 2017
Messages
11
Location
New Jersey
The pediatric cardiothoracic surgeon, at Boston Children's Hospital, we are considering is recommending aortic valve repair or reconstruction.

Does reconstruction always mean replacement of the valve ?
Is the Boston hospital a good place to consider ?
 

erik

Active member
Joined
Feb 2, 2017
Messages
25
Location
Europe
My aortic bicuspid valve was repaired. But as far as i know, a valve can only be repaired if there is NO stenosis, only regurgitation.
In other words, the leaflets must be of good quality but they do not close very well.
But be sure to check this and be sure you have a surgeon with a LOT of experience in aortic valve repairs.
Bicuspid aortic valve repairs are not so common as valve replacements and needs high mastering skills.
Check out this article about it: https://www.google.nl/url?sa=t&rct=j...oSIXIA&cad=rja
and this https://www.ncbi.nlm.nih.gov/pubmed/24680032
This article describes how the repair is done; https://www.ncbi.nlm.nih.gov/pubmed/24413740
I also red in research that a repaired aortic bicuspid valve will last longer when there is no regurgitation left after the repair.
So, if you consider a repair, then be sure to have a backup e.g. mechanical or bio.
Be aware that YOU can decide what the surgeon has to do when he can't repair the valve for 100%. You can also decide that the surgeon should decide...
An aortic valve repair will require some cabrol stiches, but you will not need warfarin or any other anticuagolant.

There is a change that your son won't need another surgery for the rest of your life, but if you have bad luck, your son might require another AVR surgery.
In my case they could not do a 100% repair and there was a small regurgitation left after the operation. As research more of less predicted, it lasted for three years... now i will get a mechanical one and have to life with warfarin.
In my case, my surgeon should had aborted the repair and put in a bio. In this case I was free from re-operation for about 10-15 years and would have had another opportunity of make a desicion between bio and mec.
I hope this will help you make a well thought out decision....
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,084
Location
Queensland, OzTrayLeeYa
Erik

I forgot to say "welcome" earlier ... I'm glad to see you helping others already ... :)

erik;n872932 said:
not intending to sound patronising (just couldn't figure out any other way to write it).

Its always good when people have personal experience to share, even better when they have research too

Best wishes
 

cldlhd

Well-known member
Joined
Apr 9, 2014
Messages
1,279
Location
Levittown ,Pa 19054
I believe Boston childrens is one of the top ranked pediatric hospitals in the country but so is the Childrens Hospital of Philadelphia and it's a lot closer.
 

gregjohnsondsm

Well-known member
Joined
Jun 2, 2014
Messages
67
Location
Des Moines IA USA
First I need to say that I believe this will work out well for your son and you. I have lived with a bad heart valve all of my life (ever since I can remember) and I would say i have spent about 0.001% of my time thinking about it. I'm active, I elk hunt, I'm a pilot, married, three grandchildren and planning to retire on a sailboat. He will live a normal life. With an added dimension that will allow him to feel the fullness and beauty of life maybe a little more than the rest...
I totally agree with your assessment of the ROSS procedure. If it ain't broke don't break it.

My only additional advice would be to research the doctor and facility as much as you do the medical choices.
Be sure that they are experienced ( the doctor and care staff) and have done the procedure that you choose many times before.
Be sure that the medical facility is doing this procedure every day and has the staff necessary to deal with 'off road' conditions.
Don't be afraid to travel to get the best medical care. I was out of the hospital in four days (AVR + Bentall procedure) and had a 8 hour drive home. No problem.

All that said, I can recommend Northwestern Hospitals Bluhm Cardiovascular Institute as a quality operation. Over the years they have developed methods and 'tricks' as Dr McCarthy said to increase the safety and success of the operation. I'm sure there are other quality hospitals, but it is worth the time to visit them and interview them as if your life depended on it. There are hospital reports and comparisons that show the different hospitals and success rates. Don't be afraid of information, it is what it is, use it to make the best decision for your son.
Also you should take comfort in the fact that your son is young and his outcome for this operation is exceptionally good.

I have three very close grandkids now and 1 of them just had a surgery (he was < 2 years old). I would have traded places with him 10 times over. I feel your pain and helplessness and general anger at (?). But the doctor will come out to the waiting room with thumbs up and the world will be right again.
 

m1ffb

Member
Joined
Jan 9, 2017
Messages
11
Location
New Jersey
Thanks Greg and all others for your perspective.

We have now scheduled OH surgery for my son at Boston children's.
The surgeon will first try aortic valve repair / reconstruction.
For our case, this most likely means doing a partial (one leaflet) or full (all three leaflet) Ozaki procedure.
The thing we like about this, is that there is a possibility to replace only 1 leaflet and split the other fused leaflet (from bi-cuspid aortic valve)
and make it a tricuspid valve with 2 native leaflets. The long term outcomes (>10, 15 years) are not known since it is relatively new procedure.

The surgeon said that my son is a good candidate for it, but we need to keep backup options on hand.
Now, this is where we have to make the difficult choice.

Both our Cardiologist and surgeon prefer Ross as the backup.
But I have lot of concerns about it.
Mainly,
- the pulmonary valve is not as strong as the aortic, which might lead to issues in the long run
- Ross is much more complicated and difficult to get it perfect
- Introduction of a valve issue on the pulmonary side.

We got a second opinion from NY Columbia Children's and the surgeon there said he can enlarge the annulus and put in a 25 mm adult size mechanical valve, if we prefer that.
It is good to know that this is an option, but really not sure if this is the right option for backup.
He said it will be unethical to put in a tissue/bovine origin valve in a 13 year old, because it might last only 3 years.

The main benefit I see from mechanical valve, is its durability and freedom from re-operation.
I understand, that my 13 year old son will then have to be on life long blood thinners
and will need monthly blood tests to monitor his levels.
He will also need to stay away from contact sports.

This is something which keeps me up at night.
Am I making the right decision if we go with mechanical as backup ?
Can my son lead a life with normal physical activities ?
Would On-X valve be the preferred mechanical valve ?

Thanks again for all your responses. It is reassuring to see help from so many people.
 

Duffey

Me and Granbon
VR.org Supporter
Joined
Sep 29, 2004
Messages
5,238
Location
Far side of the moon
I've been on this forum since 2004, and I remember several parents who have struggled with choosing a back up valve in the event it was needed. The ones I am thinking of went with a mechanical valve. I am still in touch with them outside the forum, and their children have done very well with anticoagulation therapy and are thriving. Best wishes. Mary
 
2

Latest posts

Top