Need new Aortic Bicuspid valve and graft for Aneurysm

[coryp]

Hello,

I am going for my third surgical consult tomorrow as I have been diagnosed with an Aortic Bisucpid valve (2 years ago mild regurgitation or leakage) which has most likey lead to me having this Ascending aortic aneurysm (4.8cm). This is the real reason for surgery as it has caused me pain and the size is now dangerous. It seems like they will have to replant the root as well (not sure if this is standard procedure?). I also did an Angiogram Friday and it looks as if 1/2 the Arch is larger as well so this may have to be done as well (the surgeons said that they really would not know until I was open), if so then a more difficult procedure called a deep hypothermic cardiac arrest would have to be performed as well.

I am 34 male and in good shape, bmi 20 (5'9 160). I have done ekg, electro, ct (which diagnosed the ANEURYSM) and cannot believe this is happening!!

I would like any insight that can be provided as well. This sight seems very helpful and I look forward to any guidance.

I live in Los Angeles and will be going to UCLA (surgery has been scheduled for this Friday however I have put off to get this new consult).

Are there many people in my age group taking Coumadin and how has it affected you? How was the post-op or recovery for the 1st week after surgery?



Thank you

 

[Tom F.]

This website has many people that faced the same situation as you are now. Its not fun, its scary. But your youth and good conditioning will help the recovery go quickly. The one thing that I would suggest is that you consider the Ross procedure as an alternative to a mechanical valve. Certainly there are pros and cons to both, but at your age you seem to be a perfect fit for a Ross.

 

[coryp]

This website has many people that faced the same situation as you are now. Its not fun, its scary. But your youth and good conditioning will help the recovery go quickly. The one thing that I would suggest is that you consider the Ross procedure as an alternative to a mechanical valve. Certainly there are pros and cons to both, but at your age you seem to be a perfect fit for a Ross.

Tom,
Thanks for the reply. I will research the Ross so I can understand it better. I will ask the surgeon tomorrow as well.

Thanks for the insight.

 

[Mary]

Welcome to the site!

If you read the postsurgery forum, you will find almost all the experiences people have had immediately after their replacement surgery.
The anti coagulation forum contains a wealth of information, and by reading the posts, you can get a "feel" for what it's like to be on the drug.
Most coumadin users are very vocal in saying that coumadin is not the scary drug it has been portrayed as being.
Why have you had three surgical consults, if you don't mind my asking?
Anyway, glad to have you aboard!

 

[coryp]

Welcome to the site!

If you read the postsurgery forum, you will find almost all the experiences people have had immediately after their replacement surgery.
The coumadin forum contains a wealth of information, and by reading the posts, you can get a "feel" for what it's like to be on the drug.
Most coumadin users are very vocal in saying that coumadin is not the scary drug it has been portrayed as being.
Why have you had three surgical consults, if you don't mind my asking?
Anyway, glad to have you aboard!

MARY,

I guess it is denial more than anything and trying to find the most skilled surgeon that my wife and I will be happy with. Thanks for the info I will visit the other areas you suggest for more info.

 

[Mary]

MARY,

I guess it is denial more than anything and trying to find the most skilled surgeon that my wife and I will be happy with. Thanks for the info I will visit the other areas you suggest for more info.

Thanks for sharing! This is just a suggestion, but you might want to try it. One method of finding out about a surgeon is to post whom you have consulted with and see if any other members have undergone surgery using them.
You might also try the "search" feature at the top. Type in their names and see what comes up!
I hope this helps.

 

[karlaosh]

Tom:

I'm 40 and also have a bicuspid aortic valve with aortic regurgitation, now severe, and an ascending aortic aneurysm about 4.5-4.8 cm.

I've known my whole life about the bicuspid aortic valve, but it wasn't until the last few years that the regurgition started getting bad and the aneurysm developed.

I'm scheduled for surgery June 1st. The surgeon doesn't know if the root will have to be replaced in my case; he'll decide that when he's in there. But he did tell me that my surgery was not "technically demanding." In other words, he's confident that he could do it in his sleep. He's cocky, but he also has lots of experience.

To me, having a highly experienced surgeon was very important. If I lived in Los Angeles, I'd be talking to Dr. Sharo Raissi at Cedars-Sinai. He specializes in bicuspid aortic valve disease and its associated problems, like asending aorta and arch aneurysms. Even if you didn't end up using him for your surgery, he'd be a great person to have a consult with.

Good luck and keep us posted.

 

[Marcus]

had valve & root replaced 9 mths ago - 24 years old

had valve & root replaced 9 mths ago - 24 years old

Cory,

I had aortic valve and root replacement 9 mths ago. I was 23 at the time and in good shape. Like you, I was very worried prior to surgery. Looking back on it, however, I often wonder why I was so scared. But I know that it's hard not to be PRIOR to surgery.

I now have a St. Jude mechanical valve and dacron root. I went w/the mech valve in order to avoid having a pig valve replaced again in 12 yrs. My doc never mentioned the Ross procedure, so I don't have any advice there. I have had no problems w/Coumadin (thank the Good Lord). I have never eaten leafy greens, however, so it's been very easy for me to avoid those.

From my experience, the worst part of surgery is the time waiting before having it done. You will be in my thoughts and prayers. Trust God and he will be faithful in keeping his promise:

"For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Phil 4:13

I said that to myself a couple thousand times during my ordeal.

Feel free to email me if you have any other questions. Make sure to type something recognizable in the subj line though b/c I'm psycho about not getting viruses on my new pc.

Email: [email protected]

God Bless You.