extraordinary
Well-known member
umm got a lot of options now, so what do you think
UCLA medical center or boston children clinic ?
why you picked UCLA and from where you heard about it ?
Help me with my third surgery questions
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umm got a lot of options now, so what do you think
UCLA medical center or boston children clinic ?
why you picked UCLA and from where you heard about it ?
Boston children's will also look at your records before you fly here. I sent my records and talked to the doctor before I even made my first appointment. After I sent the records I waited 3 weeks and then gave them a call. Dr. Valente called me back in a couple of days and we made a plan for me to come up there a couple months later.
Debbie
Debbie
pikacat
Well-known member
When I was 19, my cardiologist recommended that I go to a surgeon skilled enough to do the surgery necessary. I had 2 VSDs (ventricular septal defects), a cleft mitral valve and another hole in the wall of the heart that was causing a leak in my aortic valve, so I guess it was kind of complicated. Also I had a lot of scar tissue from bacterial endocarditis. He recommended 2 surgeons, Dr Laks and someone else, but I don't remember who. I had family and friends in Los Angeles because I grew up there, but didn't know anyone in the other city. So I went to UCLA medical center.
I would recommend looking into the surgeons and seeing who you feel most comfortable with, and which facility you feel suits you best. I would think all mentioned are excellent.
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extraordinary
Well-known member
thanks for the infos
I just wanted to mention, Congenital Heart surgery , especially complex CHD that you needed to have surgery as a young child, is VERY different than surgery that adults usually need, and the top centers for Adults, usually do not have alot of experience taking care of children or Adults w/ Congenital Heart Defects. You really SHOULD go to doctors that specialize in Congenital Heart Disease and have the most experience taking care of and operating on kids and adult with Congenital Heart defects and all that goes along with it. They usually have the most experience operating on people that are having their 3rd ot 4th REDO since as you know many of the kids need several suregies thru out their childhood.
extraordinary
Well-known member
If you go to achaheart.org and register (its free) they have a list of self reported adult congenital heart centers. They list the number of adult congenital surgeries and patients they see per year and the name of a contact person. ACHA does not make any recommendations. People will give you their personal stories of the care and surgeries they have had.
Debbie
Debbie
extraordinary
Well-known member
i entered the site and found it to complicated while regesitring cause their is so many lists to choose from i guess ill get infos from people who is responding to me here
pikacat
Well-known member
it is an overly complicated site, and it seems to be kind of messed up. if you manage to register for the entire site so you get member access, this is the link you want to see all the clinics and the # of adult congenital heart defect operations per year it does:
http://achaheart.org/for_members/clinicdirectory/index.php
then you can go here to their message boards to ask specific questions about an individual clinic: https://www.achaheart.org/for_members/message_boards.php
extraordinary
Well-known member
thanks a lot, this really helped i have registered from what you sent me..
ill check it out now
extraordinary
Well-known member
the first link i don't get all the list down where can i read the people expriences! !! all the names i just don't get it maybe because it's 6:38 AM in our country and i havn't slept yet from yesterday so i'm wide awake from yesterday !
i will not enter this it gets on my nerves .. not right now atleast
I do not think the risk of valve replacement surgery is probably very different from your other heart surgeries. There is a risk of stroke, heart attack and death in any open heart surgery. BUT it is rare, as you read. This surgery is almost always successful, so that is how you should plan for it. Your chance of having a serious complication is so small, I do not think you should be very worried, especially if you go to one of the top hospitals with very experienced surgeons, like the Boston Children's or CHOP as AL just wrote.
As to which valve is best...there are several choices. They are all quite good. Some have been in use much longer than others and have a long-term track record, while some newer ones have some features that may allow them to perform even better in the long run, although it is too early to tell that for sure. My surgeon helped me choose the valve. Most surgeons have ones they favor and will give you reasons why, some of which may be specific to your particular anatomy and problem. It can get very confusing when you try to decide which one is better. Ultimately you (with the assistance of your surgeon) have to just make a choice. All the major mechanical valves are quite good. I'm happy with my choice, but there are others, such as On-X, Carbomedics and AST that you can look at online by Googling those names. At your young age I believe most surgeons will recommend a mechancial valve rather than a tissue valve, but there may be other options that your surgeon may offer. [Edit after post: Oops! My maleness is showing through...most surgeons (actually essentially all of them) would recommend a bioprosthetic, not mechanical, valve for women of childbearing age who wish to conceive, but that means you will have at least one more valve surgery later. And there are reports involving 100s women with mechanical valves on warfarin who have high rate of successful childbirths, such as this one: http://www.ncbi.nlm.nih.gov/pubmed/15793047 ]
As to which valve is best...there are several choices. They are all quite good. Some have been in use much longer than others and have a long-term track record, while some newer ones have some features that may allow them to perform even better in the long run, although it is too early to tell that for sure. My surgeon helped me choose the valve. Most surgeons have ones they favor and will give you reasons why, some of which may be specific to your particular anatomy and problem. It can get very confusing when you try to decide which one is better. Ultimately you (with the assistance of your surgeon) have to just make a choice. All the major mechanical valves are quite good. I'm happy with my choice, but there are others, such as On-X, Carbomedics and AST that you can look at online by Googling those names. At your young age I believe most surgeons will recommend a mechancial valve rather than a tissue valve, but there may be other options that your surgeon may offer. [Edit after post: Oops! My maleness is showing through...most surgeons (actually essentially all of them) would recommend a bioprosthetic, not mechanical, valve for women of childbearing age who wish to conceive, but that means you will have at least one more valve surgery later. And there are reports involving 100s women with mechanical valves on warfarin who have high rate of successful childbirths, such as this one: http://www.ncbi.nlm.nih.gov/pubmed/15793047 ]
extraordinary
Well-known member
thanks a lot for the reply and the infos, i heared the mechancial valve even though it may last a life time it has the risk of bleeding to death if that true ?
and i will search the names that you wrote
What kind of valve either tissue or mechanical depends on what valve needs to be replaced. If the pulmonary valve needs to be replaced, a tissue valve is usually used. If the aortic valve needs to be replaced a tissue or mechanical valve can be used depending on the situation and choice involving the patient and doctor. With a mechanical valve is used then coumadin has to be taken. If managed correctly it only increases the risk of bleeding minimally. Many people on this board have taken coumadin for many many years.
Debbie
Debbie
Just want to welcome you to this forum & hope that you get as much information as you can from those of us here who have had repeat operations.
You are still very young so I'm sure that you will fare just fine with another surgery. As others have said, there are risks of strokes, bleeding, etc., with any surgery whether it be the first or be it the 6th!
And, your fear of having to take coumadin (anticoagulant) if you decide to go with a mechanical valve & the possibility of bleeding to death is not true. I've been on coumadin for over 35 years......since the age of 24 when I had my first 2 surgeries. I'm 59 years old now & coumadin has never been gotten in my way of doing any of the things that I have done in my life.
So, mull over all the information that is provided to you here, on other web sites & then make your decision on what you think is best for you!
Best of luck to you!
You are still very young so I'm sure that you will fare just fine with another surgery. As others have said, there are risks of strokes, bleeding, etc., with any surgery whether it be the first or be it the 6th!
And, your fear of having to take coumadin (anticoagulant) if you decide to go with a mechanical valve & the possibility of bleeding to death is not true. I've been on coumadin for over 35 years......since the age of 24 when I had my first 2 surgeries. I'm 59 years old now & coumadin has never been gotten in my way of doing any of the things that I have done in my life.
So, mull over all the information that is provided to you here, on other web sites & then make your decision on what you think is best for you!
Best of luck to you!
pikacat
Well-known member
i'm not familiar with the site, but my understanding from other peoples' posts was that list could show you clinics in the united states that specialize in adult congenital heart defects and the amount of procedures they perform yearly, which is important to show how familiar their surgeons are with the type of surgery you'll need. then you could research those centers. you could also ask for experiences people had of those clinics by posting on the boards, which was the second link on my post. but the first link does not have posted experiences, just the statistics.
ALCapshaw2
Well-known member
To learn more about Valve Options, you may want to read the "stickys" at the top of the Valve Selection Forum.
The Big Decision is between Tissue Valves and Mechanical Valves. Young Women who have selected Bovine Pericardial Tissue Valves in order to bear children have gotten 10 good years from them before they needed replacement. Porcine Valves tend to wear out even faster.
There are a LOT of Myths and Horror Stories about living with Anti-Coagulation (a.k.a. Blood Thinners) which originated in the Old Days before improved methods of Measuring INR and Managing dosage. You can learn more about Coumadin management on the AntiCoagulation Forum. We have members who have been on anticoagulation therapy for 30 and 40 years.
'AL Capshaw'
The first part of your post is true, mechanical valves will normally last a long time and maybe a lifetime.... I'll let you know:thumbup:......and I doubt that you can find ANY legimate information that supports your second part. If a simple and easy regimen is followed, "the risk of bleeding to death" is simply NOT TRUE:rolleyes2:.
extraordinary
Well-known member
Just want to welcome you to this forum & hope that you get as much information as you can from those of us here who have had repeat operations.
You are still very young so I'm sure that you will fare just fine with another surgery. As others have said, there are risks of strokes, bleeding, etc., with any surgery whether it be the first or be it the 6th!
And, your fear of having to take coumadin (anticoagulant) if you decide to go with a mechanical valve & the possibility of bleeding to death is not true. I've been on coumadin for over 35 years......since the age of 24 when I had my first 2 surgeries. I'm 59 years old now & coumadin has never been gotten in my way of doing any of the things that I have done in my life.
So, mull over all the information that is provided to you here, on other web sites & then make your decision on what you think is best for you!
Best of luck to you!
Thanks you, but you I'm not married yet and when I do, i wanna be able to have children so with this valve is it ok ? because i think I will need on medication for the rest of my life
