surgery on the horizon

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pekster11

Well-known member
Joined
Apr 20, 2011
Messages
205
Location
Chester, UK
Howdy !
This is my first post on here :cool: !

I have congenital AS (a tricuspid valve with some fusion of the leaflets). The AS has been stable all my life, at a mild level, until now ! ( I am 37)

On Wednesday I had my heart checkup (usually go for one every 2 years), and the cardiologist told me that the jet velocity through the valve had increased from its previously stable level of 3.0 to 3.8 !
However, to be sure I'd need a MRI scan. (scheduled for May 2012, when my next appt with the cardiologist is )

He also noted that there was dilation of my aortic root, not severe at the moment (but something that had never been mentioned to me before,even though it was noted on my record).

If the MRI scan confirmed the above, surgery would probably be within 5 years. with a mechanical valve and root repair being needed :(

I had always assumed I would avoid the need for surgery until I was in my 50s.

Should I get a 2nd opinion on the jet velocity result ? As even the cardiologist said it was not an entirely accurate procedure, and a one year wait is too long !!

I have never worried about my condition until now. A quick visit to the outpatients dept, once every two years, with the usual . "no change, its still mild..see you again a couple of years" was all it entailed for me until last wednesday..

Have to say, I'm really worried :(

Joe
 

Superbob

Steely Resolve!
VR.org Supporter
Joined
Apr 21, 2005
Messages
8,474
Location
Coastal Carolina
First, welcome to the forum, Joe. Not many people are signed on yet because of the holiday, but I'm sure that many will be coming along and responding to your post. I think you will find this is a warm, caring, and well-informed community,

No matter how long you've been monitored, it comes as a jolt when you're told the time for surgery is not far off. An internist heard my murmur when I was in my 20s, told me I would eventually need VR, and my time came when I was 63. By the time I had the surgery, my aortic root was quite enlarged, and I had combined valve and root replacement. That was six years ago, and I am doing well.

For perspective, it's good to keep in mind that an active life awaits after this is done. My life has certainly been full. We are blessed to have good doctors who have diagnosed the problem, monitored it, and are able to correct it with a very high rate of success.

Keep posting here and letting us know how it's going. I am sure many of the good folks here will be sharing their own experiences. We will be with you every step of the way. If you have questions or concerns, just fire away.

Again, welcome to our congenial funny farm! :D

P.S. second opinions are usually a good idea, when you can obtain them.
 

jennifer

Member
Joined
Apr 20, 2011
Messages
17
Location
Tennessee
Hi Joe,
I just replied to your other post and saw this one. Can you get specific information and measurements? I signed a release and got all of my reports (echo, TEE, MRI and even cath). That way I could compare for myself. For example, I just looked up your aortic jet velocity at http://www.echopedia.org/wiki/Normal_Values and read that 3.0-4.0 puts you in 'moderate' aortic stenosis. A measurement > 4.0 is considered 'severe'. Of course, you need to use good judgment about the information you find, but I have discovered the internet as a very valuable resource.
 

DeuxofUs

Well-known member
Joined
Feb 20, 2011
Messages
135
Location
Encinitas, CA USA
Hi Joe,

Welcome to our boards. I just found out in Feb that I will need surgery soon... I didn't even know about my BAV until then... it was a total shock. I never had that time to "stew" on it so it's been weird.

However, the people on this board have given me so much reassurance. I was so freaked out when I was told ... I didn't even know about the success rate. All I heard was OPEN HEART SURGERY in my 40's!!!!

There is life after this surgery and as a matter a fact, it's even better than before. I am actually looking forward to it so that I can move on.

Ill be choosing the Ross Procedure which is a little more complicated but not as commonly done.

We are here to support you all the way. Again, welcome to the family, it's a great group of people.
 

pekster11

Well-known member
Joined
Apr 20, 2011
Messages
205
Location
Chester, UK
Thanks guys and gals for your responses ! It is certainly reassuring that others have been in the same position and come through the other side to live healthy lives !

Jennifer..asking for all the measurements regarding my AS is something I've never done, but will definitely be inquiring about now.

I know a few years ago my pressure gradient was 30-35.
I think the change from a jet velocity of 3.0 to 3.8 in just 2 years, which I believe is a rapid deteroration, prompted my cardiologist to assume surgery would be sooner rather than later, even though 3.8 is considered moderate AS. I would imagine if stabilised at 3.8, I would be waiting a bit longer for surgery.
My LV function is still fine though.

I've already been considering potential mechanical valves, the one-X , with the prospect of less ACT seems the best choice for me, at this time. I wonder if the NHS offer this valve ?? Not sure, and gives me something else to ask about !
 

buncle

Well-known member
Joined
Aug 5, 2009
Messages
337
Location
texas
Joe wecome to the site. We know it is alot to "get your head around" but, with time you will.All of us have been where you are now. Read the stickys in the preop and postop sections.We will be here to help you through.
 

WandaW

Partners
Joined
Apr 9, 2011
Messages
77
Location
Minneapolis MN
Hey Joe, it is possible to have this fixed and move on. This forum has helped me alot with answers and questions to ask of my MD. I was such a relief to know that I was not the only one,
 

LeakyUK

Well-known member
Joined
Jan 27, 2011
Messages
110
Location
United Kingdom
Joe, I have been offered a Carbomedics (Surgery at James Cook Middlesbrough). You may find this is the standard UK offering. My ONLY choice was tissue or mechanical.
 

pekster11

Well-known member
Joined
Apr 20, 2011
Messages
205
Location
Chester, UK
hi leaky ..
how does the cardomedics mechanical valve compare with others?? Such as the On-X or the St Judes ?
 

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