leaking St. Jude's valve

[Smax]

After having an aortic aneurysm repaired and my aortic valve replaced 5 years ago, I had an angiogram today and learned that "there is quite a bit of leakage around the aortic valve" and the my mitral valve needs replacing as well. My cardiologist said we would talk after the first of the year. I would love to hear from anyone who has had a similar experience. The only symptoms I have had are frequent dizzy spells and some vertigo. I have also had some pain in my upper left chest that is reminiscent of the pain I had when my aneurysm was diagnosed but my aortic arch looks just fine. I'm not sure if I need to have these repairs right away and if not, what activity level I can have while I am waiting.

My surgery was in Houston in 2005 with Dr. Joseph Coselli

 

[drivetopless]

DOn't have any experience here . .. just sympathizing with you. Keep us posted.

 

[Kathy McCain]

Smax,

I am sorry to hear this, but I am sure others will be posting with their experience.

Take care and please keep us updated!

 

[catwoman]

Was the angiogram prompted by an annual echo?

I have some regurge (lateral) around my valve. However, it's been stable. In July 2007, my former cardio ordered a TEE after my annual echo looked odd. I changed cardios in late 2008, and the new one ordered a TEE in July 2009 after my annual echo. The 2007 and 2009 TEEs were compared, and they were stable.
This isn't something just with mechanicals -- I can recall tissue valvers posting about having lateral regurge.

I don't have any physical symptoms. I do burn the candle at both ends and occasionally in the middle, but a good night's sleep and I bounce back.

Good luck with your situation.

 

[Smax]

Thank you for the support. I do hope to hear from others as I am a little freaked out at the moment. It's hard to contemplate another OHS.

 

[Smax]

I have been having pain ( and the same kind of pain) in about the same place as when my aneurysm was diagnosed in 2005 so I had an echo and a CT scan last week. A fold in my aorta was observed so the cardiologist scheduled the angio for today. He is not concerned about the fold but said the amount of 'leaking' around the SJM is significant and that the MV has deteriorated. He was talking reoperation today so I guess I will see him in early January to make a plan. I am relieved that I haven't developed another aneurysm but am discouraged by the idea of another surgery. Thank you for your reply.

 

[Lynlw]

I am very sorry to hear you will be needing another surgery so soon.. and I know from experience this is not the best time of year to get hit with this news, not that there is ANY good time, but personally I didn't like finding out before Christmas and then having to wait over the Holidays to talk to everyone..so I'm sorry about that too.
Have they been watching your Mitral valve or was this news unexpected too?
The GOOD news, if you want some to think about is, even tho noone wants to go thru a 2nd surgery so soon, at least many surgeons have alot of experience with REDOs and so the stats/risk for a 2nd surgery is just about the same as for a first surgery w/ surgeons who do alot of them.

 

[nngbwh]

I am so sorry to hear. Hopefully someone should be able to help you more. Keep us posted.

 

[ALCapshaw2]

Your story reminds me of a former member's story several years ago.

This patient's valve was 'coming loose' because the stitching was failing to hold the valve in place due to a Connective Tissue Disorder - CTD (and possibly a failure of the original surgeon to recognize the poor tissue and /or know how to deal with it). Unfortunately, this patient is no longer a member of VR.org and all of the posts / threads were deleted after departure.

The patient believed they were at 'death's door'.

Dr. William Ryan in the DFW area replaced the valve and saved this patient's life.

This story captured my attention and interest to the point that I make a point of responding to all the BAV newcomer's whose posts I see and advising them to find a surgeon with lots of experience dealing with BAV and CTD. (I encouraged Ross to create the Bicusid Aortic Valve and Connective Tissue Disorder Forum after several such patients came to VR.)

That said, I see that you had your surgery at one of the Top Heart Centers in the Country, namely The Texas Heart Institute with Dr. Coselli who is one of the best known Heart Surgeons in the country.

I would encourage you to ask Dr. Coselli (or whoever you see at THI) about the possibility of you having a Connective Tissue Disorder and how they would propose dealing with that if that is indeed the cause of your valve 'issues'. You may want to think about a second opinion, perhaps with Dr. Ryan in DFW.

Please keep us posted on the developments in your situation.

'AL Capshaw'

 

[Lily]

Welcome, Smax.
I'm very sorry for the situation you are finding yourself in. I don't have any advice, only empathy and well wishes

 

[Johan]

As always, Al offered some excellent advice. I want to echo Lily's sentiments, I am now 18 months post op and would be devastated to learn that my new valve is not seating properly. My thoughts are with you, Smax.

 

[Smax]

Thank all of you for information and support. In reading info on various internet sites it seems as though chest pain does go along with aortic valve problems. I wonder why my cardiologist thinks the chest pain might be something else like acid reflux? My plan is to gather the results of my latest procedures and send them to Dr. Coselli in Houston for his opinion. Al, I do appreciate having Dr. Ryan's name in order to have another opinion.

 

[AgilityDog]

On the upside, a second surgery is not too much more difficult than the first. At least the survival stats are very similar.

I believe mitrals are harder on the patient than aortic replacements, in general, due to the location of the valve.
I've had both, but was in such poor shape for the mitral that I really can't compare them objectively.
Dr. Ryan did my second, the aortic replacement with tricuspid repair, and it's been an amazingly easy recovery. I feel so good at 4 months that it's hard to believe I even HAD a second surgery.