Bad news, very distraught

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thecman321

Hi everyone, I have been lurking on the site but haven't posted in a while, but now I need the help and support this site provided to me almost 2 years ago.

Here is the scoop

My now 33 year old wife has a condition called Shone's which has a combination of congenital anomalies, 1. coarctation of the aorta, repaired at age five. 2. sub arotic stenosis and defective aortic valve which was repaired at age ten and recently replaced in Jan 2005 with mechanical valve AND lastly 3. what the literature refers as a "parachute" mitral valve.

In Jan 2005 the surgeon said the mitral valve was abnormal but functioning well. Recovered and did well from surgery.

TODAY, Aug 3 TEE results,,,,,less than promising,, my wife said that the cardio doing the procedure didnt say much other than stating the leakage was alot worse than they thought and eluded to valve replacement in the near future. We are still shell shocked as i write this, i don't know what i am feeling right now other that the typical WHY ME WHY US,,,,, AGAIN ?????????? Havent we been through enough????????? !!!!!!!!!!!!

My questions are if the surgeon saw a defective mitral valve should a 2 valve replacement surgery been done,,,, is there such a thing,, are 2 valves ever replaced at the same time??

How bad does a mitral valve leak need to be before surgery is warrented? Any specific numers?

Any other bi valvers out there to chime in?

What are the risks of surgery at this point, how is mitral after mechanical aortic valve replacement different than the original surgery?

What questions should we bring in to the cardiologist in 2 weeks?

Thanks


C
 
Dear C,
So very sorry to hear of your wife's new problems. I think whether the mitral valve should have been replaced at the time she had her aortic mechanical installed is anyone's guess. I would have said that if they are putting in an aortic mechanical (assuming for the reason that they home she doesn't have to have another surgery), then replacing the mitral at the time would have been something I probably would have opted for. However - hind sight is 20/20, crystal balls are a dream and you make the best decision you can at the time. Try not to dwell too much on the would-a, could-a, should-a things and just look forward.

How is your wife feeling? Any particular reason the TEE was ordered. If they feel she is in need of surgery at some point and is feeling well now, I'd opt for sooner rather than later if the drs feel it's a good decision.

Remember that they have the ability to do successful valve surgeries on very sick people. I think surgeon choice is the most important thing right now.

I will keep your wife, and you, close in prayer.
 
Oh gosh-

I'm so sorry to read this post. Joe had his aortic valve replaced in the 70s and then had his mitral replaced a few years ago. He then had to have a small repair on the replacement. And there are MANY members here who have double and even more replacements.

Joe second and third surgeries were just fine. The recovery actually was even better since the first one was done way back when this surgery wasn't that common.

And Joe is very much older than your wife, plus has other serious medical problems.

My guess is that your wife will do well. And I am very sure that whomever does her surgery will be extra cautious since she has a long history of heart problems.

Do you have a surgeon selected yet?

To answer your question about whether two valves are replaced at the same time, yes it does happen, And to answer your other question about why this wasn't replaced at the time of her aortic surgery, I would guess that the mitral wasn't bad enough to need surgery yet.

There are specific criteria for surgery: Here are a couple of links. They are involved and the second one has a link to the PDF file which is long.

http://circ.ahajournals.org/cgi/content/full/98/18/1949

http://www.americanheart.org/presenter.jhtml?identifier=3040632
 
I had two valves replaced with St. Jude mechanicals at the same time, so I know it's done. The original plan was to replace one and repair the other, but that wasn't possible. I don't know if that is advisable or just that the surgeon felt he had not other choice at the time.

Mike
 
thanks for such a quick reply to all so far

thanks for such a quick reply to all so far

to answer you Karlynn,,, a TEE was ordered because the routine echo was suspicious for extra leakage and they wanted to be sure.

She has not had any other symptoms really,,, but in retrospect she has been feeling very tired for the past 3 to 4 months. No SOB or anything like that.
Living a normal life otherwise.

thanks for the links,,, any and all info is welcome.

C
 
Very distraught

Very distraught

C,

I am so sorry you are having this problem and yes, it must feel unfair. I know the feeling well. I had to have my mitral valve replaced and then 7 months later had to have it restiched. I felt this same way. I don't do the technical stuff, it has no meaning to me. I do know that my cardio at that time insisted on tried for a year to lower my BP to a level where my regurg wasn't significant; it didn't work. By the time I finally got to surgery, my mitral valve was shot and had to be replaced. I'll never know if a year ealier would have made a difference, but if it is going to have to be done sooner is better than later.

I also have lupus, which complicates everything, but it does no good to ask WHY. :( On bad days, I take it one minute at a time. I'm sure things will work out for you two. Your wife, and you will be in my prayers and thoughts.

Keep us updated.
Barbara
 
I might be jumping the gun a bit, but does anyone know a name of a mitral valve experts in the east?
 
You can find several Personal Stories from two valve patients by going to the Main Page for VR.com

Click on the Yellow ValveReplacement.com logo at the top of this page, click on Personal Stories and scroll down to the heading for Two Valves Replaced (or some such title).

Johnny Stephens is 2 valver. His valves were damaged by Radiation Therapy for Hodgkins Disease so he had extenuating circumstances and additional complications that your wife most likely will NOT have.

Geebee is another 2 valver.

So you can see that you are certainly not alone in the 2 valve department. Many of us can relate to your feelings of "Why me/us" and "why didn't they fix everything the first time". Unfortunately, that's not very productive.

The best thing you can do is go on a Search for a VERY EXPERIENCED SURGEON who knows exactly what to expect the second time around because he's been there many times before. It would be wise to interview more than one and then select the one you feel most comfortable with (i.e. in terms of his SKILL and KNOWLEDGE).

One last suggestion: Let the Surgeon make the call on WHEN to operate. They seem to have a better perspective in this area IMHO.

'AL Capshaw'
 
You have two very good facilities in your state. Check into these.

Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114-2622

Brigham and Women's Hospital
75 Francis Street, Boston, MA 02115, USA

Both made the list as 4th and 5th place TOP RATED HEART SURGERY hospitals by U.S. News and World Reports for 2006.
 
me too!!

me too!!

Good Afternoon C man,
I am 29 and have shones too and have all the same defects as your wife and I think I have talked to you before, because I have not been able to find anyone else with shones. When I was at the Mayo in 2002 and the drs and me were discussing surgery I had the impression that I was getting two new valves a mitral and aortic, but when I came out of surgery I only had the mechanical mitral and they decided to fix my aortic valve. I know my aortic is leaking worse and worse and I know I am going to be comeing up on another surgery....uggggggggggg. :mad:

I recommend getting a second opinion for your wife because our defect is so rare. I would see if you can find a Adult Congenital Heart Specialist surgeon and cardiologist that has other Shone patients.

I know you don't want to go through another surgery but just remember how much better your wife will be feeling after this is all over.
 
I'm sorry to hear of your plight. The thought of a second surgery would be very depressing I'm sure. My Mytril was replaced, even though it was leaking badly only because my heart chamber began to swell. I dont understand the numbers but my Card indicated that it had enlarged 1cm. This was cause for immediate concern and scheduling of surgery.
 
I am sorry you are dealing with this. Is you wife seeing a cardiologist that specializes in Adults w/ CHD? there are very good ones in Boston and really that is who would understand all the issues. lyn
 
So sorry for the new troubles. That said if it has to be done find the best surgeon and team to do it. There are many good valve surgeons in the East. As has been said Brigham and Womens is one of the best valve surgery hospitals in the country. You could also go to Cleveland to Dr. Cosgrove. I was told about him before my mitral valve surgery last year but did not want to leave Baltimore. I am lucky because we have 5 hospitals here that have excellent valve surgery teams.
Double valve surgeries are not uncommon. If the mitral valve was not leaking significantly, they would not have done anything to it. Please stay with us so that you can get the support you both need.
Joanne
 
Sagebrush said:
Good Afternoon C man,
I am 29 and have shones too and have all the same defects as your wife and I think I have talked to you before, because I have not been able to find anyone else with shones. When I was at the Mayo in 2002 and the drs and me were discussing surgery I had the impression that I was getting two new valves a mitral and aortic, but when I came out of surgery I only had the mechanical mitral and they decided to fix my aortic valve. I know my aortic is leaking worse and worse and I know I am going to be comeing up on another surgery....uggggggggggg. :mad:

I recommend getting a second opinion for your wife because our defect is so rare. I would see if you can find a Adult Congenital Heart Specialist surgeon and cardiologist that has other Shone patients.

I know you don't want to go through another surgery but just remember how much better your wife will be feeling after this is all over.
Click to expand...


Jeanne's son Matt has shones, he has 2 mech valves. they are on vacation for a few days but i'm sure she will post here when she gets back,
I'm not sure if you are on the aduclt chd forum, so I posted asking if anyone has shones, if I hear of anyone else, i'll let you know , Lyn
 
My husband has dual valves. Aortic and mitral.

His surgery was done at Mass General by Dr. Gus Vlahakes. Very nice, capable man. My husband is going to have a repair on his tricuspid valve soon, again by same doctor. Good lukc on this quest.

Marybeth
 
Thanks to all who have responded.
Thank you Lyn about trying to find more Shone's people.
Sagebrush, yes we emailed a couple of times, reassuring to know we are not alone.
Like i said my wife has an apointment with the cardiologist on Aug 17 to go over the TEE results, I will be sure to post results of that appointment.
Right now we are just trying to put this in the back of our minds until we hear from that apointment. Its not easy. Havent been sleeping well,, the unconcious brings up not good things.
I dread the thought of another surgery beein iminent. Being on coumadin, scar tissue,,,,,,, definitely makes the procedure more challenging and dangerous than the first.

C
 
If you want the top dog and the top hospital......
go to cleveland clinic....
request dr. gosta pettersson!
i was told he's ranked number one heart surgeon in usa
top five in world
this info was provided by my ccf cardiologist/diagnostician
best of luck to you and your wife,
debbi
 
C

I don't have much to offer except for empathy. My wife is also 33, and is also the "heart patient" in the family. I understand the dread that you're feeling.

All the best.
 
thecman321 said:
I might be jumping the gun a bit, but does anyone know a name of a mitral valve experts in the east?
Click to expand...
We highly recommend, cardiologist Patrick O'Gara and surgeon Lawrence Cohn at Brigham and Women's Hospital.
 
hi c man,
first of all, i am so sorry that you and your wife and family have to go through this.

my father had avr surgery almost 7 years ago and just found out that he will need to have his mitral and his tricuspid valves repaired/replaced in the next 6 months. these two valves were not leaking as they are now when they did his first surgery, so they are now doing a second. he is on coumadin and has no complaints about it. he has already selected dr. colvin at nyu in nyc to do a minimally invasive procedure to repair both valves simultaneously. i think he is planning on doing this sometime in sept-oct.

is he_are we_ all upset about this? sure! still, as i told a friend whose husband just suffered a massive heart attack and needed a 5 way bypass this past monday: how many folks do we know, whose husbands/wives have a severe heart attack and just die on the spot. we are the lucky ones. we are fortunate enough to get warning signs so that these things can be fixed.

i wish you and your wife all the best.
please keep us posted on anything new.
stay well, sylvia
 
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