Prosthesis Patient Mismatch Help!

[heartweave]

HI All. I had porcine Edwards "21" valve with BAV at age 59. almost 2 years ago. I specifically sent all my records and flew to Cleveland hospital. I specifically asked for root enlargement as my BMI is over 1.8 and I was told I needed a "25". The surgical notes stated he put in a "23" put the serial number and all the echo calculations show a "21". My mean gradient across the aortic valve was high following surgery "28" and now is "45" with a peak during stress echo at "78". I do not have a lot of symptoms but I am scared and upset. How could such a mistake be made? I made an effort to go to the best.
So now what should I do? I use to be able to exercise for 2 hours and after 40 minutes I am tired. I have been doing research and watching different surgical techniques.
I have a pediatric surgeon at Stanford able to do the Konno procedure to enlarge the annulus to a size 25. I also have another surgeon who trained at University of Pennsylvania who is very accessible. He does the entire surgery himself. He suggests the manouguian technique but will know more when he opens me up. He is thinking of 3 different valves depending on what he sees. He seems to be able to think on his feet.
I am at a loss. I am considering surgery in a few weeks. Why wait until I have symptoms or a cardiac episode? I don't want to feel sorry for myself and I want to go into surgery at peace. My situation is complicated by the fact I have had 9 major surgeries and am tired and scared.
Does anyone have suggestions, experiences? Has anyone used either of these surgeons: Frank Henley at Lucille Packard, Stanford or Bali Shafi? Teaching hospital vs. private hospital? What about repeat surgeries? I am thinking of going mechanical this time.

Thanks so much
Trying to keep it together in California....
Heartweave......

 

[Paleowoman]

I'm really sorry to read this Heatweave. I don't know what to say - patient prosthesis mismatch is something that is a concern and now you're in a vulnerable position. Has your cardiologist given you any advice on which of those surgeons to choose and when to do surgery ? And has anyone asked why the Cleveland surgeon put in a 21 mm valve instead of a larger one ? There may have been an important reason - though why weren't you told ? Have you a copy of your Operation Notes ? If not, ask for it as it should say that the annulus was measured etc.

 

[cldlhd]

I assume you've contacted the team who did the surgery and they are aware of your gradients? If so what did they say? I don't know the specific surgeon you're talking about but I can vouch for the University of Pennsylvania. I had my surgery there and found everyone I encountered there to be knowledgeable and dedicated.

 

[Paleowoman]

PS to my earlier post Heartweave - I'm in the same boat as you, patient prosthesis mismatch, see my post here: http://www.valvereplacement.org/forums/forum/pre-surgery/876137-back-in-waiting-room-again

 

[Agian]

This might be a dumb question, but does losing weight (lowering bmi) help with reducing the pressures?

 

[ottagal]

Hi Heartwave,
It is understandable to be scared and upset. Gosh, you have been through a lot. I am sorry I have no suggestions on surgeons for you. There are others on this site who have had a number of repeat surgeries. Thinking of you and praying that you get the guidance and information you need to be at peace with this. We will be here for you.

 

[FredW]

Ann, sorry to hear about your redo. Wishing you the best. I have been absent recently dealing with other issues, but I wanted to let you know that I hope the best outcome for you.

 

[honeybunny]

Awwww, heatwave. Sorry to hear that despite all your efforts you are facing another surgery in short order. I would probably do as you are planning and schedule a redo before symptoms appear. Sending positive energy your way. Hate seeing you and Anne going through this.

Hugs, Michele