Potentially need another surgery; Mayo Clinic

[AOS518]

Hi. It's been awhile since I've been on the site and have posted. I'm 3 years post op for a mechanical AVR. Since probably November/December I've been getting chest pains and short of breath. I saw my cardiologist in December and she ordered an echo and stress test. I had the echo done and it showed high velocity across the valve but she consulted with another cardiologist and told me it was probably just due to the small size of my valve. I delayed the stress test as I had broken my foot during this time. I finally had the stress test about a week ago and it showed an ST depression and I had chest pain and shortness of breath at about 5 minutes in. I made it to my target heart rate but then had to stop. Based on the results I had a stress echo done and it showed the pressure gradient of he valve increase to about 70. After discussing the results with my cardiologist she feels the valve was put in wrong and told me that with a mehanical valve I should not have any symptoms and if I did it should not be 3 years after surgery. She has referred me to the Mayo Clinic and I'm currently waiting for them to schedule my consult. My cardiologist feels that I need surgery to fix this problem.
I'm emotionally drained and scared that I may need a 3rd OHS and this is a shock as my surgeon had told me that my mehanical valve would last my lifetime and I wouldn't need surgery until I was around 70/80. I'm currently 31 and have an almost 5 year old daughter.
Has anyone else ever experienced this and does anyone have experience with the Mayo Clinic and how it works?
My cardiologist told me that I would have a consult and if I need surgery it would be done before I flew home.
I'm so confused and angry and scared and need some guidance.
Thanks

 

[pellicle]

Hi

I'm sorry to read of your difficulty.

.... After discussing the results with my cardiologist she feels the valve was put in wrong and told me that with a mehanical valve I should not have any symptoms and if I did it should not be 3 years after surgery.
....She has referred me to the Mayo Clinic and I'm currently waiting for them to schedule my consult. My cardiologist feels that I need surgery to fix this problem.
...I'm emotionally drained and scared that I may need a 3rd OHS and this is a shock as my surgeon had told me that my mehanical valve would last my lifetime and I wouldn't need surgery until I ...I'm so confused and angry and scared and need some guidance.

I bet you do feel confused and angry ... I'm sure I'd feel all of that. I know it will take time to grasp all these things, so (if you can) try not to "come to any conclusions" yet.

From what I understand the exact orientation of the valve is critical. So its entirely possible that you do need it reseated. To say that this is a "bummer" is such an understatement as to say "its a bit of a walk to China from Norway.

I'll see if I can dig up some bits that may be handy to read.

 

[ottagal]

I can only imagine how upsetting and shocking this news is for you. I am so sorry to hear that this is happening to you. I do recall a few members having to have a 'redo' after AVR with a mechanical valve. One was due to a 'stitch coming loose' and if my memory serves me correctly, his name was Johnny. I think he got 2 years out of his mechanical valve until they had to go back in again. The good news is he underwent the re-do AVR and did well afterwards.
Wishing you all the best. Keep us posted. We are here for you.

 

[pellicle]

Hi again.

Some explorations of the importance of proper valve alighment. Let me know if you want the journal article, although I'm sure that the Mayo Clinic is "all over this" like ants already.

 

[AZ Don]

I had my surgery at Mayo Clinic in Phoenix. What I can tell you about my experience with Mayo is that the Dr's there schedule more time for you than most places. Bring lots of questions because the Dr is likely to take the time to answer all of them to your satisfaction. And I assume that you are going to Mayo in Rochester, which is ranked #2 for heart issues in the country. While it sucks to need yet another OHS at least you will be in good hands and I'm sure they can fix your issue. As far as surgery before you go home, like any other hospital I expect they have a pretty full schedule and if you need surgery I would expect them to schedule it based on the urgency of your condition. I waited more than a month because of scheduling appointments, other appointments, and then the surgeon's and operating room schedule.

 

[Paleowoman]

Really sorrry to hear this very upsetting and stressful news for you just three years out of surgery. Wishing for you that you are seen very soon to get this fixed.

 

[honeybunny]

This blows me away and I don't know what to say other than I'm sending positive energy your way. Please keep us posted.

 

[JulienDu]

Best wishes, this is tough I hope the new place where you will be going will be able to answer all your questions. What size valve were you given ?

 

[epstns]

This one just totally throws me. Proper installation is something we seem to just take for granted. If there is, in fact, a problem, then this would just tumble my world, too. The fact that you have symptoms so soon after surgery does seem to indicate that there is something amiss, but the thought of having to re-do the surgery is a really difficult pill to take.

Hang in there. We will be here to support you any way we can through this.

 

[AOS518]

i have a 21mm st. Jude's mechanical valve

 

[JulienDu]

Could your issue be Prosthesis patient mismatch, was it discussed I mean ?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861088/

"Prosthesis‐patient mismatch (PPM) is present when the effective orifice area of the inserted prosthetic valve is too small in relation to body size. Its main haemodynamic consequence is to generate higher than expected gradients through normally functioning prosthetic valves."

“"Mismatch can be considered to be present when the effective prosthetic valve area, after insertion into the patient, is less than that of a normal human valve”"

Also, just to be sure, did they confirm during the echo that there were no obstruction on the leaflets ( by pannus or thrombus ) and no endocarditis ?

(I am very very far from being an expert just trying to think as if I were in your shoes, and I think your cardio is right to send you to another hospital if he feels it was a mistake, you will feel more confident and like a poster said Mayo in Rochester has a huge reputation)

 

[DachsieMom]

I'm so sorry. I also have a 21 mm st Jude - but with a conduit. 8 weeks after surgery, my cardio thought I had a leak, and another cardio felt the same way - turned out both cardios just did not understand how my valve worked (I can't explain it very well, but according to my surgeon, whom I trust, the valve is somehow is designed with back flow). I went through all of those feelings that you are experiencing - I have two young children. I feel for you. Best of luck.

 

[harrietW]

A 3rd gosh l am sorry. Thoughts and prayers go out for you. Nothing worse than being scared and being fearful of the unknown. Xx