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Severe depressed and unable to decide , 32 yr old , Bicuspid Post AVR , Aneurysm

Posted , 4 users are following.

dixitworld
dixitworld

Hello Guys

I was born with bicuspid valve which progressed with severe AS and AR and finally i got it replaced at 23yrs of age. My asc aorta was 4 cm at that time.

Now after 8 years asc aorta is 5.2cm.

Few surgeon says it should be operated now , few says i can wait till 5.5cm.

Second surgery at this age definitely seems that i wont be able to be fixed forever , even if i got through this one , i feel more surgeries can come in future.

Totally exhausted and not able to decide what should be the right decision. Just depressed and has anxiety whole days

0 likes, 11 replies

11 Replies

  • dixitworld
    dixitworld

    Posted

    Does anyone knows if young patient should go for surgery early than older age. I researched a lot but could not found anything. Too much worried and stressed.  Mind is unable to decide what to do
  • roy72611
    roy72611 dixitworld

    Posted

    It is a difficult one and you are very young...I have an Aorta of 5.0cm but I am a 70 year old male. My view is whatever your age the question you should be asking yourself is "Does the risk of surgery out weigh the risk of a dissection or even a rupture' or does it carry a greater risk to do nothing at all. Its a difficult decision but may I suggest you sit down with your surgeon and discuss the pros and cons. He is the one person in the best position to guide you. May I wish you good luck, Kind regards. Roy

    • dixitworld
      dixitworld roy72611

      Posted

      Hi Roy,

      I have met 3 surgeons.

      1. At Kaiser , he calculated some z score and he think that am young and me having 5.2cm is worse than someone 60yrs of age so he asked me to undergo surgery soon

      2. At Mayo , surgeon said that recent researches says ok to wait till 5.5cm and upto me if i want now or later, considering it is second surgery.

      3. At Cleveland clinic , they said we operate on 5 cm whether it is 1st or 2nd time. They said we feel after 5 cm risk is more than their surgical risk(2%).

      I researched all over internet and all studies , could not conclude anything for bicuspid patients. 

      Having second surgery at 30 definitely put me at risk of 3rd or 4th surgery sometime in my life and possibly end of life.

      Too much stressed out and unable to make decision.

  • james48800
    james48800 dixitworld

    Posted

    Is that measurement from CT with contrast? All three providers mentioned are excellent, so it reallyis a hard say, isn't it? Have you tested for connective tissue disorders? I would think with another aneurysm *after* BAV repair, it seems like there is something going on.

    • dixitworld
      dixitworld james48800

      Posted

      Hi James,

      No last time my BAV aneurysm was not repaired. Last time my only valve was replaced with mechanical valve. Doctors dont think i have any connective tissue disease but this aneurysm is made because i had bicuspid valve before.

      Yes all 3 are excellent providers thats why so much confused. Considering second surgery , morbidities risk are also higher related to pacemaker , stroke etc. 

      And future surgeries risk is also high considering minimum of 30 year of outcome are not available.

    • dixitworld
      dixitworld

      Posted

      yes this is CT with contrast. Echo and CT scan confirms it is at 5.2cm. Although within 6 months another echo shows at 5.2cm only but docs feel it tough to see growth till 1 yr.
  • juan51999
    juan51999 dixitworld

    Posted

    Hang in there. I just suffered through an emergency aortic dissection. If I had my choice, I would rather plan the surgery vs having it done on an emergency basis. You have the opportunity to plan and allow the docs to control the situation. Because you are young this is tough, but I can tell you peace of mind matters. 
    • dixitworld
      dixitworld juan51999

      Posted

      Thanks juan. Yes i want to do it electively only. Only confusion is what is right time 5.2 or 5.5?

      I have read few people stuck up at between 5 to 5.5 for many many years before having surgery later while very few have dissection also between this.

      I am not that much scared that i need second surgery but with whatever i have researched i found that definitely this surgery wont make me reach post 50 also even if everything works out best.

      Needing up 3rd or 4th surgery definitely doesn't have good results.

       

    • dixitworld
      dixitworld

      Posted

      Hi Juan

      What was the size of your aneurysm when it dissected? you have any info?

  • roy72611
    roy72611 dixitworld

    Posted

    I do feel for you you have a very hard decision to make. My view for what it is worth is the sooner you make a decision the sooner your anxiety will lessen. I also think by not doing anything about it is like playing russian roulette. At 5.2 cm here in the UK we would be recommending corrective surgery for your dilated assending aorta. I don't know if you are aware but there is a new aortic valve available that has a reported life of 25 years. It's called a "Edwards" valve. Good luck with your decision but don't leave it until there us no decision to make. Look after yourself mate. Roy

    • dixitworld
      dixitworld roy72611

      Posted

      Thanks Roy.  Yes trying to make up my mind , but really tough to think of mortality ,morbidity for second surgery.

      Recently got married before this news came in. 

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