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Preparing for surgery (Bentall procedure)

  • 1.  Preparing for surgery (Bentall procedure)

    Posted 11-01-2019 03:49
    Hello all,

    I figured I would take advantage of resources such as this on the internet to get some firsthand advice on what to expect with this. I'm 29 years old, and have a congenital biscupid aortic valve that was discovered when I was around 4 years old. I've been closely monitored over the years, and about 5 years ago they found I had developed an ascending aortic aneurysm connected to my faulty valve. The aneurysm has been measured regularly and had been relatively stable for several years; I have also been asymptomatic in terms of the classic valve issues (passing out, dizziness, shortness of breath), but on my last visit, my cardiologist explained that the aneurysm had jumped from 4.0cm to 4.4 cm in a span of around 10 months, which was cause for alarm. They advised that I'd be best to go through with surgical intervention, and if not, they would be measuring it regularly every 2–3 months. I was referred to a cardiothoracic surgeon and have scheduled my surgery for November 22. They will be doing the Bentall procedure, and I will be receiving a mechanical valve.

    I was just curious to see what others' experiences were for those who have undergone this surgery. I have had major surgery in the past-I had a thyroidectomy and radical neck dissection at age 21 due to thyroid cancer, and was in the ICU for 24 hours, so I am familiar with that experience. I would be lying if I said I wasn't trepidatious about the surgery, but at the same time, I realize it's necessary to save my life, and that the alternative is a sure early death. It did take me by surprise as the aneurysm had been stable up to this point, and increased significantly in a relatively short span of time. I got this news about a month ago and feel like I've had time to process it, though I still have moments of panic about what I'm facing down.

    Long story short, for those who have gone through this (or similar procedures), is there anything you wish you had been told ahead of time? Tips related to recovery? I want to make this as un-stressful as possible for myself and my family.

    Thank you in advance.


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    Scott
    Portland OR
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  • 2.  RE: Preparing for surgery (Bentall procedure)

    Posted 11-02-2019 08:30
    My last surgery was in 1992 which replaced my Mitral Valve with a prosthetic valve and my Tricuspid valve was reinforced  with a prosthetic Annulplasty Ring.  I am now in my 83rd year and going strong.  This is not exactly your diagnosis but you do have experience with recovery. and the ICU. I found this helpful the second time around. My first open heart surgery was in 1983 and both times my confidence in the surgical team gave me a positive outlook on the entire event.  

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    Philip Winsor
    Aiken SC
    (803) 641-1192
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  • 3.  RE: Preparing for surgery (Bentall procedure)

    Posted 11-03-2019 19:11

    Hi,

    I think what you have going for you is that it will not be an Emergency Surgery and that you are not going to a place (I hope) that doesn't have trained surgeons to preform your desired remedy to help you get back to normal as possible. I am presently  57 and I had an emergency Aortic Dissection at 40 while playing tennis. Fast forward, prostate cancer and my left hip replaced, it's now time to have to have my aortic root and aortic valve and most likely my old dacron tubing cut out and replaced on 12/19/19 at the University of Washington by Dr. Gabe Aldea and Dr. Christopher Burke. I did not have my valve replaced when I had my emergency surgery most likely as they were just trying to keep my alive. I have a bicuspid valve and now my leak is causing me to really feel tired all the time, not playing singles tennis anymore and my sleeping pattern is now causing me to feel shortness of breath in the mornings. Plus my left ventricle is getting very large and I hope not too large as well as my leak is severe now. 

    I would encourage you to just trust in the surgeon, trust in your faith and be ready to see yourself recovering and getting back to getting back into the best shape of your life.

    www.aorticdissection.com
    Brian Tinsley :)



    ------------------------------
    Brian tinsley
    sales engineer
    Comcast
    Everett WA
    ------------------------------



  • 4.  RE: Preparing for surgery (Bentall procedure)

    Posted 11-03-2019 23:55
    Hi Brian,

    It sounds like we have similar problems, except that you had the aneurysm burst-which is what I am trying to avoid by having the surgery. I am fortunate in that I don't have any other issues in the heart aside from the aortic aneurysm/bicuspid aortic valve; I had an angiogram last week and my arteries are healthy, and the rest of my heart is in good health and functioning as it should be. 

    I am glad to hear your emergency aorta surgery was a success. I sounds like I am essentially having the same surgery as you-the dacron aortic root graft, along with an artificial valve replacement. I'll be having mine here in Portland and Emanuel Hospital with Dr. Kai Engstad. I am admittedly nervous, but, as you suggested, have been envisioning my recovery and trying to keep myself focused on that. Best wishes for you and your surgery, and I will update here after mine is done.

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    Scott Harn
    Portland OR
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  • 5.  RE: Preparing for surgery (Bentall procedure)

    Posted 11-11-2019 15:38
    Hi Scott. My situation is similar to Brian's. I had an emergent Type A aneurysm and dissection. Several complications but am doing very well. Two of my brothers went on to have elective Bentall procedures - one with mechanical valve and one with tissue valve. Anything you can do to have the procedure done in a controlled setting and to avoid the risk of dissection is best.  Recovery is very different for all patients.  Just know the biggest stress relief is found in a controlled setting.  Happy to answer further questions.

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    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------



  • 6.  RE: Preparing for surgery (Bentall procedure)

    Posted 11-11-2019 19:10
    Well... I seem to have a time clock ticking in my head towards the 12/19/2019 date. Tomorrow I meet with my parents and my wife, plus the surgeon to go over what he and I already met about. I wish I would be able to have this w/o my entire chest being opened again, but.. I would rather want to have them be able to see everything and if it reduces the margin for error - I am all in!  I am leaning towards the Edmunds valve, not the brand new one, the one right before it. I have read the older one is easier to put in that the Resilia one. My doctor told me what one he was going to use. But, I will ask tomorrow what he recommends. 
    Right now my main issue is sleep!!! I can't seem to sleep but a few hours and get woken up by my valve and it's making me have to get up and sit in the chair and try to sleep. It was so bad last night, I went back and forth about 4 times and had to leave work early to day to take a nap. I too agree that a staged/planned attack of surgery is way better than the ER environment. This Dr. Gabriela Aldea and Dr. Chris Burke as great surgeons and Gabe's the head of Thoracic Surgery at the University of Washington. I have met him before and he was AMAZING. More to come :)

    ------------------------------
    Brian tinsley
    sales engineer
    Comcast
    Everett WA
    ------------------------------



  • 7.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-29-2019 15:25
    A sad update - Brian passed away due to complications from his surgery. Please keep him and his family in your thoughts and prayers.

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    Karin Bertozzi
    Chapter 94
    Bethesda MD
    kbbertozzi@gmail.com
    ------------------------------



  • 8.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-29-2019 15:47
    Karen,
    I heard the bad news the other day; I came here to see if there had been an update and didn't see one. I went to Facebook to see if maybe Brian had a Facebook page where he'd given an update, and came across the link to the GoFundMe which explained he passed away unexpectedly several days after his surgery. It has been on my mind ever since--Brian's messages here gave me great comfort going into my surgery. I had no idea he had dedicated so much time to reaching out to other aortic disease patients with his website. He and his family are in my thoughts.

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    Scott Harn
    Portland OR
    ------------------------------



  • 9.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-03-2019 21:17
    Hello all,

    Thought I'd post an update. My surgery was successful, and I was shockingly out of the hospital four days after. The surgeon and his assistant both said the entire procedure went "textbook accordingly," which was a relief. First night in ICU was a blur and I don't remember much aside from having my breathing tube taken out and being fed ice chips. In the cardiac ward where I stayed after, I had fantastic nurses, so that helped. At home, my biggest challenge has been sleeping comfortably. I have slept in a recliner a handful of times, as well as the bed; the main problem is I can't seem to get fully comfortable in either, and I tend to sleep for about 4–5 hours maximum before I have to get up. I think it is simply my body telling me I need to adjust the position. I am also migraine-prone and have had several of these in a span of a week, which I think is related to neck tension from the awkward ways I am sleeping (the migraines have been striking in the morning).

    One strange symptom I am experiencing that I would've never expected: The front of my thighs, from the knee about midway up, are numb, and sometimes burn when I lie down. I talked to my surgeon about this and was told this is simply nerve pain, and it will sort itself out. The numbness is not so much a big deal to me, but I had an attack yesterday where my thigh felt like it was on fire four about 5 hours. I have also found that I have been excessively sweating at times; it comes and goes in waves, but is extremely annoying.

    Other than that, I've steadily felt better each day, and wanted to say thank you for the support I received here. It did help salve some of my worries. I'm looking forward to continuing to rebuild my strength; I've already noticed improvements in my walking and find myself less and less tired after longer walks.

    ------------------------------
    Scott Harn
    Portland OR
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  • 10.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-04-2019 08:46

    Good Morning Scott!

    So glad to hear your surgery went well and your recovery is progressing. You will ultimately transition from the recliner to the bed. Take some time. Interesting to learn about your thigh numbness and pain. I also experienced this and on occasion the pain was intense for hours. Six months post-surgery and I'm still experiencing some numbness. It seems to be less frequent. One piece of advise I'd like to offer is, the physical recovery and healing is extremely important, but don't forget the mental recovery. I overlooked this and have been struggling with some things I simply didn't expect. As a runner/athlete, not being myself has been extremely difficult. I've started to reach out to others with heart disease for support. Finding other runners who have gone through what we have has not been easy. Be sure to talk to other about how your are feeling, not just physically, but emotionally as well. Let's face it, we are surviving a very traumatic experience. In my case, my heart stopped 14 times post op/ICU. Though much of ICU was a blur, like yours, that experience is still will me. Particularly when the ICU team brought in the crash cart and placed pads on me. I will never forget how cold they were!

    All the best in your journey.

    Barry






  • 11.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-04-2019 11:27
    Good Morning,
    This is great advice Barry, thank you for sharing your experience. I agree with you on the mental healing. I'm now 7 months post op and have found the mental part of healing somewhat difficult as well. My surgery was quite a surprise as I'm very active and thought I was in pretty good shape. I didn't suffer a heart attack but my "widow maker" artery was severely blocked. Very thankful it was caught in time. I recently graduated from my cardiac rehab and now in the maintenance phase. Last month I started seeing a therapist who specializes in cognitive behavioral therapy to help me get through these new fears and anxieties I've developed. I've found it to be very helpful.
    Best of luck to you and Scott both on your continued recoveries.
    Michelle


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    michelle leverett
    Ridgecrest CA
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  • 12.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-04-2019 12:28

    Scott,

    I ordered a Bed Wedge pillow on Amazon https://www.amazon.com/Bed-Wedge-Pillow-Memory-Foam/dp/B07QNZCR4Y?ref_=ast_bbp_dp and a leg elevation pillow https://www.amazon.com/Ebung-The-Best/dp/B07KFPQTM8?ref_=ast_bbp_dp I was able to sleep so well I did not mind my dang CPAP

    I also had migraines, but only the light auras. However I had so many several times a day, it was frightening. My cardiologist told me it was the stress of the surgery and my body reacting. I believe it because now, 2.5 months later, no more migraines.

    Good luck in you recovery!


    Laurie Barrera



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    Laurie Barrera
    Boise ID
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  • 13.  RE: Preparing for surgery (Bentall procedure)

    Posted 12-04-2019 18:06
    Thanks Scott.. I am glad you made it out the other side. I am heading in for my BioBental procedure, replacement of root/valve, removal of my old dacron tube that has been there for 16.5 years since my original emergency aortic dissection type A repair. Now, my root is enlarged, my LV enlarged as well as my Infraction rate getting down there and finally shortness of breath. So, on 12/19/19 my surgeons will be a 2 man team at the University of Washington. Dr. Gabe Aldea and Dr. Christopher Burke. These are the top surgeons at the U of W and feel confidence in their proven track record. I am having flash backs of my original surgery. I remember 5 days in the hospital and not being able to leave until I had a bowl movement which thanks to my wife and help, I got out of there! I also remember, my son's bed being brought down stairs as I could not go upstairs, nor could I even take a shower or go to the bathroom w/o help. I am just hoping that 16.5 years later that things are going to be easier. I am hoping that X-strength Tylonol will do the trick. I do remember having to take a pill to help me sleep for the first 2 weeks if I recall. I am counting down the days and on 12/10 I meet with the anesthesiologist and right after that the surgeons to sign my consent papers and then it's 9 days of waiting! I am putting down my tennis rackets after tomorrow as I am not able to play at my level I am used to. And, to top things off, I had my ranking go down and thats depressing! But, I now have a target/goal to get back up there! All the best!

    ------------------------------
    Brian tinsley
    sales engineer
    Comcast
    Everett WA
    ------------------------------