Rex's Posts

Hey Richard! Thought about you several times. For some reason I was having a hard time getting back on here. Seemed like no one else was responding to my posts. Really appreciated your help in locating Dr Boulton. I seem to still be struggling most days. Getting an appointment with my cardiologist soon. Not sure whats going on. Hope you're doing well.

Hi Rex, I had mitral valve "Barlow's disease" with also Borken chord. I had minimally invasive repair with goretex chordae replacement, maze and LAA closure. Maze is here to prevent future AFib, and LAA closure to prevent stroke from blood clot forming in that particular place (the appendige). Operation went smoothly. It was quite complex repair cause one of my leaflets was hypoplastic, but that is a rare thing. Your plan sounds good. But if you are unsure, ask even for a third opinion.

Hi Rex. I’m almost 17 months post-mitral valve repair. My problem wasn’t Barlow’s; it was likely a congenital leak aggravated by endocarditis. I needed broken chordae replaced by Gortex. That’s a common and very straightforward repair for mitral valves. If you end up with a repair you will almost certainly get annuloplasty too - that’s a ring sewed around your valve to keep it from stretching open. I wanted minimally-invasive surgery but I ended up with a sternotomy. I am now happy I did. The surgeon needed to fix my leaking tricuspid valve while he was in there and he didn’t expect to - if he had done a minimally-invasive approach he would not have been able to do the tricuspid valve at the same time. My recovery was painless and I have no lingering issues. Others here who have had minimally invasive surgeries will likely offer their experiences. All I can offer is that if I had to do it again, I’d have another sternotomy without reservations.

Rex - I had Barlow's disease and a minimally-invasive mini-thoracotomy for the valve and chordae repairs. In the name of full disclosure, my connection to bypass was done through the artery above my thigh, so there is more than one area to heal. My surgeon froze the nerves near the mini-t incision, so I didn't have any post op pain. I did have numbness, pins and needles, and occasional sharp momentary sensations in my side and back in the year that followed. The entire process was very tolerable. I was in and out of the hospital in 3 days and would absolutely do it again. However - make the decision that's right for you. Just find a surgeon who does a high volume of the procedure with success. Do your homework - it will make all the difference in your confidence and attitude on game day! ❤️

I am happy with mini thoracotomy, but would've been happy with sternotomy, too. Sternotomy hurts less, cause there's less soft tissue and nerves cutting, but it causes longer discomfort, takes longer to heal... Each has its pros and cons. The only thing that is important is quality of repair and experienced surgeon. My only wish was a successful repair. I got less that 100% closure of leaflets, which is not rare in Barlow's due to it's complexity to "line up". It was a bummer, but I know I should be grateful that I didn't get mechanical valve, you know.... My story is extra rare as this one leaflet was short, so K should be happy with the result even though it is not perfect. I have mild regurgitation left. I need only yearly echo now. I am 6 months post-op and feel fine, finally I feel like myself again. I took 3 months of cardiac rehab which I highly recommend. All in all, phisically and mentally really challenging process that made me a stronger person I hope, certainly one that values each moment.

Thank you all for sharing your stories. Everyone seems to be in consensus they’re glad they had their surgery. I’d be lying if I said I wasn’t dreading it. It sure helps to hear other stories. Especially ones where you guys are months or years out and still doing well. I’m sure I’ll have more questions in the future! Hope everyone has a happy and blessed Easter.