Out of town surgery question and hello from a new member

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Thank you

Thank you

I've gotten wonderful feedback through this thread and a few private emails. I had considered limiting my consults to a local surgeon and Cleveland. Now, while I don't want to reach a point of diminishing returns, I think it will be worthwhile to investigate a couple of other possibilities in California.

Thank you!
 
Just wanted to say welcome and best of luck, hope you get some answers with the transesophageal echo, take care.
 
If you decide to investigate the Cleveland Clinic further, please contact Gosta Pettersson. He has an incredible resume and there are more than a few folks I have met on here that can attest to his surgical skills.
 
Thanks, and...

Thanks, and...

ctyguy said:
If you decide to investigate the Cleveland Clinic further, please contact Gosta Pettersson. He has an incredible resume and there are more than a few folks I have met on here that can attest to his surgical skills.

Thanks. Actually, I'll be consulting with a different surgeon, Mihaljevic (they all seem to have stellar reps) who, according to the cardiologist I've spoken with there, has focused particularly on the question of when to intervene with non-symptomatic people. I also, now, am trying to make sure I speak with someone who can really opine on whether I might be a candidate for the Ross procedure despite my advanced (hee hee) age.

L
 
The Cardiologist I met with at C.C. is Brian Griffin, very well respected who specializes in valve function. I asked about the Ross Procedure also because Im 42, and in very good health other than my bum Aortic Valve (at the time). He told me that they were on the fence regarding this procedure simply because of the fact that your taking a perfectly healthy valve (pulmonary) and moving it. When I asked Dr Pettersson he told me the same thing. Both recommended mechanical valve replacement. I wasn't in a position to do alot of surgeon shopping, I needed my valve addressed and addressed quickly. Both of the cardiologists I met with thought I was high-risk for sudden death. The mini-AVR proposed by Dr Pettersson with the On-X valve seemed to me to hold the most promise for my longevity and for not needing to go through multiple surgeries. I'm hoping for another 42 years and I REALLY hope this procedure is one-and-done.

Im very happy with my outcome, tomorrow will be 4 weeks since my surgery and Im doing 3 miles of walking on the treadmill now daily, no pain killers, and am really starting to feel pretty good. I realize I have to take Coumadin and I have to give up the Ultimate Fighting in the backyard and Im OK with that.

Since my surgery I've seen more than a handful of people on here who have had the procedure and seem thrilled with the outcomes and I am thrilled for them. If I hadn't been told I was in danger of sudden death I might have continued my research on the Ross procedure, for the very same reasons you are looking at it. The only drawback that I've read about regarding the Ross is that eventually the homograft(which replaces pulmonary valve) may require replacement, but this is supposably a much simpler surgery than an aortic valve reoperation.

I will be very curious to see what Dr. Mihaljevic's opinion of the Ross procedure is.

Best of luck and I look forward to hearing about what you find out !
 
ctyguy said:
The Cardiologist I met with at C.C. is Brian Griffin, very well respected who specializes in valve function. I asked about the Ross Procedure also because Im 42, and in very good health other than my bum Aortic Valve (at the time). He told me that they were on the fence regarding this procedure simply because of the fact that your taking a perfectly healthy valve (pulmonary) and moving it. When I asked Dr Pettersson he told me the same thing. Both recommended mechanical valve replacement. I wasn't in a position to do alot of surgeon shopping, I needed my valve addressed and addressed quickly. Both of the cardiologists I met with thought I was high-risk for sudden death. The mini-AVR proposed by Dr Pettersson with the On-X valve seemed to me to hold the most promise for my longevity and for not needing to go through multiple surgeries. I'm hoping for another 42 years and I REALLY hope this procedure is one-and-done.

Im very happy with my outcome, tomorrow will be 4 weeks since my surgery and Im doing 3 miles of walking on the treadmill now daily, no pain killers, and am really starting to feel pretty good. I realize I have to take Coumadin and I have to give up the Ultimate Fighting in the backyard and Im OK with that.

Since my surgery I've seen more than a handful of people on here who have had the procedure and seem thrilled with the outcomes and I am thrilled for them. If I hadn't been told I was in danger of sudden death I might have continued my research on the Ross procedure, for the very same reasons you are looking at it. The only drawback that I've read about regarding the Ross is that eventually the homograft(which replaces pulmonary valve) may require replacement, but this is supposably a much simpler surgery than an aortic valve reoperation.

I will be very curious to see what Dr. Mihaljevic's opinion of the Ross procedure is.

Best of luck and I look forward to hearing about what you find out !

Congratulations on such a wonderful recovery and level of activity after four weeks!
L
 
I've thought about it further and I think the exact words both Dr Griffin and Dr Pettersson both used were "With the Ross you potentially become a two valve patient instead of a one valve patient". I know there have been many success stories with the Ross Procedure but given both of their expertise and my timeline , that was enough for my wife and I to both say mechanical was the best choice for me. But again, that is MY decision. Everyone is different and as you will see on here there are Ross procedure recipients who are thrilled with their outcomes.

The fact that you need a procedure bites to begin with. Any surgical solution is going to have drawbacks, none are risk free. But the advancements being made are just incredible. Which ever way you go the bottom line is get yourself a top flight surgeon, follow their recovery instructions, and then live a life that includes a heart healthy diet with exercise and you can more than likely look forward to many more years.

Good luck, if you choose to have your procedure at C.C. I know your going to be thrilled with your result once you at the 4 week mark the same way I am.
 
Thanks, Ctyguy

Thanks, Ctyguy

You seem to have an extremely sane attitude about all of this - and what you say is a good reminder to keep the big picture in mind. This is very helpful to me, and thanks very much.

One thing I'm curious about - you say that both surgeons at CC thought you were at high risk for sudden death. What was that based on? The reason I ask is that right now everyone seems to think I'm at low risk (at this moment) because I'm considered asymptomatic - and therefore I have to take it all very seriously but I still have some time to plan. However, my sense reading some of the stories on this site is that people often go from "nothing immediate" to "get your ass into the hospital." So even though I'm taking the next few months to explore options and timing, I have some nervousness about whether something's going to intervene. (Very happy that I now have an appointment in Cleveland for mid-May. They could have taken me sooner but I wanted to complete some testing here first.)

L
 
I had an instance about 10 months ago where my dogs got loose. Keep in mind I go to the gym 3 to 4 times a week and do aerobic work. I go running down the street one way, my wife goes the other. Im yelling and jogging and after about 2 minutes I simply couldn't catch my breath. I stop and Im standing simply trying to get my breath back and then Im down on one knee and then Im blacked out on the sidewalk. I wake back up about 10 seconds later tops. I chalk this up to a panic attack. I had a similar episode in the gym in a high impact class several months later but I stopped, leaned against a wall and didn't actually pass out. I recovered but I stopped for the day.

It wasn't until 6 months later I go to the cardiologist because Im frustrated that I can't run for any significant distance without discomfort. Im watching Biggest Loser and I see 300+ lb guys running longer distances than me and I've been going to the gym for 10 years ! These guys are only 4 weeks with exercise !

The cardiologist looks at my EKG and says "That doesn't look right, lets get an echo on you". He looks at the echo and sees my problem is the aortic valve. The measurement of the valve opening he estimated at about .9cm, normal is about 3cm. He also says the gradient (flow of the blood through the valve) is running about 110, normal is about 20. He tells me that the episode with my dogs was my first symptom and Im very lucky it wasn't my last. He also tells me that if he takes 100 people with my condition and comes back in 2 years, at least 1/2 will be dead. He said normally he would put me on a treadmill for a stress test but he said its very possible I could drop over dead right then and there, hence no stress test.

That was enough for me and I was on the horn to the Cleveland Clinic the next day lining up a appt with a cardiologist (Dr Griffin) for early the next week. We do another echo and he tells me basically the same thing, severe aortic stenosis. Both also told me I had a bicuspid valve which I wasn't aware of.

I had done some research between the two cardio appointments and at least knew what my options were (bovine, mechanical, Ross procedure). We talked through all 3 and mechanical was the way I thought was best for me. Bovine was looking like multiple surgeries down the road, not cool. Ross procedure makes me a two valve patient potentially, didn't like the sound of that one bit either. Mechanical could be done as minimally invasive, good chance of being one and done, and with the On-X there was potential down the road for the elimination of the Coumadin. No promises but maybe. So that pretty much settled my choice. I didn't like ANY of the choices but if I wanted to see my grandkids grow up, I had to make a decision.

So after those two kicks in the teeth I knew I needed to get a plan in place and to do so quickly. The last thing I wanted to do was stew on this. I had contacted Dr Pettersson's office prior to my cardio appt with Dr Griffin and I met with Dr Pettersson a few hours later the same day. He told me I could wait a few weeks longer if I wanted to as long as I kept my heart rate down, no exercise and no exertion. Given how I was freaking out at every little sensation I was feeling in my chest and that I knew what I needed and had settled on a plan, I thought it was best to just get in the queue as quickly as possible and get it over with. In my research I could see the mortality rates for this type of surgery were very very low so I was confident that I would make it through, I came to terms with that pretty quickly. Im the type of person that once I settle on a decision I want to get after it. So that is what I did !

Today is 4 weeks since my surgery. As I type this I think I was still on the table. Recovery has gone pretty well so far, I just did 1.5 miles on the treadmill and got my speed up to 3.5 mph. My heart rate still isn't getting much higher than 110 but that is by design. I don't want to push anything until my cardiologist tells me to do so. He is aware of my treadmill usage and said its ok to walk, even briskly but to listen to my body. I really got started this week and am doing this now two times a day. Hopefully in 2 weeks when I see my cardio he will clear me for work and cardio rehab. Im anxious to see what I can do on a treadmill, can't wait to be able to actually run and not have to stop after 2/10s of a mile or 1/4 of a mile.

Hope all that helps, will be anxious to hear how your appointments go and what your ultimate decision is.
 
This is all very helpful - and also encouraging. You sound like you're really able to build on the health and healthy lifestyle you had to start with!

I'm impatient to get all the data and perspectives but it will take some time. I have an appointment in Cleveland in mid-May. I'm doing some more testing locally first (had a heart cath a few weeks ago, will be doing a transesophageal echo in late April and possibly one more stress test). I don't want to burn out on consults but probably will try to consult with at least one more surgeon in California and, depending on what I hear in Cleveland, maybe someone who does a large number of Rosses.

I'm away for the weekend, and after the next few hours won't be near a computer or cell phone for a couple of days!

Thanks again for your perspectives and inspiration!

L
 
Getting as much information as possible will allow you to make a better decision. The fact that the cardiologists are willing to put you through a stress test says alot. Sounds like you do have some time to spend doing research. If you can find someone in Cali that your comfortable with and gives you piece of mind then you should go for it. C.C. is a great hospital for heart surgery but they don't have the market cornered. Im sure there are tons of just as great surgeons and facilities closer to home for you as well. Given that you have time to work through this it sounds like your in a win-win situation no matter what.

Good luck !
 
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