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C

COfireftr

Active member
Joined
Feb 28, 2016
Messages
35
Location
Fort Collins, CO, USA
Hi All,

I'm in the process of shopping for a surgeon/hospital to do my procedure. I'm 40 y/o BAV with severe AI and some symptoms. I live in Northern Colorado. I met with a surgeon at my local regional hospital who is ready to operate, but his choices seem limited. He obviously wants to put in a mechanical valve based on age. I'm not afraid of anticoagulation, but it's not an option for me as a Firefighter. I'm after an aortic valve repair if possible.

I was referred to a surgeon at the University of Colorado 1.5 hours away. They are a top 50 center. I liked him and he is excited to give the repair a shot but I'm still wondering if I should reach out to a specialty center like Cleveland Clinic for my best chance with this slightly more technical procedure. He feels 50/50 my valve will take a repair. This surgeon is doing quite a few repairs and seems very knowledgeable but I don't get the impression it is a common procedure for them. He said they are doing 15-20 a year right now. He will do a David Procedure with BAV repair and would do a full sternotomy. My backup will be tissue valve. For piece of mind I feel I at least need to explore my options before deciding to commit and set a date.

To those of you that did travel out of state for surgery. What made you decide to do so? Do I have to travel there to get a consult or can they review my echos and make a determination to take on my case remotely via phone or video conference? Do I just call the Resource and Information Nurse to get the ball rolling?

I see they do the "virtual second opinion" for a significant out of pocket cost at Cleveland, but I don't know if this is considered second opinion, as I agree with the diagnosis and understand my options. I just want to know how confident they feel in a successful repair and if I can get someone to take it on.

Did anyone have insurance issues? It appears I have a lot of "in network" options outside my area, but those insurance company websites aren't totally clear either.

If anyone has surgeon endorsements I'm all ears.

Thanks so much for your time!
 
I live in Denver. Had my first procedure (medtronic mosaic aortic tissue valve to replace BAV) here in November 2013, at Presybterian St. Lukes. The valve began to leak during the first year, and by last spring (a year ago: about 2.5 years after the surgery) I learned that the new valve had to be repaired or replaced. The test results were ambiguous, and there was disagreement here among the docs who reviewed my results about just what was the problem--was I getting leakage around the valve (where it had been sewn in), which would only require a repair; or was the valve itself failing? An interventional cardiologist at UCH whom I came to know and trust--Dr. John Carroll--was the one to recommend that I go to the Mayo in Rochester for a second opinion. He sent my test results to the head of cardiology at the Mayo, and within a week I got a call from that doctor who told me he thought I probably had both kinds of leaks. He recommended I come to the Mayo for several days of tests, which I did last July. The result: my failed tissue valve had to be replaced--and this time I chose an On-x mechanical at the urging of the Mayo docs. Good luck!
 
George and my story are similar. I went down in AZ before first valve replacement and they flew me to Las Vegas(emergency cardio was from California that recommended I go to LV) I had a Mosaic porcine valve. Second valve replacement done November 1, 2016 at Mayo.

Excellent care, surgeon, and staff. I had no trouble with insurance as my 6000.00 deductible had been met long before I got there. I have one bill that keeps coming to me but I am sure it was for blood work they did when they asked me to join a study. It was for genetic testing and my insurance will not pay for that. Oh and neither will I as they are to pay for all the tests for study. All 26 vials of blood.

Good luck with whatever choice you make. Make the choice and feel confident in it.
 
Thanks so much to both of you! I really appreciate you taking the time and sharing your experiences. So glad you are both doing well! At the beginning of this journey the thought of traveling cross country for a semi frequent procedure that can be done close to home wasn't even an option. The more I get in to it, though, I see how much opinions and experience levels really do vary. That's why they call it the "practice of medicine", I guess. It's not to say that the local providers wouldn't do just as good a job or that the big name, highly advertised surgeons and hospitals won't make mistakes and are always what they're built up to be. But, you really do have to be comfortable with the decision and have to explore. It is a big purchase and "investment" after all.

So, I decided to bite the bullet and sent my records to Dr Svensson at Cleveland. We'll see what they say. I appreciate the recommendation of Mayo. They will probably be my next stop if CC doesn't pan out. I had already started the process with CC so don't want to juggle too much. Take care!

Eric
 
Thanks so much to both of you! I really appreciate you taking the time and sharing your experiences. So glad you are both doing well! At the beginning of this journey the thought of traveling cross country for a semi frequent procedure that can be done close to home wasn't even an option. The more I get in to it, though, I see how much opinions and experience levels really do vary. That's why they call it the "practice of medicine", I guess. It's not to say that the local providers wouldn't do just as good a job or that the big name, highly advertised surgeons and hospitals won't make mistakes and are always what they're built up to be. But, you really do have to be comfortable with the decision and have to explore. It is a big purchase and "investment" after all.

So, I decided to bite the bullet and sent my records to Dr Svensson at Cleveland. We'll see what they say. I appreciate the recommendation of Mayo. They will probably be my next stop if CC doesn't pan out. I had already started the process with CC so don't want to juggle too much. Take care!

Eric
 
I went to Mayo in Rochester at the recommendation of the heart hospital in South Dakota, also rated in the top 50.
I like my cardiologist, and trust him even more after he recommended that I go to the Mayo Clinic, I have to second the thoughts that this place is amazing. Yes the Cleveland Clinic is top rated, but the Mayo Clinic is or was, number 2. That and I did not have to go to Cleveland. ;).
 
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