Tormented over where to go for surgery--Charlotte, NC or Cleveland/Mayo Clinic

[HopefulHeart]

Hello to all my friends here.....

I live in Charlotte, NC with 2 hospitals to choose from, Carolinas Medical Center or Presbyterian. Both are good as I've been told. I have an ascending aortic aneurysm that's at 4.2 cm and a stable Bicuspid Aortic Valve. I will need surgery at some point on the aneurysm and the BAV possibly as well. My cardiologist is with Presbyterian and indicated he'd be comfortable letting the surgeons at Presby operate on his wife. But, Cleveland Clinic and Mayo Clinic have "World Renowned, #1 in the field" status. Both would be a long trip from Charlotte, NC. My uncle chose to go local in 1996 for his valve surgery in Florida and died in surgery. Knowing what happened to my uncle, I'm scared and leaning towards the long trip to the "World Renowned" surgeons. But my local Dr's indicate they are quite capable of doing the surgery in Charlotte where I live. Who do I trust??? Who do I choose?? I just don't know. Let me know what you all think. Thanks for your time.

 

[dick0236]

Unless your surgery is deemed to be a "special risk" surgery, I would be comfortable with a hospital in Charlotte that my local docs recommended. OHS has become a pretty standard surgery and most metropolitan cities have surgeons fully capable of doing it.

 

[Rachel]

Sorry to hear about your uncle! I'm with **** on this one - your choices in Charlotte sound good. I went to my local hospital in Grand Rapids MI when I could have easily gone to the great University of Michigan or to the world renowned Cleveland Clinic.....

I was so happy to have stayed local....my surgeon was EXCELLENT and my experience couldn't have been better - got my own hospital room, my husband was allowed to stay the night while I was there - had amazing at home follow-up when I was discharged from three different professionals...not to mention the follow-up care I've received from my surgeon these past two years....I've seen him three times now and each time he has answered every single question I have asked and has made me feel so very comfortable throughout this whole thing.

Oh - and I know about that trust thing - I've never had to trust so many strangers in my life - I'd say that when it's time go to talk to the surgeon - you'll know.

 

[HopefulHeart]

Thanks for your response. I have a lot of fear built up over this whole thing and it tends to paralyze me and my ability to think through all of this. So far, I have not been deemed a "special risk" for surgery. So I need to remember that.

 

[HopefulHeart]

Thanks for your response Rachel....you make a lot of good points and those are things I need to keep in mind when deciding. I'm finding it very easy to cave into the fear over all this and make the long trip to Cleveland or Rochester. Looks like you had the same surgery that I will need. So glad that it all went well for you.

 

[clay_from_nj]

Another vote here for a good local surgeon and hospital. My procedure couldn't possibly have gone better or easier anywhere else.

 

[DebbyA]

Hi Hopeful,

Other things to consider in deciding whether to stay local: are you in good health aside from the valve? How many of your specific operation does the surgeon do a year? Does the hospital have a dedicated cardiac ICU?
My surgeon told me that post-surgery care has improved enormously over the years, so your uncle's death is not necessarily a predictor for you.
(Charlotte is my home town, but I haven't been there in many years.)

 

[Guyswell]

I was very lucky to have excellent choices close to home and I would never argue with someone who chooses to stay close to home and family for their surgery. When I was trying to decide what to do, I studied the published statistical outcomes and mortality rates of various heart centers and chose to go to a high-volumn place that sees numerous cases more difficult than mine every week. One does not have to travel to Cleveland to have a successful surgery but I felt comforted by the thought that my surgery was "just another day at the heart factory" for my surgical team. I received excellent care, personalized attention, and did not feel like "just another face in the crowd" there. I was reassured in a weird way when a nurse galncing at my chart (in an unguarded moment) said "oh, you're just an AVR" before my second surgery.

 

[big_L]

I traveled ~ 7 hours be car to Rochester, as I wasn't comfortable locally (Quad Cities area), even though I would have likely been just fine.

It's not easy traveling for surgery. Lots of details and things that you can not worry about if you and yours are only a few minutes from home.

I think that you have to 'go with your gut'. Gather your information and make your decision.

 

[HopefulHeart]

Big L, Guyswell, DebbyA, Clayfromnj...........thanks to all of you for your responses. It is very helpful to me. You all make some good points. I think I'd be fine if I chose local if it were just an Aortic valve replacement.....it's my aortic aneurysm that has me worried the most. At this point I'm still unsure of the skill level of the local surgeons when it comes to repairing aortic aneurysms. I have a lot more information and stats to gather on that.

 

[DebbyA]

Sorry I didn't think of this sooner. Since you're in NC, you might want to check this out http://www.dukehealth.org/heart_center/programs/aortic_disease/treatments/index. At least you could probably get numbers to use as a baseline for comparisons.

 

[chalee94]

Big L, Guyswell, DebbyA, Clayfromnj...........thanks to all of you for your responses. It is very helpful to me. You all make some good points. I think I'd be fine if I chose local if it were just an Aortic valve replacement.....it's my aortic aneurysm that has me worried the most. At this point I'm still unsure of the skill level of the local surgeons when it comes to repairing aortic aneurysms. I have a lot more information and stats to gather on that.

i think the ascending aortic aneurysm still isn't that big of a deal. (from what i have read, descending is where the bigger risks are.)

but when my surgeon started talking about having to cut off the blood supply to my brain for 15-ish minutes and cooling my body down, i freaked out a little. i noticed U.S. News had ranked Baptist in Winston-Salem as the #2 hospital in NC while Forsyth (my planned location) was only ranked #8 (and there aren't that many big cities in NC). i talked to some friends in the medical field and they encouraged me that it wasn't that big of a deal. i asked my surgeon's office and he was used to doing OHS once a week on average last year (and he was in his 50s, so it wasn't his first rodeo by any stretch.)

and i'm still around, doing pretty well 11 weeks after surgery to put a dacron patch in to repair my aneurysm (ascending - it was at 5.0 cm prior to surgery) and a mechanical valve. but definitely do a little research and ask some questions until you get more comfortable. personally, i would not have wanted to fly back home after surgery...i was happy for a short ride in a car. IMO, if your health care or wallet allows it, i definitely would not feel a need to go farther than duke in the triangle.

 

[Jkm7]

Not only do you need to consider the trust you have in your surgeon's skill but the aftercare in CICU and step down heart floor is so very important. Perhaps if you made a visit to the floor you could get a feel for what confidence you might have in the care team. Once the surgery is over, it is the nursing staff, the techs, the surgeon's support who take care of us hour by hour. You want to know they have seen it all and done it all and nothing is new or 'unmanageable' to them.

I was very fortunate both of my surgeries that my 'local' heart hospital was Massachusetts General so cannot say if I would have traveled, otherwise. I think I likely would have gone to a major heart center, if possible.

Considering the sad loss of your uncle, it is understandable your unease but it is so important for you to recognize how far heart surgery has come since then. My first OHS was 2003 and my second just four years later with same surgeon in same hospital and some of the same nurses and I saw there were changes in my care in that stretch of time. It keeps getting better and better. Many of us are home in four days which is jaw dropping, when you really think about it.

 

[Agian]

I would've thought valve replacement is a bigger deal than aneurysm repair. Do they wrap the Dacron around them or cut the dilated bit out and replace it with the Dacron?

 

[Guyswell]

Agian,

I don't pretend to know all the various ways aortas are repaired. I can tell you that in my case, the aneurysm in my ascending aorta was not affecting my aortic root or the area immediately around the origins of the coronary arteries so my surgeon left the root and the coronary arteries alone. My surgeon placed a graft (tube) inside my aorta and re-wrapped the native aorta around the graft to minimize scaring adhesions on the outside.

 

[Agian]

Fascinating. There must be a number of different methods in use.

 

[scott.eitman]

I will start with I am a huge fan of my local hospital...CCF. Just so you know my bias.

As for picking where to go. I can think of many reasons why you may want to look around:
- Are you comfortable with the surgeon and their EXPERIENCE with the procedure they are going to perform.
- Is the surgeon who is great at bypass, but lacks experience with valves.
- is the surgeon going to do the procedure the most up-to-date way...or are they going to stick with what they know.
- Do you have a preference for a specific name brand valve and the surgeon does not use those.
- Will the surgeon be able to handle a problem...are there back up surgeons around if he needs their assistance.

Stay well
Scott

 

[dave1939]

I had a similar question before my surgery. I was trying to decide between the Cleveland Clinic and the local hospital, Mission in Asheville NC. I made appointments with both places. However, after talking to the surgeon and his staff here in Asheville, I cancelled the Cleveland appointment. We (my wife and I) are very happy with that decision. the surgery went fine and there were no problems at all.
When I was considering Cleveland I made an appointment with Dr. Gilinov because of his excellent reputation and experience. Since that time, I have read (I think on one of these forums) of someone's experience. They were told when they had already traveled to the hospital that Dr. Gilinov was not available and teh surgery would be done by someone else. I don't know the outcome, but I do know that I would not have been very happy if that happened to me.
In any case good luck and there is probably no wrong decision.

 

[kimcdougc]

Sorry about your uncle. I interviewed (3) doctors in the Seattle, WA area for my OHS to replace my aortic valve. Funny, I chose the oldest (62 years) one that was the most up to date after the research I did. He was the only Dr. out of the three who would use the On-x valve which is what I wanted. So, do your homework, interview a couple of Drs. at least. Ask lots of questions and go with your gut. I know I do not regret no travelling all over to have this done as it was much easier for my family to come see me and the trip home was much shorter! No wrong answers for this one. Go with your gut. Good luck with your decision.

 

[HopefulHeart]

THANK YOU to all of you! Your advice is so important to me. You all gave me lots of good ideas and in fact I will be writing them down and taking them with me to my DR appointment in a couple weeks. Just found out my aortic root aneurysm has gotten larger, possibly a 4.8. It's been at 4.2 for the last 6 years. Surgery looks likely and it looks like it will be soon. So your advice is very timely. My gosh......I can't believe this is happening. I just assumed it wouldn't be for several more years. I've cried all day and have no more tears left, so I'm going to put my tough girl pants on and just face this thing. Still don't know if I will have the surgery done in Charlotte or not.