Steve's Journal

Susan Lynn  Travel. No question about it. I only had to go about 2 hours (by car) to the Philadelphia area, but I considered surgeons as far away as southern California. There is no substitute for experience (and an outstanding result); traveling is a minor inconvenience. Best of luck with your decision.

John Morales  Hi Steve, Options are always good glad you have some im a veteran and we don't really get to choose , IM in New Jersey area my VA Hospital here did not have a thoracic Surgeon so they sent me to NY where I met Dr Grossi who was assigned to me , I discovered he has 37 years of experience was a professor of surgery @ NYU and everyone i asked said hew was the best, I have met him twich and he was very confident answered all my questions and said he was there if I had any questions so I feel lucky im sure you will find some one you can be comfortable with we all cant go to the Cleveland Hospital or to Mayo im sure there are Dr in your area who will put you at ease all the best my surgery is on Mach 11th

Kaaren Carone  Steve, I am in Phoenix, too. Will probably have valve repair in 2019. My research so far showsMayo to be pretty good—BUT—there are better hospitals elsewhere. I think the key is the surgeon and their team but... I will be interested in your decision.

Barbara Wood  I have an hmo with limited options, but was able to find a perfect surgeon for my needs close to home - there are great surgeons everywhere. How about the Phx Mayo? I had cancer treatment there - great place.

Lisa Guinan  This is a really good question. I have a small but very reputable heart institute an hour from my home in central Illinois. I chose it because I’d read good things about them and I also had a friend who was a cardiac nurse there. It was very easy for my family and friends to give me support. I could’ve traveled to Chicago to a much larger facility but have no regrets staying near home.

Louanna Miller  Find the best surgeon whom you are comfortable with and have confidence in his/her ability to successfully perform your surgery. Look at how many they do annually and for how long they have been performing the surgery you need. I traveled 3 hours to have one of the finest if not the best in the nation complete my surgery. Northwestern Medicine has people fly into Chicago from all over the US to have Dr Patrick McCarthy perform their surgery. His and his colleagues reputations are remarkable. They will also schedule a pre-surgery appointment and perform the surgery a day or two later. He will allow you to fly home also.

Herb Greenberg  Steve, I'm in San Diego and will likely go to Cleveland for bicuspid aortic valve/ascending aneurysm. Short of an emergency I'm opting for high-volume surgeons who focus on the aorta. There are several at the C-Clinic.

Judy S  Hi Steve, it never occurred to me to travel out of the area. Because I live in the San Francisco Bay Area, I just felt that I would get high-quality care, and I lucked into selecting a fantastic surgeon who specializing in my type of surgery. It has been really interesting to see how many people do travel by reading this website. My cardiologist and I discussed it, and he said he does refer complicated cases to places like the Cleveland Clinic. Whichever way you go, choose someone who has the outcomes and the ability to instill great confidence in you.

Rita Savelis  There really isn't a best surgeon, just good surgeons. You can get great care in many places. You'll make the choice that is right for you.

Marie Myers  I was far too overwhelmed by the whole diagnosis to travel. However, I did find an excellent surgeon in my area, and came through the whole ordeal with a great result. You have to be comfortable with your choice though, so research all that you feel you need to research.

John Isham  Steve....I personally am blessed to live 30 minutes from one of the Top Heart Hospitals in the World so it was a no brainer to go to Duke. If I lived in “Dead End, USA” then YES...I would seek out the BEST Surgeons in the Country. You live in the Phoenix area so I am sure you have a lot of top notch Cardiac Heart Surgeons near you. Good Luck!

Phyllis Petersen  I know that there have been people on here who had their surgery in Phoenix, but off hand I can't remember who. I had mitral valve repair and was a good candidate for minimally-invasive, robotic, so traveled to Cleveland Clinic from Tucson. Fortunately, I had a cousin about an hour and a half from CC, so I stayed with her for about a week after getting out of the hospital. I met other people who traveled without that advantage. If I remember correctly, Mayo and Banner in the Phoenix area both had patients who were happy with their results.

Dan Vechiola  Hi Steve! Using the guidance from this site, I used the US News & World Report Cardiac Hospital Rankings which led me to Patrick McCarty at Northwestern Medicine. I had surgery a few weeks after Louanna. This surgery is a life changer so I would recommend travelling to the best surgeon/hospital you can find which works for you and your family. I have seen Dr. McCarthy interviewed numerous times and he says that whichever surgeon you go to make sure they have performed thousands of the surgery you need. This is a very precise surgery and those that do hundreds of these surgeries each year get very good at it. Best wishes!

Willie Radl  I live about an hour away from the Mayo Clinic in MN and had a great outcome. I think they have a campus in Phoenix area as well, Mayo is one of the best hospitals in the world, I would assume that the Phoenix campus has a similar level of excellence to the Mayo clinic in MN. Depending on your surgery, I would think you would be able to find a capable surgeon in Phoenix. I would say that by the time I left the hospital the 1 hr car ride home was no problem, could have traveled a lot farther. I could have handled a short/medium flight. I would also say that there was some comfort in knowing that my surgeon and hospital where I had the surgery was not too far away in case an issue came up a few days after being home. Just something to keep in mind. I have only been on this site now for about a year but have seen a lot of people receive successful surgeries all over the U.S. at many different hospitals. It all comes down to what you feel comfortable with.

Jill Mullikin  My son’s surgical report mentioned reducing his temperature during his bicuspid repair and aneurysm repair surgery. Honestly, that part freaked me out less than him being on the bypass machine though I should mention I do not know to what degree he was cooled. This will sound horrible but there came a point for us that the less we knew the better and we put our trust into our surgeon.

Marie Myers  Are you talking about having an aortic arch replacement? They do use more aggressive cooling during an arch replacement. Cardiac surgeons use cooling in pretty much every heart case requiring bypass. I had an AVR, root, and ascending aneurysm resection, and yes, I was cooled. It protects both your heart and brain. It is really a standard part of bypass. I

Catie B  My story is similar to Marie's. They never talked to me about that detail, but I understood it was just part of the OHS.

Steve Waddick  Thank you for your comments. I was told my ascending aneurysm goes up far enough into the arch that at some point during surgery they will have to shut off the bypass machine in order to fix that portion of the aorta. The surgeon mentioned in order to do this, since there would be no blood flow through my body for up to 30 minutes, they cool the body off to slow down brain activity and the need for oxygenated blood.

Doran Herritt  Best of luck Steve. Time is a great thing. They are making steps in medicine all the time. The longer you are able to function safely and monitor your situation the better off you are. Take care. Drn

Tina Maroon  Best of luck to you Steve. It is great news that your not having surgery right now. But I hope the right decision is eventually made for you and that you get the help that you need.

W. Carter  I was told by my surgeon that 5.5 cm on the aneurysm is the cut off point to operate. So at 5.1 cm it was still too small for operation. Mine was 5.7 and I worked for another year (w/a lot of heavy lifting) before surgery without any problems of dissection.

Doran Herritt  its good to have a plan. My cardiologist referred to when to have surgery as an art, especially when you are asymptomatic. Good luck. I hope they get you some answers soon. Take care. Drn

Liz Burroughs  I went to the surgeon that my cardiologist recommended. The surgeon said that I should have my surgery (mini mitral valve repair) sooner rather than later in order to avoid permanent damage to my heart. I'm glad that I took his advice & that my surgery (which was successful) is behind me now. Good luck & I hope you find the answers you're looking for soon. Liz

Doran Herritt  Good point. Your heart does compensate by enlarging. You do want to do it before it gets too far out of spec. Your cardiologist will run tests to decide where your heart is and that will help guide the decision of when. Take care. Drn

Tina Maroon  Cleveland Clinic Dr. Soltesz. That is who did my Aortic Aneurysm surgery and my Aortic Valve and Tricuspid Valve repair in June 2015. He is the best!! Wishing you luck on finding a good opinion

Pat Bluemel  My Surgeon and Cardiologist both advised against anymore ink post surgery (bio valve). I asked if I did get any new art if I should pre med and they then advised not to do it and that no, pre med wouldn't be prescribed. I am still trying to figure out if I want to risk it.

W. Carter  I have read where some people on Warfarin get tattoos and some people say no. I have a lot of tattoos all gotten pre surgery. The thing that would worry me more than the excessive bleeding is getting an infection (endocarditis) that would go to the valve. I have had quite a few infections from tattoos that I treated myself with triple antibiotic ointment. Like I said this was all pre-op and my son and I would tattoo each other with our own equipment. Even using new tubes and needles you can get infections.
http://www.healthline.com/health/endocarditis#Overview1

Enrique K  Yes you can get infection I would be very careful. My cardiologist said no dentist for 6 months and when you do you need to be on antibiotics. You don't want to risk getting an infection with the valve.

Clare Auten  I have no tattoos but my husband got one on his chest to commemorate my surgery. My name on a real looking heart with a mechanical valve. It was easy for me as it is on him. ;)

Tina Maroon  I know I cannot get my teeth cleaned for 6mo-1yr and no procedures for a year. So I don't know about tattoos though.

Billy G  The way I look at things, whether it's good news or bad news, I always try to make it good news. Things are what they are, and there will be many challenges, curveballs, ups, and downs. There are only a few things I can control, and staying positive is one of those things I have been trying to control and will continue fighting to control. That doesn't mean I won't always do so, but I am sure as hell trying.

I know I shared I was pretty bummed when my surgery got pushed back 9 days because insurance didn't pre-authorize it in time. I was in a pretty crappy mood the rest of the day, but I got over it by the next day and made use of the extra days to line up more things to keep some of my coding contractors busy on projects while I'm in surgery and recovering.

In other words, you can't completely control the fact that your surgery got pushed back against your wishes. Maybe you would have preferred to just have surgery rather than having the extra time to research things, but the surgeon made the decision for you that surgery will get pushed back. Since you have that forced extra time before surgery, there is no reason not to research more, right? :)

Elaine Cutri  That's an interesting development. It usually means something is not as severe as originally thought. I noticed one of your issues is an aneurysm. Do know how big it is? This may be your opportunity to get more information. I had my last surgery when my ascending aorta was 5.1 cm. Best wishes!

Steve Waddick  Hi Elaine, my ascending aorta is currently at 5.1 cm which is why it worries me that they suggested putting surgery off.

Elaine Cutri  Did he say why it wasn't "the right time"? I understand why you might be worried. You need and deserve clarification.

Steve Waddick  basically said since I wasn't having any symptoms and because I was so healthy didn't want to take the risk of surgery.

Elaine Cutri  You've got a BAV, the surgical threshold for patients like you and me is 5.0 cm (per JAMA article published in 2013), for other patients it might be 5.5 as high as 5.5 cm. It sounds like you need another opinion. There should be some excellent choices in Tucson, if not their, Los Angeles or Cleveland Clinic. I had OHS to replace my aortic valve in Tucson in 1993. My last surgery was at the Cleveland Clinic last May. That's my 2 cent opinion!

Enrique K  Steve, I had my surgery when I had my ascending aorta at 5.5cm that was severe but you don't want to get to that stage. I would get another opinion for sure. Read my journal when you get a moment.

Michael Shaughnessy  I didnt get time to think about it. My aneurysm wasnt discovered until 5.9-6.0 cm. i have the intraop pictures. Looks like a baloon ready to pop. I too would get another opinion at 5.1. My surgeon didnt like waiting much after 5.0. The best time is BEFORE symptoms. I have a friend who dissected in the gym. He had several strokes and several surgeries to survive. He was 46 at the time. Still struggling 4 years later

Kelly Weisgarber  Hi Steve,
Thanks for the post. I think its a good idea to get another opinion. If they can see you at the Clinic at least it would put your mind at ease. The first time I met with Dr. Svensson he wanted to wait 5 months and do another echo to compare. After the wait the echo wasn't that different, but my symptoms have worsened. So my cardiologist (Dr. Stephens) thought it was time. Good luck on your journey,
Kelly

Steve Waddick  Hi Kelly, Do you mind if I ask what symptoms you were/are having? I think that is what has my Dr's questioning if now is the "right" time since I don't seem to be experiencing any of the symptoms that someone typically has with bicuspid aortic regurgitation.

Kelly Weisgarber  I have been having many palpitations and periods of heart racing along with light headedness. Can't seem to change elevation without being very light headed, when I stand up doing laundry, or I'm pulling weeds, anytime I stand... I feel like I may faint (but haven't), Shortness of breath comes and goes. The other symptom, and most worrisome to me, is the last 4 months I have had pulsatile tinnitus (ringing to my heart beat) in my left ear... no one can tell me for sure if its related to the valve, but it may be? It's like I feel the pulse very strongly in my head. I did have an MRI with contrast of my head and it was normal.
I hope this helps, Dr. Stephens just thinks my body is being affected by the lack of blood flow, I do think some of my symptoms are a little out of the ordinary.
Good luck

Billy G  Steve, I commented some about valve choice in general in our other thread, but a new note that applies to this post is that from what I've read over the last few months, I am not sure if anyone can tell you exactly what noise you may experience from the On-X valve, or any mechanical valve for that matter. Based on the accounts I've read, it seems to vary from person to person, which may be based on each person's own perception of noise, unique physical characteristics of each person, etc.

I'm sure we would all prefer precise answers about the possibilities, but I keep telling myself that there is no definite answer. All I can do is keep positive, go with an experienced surgeon that I trust, and plan on dealing with any future challenges that lie ahead, whether it be learning to live with the ticking of a mechanical valve, pain that makes it difficult to get back into the shape I hope to be in, or even more serious issues. I know if I do not fix the problem, I will likely eventually experience heart failure since my heart is overworking to compensate for the leak, so I think (and hope) I'm about as ready for surgery as one can be and am ready to fight to get through everything and recover as quickly as possible.

Steve Waddick  You are correct, I want precise answers and I know I won't get them. I truly appreciate your advice. I don't wish this on anybody but it is comforting to have people going through the same thing to talk to.

Neil Collins  Steve, I'm 44 as well. I'm heading in to surgery in two weeks and agonized over the valve selection after I found out I needed surgery. I was changing my mind a half dozen times a day. I wrote a quick blog about the decision;

https://pilotheart.wordpress.com/2015/10/13/decision/

I was close to deciding mechanical but for me it came down to possible noise of the valve, potential new technologies for the next valve, and career issues with warfarin. I think I could have managed Coumadin and was aware that the mechanical valve had potential to be one and done.

It's certainly a personal decision and everyone has their own reasons for the path we follow. Whichever valve you choose is better than the on you have!

Billy G  As both an engineer and attorney, I want precise answers as well. Any time I start to drift down that path of wondering things like, "Why me?," "What's the definitive answer?," etc., I remind myself I will never find those answers. It definitely is not comforting, but I then remind myself that things could be a lot worse. I have talked to so many people that have had great outcomes with heart surgery, but then I know others that have faced diseases I would consider much worse, such as cancer, which even if the cancer appears to go away, you always have to wonder if when it might come back, which could be days, months, years, or decades later. I would wish no one to have to go through this, but I am thankful that it is not another one of many much worse situations I am facing.

Clare Auten  I have an On-X valve from 2014. I was 44 at the time of surgery. I didn't know about this website yet and just went with my surgeon and cardiologist recommendation for mechanical. I also only had 10 days between diagnosis and surgery. No time for extensive research. I have no regrets. I do hear the valve. Sometimes loud and sometimes not at all. I notice it more when the world around me is quiet like when I am laying in bed at night. I rarely hear it when I am out and about during the day. Good luck with your choice.

Steve Waddick  Crazy update today. Met with surgeon and he threw me for a loop. Basically said he would hold off on surgery and re-test in 3 - 6 months. He feels that I am too health to risk surgery at this point.

Neil - I appreciate your information on your decision making process. It is very helpful.

Clare - I also appreciate your information on the On-X valve.

After meeting with my surgeon today I am still somewhat undecided but may be leaning towards the On-X valve. It was just "disappointing" learning that surgery will be put off. Not that I want to have this surgery, but they basically have said I will need it no matter what and I was preparing myself for it to be next week and now it is back to wait and see when. I'm at a point where I just want it done with so I can begin recovery.

Billy G  Steve, thanks for the update!

I feel like I know how you feel. I was supposed to have surgery yesterday but it got pushed back 9 days because insurance authorization had not yet come in (and it still hasn't). After receiving that news about the delay, I think I felt worse than I've felt about anything during this entire process, including even realizing I needed surgery! I was mentally ready to do what I don't want to do but must do, so it definitely upset me when things changed. I definitely understand wanting to get "it done with so [you] can begin recovery."

But look on the good side. You now have more time to get some additional opinions and think about the heavy decisions such as valve choice. I'm not sure I would be as comfortable as I am prior to surgery if I only had one week between first learning about the issue (and not knowing anything about valve surgery at all) and actual surgery.

Keep us updated!

Billy G  Debbie, On-X is a brand/manufacturer of mechanical valve. Their website is http://www.onxlti.com/. St. Jude Medical mechanical valves are another very common brand, but there are several brands, such as ATS Medical (purchased by Medtronic?).

The main distinguishing characteristic of the On-X valves is that because of the PROACT trial (http://www.ncbi.nlm.nih.gov/pubmed/24512654), the recommended required anticoagulation therapy for the On-X valve is lower than that of other valves. I have not specifically studied in depth the actual differences between various mechanical valves, but in theory, any other valve manufacturer could run a similar trial and get approval for a lower INR requirement, approval for new drugs, etc. For now, though, On-X distinguishes itself as the only mechanical valve with an approved lower INR requirement.

You will find many surgeons have different views on valves (e.g., tissue vs. mechanical, Brand A of a mechanical valve vs. Brand B of a mechanical valve). My surgeon recommended the On-X valve if he cannot repair my aortic valve because of the lower anticoagulation therapy requirement. Dr. Svensson at the Cleveland Clinic, one of the most recognized surgeons I've come across, recommended the St. Jude Medical mechanical valve for me. I did not ask him why because I only received his opinion through his nurse via a phone consult, but from what I've read, he may prefer the SJM valve simply because it has been around longer and has proven itself as reliable.

Meanwhile, another surgeon I consulted with in Las Vegas said, "I use the ATS valve because that is what the hospital has on supply. I've never installed an On-X valve, but a mechanical valve is a mechanical valve - they are all the same. I'm happy to put an On-X valve in you if you want; we just need to get it ordered." To that, I said, "No thanks. I don't care to be your first patient for a specific brand of valve, even if they are all the same." In contrast, I have come across stories where patients anticipated a certain valve manufacturer going into surgery but came out with a different brand because the surgeon saw something that made him feel another brand would fit or work better.

As a final note/reminder, there is no perfect option. For me personally, I'm about to go into surgery hoping for an aortic valve repair and expecting an On-X mechanical valve if the surgeon does not feel a repair is an option once I'm opened up. But if I come out of surgery with another valve the surgeon has not even mentioned because he sees something unexpected once he gets in there, I'll be okay with that. I am moving forward with one of the many great surgeons I have come across, so although I've probably asked him many questions that may make him think I have doubts about him, I don't. I trust him and his team to make the best decisions during the course of surgery. To get there (for me personally), however, I had to research a ton, talk to all kinds of people, talk to various surgeons (both as formal consults and informal conversations), etc.