Aortic Root And Aortic Valve Replacement – Taylor Shares Lots Of Good Information

This is just great.

Earlier today, JD emailed me several questions about aortic root and aortic valve replacement. As many of you know, I did not have aortic root replacement (I had the Ross Procedure), so I couldn’t really comment on all of JD’s questions.

However, a friend of mine, Taylor Browning, had an aortic root and an aortic valve replacement in 2007. That said, I forwarded JD’s questions over to Taylor.

Diagram Of The Aorta

Wow! Talk about a response! Taylor went above-and-beyond the call of duty to support J.D. as he prepares for surgery. First, I will post JD’s email and then I will post Taylor’s reply about about this unique, heart valve surgery that Taylor personally experienced just one year ago.

EMAIL FROM JD ABOUT AORTIC ROOT AND AORTIC VALVE REPLACEMENT:

Adam – Got your book. Helpful. I’m having aortic root and valve replacement. Any suggestions about the best surgeons in the West, surgical procedures and materials?

I read that Taylor is from Los Angeles. my question is how did he manage to have his support group up in Palo Alto.

I would be very interested in talking to Taylor and finding what type of arrangements he made for pre and post surgery follow-ups.

I am also interested to learn the reasons Dr. Miller selects the St. Jude Mechanical Valve. The Portland surgeon I talked to, Dr. Jeff Swanson – who practices with Dr. Furnay (mentioned in Adam’s book) – recommended a bioprosthesis.

In general, I am concerned about being operated on in a university settings because many times the surgery is performed by residents rather than the chosen surgeon.

JD

RESPONSE FROM TAYLOR REGARDING AORTIC ROOT VALVE REPLACEMENT:

JD – I love to talk about this stuff so get ready for a long e-mail! I’m not sure the extent of your aortic aneurism or how close you are to surgery but I found it comforting to know that there are some serious experts out there that do this type of thing every day. I’ve got some great before and after shots of my CT scan to prove it!

First – I can’t say enough positive things about Dr. Craig Miller (pictured below… yes in the cowboy hat) so if you go with him I know you’ll be in great hands! I whole-heartedly agree that Dr. Miller is the “go to” guy in the West in terms of aortic root replacement. When you’re dealing with the aorta, you want to make sure your surgeon is highly regarded and has tons of experience specifically with aortic root and arch replacement… Dr. Miller fits that bill.

Dr. Craig Miller - Stanford Hospital Heart Surgeon

When I started looking at surgeons my goal was to find and meet the very best surgeons I could find for my particular needs and then to go with the one I was most comfortable with. Location I guess had a bit to do with whether I was comfortable with a surgeon but it really was about finding the best at that point.

My cardiologist gave me a short list of the very best which included Dr. Craig Miller, Dr. Vaughn Starnes and two others that were out of the country.

My cardiologist is in the Connective Tissues Group at Stanford as is Dr. Miller so there was already some tight coordination there which was great. I quickly set up consults with Miller and Starnes. Miller was awesome right off the bat and we went ahead and picked a surgery date right then and there.

I think sometimes you just get a feeling about a surgeon right away and I knew that Miller would be my guy. He made me feel comfortable that he would be extremely thorough and conservative in making sure he removed every part of the damaged aortic tissue so that I wouldn’t have to be back in the future.

That being said, I flew down to Los Angeles the very next day to meet Dr. Starnes.

Multiple opinions are a must I think when it comes to this stuff. Dr. Vaughn Starnes is obviously an unbelievable surgeon (as Adam can certainly attest!) but after that meeting I still knew Miller was it. In Adam’s book he mentions he felt the same way about Starnes – you just having a feeling about it. So I went with Miller because of his reputation and experience with the aorta AND because I just had the feeling that he was my guy.

I am originally from Los Angeles but now live in San Francisco. So it was nice being only an hour away from the hospital after surgery. But, you raise a good question about the local of your support group in relation to where you have the surgery. I was in a good spot because my recovery was either going to be in LA at my parents home or in San Francisco at my own home.

But I think if Miller was somewhere where I didn’t have a built-in support network, I would have gone to where he was.

It certainly was great being only an hour away from Stanford knowing that if something happened in the days after I was discharged Dr. Craig Miller was less than an hour away. I have heard of people that check into a nearby hotel for a day or two after being discharged just for that reason and then fly or drive home after a couple of days when they are comfortable everything is fine.

I think if I had had my surgery in LA, I would have yearned for my own bed after a week or so and flown back. It may be slightly tiring to fly so soon after surgery and maybe not the most comfortable but I would think it would be worth it to be home.

Your doctors may have other thoughts on travel but that’s my take. I have even heard of people getting discharged and going right to the airport. Open heart surgery is probably a great excuse to cut the lines and pre-board! :)

And as Adam’s book suggests, ideally you’ll have someone with you almost 24 hours a day for the first few days after you’re discharged just to make sure you get the help you need (or want). I think I was pretty lucky that I really didn’t need people there with me but it was certainly nice to have them there anyway.

My mother stayed with us for the first couple of weeks because my wife was starting a new job. Having friends and family drop by is also great so I definitely preferred recovering in San Francisco where more of my friends are.

In terms of post–op follow up, I met with my cardiologist at Stanford a week after discharge to make sure everything was on the up-and-up and then met with Miller (actually his Nurse coordinator as he was actually out of town) about 7 weeks out.

That was it. I will continue to see my cardiologist for an annual echo and check-up and Miller likes to have a CT scan about 2-3 years out as well. If you have surgery out of town, you’d just fly or drive back for the check-ups.

In terms of valve selection, both Miller and my cardiologist said that a mechanical was no-brainer. Given my age (22 days shy of 36 on the day of surgery) the mechanical valve would hopefully be a lifelong fix while the tissue valve would likely have to be replaced during my lifetime.

The estimates I was given for longevity for a tissue valve in a person my age was anywhere from 10-20 years. Miller also mentioned the possibility of performing a valve-sparing operation where he would repair the root and partial arch with a graft and then reinstall my native valve. I think the final decision would be made when he opened you up and actually got a close-up look at the condition of the valve. But given that everyone agreed that probably within 10 years I would have to have it replaced I wanted to get it all done now. My cardiologist strongly agreed with not waiting on the valve also.

When it came to the type of mechanical, both my cardiologist and Miller said the tried-and-true St. Jude was the old reliable and the way to go.

Again, I trusted them implicitly and have never doubted that the St. Jude was the perfect choice. We also did a lot of research to get comfortable with the required warafarin therapy and determine that it would not be a problem at all – there unfortunately is a lot of bad information out there even in the medical community.

Taylor Browning And Adam Pick
Taylor Browning And Adam Pick

But my INR is stable, I generally eat what I want ( I just avoid LARGE quantities of dark leafy greens), run, ski (now with a helmet which is probably smart anyway), enjoy beer and wine (a little more in moderation than before which again I think I probably should have been doing anyway and generally doing the same things I did before.

Any concern I had about the teaching hospital setting and residents performing the surgery were dispelled by talking to the surgeons. Dr. Miller was honest in saying that these are complex procedures that require a team of people and the first assistant, who is an experienced cardiac resident that Dr. Miller hand-picked to be there with him, will do just that – assist.

Dr. Miller said that he couldn’t promise to do each and every stitch (as he could be otherwise occupied by holding my heart in his hand or something) but that he would be there making sure that those few stitches that he does not do himself are done by someone that has the experience and level of expertise to do it to his level of perfection.

That was enough for me! The first assistant on my surgery, Dr. Murray Kown, was fantastic during my recovery in the hospital as well. Feel free to ask the surgeons about your concerns in this regard and I am sure they will put you at ease. If they don’t, you probably don’t want to go to that surgeon!

I hope that answers your questions and more. Please feel free to follow up with any questions, comment or concerns.

Take care,

Taylor

Adam Pick
Written by Adam Pick

Adam Pick is a patient, author of The Patient's Guide To Heart Valve Surgery and the founder of HeartValveSurgery.com.

To learn how Adam has helped millions of people with heart valve disease, watch Adam's video, subscribe to his free newsletter, or visit his Facebook, or Twitter pages.

  • Carol Copeland

    In replacing the aortic valve, if a homograft valve is used, will I have to take anti rejection drugs? Will I have to take these drugs regardless of my valve choice?

  • http://heart-valve-surgery.com Adam Pick

    Great question Carol.

    So you know, I have a homograft valve – a human donor valve – in my pulmonary position AND I had my original pulmonary valve used to in my aortic position of my heart. As you read in my book, this is called the Ross Procedure for aortic valve replacement.

    That said, I have a homograft valve and do not need to take anti-rejection drugs. Nor, do I need to take anticoagulants, also known as blood thinners.

    This is one of the benefits of the Ross Procedure. Most people who receive mechanical valves do need to take drugs like Coumadin (Warfarin) for the balance of their lives to avoid blood clotting, etc. Here is some more information:

    Coumadin Therapy For Mechanical Heart Valve Replacements

    I hope that helps.

    Keep on tickin,

    Adam

  • Tressa Joseph

    My husband sounds identical to Taylor and would like to talk to him. How can he talk to him?

  • Burdine

    I had a Ross done 01/05/2005 which failed and had to have my aortic replaced with a bovine on 11/15/2007, I am very fearful of another failure which is affecting my personal life, I needed someone who understands what I am going through and could help me… any response would help. I a 49 year old female..

  • http://www.heart-valve-surgery.com Keith Brackett

    I had a homograft put in the Aortic position at the age of 28 in 1989 with the life expectancy of 7 to 12 years, which allowed me to live restriction free, drug free, and I have. The quality of life that I have had over the last 19 years has been great, I am very happy that I made the choice as I did not have to be on Coumadin.
    It is now 19 years later and have just scheduled Aortic valve replacement to replace the Homograft and Ascending Aortic root replacement due to an aneurysm for mid June 2008. Now at 47 I am going with a mechanical valve (bileaflet valve) this time with a Dacron Tube for the Aortic Root. My surgeon feels this is best and that today the Coumadin can be controlled better with home monitoring to keep things adjusted to where they need to be. Hopefully this will be the last time they will need to crack my chest. I would go with another Homograft except I really do not want to go through a third surgery.

  • Keith Thomas

    Has anyone heard of any discussions regarding asprin and plavix for anticoagulation treatment for mechanical heart valve replacement instead of coumadin? I believe on-x valves have a study on non-coumadin therapy. Are there any other mechanical valve companies on board also?

  • Jim Hayden

    Burdine: I had a bovine aortic valve (Edwards Life Sciences) installed in 2000. It started regurgitating (failing) 7.5 years later in August of 2007.
    I had another bovine aortic valve installed in Nov. of 2007. Both required an incision of the sternum. I have been assured that the most recent versions of the valve will last longer than my 2000 model. It is hard to get a firm number on the years but I have been assured it will be 10+. Since I am 71 I am hopeful it goes for the outside statistic of 20 years.
    On the other hand Adam Pick reviewed a new method of replacing the aortic valve through the femoral artery. This is an exciting development and I hope that the method will be perfected by the time we need a replacement valve.
    In the meantime enjoy the good health you will have with your new valve and stay in good condition in the event they have to use the sternum method.
    Jim

  • Keith Thomas

    Burdine my surgeon won’t do a Ross proceedure on me because of the failure rate, sorry Adam. I also don’t want a valve that will wear out with time, I am 47 years old. He only wants to go into my chest one time and I am in total agreement. My surgeon is going to put an On-x valve in for my aortic valve and attach a Dacron graft for my ascending aortic aneurysm that they also found. I will have to be on anticoagulants for the rest of my life, hopefully asprin and Plavix instead of coumadin, but either is better than another trip inside my chest. I told my Dr I wanted a valve with a life time warranty, LOL.
    I wish you the Best with your future surgery, Keith

  • Keith Thomas

    Burdine I apologize for the ending of my previous response. I meant to say I wish you the best with NO future surgeries.
    Keith

  • Pat Rogers

    I Just found out that I need to have surgery to have my valve replaced. My fears are pretty much the same as everyone else. I am 67 years old. My doctor is seeing me in two months to set everything up and I am scared. Im diabetic and am on coumidin for Afib. Im trying to figure out why there are so many people not wanting to be on coumidin. I do just fine on it. Am I missing something? Adam, I just downloaded your book yesterday and it has helped .. But I can’t seem to quit thinking about everything. It is just all so scary.
    Pat

  • Patricia Knutson

    I’m only 43, and right on the edge of needing aortic valve replacement (1.1cm valve, 4.2cm aortic branch) but my symptoms are indicative of failure. My surgeon refuses to give me a tissue valve because he thinks I’ll be back in for another replacement in 5-7 years, and that it won’t help my symtoms very much. I really don’t want to be on coumadin because of the restrictions (activity and food). One cardiologist says I only have 3 years without the surgery, the other says wait until I’m at .9 cm or less.

    I’m interested in advice from someone who has been through it. Thanks!

  • Jack9

    I had a perforated aorta at birth. I had a mechanical aortic valve implanted in 1978. When I was 9, there was regurgitation and I underwent surgery again. In 1987, this was the single worst experience of my life and what I measure all other negative experiences against. I was unconscious for 5 days, on a respirator, awake, tied down for 2-3 days and in intensive care for a total of 10 days before 6 weeks of bedrest. I have had to take coumadin (sodium warafin) for the last 23 years.

    Now I’m 32 and have long outgrown my valve. I’ve run marathons and done weight training successfully, but my endurance is waning severely these days. I have to have a new surgery to correct the narrowing of the aortic root (caused by the ridiculously small valve) and a valve replacement of some sort. I am going in for a final surgical consultation to discuss my options and to discuss the advances in recovery. I will report back.

  • Becca Allison

    Patricia,
    You might want to get a second opinion, as my surgeon says most people choose the tissue valve due to not wanting to take Coumadin, and he says the tissue valves last more like 15 years!
    I just got a tissue valve last Tuesday, and I feel great. Of course, individual cases differ.

    Pat (Rogers),
    I feel for you about being scared. But these procedures have been being done for a lot of years, and they keep getting better ! Mine went very well, and just a week after surgery I am able to walk all over Walmart! Join us tough old broads (that’s a term of endearment!) and we’ll be rooting for you!
    Becca

  • sean

    I have had both a Ross procedure and then 9 years later a mechanical valve with the aortic root replacement. I’m hoping this will truly be the last time I will have to be opened up. I’m had my last surgery at age 41. I have been very active after each surgery. Basically I can do most anything I want but I do take more precautions now that I’m on Coumadin.
    I still drink when I want I just don’t have more than 5 or so drinks in an evening. I waterski, snowski, play soccer, am training for a marathon currently and feel great. I eat what I want when I want. I have an INR device at home that I can take when I travel so I just call in my results. The only issues you need to be warry of in my opinion is to protect yourself from blunt force trauma since coumadin will keep you from clotting. The last thing you want is head trauma so I wear a helmat when snow skiing. Basically, life after the first surgery was better in that I didn’t have to be concerned about bleeding or food or taking my coumadin b ut now that my life style has changed it is really for the best in a way. I drink less, I take a few less risks like no bungy jumping or playing goalie and hear a helmet. I eat better and have always stayed in shape but now have taylored my routine to a more aerobic workout vs anerobic workout. NO HEAVY LIFTING. If I can’t do 12 or more reps when lifting weights then I back off the weight. I still wonder if I work out too hard. I certainly don’t want another aneurism.

    You will however need to get through the healing process and you’ll also get used to your new valve noise. After a few months it will be just a faint ticking. You will however feel every missed beat or when your heart races and sometimes at night it may keep you awake, Just put a down pillow on your chest and some soft music or a fan to help drown out your new little noise maker.

    My aunt has one of the older St. Jude mechanical valves and they are much louder. She is 67 and has had her valve since the early 90’s. She’s in great health and loves life to the fullest.

    If you are thinking of a tissue valve just be aware that with every procedure it is harder for the surgeons to work on you due to scare tissue. So choose wisely. Coumadin isn’t that big a deal. You do bruise easier and the bruises tend to take longer to fade but it’s sure better then worring about 10 years down the road when you’ll possibly beed another procedure.

    I have rambled on enough but just to let you know, there is a normal life out there for anyone going through this.

  • Nancy

    Hi everyone, I just had aortic valve replacement on Nov 12 along with approx 4″ of my aorta replaced. I am 52 years old and never had any symptoms. I was diagnosed last year during a physical when I told the doctor that I heard my heartbeat in my ear. They did an echo and found the bicuspid valve. I am now about 4.5 weeks post op and doing well. I went with the Edwards Lifescience Magna cow valve and it is working great. Also I have had a cat scan and the aorta replacement went very well. Total operation took about 4 hours and I have a 6.5″ incision which has healed 100%. The surgeon, Dr. Barry Winton, did a great job and I was glued back together. I have two dime size drainage tubes under the incision. My only complication was that my tricuspid valve has started to leak. The cardiologoist and surgeon both indicate that this is not life-threatening and I will have to take diuretics. The good news is that my high blood pressure is gone and I now have blood pressure of 108/75. So I am off high blood pressure medicine and on to diuretics. My one question is that I was told since I had the full open heart surgery for the aortic valve and aorta replacement, that the next time I have the valve replaced, I would still need to have the full open heart. I thought I could have the minimal invasive surgery the second time. Adam, have you ever heard about that. I see the surgeon again at the end of the month and want to confirm with him. I am curious as to what you have ever heard about the second operation? Full or minimally invasive?? Thanks. PS The surgery is not as bad as your imagination will make it. I feel like I have been given a second chance on life!!

  • Yvette Louw

    I am almost 34 years old and was supposed to have aortic valve/root replacement by the end of May last year. I could not bring myself to do it and of course now I really need to make the move. I am so afaid and it is paralysing. I am afraid I will never wake up and see my 6 year old son (which I was never supposed to have) and my wonderful husband agian. I feel like I have so much to loose. Of course I know if I don’t have it done I am going to die any way. I just want to know how all of you got your minds and emotions ready to do this. I also don’t know which valve to choose. There are so many different opinions. I need help!
    Yvette, South Africa

  • Charlene Melcher

    Hi all, I know this operation is the scariest thing you will ever face. I to had an valve saving aorta replacement. My surgery took almost 8 hours. it has been 5 months and I feel great. My suggestions include being totally at peace with your doctor. Any doubts about their ability to perform the surgery successfully…find a new surgeon. The only other thing I can say is that the alternative to having surgery is unacceptable, after time you will not survive, better to fix things while they are easier to fix than wait until you have other issues that compound it. I know it is scary especially when you have young children, mine were 8, 15 and 18. But had I not had the surgery when I did, I would not be here now. There is only so much they can see on the scans, they did not see the alcers that had formed on my aorta up in the arch. Don’t wait to long…

  • Yvette Louw

    Hi Charlene, Thanks for your response. I would like to know what you said to your kids when you went in for the surgery. I feel I should have something significant to say if it is the last time he says me. Obviously I will tell him how much I love him. I also want to know how you felt when you first woke up and how it went with the recovery. How soon were you back on your feet?
    i appreciate you taking the time.
    Regards, Yvette

  • BenjaminJC

    Hi Charlene and Yvette,
    I’m from Long Island NY. I need some advice. I’m becoming VERY depressed, and a nervous wreck. I am married and have a 5 year old daughter and 2 year old son. I’m 37 years old. I recently had a physical, and I mentioned (because my wife was hounding me to) occasionally feeling short of breath. I attribute it to not having done any consistent exercise for the past 4/5 years of being married. I was an all-american runner in college, and have always done heavy duty weight training and exercise. Anyway, to make a long story short, after the physical the doctor referred me to a cardiologist just to be on the safe side. I had a stress test which revealed an enlarged aortic root. This was no surprise to me because I had an echo done about 5 years ago and it was slightly enlarge, but the cardiologist attributed it to my size (6’3”) and being an athlete. 5 years ago the reading was 4.2, and the stress test echo last week read 5.1, and my CT with contrast shows 5.5cm. I am SO AGGRAVATED to have to deal with this shit! I am 37 years old!! I have NO OTHER issues! Everyone is freaking out now in the family. I don’t want to have surgery!!! This is ridiculous. I read that you can’t just judge an aortic root by size alone, you have to take into account BSA body surface area, normal aorta size vs. the enlarged root, etc..etc.. There are a bunch of other factors. Anyway the cardiologists want me to see a surgeon. I don’t want to go and see some guy who makes his money by cutting people open. What’s the point of him telling me I don’t need surgery immediately even if I don’t? I am so upset. I can’t take a surgery like this emotionally. My brother was born premature, blind, and with heart defects. He is 31, and I have watched the kid have like 5 or 6 open heart surgeries to replace valves over the years. It’s too much for me! Please help, I’m not ready for surgery. There has to be more time. I figure since there are NO other issues, 100% healthy, and no other heart issues other than enlarged aortic root, I can bide some time and watch it with routine CTs every 6 mos. For now. Especially since I was a hardcore athlete, am a big man, and it only grew a little over the past 5 years. Please tell me your thoughts, and recommend any of the top Hospitals, Cardiologists, and Cardiothoracic Surgeons who are in New York City. Also, since my aortic valve is perfect, what would they do in a surgery. Can I postpone surgery? I feel like a surgeon is going to want to cut me open, since to them it’s like putting on their underwear everyday. Please help!
    Could you guys also leave your emails so we can keep in touch?
    Regards,

    Benjamin J. Carey

  • Lisa

    Benjamin,
    First of all, see another cardiologist and get a second opinion and get a couple of opinions from surgeons as well. Next, relax a bit, heart surgery is tough but as you can see, there are many positive outcomes. I am only 35, very active and fit, and completely asymptomatic before my mitral valve repair in December. I just celebrated my 4 month anniversary and am doing pretty well, not back up to full speed yet (meaning no snowboarding or long bicycle rides), but soon I expect to have more energy than ever. Remember that once you damage heart muscle by letting a condition go on too long, you cannot get that back. It is better to fix things while you and your heart are still healthy. You are trading a rough year for a longer and healthier life. Good Luck Lisa D. RN

  • dALE

    I had a Kay-Suzuki prosthetic aortic valve implanted in 1971 when I was 21. About 8 years ago my cardiologist noticed that my aortic root was enlarged. Now the root is 6.0cm and surgery is recommended. Since the valve is now nearly 38 years old it makes sense to replace both the valve and the aortic root. I now live in Baltimore and am in the process of selecting a surgeon for this surgery, which must be done in the next several months.

    Does anyone have any recommendations for a surgeon in Baltimore? I would be interested in any thoughts or experiences.

  • Jason

    Not sure about Baltimore,but I suggest going ot see Dr.Vatsia at North Shore Hospital in Long Island,NY.
    He is awesome!!!
    2 1/2 years post OP Ross Procedure

  • Dale

    Benjamin, I read your post a couple of days ago when I found this site. I had my aortic valve replaced well before you were born. It is still in place. As I said in my previous post I learned about 8 years ago that my aortic root was enlarged. So I will have both replaced in June.

    Over the course of the last thirty eight years I have led a very active life. I have been a runner, took up downhill skiing when I was 38, biked, rowed basically did anything I wanted to do. I never had any restrictions. I have been on coumadin for all of this time and have only a few minor problems mostly my fault.

    This surgery you face is not the end of the world. It is unpleasant to a degree, but very manageable and in a month or two you will be wondering why you were so worried.

    My take on this is that I feel pretty fortunate to have had the last 38 years, fortunate that they found my current problem and fortunate that it is treatable. There are people in the world with much greater problems than ours to be sure. I have watched a couple of friends that endured a slow and painful death due to cancer. So, pal count your blessings.

    If you don’t believe the doctors you have get a second or even a third opinion. Likely they will tell you the same thing. Then if you don’t want to have the surgery don’t have it. It is your choice. Surgeons do not operate for the hell of it. Your perspective on this is is completely wrong.

    Bottom line it is your life, your decision. But I would think you would not want to take the chance that your kids won’t have you in their lives when they grow up. You have a family and responsibilities, sometimes you just have to play the hand you are dealt. There is really nothing to be angry about, it is what is you deal with it or you don’t and you enjoy the benefits or suffer the consequences either way.

    One last comment, after reading your post I can see why your family is freaked out. You need to show them that you have the courage to face this problem. Go through it together and your family will be all the stronger for it. You will appreciate the life you have, just like I have for the last 38years and hope to for the next 38 years after this is over for me in June

    Peace

  • Jeff Smink

    Taylor,

    Thanks for the great information. I had aortic root surgery 12 years ago using one of the valve sparing techniques and the Hemasheild implant. My surgery was emergency and at the time was very thankful for the surgeon saving my valve. I now need another surgery and we will need to replace the valve. I am a distance runner and log around 40-50 miles a week and I am excited to hear that you are physically active. I have a genetice defect and in the last twelve years have developed two other anueryisms, one in my femeral artey and another on the descending aorta. My surgery is scheduled for 7/21/09 and I am going to have the surgery at Duke. My first surgery was performed at Lehigh Valley Sacred Heart in Allentown Pa and my cardiologist there has had me under care for the last three years with the folks at Duke. I too knew that Dr. Chad Hughes was the right surgeon for this task.

    Once again, Thanks.

  • travis

    hello all. i’m 36 yearold male withh marfan’s syndrome. i’ve had mytrol vavle replacement (about a yaer and half ago), and am now facing aortic vavle and assending aorta procedure. I would just like to say that first sometimes surgery isn’t all ways about what you want. i’ve been married for 15 years and have a 14 yearold and an 11 year old, I can’t be selfish and say I won’t have this surgery done. i’m scared or what ever. I need them but , god willing, they need me. whose going to show my son how to take care of his family? or teach my daughter what a good man is? I don’t want this and I don’t think anyone here asked for any of this, but the reality is, here we are. and size doesn’t matter i’m 6′ 9″ and 250 pounds, at last check 8% body fat.i’m a pretty big guyand have always done what I wanted, footbakk, state champ basketball 2 years in a row. I still means i’m going to have surgery. yell ya’ll begood soap box time is over. and thanks I really needed to vent

  • BenjaminJC

    After all the panic I saw one of the best “aorta” surgeons in the country; Dr. Stelzer based out of Mt. Sinai in NYC. Just as I suspected, most of the average doctors simply referred to a textbook when evaluating my condition. They looked up the size of my aorta and said “oh that’s conditions for surgery”. Dr. Stelzer drilled WAY down on every single aspect of my condition including the fact that the measurements between my sonogram and 180 slice ct. scan were inconsisitent. After further scrutiny he pointed out that the ct. scan measuring the aorta was on a tilt, and therefore could have measured bigger. Ie…if you cut off a broomstick at a 90 degree angle you get one diameter, but if you cut it at an angle instead; then obviously the diameter is going to be bigger He clearly showed me this on the ct scan. He also brought up the idea that since it is a ct scan, we don’t know if the heart was in systole or diastole…..(was it beating during the time the picture was taken?) which would slightly make for an enlarged measure . Furthermore, most of the other doctors enjoyed the easy way out by simply referring to their “text books” instead of being cutting edge, and looking deep into things. Most of the other doctors were okay with the expertise of the anesthesiologist, etc…. Dr. Stelzer looked at every single thing himself and analyzed it. He also showed me a study that compares BSA, and many other things relative to aortic size. See it here:

    http://ats.ctsnetjournals.org/cgi/content/abstract/81/1/169

    This all makes a hell of a lot more sense to me, and so I’m waiting to have my surgery. He said I should have an MRI in six months to pacify the anxiety of my wife, but I’m sold. This is a lot more logical to me and proven with science than a doctor making a recommendation based on “tradition”. Believe me; i’m not going under the knife unless absolutely necessary. I don’t care what anyone says; you’re never the same. Yes you can still live a fruitful life, etc… and be active; but you are never the same. I don’t want to gamble with my health, but i’m not going under the knife until ALL stones are turned and everything is laid out and makes sense. All too often people settle for easy answers.

  • BenjaminJC

    After 7 months of DILIGENT research I had no choice but to have surgery to address a 6.1cm ascending aortic aneurysm. I interviewed over a dozen doctors, and programs across the country; and I decided on someone reputed to be the best in the country for Aortic surgery. His name is Dr. Allan Stewart and he works out of Columbia Presbyterian in the city. He is only one of two guys in his caliber; the other is Lars Svenson from the cleveland institute. Most people regard Stewart as the best in the country.

    I opted NOT to have the Ross procedure because my valve and all other aspects of my heart were perfect. 90% of the doctors I spoke with said they only recommended the Ross Procedure for children, and some had unpleasant experiences doing “re-ops” on Ross Procedure patients.

    I sure am glad I went with the “valve-sparing” procedure, and not the ross procedure. Besides all of the research I did, something just didn’t sit right with me about cutting off my perfectly working pulmonary valve, just in the name of it lasting longer and being more efficient than a homograft, etc…. I feel if it’s not broken, don’t fix it.

    Anyway, my experience overall was incredible; and I feel like a million bucks. I guarantee I can run circles around most people half my age, and my scar is nearly invisible compared to most patients I know who have had similar surgeries. That’s because Dr. Stewart is a relentless surgeon who takes into account every single last aspect of surgery, including the brilliant “valve sparing” method, as well as making sure at the end that I would look good at the beach with my shirt off!!

    Benjamin

  • frank

    I had a mechanical valve/ascending aortic replacment done 4/28/2010. That date was also my 70th birthday. I originally wanted a tissue valve because of my age and the coumadin. The surgeon recommended the mechanical valve. My other arteries were that of a 30-40 year old man. He also said stiching the aortic replacenent to the mechanical valve was easier and more successful. I have no current problems. My coumadin level is stable and I get tested once a month. I play golf 4 or 5 time a week. I walk 18 hole on a very hilly course. The ticking valve is hard to ignore. The concern about coumadin is fading. I am glad I had the operation when I did(5.0 cm). The anuerysm was paper thin. The surgery was done at Passavant in Pittsburg. I am scheduled for an echo in the next 2 weeks. As for now I do not need a stress test. The recovery period (about 2 month-no golf) was tough. I still have some chest discomfort but everything is back to normal.

    t

  • Paul Murphy

    I am 51 years old and had an aeortic root and valve replacement 9 years ago. The operation was successful but I had some problems early on which I would like to share. (1)I had to be re hospitalised 2 weeks after surgery due to an irregular heart beat.
    Luckily my surgeon was attending the general hospital I was taken to
    and, even though my blood count was not critically low told them to give me 2 pints of blood.They then cardioverted me and I have not looked back since.(2) I know this sounds stupid but the sound of my mechanical valve drove me nuts for 6 months,but like everything else you get used to it.(I wouldn’t be without it now (pardon the pun). For all of you who are wrestling with which surgery to go for,let the consultant advise you.He knows more about than you do.

    Best Regards

    Paul from Ireland

  • Ron Bumpus

    I am a 45 year old male who is currently 3 weeks post-op. I was born with a bicuspid AV 1.1cm and recently developed an aortic root issue 5.5cm.

    After speaking with the surgeon, NJ Hackensack hospital (GREAT BTW) Dr. Gabriel DiLuozzo recommended a BIO valve over the mechanical valve due to the requirements of blood thinners. 2/24/14 the surgery was started and Dr. DiLuozzo use a Edward Life Sciences TFX2700 porcine valve and Dacron root replacement (Bentall Procedure).

    During our conversations I was told 17-20 years I would need a second surgery and his confidence stating that technology will vastly improve with the TVAR process that my next surgery might be minimally invasive.

    All I would recommend is that you need to feel comfortable with your surgeon, and do your homework. I make a lousy patient and would probably forget my blood thinners if i had the mechanical valve, which was my big selling point.

    Good Luck……

  • john c

    I am 76 and 2 years post op after emergency repair of thoracic dissection and arch with aortic valve replacement. My condition is stable but hypertension in early am is a concern.
    Why would my systolic BP ,upon rising, be 180 and without any medication reduce to 130/80 within an hour?
    Could there be a problem unique with me such as sleep apnea etc? .Kidney function is fine. I am active without limitations , but worry about the effects of Hypertension.
    Are there any studies regarding loss of barocepter response in replacement grafts?

  • mike

    I am a 61yo male 18 mo post surgery. I still suffer with muscle spasms in mid quadrant in my back, headaches and head pressure and dizziness. Was recently diagnosed with Epileptic Seizure Disorder (mild). Are any of you on beta blockers for BP? I am only about 65% back to normal (whatever that is now). Any suggestions?

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