Deciding on Ross or not

[lemonstuff]

Hi all,

I'm thankful to find this site and all the wonderful people who are involved! I have a cogenital bicuspid aortic valve diagnosed as an infant and have always known OHS was coming one day. Fortunately I've made it 31 years and now is the time to decide on what to do. (I still am active and seemingly healthy, just very stonic.)

I have met with several surgeons and most have recommended a Ross procedure as I am still young, recently married and hoping to have children in the next few years. My other best solution is a homograft. I am HORRIBLE at making decisions and this is the hardest of my life. The Ross sounds like such a risky step to take and leaves me with more questions than answers, and on the other hand the homograft might lead me to another surgery in the more near, than distant future.

Any input from the Ross patients and those that considered it would be greatly appreciated. As the whole thing is scary, it's even scarier to be the only one who is ultimately responsible for making this decision.

Thanks!
Stephanie

 

[Karlynn]

Stephanie,
Welcome to VR. You have come to the right place. I had my mitral valve replaced when I was 32. The difference between you and I is that I already had my children. So they put a mechanical in to avoid repeat surgeries while my children were still at home. We have many Ross people here. Mara is the first woman that comes to mind who has had it done. She is a youngster too. I haven't seen her around here lately. Hopefully she's been lurking and will pop in. But I'm also sure that some of our Ross regulars will chime in shortly.

Hopefully Al Lodwick will be along to give his perspective. He is our resident (and widely esteemed) expert on Coumadin and does have information on bearing children while on Coumadin - if for some reason a mechanical valve sneaks into the picture for you.

Best wishes.

 

[Shine_on_Syd]

Yes the whole decisionmaking process is scary. And if you are like me you will get conflicting advice. You are a good canddate for the Ross at your age and the fact that you still are of childbearing age. The Ross is recommended for those females who may have children as they can avoid Coumadin.
I did a considerable amount of research on the Ross and think it makes perfect sense. My only advice is too pick a surgeon who has lots of experience as it is a complicated procedure. The mortality rates is very low. I think safer that cosmetic surgery.

http://www.ps4ross.com/toc.html

 

[Shine_on_Syd]

Stephanie,
I would recommend that you also subscribe to the ROSS-PROCEDURE (Open Heart Surgery) Support and Discussion group.

Instructions are at:

http://www.lsoft.com/scripts/wl.exe?SL1=ROSS-PROCEDURE&H=MAELSTROM.STJOHNS.EDU

 

[Bryan B]

Hi Stephanie,

I had the Ross Procedure performed by Dr. James Jaggers at Duke Medical Center in March (noticed you're from NC...I grew up and lived in Cary for most of my life). I'm 43 and decided on the Ross in hopes that I will get the longevity of a mechanical valve without having to be on anticoagulants (only time will tell if that gamble pays off ).

The thing about the Ross is that they don't know for sure if you are a good candidate for the procedure until they get in there, so you will STILL have to decide on a backup valve. Dr. Jaggers actually tried to repair my valve before deciding there was too much damage, but he said I was a perfect candidate for the Ross.

If you have any questions you want to ask me or if you would like Dr. Jaggers' contact info you are welcome to send me a private message. I have had a picture perfect recovery as far as my heart is concerned with no complications. I have had a problem with my sternum not healing up as quickly as expected, but I think that is just bad luck on my part. I would highly recommend Dr. Jaggers and Duke Medical Center for your surgery.

 

[Heather Fisher]

Hi Stephanie,

I haven't been posting much lately but I saw your thread. I had a Ross procedure at age 47 and am approaching the one year mark since surgery. It isn't an easy decision to make and I know what you are going through. As previously mentioned, find a surgeon who is very comfortable and experienced with the procedure. I had already had a child so that didn't play a part in the decision.

I was also deemed a "perfect Ross procedure" with no complications. I was off the ventilator in 2 hours and home in 3 days. I've had no complications other than a few arrhythmias following surgery for which I take Toprol. I also take an aspirin a day. I'll be out of town for the next week but feel free to dend me an email or PM. Good luck with the decision.

Heather

 

[Shine_on_Syd]

Duke

Duke

Stephanie,
I agree with Bryan. I used to be the manager of benefits and wellness for 1,500 employees in NC. Because we had an aging workforce, who hardly exercised, didn't eat properly and smoked ( most of them grew up on tobacco farms) we had a high incidence of heart patients. We always sent them to Duke and it is one the premier cardiac hospitals.

Mr.Surgeon, Dr. Stelzer is the most experienced RP surgeon in practice but is in NYC. I see no need to travel to NY when you have Duke.

Here is some late breaking info on the RP. The first article gives a great overview of the RP.

http://rdu.news14.com/content/story_links/?ArID=48362&SecID=231

http://www.hoinews.com/news/features/4/804702.html



James

 

[Mary]

Thanks, James

Thanks, James

James,
Just wanted you to know I fired off another email to Dr. Stelzer using the email address you provided. I'm going to my PCP this am, and intend to suggest the possibility of a second opinion and a consultation without a surgeon who does the Ross procedure.
Mary

 

[Shine_on_Syd]

Mary,
The bethisrealny e-mail address I gave you works. Dr. Stelzer wrote back to me today.
Keep me posted!
James

 

[Mary]

That's the one I used, but let me try it again. I kept a draft of the message, so we'll see if they can get it delivered!
Mary

 

[Mary]

James,
Just opened my email, and my message to Dr. Stelzer has been returned.
I don't know what the difficulty is.
Mary

 

[chilihead]

Ross

Ross

Stephanie,

I know it sucks to have to decide when all the doctor's don't agree. I found that unless you go to a "group" that has a Ross experienced surgeon, you won't get a recommendation to go with the Ross procedure. My cardiologist was adamant about it. I finally went and spoke directly to the surgeon in Dallas that had lots of experience with it and was convinced that that's what I was going to go for. I'm about 7 months post op and feel great. I eat what I want, ride motorcycles, bicycles, water ski, etc. and am happy to be alive. I only hope the longevity of the Ross holds up.
My advice is do some research and find a good Ross surgeon then go talk to him before you decide.

Good luck,

Jim

 

[iparychev]

Tough choice

Tough choice

I had a valve replacement almost three months ago in St Francis, Long Island, NY, but I didn't go for Roth. I am 27, and lead a pretty active life style(skiing, soccer, tennis) Before the surgery I was thinking really hard of what to get, but mechanical valve was totally unacceptable because of the coumadin(no sports, can't for get to take it every day and watch out for any cuts). The doctor who did the catherization in the hospital sujested a bulvine valve, and although it will have to be replaced in the future, the progress sujjests that in 12-15 years this op will be done over the internet. Roth, he said was a way of replacing of one bad valve with possibly two bad ones. The surgion advised on mechanical, and sujested on thinking about Roth. Out of three choices he was least thrilled of the Roth though. Valve repair, he said, never works as planned. This is totally a patient's call, and I believe it depends on the risks you are willing to take: either live a trouble-free life for the next 12-15 years, take coumadin every day for the rest of your life or replace 2 valves and pray that none of them go bad. I am off coumadin now, and I am REALLY happy I don't have to take it anymore.

 

[Tom F.]

I have to weigh in. Both the Ross procedure and the David-type value repair procedure are technically very complicated surgeries, and are only done by a relatively limited number of surgeons. There are, however, many that do traditional valve replacements. When I went through my selection process, I first talked to several surgeons. The docs that do NOT do repairs or Ross were the very first to say that those procedures do not work. I see a pattern here! My selection was repair first, then Ross, then bio. I got lucky and had a valve repair. I know that there is a reop. risk, but so far 18 mos out things are as tight as a drum. (As for reop risks, there are those with mechanical valves that have to have them done again, no guaranty here any way you go.) The published data, not one man's view but the actual published results show that the vast majority of people that get a Ross done are surgery free. Same for David type repairs.

Steph - there is no wrong decision here, picks what fits for you. But if you are thinking of a Ross, find a doc that has done many, perhaps 100 or more, and look as his actual results. The good docs will not shy away from sharing these results. If my repair goes bad I will have a Ross done, and I won't look back. E mail me at [email protected] if you want to chat more.

 

[lemonstuff]

Thanks everyone!

Thanks everyone!

I can't tell you all how much better I feel just knowing that all of you have been in my situation and had to deal with this. It is very hard for family and friends to relate and give their opinions in these situations.

I have decided that I am going to persue the Ross procedure after having researched for the past few weeks and meeting with several surgeons. Thanks to this forum I know the right questions to ask, and feel confident that I will be able to make a more informed decision.

 

[tobagotwo]

A few suggestions...

Bryan pointed out that sometimes things are no longer a "go" for a Ross Procedure when the surgeon gets in there. As such, be sure you have selected a backup valve choice, in case they determine they can't proceed with the Ross.

Also, it has been mentioned that you want a well-experienced surgeon for the Ross Procedure. Experience = Success.

If there is a weakness to the Ross Procedure, it is the pulmonary replacement valve. You are young, so over time, it will likely need eventual replacement. I believe it is not considered as difficult surgery as an aortic or mitral replacement, but it certainly is still surgery.

You should not go into this believing that you will never have surgery again, as none of the options, including replacement with a mechanical, offer that guarantee, particularly at a young age. However, if your aortic replacement (your former pulmonary valve) moves successfully, it may never have to be operated on again, and would be a big plus.

Best wishes,

 

[Tom F.]

Well another comment. It is true that the replacement pulmonary valve is a weak point in the Ross, and sometimes that valve requires replacement. It is also true that pulmonary valve surgery can be done sometimes easier than dealing with the aortic valve. However nothing I have ever read, and I would again urge you to do your own research, but nothing I have seen would suggest that at your age replacmenet of the pulmonary is "likely". Possible yes, but far far less than a 50% chance. I would go for it if I were you. No offense tobagotwo.

 

[Mary]

I have been corresponding with Dr. Stelzer a surgeon known as for his work modifying the Ross procedure and the surgeon who did Joey's Ross procedure and Shine on Syd's replacement. He answered the question about the possible pulmonary valve replacement by saying he thought it could probably last my lifetime. He feels that if it is properly placed, working on the right side with much lower pressure, it has a good chance of working for 25 years or more. He adds that even if it starts to give out at that point, the valve will still continue to function for many more years with decreased function but not enough to necessitate replacement.

Mary

 

[surfsparky]

Ross Procedure

Ross Procedure

Hi!
What a big decision you have to make. My thoughts are with you. There's no one perfect choice, it's just a very personal one. My husband Chris had the Ross 15 months ago (at the age of 31) and it went well, although he is experiencing some "rejection" and it seems pulmonary valve replacement will be necessary in the next year. Chris says that given his time again, he would still make the same choice even with the possiblilty of further surgery in the near future. (He is constantly cutting himself in his line of work and knocking himself around as he is a surfer, so Coumadin was not his preferred choice) Some info that I found from a number of medical journals (our cousin is a cardio), shows that approx 10% of patients experience a degree of stenosis on the homograft on the pulmonary, but it usually levels out with often no need for reoperation. I'll find the research and post it for you. Maybe, that could be a question for your surgeon- how many patients have experienced stenosis on the pulmonary grafted valve in his experience? Anyway, all the best, keep in touch, and know that everyone is here for you,
love and prayers,
Yolanda

 

[tobagotwo]

Absolutelty none taken, Tom.

I do agree that a successful Ross procedure can be the best of all possible worlds. My personal take is that the jury is still out on the pulmonary replacement issue over time, especially inthat each person's body deals with its replacement valves differently.

The doctor's reponse about the lower demands on the pulmonary valve is fully acknowledged, and a point I've also mentioned in other posts. Not that it matters, but I agree with the theory wholeheartedly.

The post is/was absolutely not intended to rain on the Ross Procedure or its benefits.

Best wishes,