Hi,
I am due to have an aortic valve replacement this year, I'm 38. I'm considering the Ross procedure due to the long term prognosis vs. a tissue valve. Personally I'm wary of the mechanical valve as I don't want to visit an anti coag. clinic every week. Does anyone have any experience with the Ross procedure? All opinions welcome 
Thank you,
Richard
Hi Richard had a mechanical aortic valve in 2005 at age 48 this was suggested because of my age and the fact that I would never require another operation to replace it., whereas I would definitely require another operation with all its risks if I had a tissue valve. I have to say it’s one of the best decisions I have ever made. Get yourself a home testing machine to test your INR then ring the hospital with the result they will tell you how much warfarin to take, you will normally be asked to do this once a month. One a year you will be asked to visit the hospital with your machine so they can check it against there’s just to see it is working correctly. You will also be able to check your result yourself to to keep your mind at rest. At your age I would definitely go for a mechanical rather than a tissue valve. Why have the worry that one day your going to have to go through the operation again. As for life after the operation I mountain bike in the summer and ski in the winter.
Thank you so much for your response. I have a couple of questions on the MV if I may?
Do you have to do anything special with regards to flying?
How do you get on at the dentist/hygienist and is this more complicated being on warfarin?
Thank you!
Hi RichardUK2
I had AV and root replacement in April this year. I was also against mechanical because of the Warfarin. I have severe anxiety issues around hospitals though so the deciding factor was that with mechanical hopefully I won't need the surgery again... I'm 55
To start with I was attending Warfarin clinic every week or twice a week. Now it's once a month and the clinic is a 5 minute drive from my home, so not an issue
Have a look at Valves for life online and maybe join our Facebook group.. UK Aortic and heart defects pre and post surgery.
Good luck
Joanne
😊
Thank you Joanne, much appreciated, I know what you mean about hospitals!
I had a tissue valve the first time as I didn't fancy being on warfarin, but it started leaking after about five years so I had to have a redo. Second time I had a mechanical valve as I didn't want any more AVR surgeries plus I had had a splenectomy so was high risk for infection. I'm lucky as my INR levels have been steady since I left hospital. I home test and ring the clinic every eight weeks, but do the test every couple of weeks or if I think I may have eaten something that could affect my levels. My clinic is only 10 minutes away now I'm retired and I go there twice a year to get my machine checked against theirs.
Wendy
Thank you Wendy, home resting for INR levels sounds like a great option
hi, i dont have Ross proceedure experience, but have had mechanical valve 17 weeks ago. My comments are warfarin related and anti coag clinic. I went weekly to clinic, then it moved to every two weeks, they want to go monthly but its me thats keeping it at 2 weekly until i am comfortable with things. I even have a home testing machine (not calibrated to hospital yet), so i can check my levels at home. It does settle, just need to be mindful of certain foods but be consistent with your diet. I am sure i will build my confidence and will go home testing route very soon! Good luck with your operation, only you know you and what you want to do.
That’s interesting about the clinic and I like the option of measuring from home. Thank you for your comments!
I haven't had an operation and as my valves are apparently all good, am not considering the Ross procedure. I have a relatively boring ascending aortic aneurysm and it's not quite large enough for surgery yet. If I do need surgery, I'm interested in PEARS on the grounds that it is the least drastic option available to me.
However, I did read up on Ross because of my interest in PEARS and an observation in one of the papers that any surgeon who can perform the Ross procedure is capable of doing PEARS. What I learned left me in awe of the skill set concerned. Definitely for leading surgical centres only. That said, aortic root replacement surgery of any kind is major surgery and Ross - in the right hands - is a perfectly reasonable option, I'm sure.
So I also know that the hospital where I am now being monitored - St Thomas's - offers the Ross procedure and that the Royal Brompton (which is now part of the same trust) is actively assessing PEARS in combination with Ross as a strategy for improving long term outcomes by preventing aortic dilation in the years after surgery. I think this tells you something about both hospitals and something important about the surgery.
There are publications about this linked on the exstent.com website and I would strongly recommend reading them and discussing this with your surgeons.
Whatever you choose, very best of luck!
Yes if I was going to have Ross I would want PEARS too. I think the Royal Brompton is a good option.
I'm totally with you on this. I'm sure mechanical valves have improved over the years and that lower-dose anticoagulation will work for the newer ones, also that warfarin monitoring technology has improved and can probably be managed at home, but it's still something best avoided if humanly possible.
I agree, best decision I ever made having a MV at 52. Because of my age I asked my surgery If I could do my own INR readings and phone them through for them to dose me. They agreed, if I bought my own machine. I bought a Roche for about £200 and my GP surgery have put the slides on prescription for me (the expensive bit!). It's perfect and works well. Everyone is happy. I pop in now and then to callorbrate it, but haven't been near the GP for my warfarin for the past several years. Talk to them about it. I am now living my best life and for me the thought of being opened up again the older and frailer I got made my decision to go mechanical. Good luck.
Really good to hear about the MV valve, thank you!
I have aortic stenonis mild but lately i have an inclination to bend forward anď breàthlessness going up hills could this be a a sign of getting worse.. i was discharged from hospital.
Could u asvise me what to .
Hi, an echo would help see how much your condition has progressed
Hi....you will get different opinions mostly due to age I wd imagine. I had two valves repaired a month ago.....mitral valve was going to be replaced but surgeon repaired it. My personal original choice was a carbon valve because of its longevity and to be honest, the Warfarin issue was never a concern for me as it can be very manageable snd was a small price to pay for some normality back in my life. I still have to take warfarin for 3 months but it has been very level so far. Top tips pre op....do chest and breathing exercises as a ritual before you go in...they really do help afterwards. Good luck with your choice and your operation x
Great thank you, and I’ll certainly look up those chest exercises!
I was always extremely fit snd healthy pre diagnosis....all a massive shock for me After my initial meltdowns I became very focused and determined. The chest exercises are fairly basic but keep everything supple and the breathing ones really help for after....can be found on British Heart Foundation or NHS. Honestly....im sure all this would be much more intense pain wise had I not done the work beforehand
All the best x
Hi Richard,
There is now an alternative to Ross, which does not involve two valves. It is called the 'Ozaki' operation and is performed in the UK by Dr. Cesare Quarto at the Royal Brompton. In this surgery, the surgeon constructs a new valve from the pericardium around your heart. The results from Japan, where this operation is in use since 2007, suggest that it can be a long lasting procedure. Since they use your own tissue, this is much less likely to calcify. However, we only have around a decade of experience with this surgery and the Brmpton is currently running a trial to see if this is any better than a standard tissue valve.
With respect to the Ross procedure, this is something that I have researched extensively when I was due for my first AVR in 2014. Professor Hans Sievers in Germany, the leading Ross surgeon at the time, advised against it since I also had a dilated aortic root. He said that even if they do a root replacement, if you have a dilated aortic root at surgery, the ross will eventually fail. So I ended up going with a tissue valve, and now in 2022 have had a reoperation for a mechanical valve, with testing at home.
The Ross can be an excellent operation for some people, but there are a few issues to be aware of. The results are highly surgeon specific. I personally wouldnt go to a surgeon who hadnt published data for at least a decade (When I saw prof Sievers, he had 14 years worth of data). This is a two valve operation, so you will need eventual reoperation on both valves when you are older. The problem is that both valves dont fail at the same time, so you are possibly looking at at least two more reoperations after your first operation. There is also the TAVI option, and I was told that would be a possibility after my first tisse valve operation, but my valve failed in a way such that this wasnt possible.
In the case of Arnold Schwarzeneggers Ross procedure, the surgery failed the next day. Please see his interview below.
youtube.com/watch?v=iOOoyDX...
So he needed two heart surgeries in a row. Then his homograft failed in 2018. Another surgery. Finally, they were able to redo his aortic with TAVI (non-invasive) in 2020. It is of course uncertain how long TAVI will last in him, as he is only 70, he may still need another procedure down the road. So he had four heart surgeries so far, and he was 48 when he had the ross. I think that his example shows that even if you have an incredible amount of money and access to the best surgeons in the world, this procedure can still go quite wrong.
Having said that, it is the only tissue valve operation that has been show to last over 20 years in 80% of young people (I.e. below 50). In your case, I would do your research carefully and you may want to discount those academic papers which are so incredibly enthusiastic about this procedure. Most of them do not have 20 years follow up. Those that do show that reoperations are more common than you think.
If you want to get a tissue valve, you may want to consider the the Inspiris resilia valve. It is predicted to last 25 years and it is desgined such that TAVI will always be possible. Obviously if you get the same amount of warfarin free living out of a Tissue valve, as out of the Ross procedure, no one is going to want have a ross done anymore, because why have a two valve problem, when the result is the same as a standard tissue valve.
Finally, you mention long-term prognosis. Now I know that many papers claim normal life expectancy after Ross compared to a mechanical valve. But this is comparing apples and oranges, because less than 1% of heart valve patients has the ross procedure. Ross candidates are normally the healthiest patients, where as mech valves are done on anyone.
Please have a look at the data from the German Ross registry, the most comprehensive dataset of patients under going this procedure to date:
acc.org/latest-in-cardiolog...
They say: Freedom from reintervention was 61% at 25 years and survival was 75% at 20 years.
Again, I think that the Ross can be a great operation, but it has its own flaws as you can see above. Good luck in your decision
Thank you so much for your detailed response and all the information. I will read with interest!
Hi Richard,
no problem. Let me add two more things:
There is a forum called valvereplacement
It is a great place to look for people's good and bad experiences with valve surgeries, but I feel that the forum is a bit biased toward the mech valve option. Nevertheless worth looking at.
The other thing worth mentioning is that there is a new Hospital for these types of surgeries in London, the Cleveland Clinic London. Cleveland Clinic US is the #1 hospital for heart care in the US. They invested £1bn into a brand new hospital, which just opened earlier this year. Many doctors from the brompton also operate there. If you can afford to go private, perhaps worth thinking about.
Good morning Richard no I don’t have to do anything when flying, everything is the same as if you had never had an operation. As for the dentists it will depend on what procedure your having you may be asked to stop the warfarin for a few days beforehand. I honestly don’t even realise I have the valve and it’s given me my life back.
That's great to hear thank you
Hi Richard if your thinking of going private I would highly recommend Mr Robert Casuler one of the greatest heart surgeons you could ever meet he also teachers heart surgery. He specialises in minimal invasive surgery. He did my operation which included an aortic repair, he told me I would have a two inch scar but apologised to me after the operation as he had had to make it two and a quarter inches. It’s now almost invisible. You should be able to reach him through the Wellington hospital In Saint Johns Wood London.
hi. I’m 51 and have had 2 mech mitral valves. The second was a redo after I got endocarditis but I think I was just incredibly unlucky. Not sure if endocarditis is a risk with tissue valves but I opted for mech for the sake of longevity and on the surgeons advice. Warfarin can be a nuisance but eventually it will stabilise and you can go some time without a test. I have my own testing machine for holidays but I go to the inr clinic every 3 weeks for testing at the moment. It would be longer but I had to come off warfarin for minor surgery and it takes a while to stabilise again. The ticking of the valve takes some getting used to but it’s a minor inconvenience. I’ve had people tell me that my watch is very loud (it’s an Apple Watch so doesn’t tick!!). Open heart surgery isn’t as bad as you may think and recovery can be fairly straight forward although it takes time. I would have opted for minimally invasive surgery but my heart is badly scared from infection so it wasn’t an option. It may well be an option for you though. Sorry I don’t know anything about the Ross procedure. It’s such a personal choice deciding which valve to have and you need to weigh up the pros and cons of each. I wish you lots of luck.
Great, thank you for your input Anon, may Apple Watches should tick!
Hi Richard, as I am in the position you were in 8 months ago, just wanted to ask how it all went. Hoping you are doing fantastic whichever way you went.
Hi Pefki, the Ross operation went well thank you, I’m 4 weeks post op now. I’ll try and put a post on today actually to update. If you have any specific questions (anything at all!) please feel free to ask
Unfortunately, the final decision by the surgical team was that I don't tick all the boxes for a Ross. Waiting to be taken down to surgery for a mechanical valve. Where was your surgery?
Okay, in my opinion each operation type has advantages and disadvantages and there isn’t necessarily a best choice. With mechanical you have less risk up front and less chance of a reoperation.
Waiting as in your surgery is today!?
I had mine at the Brompton
Mechanical v Tissue valve
Decision to make
Mechanical aortic replacement or tissue valve...help
Mechanical valve
