Freaked out, told to make a decision in a week!

[SinJun]

Hello, I am new to the forum, but think I have read everything that is here. I have really appreciated all the input and would have loved this when i had my previous surgery.

When I was 24 I had my first valve replacement surgery. I lived in Michigan, was playing semi-pro paintball, and months from getting married. I went with a tissue valve so that it wouldn't interrupt my active lifestyle or varied diet. Now that it is degenerating I am going through some of the same choices, but this time without the luxury of even a month of consideration. I still live a somewhat active lifestyle, I have moved only a year ago to Southern California, and no longer married. This effects the decisions by displacing me from my family support system.

I knew that there was the eventuality that the valve would have to be replaced. The quarterly check-ups in Michigan kept giving me another year. Now that I have moved to California things have accelerated quickly. I went for a check up then to seeing a cardiologist to a surgeon that wants to schedule surgery in a week. I think I still want to go with another tissue valve, but how many times can I go through this? I am a bit surprised how much and how little has changed in 13 years.

Thank you for a place to share.

 

[DeuxofUs]

Hi fellow So Cal-er!

I don't know how many times you can go through it but (if I were you) I would get a mechanical. Now, I am looking into the Ross Procedure (google it to learn more) and won't need blood thinners because I didn't like the idea of a tissue valve.. don't want to do this again if I can help it!! And, I am just not ready for the blood thinner thing... too much maintenance for me personally.

There are others on here with more knowledge than I have.. it's the weekend so it might be a little slow around here.

If my Ross Procedure won't work for me, than I will go with mechanical.

It's a stressful time I know but we are here to support you in what ever you decide.

 

[Jkm7]

I chose tissue valve for my second OHS. I suspect I am older than you but nevertheless, absolutely did not want a mechanical valve so did not get one.

Most surgeons today are totally leaving the choice to the patient unless a compelling reason not to and many are fully approving choice of tissue for younger patients.

When you meet with your surgeon, you may wish to get his/her viewpoint about the very good chance you would be able to have any future valve replacement done trans-catheter (percutaneous) without cracking the chest surgery. Many surgeons are telling their patients they believe it will soon become common but is now mostly done on those too ill to have traditional surgery.

I didn't have much more than 2 weeks to choose my valve. Not all the unusual.

Best wishes.

 

[bdryer]

I'm guessing you are 37. If you get another tissue valve, you will have another reop perhaps two in your life time. Every time the surgeon replaces a valve they must remove the scar tissue that surrounds the valve because they cannot stitch through scar tissue, hence the annulus continually gets larger. The Bundle of His and AV node nerve groups run adjacent to the AV annulus. By removing scar tissue the surgeon on repeat reops stands a greater chance of nicking a nerve. If that happens, which eventually it very well may (due to reops), you get a pace maker for life to go along with your tissue valves.

Forget valve replacement via cath. That is reserved for those who may not survive OHS. Inserting a valve within a valve via cath does not give you any where near the required area, or valve opening in cm2 to lead a healthy life style. Investigate ValveXchange if you are curious where the future may be going. This technology is not available in our near future, so you must go with current technology.

Regarding MHV's, On-X is the most technologically advanced MHV. It is expected that by 2015, On-X recipients will be able to maintain an INR of 1.5 to 2. St Jude Reagent is a good alternative. Tons of folks are happy with their Carbomedics. ATS makes a leading edge valve as well. I at age 55 had the On-X valve implanted on Mar 21/11. That was by MY choice and I worked very hard to achieve this goal.

If I was you which I'm not, I know what I would do. You had best have a heart to heart with your surgeon and figure out what is best over the long term, not the short term. It's time for you to start doing your home work and investigate what is available on all manufactures web sites. A good surgeon will implant what ever you want. Some consideration to the surgeons experience is important. I was my surgeons first On-X implant and he was very happy with the outcome. All valves have similar tooling and a sewing cuff. This simplifies the surgeons required training.

Good luck and dig deep!

 

[LeakyUK]

How many Valve surgeries do you want? Tissue now means surgery 3 when you are 50. I am going mechanical at 58 because I NEVER want to do it again! I have no intention of changeing my fairly healthy diet and following advice on here I will not be cutting down on salad! The cath replacement option has been under development for many years and I would not want to rely on it. Even for my Angiogram I was advised that some people have 'twisty' arteries which makes the procedure difficult.

 

[JulieS]

Welcome aboard,
You are right, it is a tough decision. I am facing the same decision you are for the 2nd. I didn't realize there were so many options and choices. My first time around I met with the surgeon the day before surgery, he gave me 4 choices, mechanical, Homograft, Bovine, Porcine. Ultimately we chose the Bovine tissue for the same reasons you did. But the surgeon was the one who actually helped and picked my valve type. I told him my concerns and asked him if it were his wife he was doing this to which one would he pick and I fully trusted his guidance. Now like you second time around knowing more than the first time, not sure yet either what I will do. Deep down I am pretty sure it will be a mechanical as much as I don't want it. That makes the most sense. Are you comfortable talking to your surgeon? I hope you can come up with a decision you are confident with.

 

[kfay]

SinJun, You don't say what valve you are having replaced, but to have gotten 13 years out of a tissue valve when you were 24 is very good. If you are inclined to go tissue again, do so. Choosing a valve is a very personal decision that YOU should make based on your lifestyle and what you can live with down the road. You already know what the two options are, go mechanical and take coumadin for the rest of your life, or go tissue and know that you are going to be facing another surgery. For what it is worth, the odds of the second surgery are the same as the first.

Also, I guess bdryer knows more than some of the best surgeons in the US, because many of us on here have been told by them (including me, by my surgeon at the Mayo clinic, whom I have a tendency to trust his knowledge a little more) that tissue valve replacement by cath is looking to be a very viable option in the not too distant future for valve replacement. In fact, they are already doing this on congenital patients who need their pulmonary valve replaced with the melody valves and so far, those kids are doing great, so it is not only just for old people who can't live through standard heart surgery. I have a tissue valve and am thinking I will have one more surgery and then the last one will be via cath.

This isn't your first go at the rodeo, so you do know what to expect. Yes, each surgery can be different ( I didn't have any significant problems with either of mine), just as everybody's experience with a mechanical valve and coumadin can be different. That's why you have to make the choice that is right for you. I wish you the best of luck.


Kim

 

[normofthenorth]

+1 to what Kim said!

There's a study going on NOW in the US testing one transcatheter-implanted Aortic valve ("TAVI" -- the acronym for the trial is PARTNER), and we're discussing it on another thread. And a SECOND study is just starting in the US, using a different TAV, the Medtronix CoreValve. Between the two studies, I think 60+ centers are participating (and practicing), and the studies all involve patients who ARE candidates for OHS (otherwise they couldn't randomize them between the two treatments). So I DO think it's more than possible that you, or I, will have the option of TAVI for a future redo.

I also agree that you've done well to get 13 years out of a tissue valve at 24 y.o.. It's possible that there's something in your body chemistry or biology or lifestyle that is tissue-valve-friendly, in which case you could expect even better durability out of your second tissue valve, if you go that way. Or you may have just gotten lucky, and I'm not sure if anybody knows, or even has much of a clue, of which it is.

If you do go for a mech valve, I think the ATS gives the On-X a run for its money, partly just because it seems to be the quietest mech valve, and partly because of the published studies (many of which they've linked on their website) that indicate even better anti-clot characteristics than the On-X, and partly because I like the characteristics that I think probably go along with quietness. I'm a tissue guy, but I didn't really suffer from my 3 months on Warfarin, and home testing would have made it even less nuisance.

 

[SinJun]

I have only met my surgeon once and so far don't quite feel comfortable with him. I get the feeling from him, as I have had from other doctors before, that they are much more comfortable working on people older than they are. I am unaware of how to navigate the intricacies of my HMO to see another surgeon for a second opinion, especially if time is critical. When I mentioned a tissue valve his response was akin to watching me self immolate. If I was going mechanical I was curios about the On-X, he told me "all valves are basically the same, I should just go with the Carbomedics. The study done for On-X without blood thinners was in African wilds, half the patients didn't check in so were counted as successes."

The advice that I have been weighing heavily is about the Ross procedure. In Michigan I had family in the medical field and familiar with many doctors and hospitals. I could get some response about the expertise of a particular surgeon, specialist or practitioner through a network of friends or family just by casually mentioning their name. Much of my nervousness about the upcoming surgery is feeling out of my element.

So I am still considering and reconsidering options, without the luxury of making a decision and letting it sit for a week. I have appreciated my tissue valve for the trouble free pumping for 12 years, then 1 of significant decline. I don't look forward to another surgery let alone many more surgeries. I know that my body and myself, that I don't do well on drugs and try to take as few pills as possible. The Ross may still be a possibility, and with the added benefit of a different surgeon.

I so appreciate all the input. I get to call the surgeon Monday (tomorrow) and discuss options again.

 

[kfay]

SirJun, I don't know how quickly I'd be rushing to have surgery with a surgeon I didn't feel comfortable with. I realize that your new cardio felt you needed surgery within a week, but at the very least, I'd have to make some phone calls to some other surgeons and have my records sent to them for second opinions over the phone if I felt the way you seem to feel about this surgeon you have met. If you are planning on having a Ross, I would definitely put the surgery on hold for a couple of weeks so that you have time to track down the best surgeon you can find who has the most experience doing that surgery. It is not something you want someone to "try" on you.

I'm not suggesting that you do this, but out of curiosity, would postponing your surgery a month so you have time to really find a surgeon you want going to make a big difference?

Kim

 

[Lynlw]

SirJun, I don't know how quickly I'd be rushing to have surgery with a surgeon I didn't feel comfortable with. I realize that your new cardio felt you needed surgery within a week, but at the very least, I'd have to make some phone calls to some other surgeons and have my records sent to them for second opinions over the phone if I felt the way you seem to feel about this surgeon you have met. If you are planning on having a Ross, I would definitely put the surgery on hold for a couple of weeks so that you have time to track down the best surgeon you can find who has the most experience doing that surgery. It is not something you want someone to "try" on you.

I'm not suggesting that you do this, but out of curiosity, would postponing your surgery a month so you have time to really find a surgeon you want going to make a big difference?

Kim

I agree with Kim, you might want to take a little time to make sure this is who you want to do your surgery. Since it will be a REDO, you want to know they have alot of experience with REDOs also. As for valve choice, get what you want to live with, you have already had heart surgery so know what that is like.

Since you live in Cal and had your first surgery so young, I presonally would go to the doctors that specialize in congenital Heart Defects /adult CHD and don't mostly take care of patients who need bypasses. There are quite a few well respected CHD Centers in Cal who do have the experience, with CHD patients and MULTIPLE REDOS.. CHD doctors also tend to be very up to date in the latest research and procedures, since they deal with the most complex patients day in and out.

I don't know what insurance you have, but I'd check out the clinic directory at the Adults with CHD org. you can check by state http://www.achaheart.org/home/clinic-directory.aspx you may have to register to check it , but if you do it is free
They also have a really good forum there with many people who've had surgeries thru out their lives and you can get an idea where they go...Actually I believe their national convention is in Cal this year, but I don't know when off the top of my head.

Good luck..ps how do you get to be a semi pro paintballer? Justin thought that was pretty cool.

 

[Greg a]

Hello, I am new to the forum, but think I have read everything that is here. I have really appreciated all the input and would have loved this when i had my previous surgery.

When I was 24 I had my first valve replacement surgery. I lived in Michigan, was playing semi-pro paintball, and months from getting married. I went with a tissue valve so that it wouldn't interrupt my active lifestyle or varied diet. Now that it is degenerating I am going through some of the same choices, but this time without the luxury of even a month of consideration. I still live a somewhat active lifestyle, I have moved only a year ago to Southern California, and no longer married. This effects the decisions by displacing me from my family support system.

I knew that there was the eventuality that the valve would have to be replaced. The quarterly check-ups in Michigan kept giving me another year. Now that I have moved to California things have accelerated quickly. I went for a check up then to seeing a cardiologist to a surgeon that wants to schedule surgery in a week. I think I still want to go with another tissue valve, but how many times can I go through this? I am a bit surprised how much and how little has changed in 13 years.

Thank you for a place to share.

I have only met my surgeon once and so far don't quite feel comfortable with him. I get the feeling from him, as I have had from other doctors before, that they are much more comfortable working on people older than they are. I am unaware of how to navigate the intricacies of my HMO to see another surgeon for a second opinion, especially if time is critical. When I mentioned a tissue valve his response was akin to watching me self immolate. If I was going mechanical I was curios about the On-X, he told me "all valves are basically the same, I should just go with the Carbomedics. The study done for On-X without blood thinners was in African wilds, half the patients didn't check in so were counted as successes."

The advice that I have been weighing heavily is about the Ross procedure. In Michigan I had family in the medical field and familiar with many doctors and hospitals. I could get some response about the expertise of a particular surgeon, specialist or practitioner through a network of friends or family just by casually mentioning their name. Much of my nervousness about the upcoming surgery is feeling out of my element.

So I am still considering and reconsidering options, without the luxury of making a decision and letting it sit for a week. I have appreciated my tissue valve for the trouble free pumping for 12 years, then 1 of significant decline. I don't look forward to another surgery let alone many more surgeries. I know that my body and myself, that I don't do well on drugs and try to take as few pills as possible. The Ross may still be a possibility, and with the added benefit of a different surgeon.

I so appreciate all the input. I get to call the surgeon Monday (tomorrow) and discuss options again.

WELCOME to our OHS family ....we are all brothers and sisters in Open Heart Surgery...the decisions you face are very personal and daunting so we can only give you WORDS to read and re-read

 

[bdryer]

Hi kfay

This is a world wide forum. Technological advancements move at a different pace depending on your geography. In my little area of the world up here in Western Canada, I was told exactly what I put down in my initial post by my medical team. They told me they were a minimum of 10 years away from valve replacement by cath technology approval for all.

You are very lucky to have the Mayo and other such clinics available to the American people. You are also fortunate to have leading edge technological advancements available to the American people. My home hospital in western Canada moves at a much different pace regarding technological advancements and their approval. We only have two operating theaters for OHS of which only 20 surgeries are accomplished per week. I'm certain the Mayo surpasses us in spades.

I hope for the sake of all, that an alternative to OHS is developed and made available world wide. As for me I'm living with my On-X and ACT. It was huge bringing the On-X to my little city this year and being the first to receive the valve. On-X has been implanted in the USA for how many years? Yup we are several years behind you. Like I said this is a world wide forum and I was only sharing what I learned from my region. I'm glad I joined this forum as it exposes me to the wonderful technological advancements that may be available for heart disease.

Kfay thank you for sharing your research with me.

 

[Bina]

My surgeon in Montreal, Canada, attends conferences in Europe and has done trans catheter VR for several years already,
but mainly on the very aged patients who would not survive regular VR. This type of surgery is definitely headed
towards the general public, but I'm not the type of person to hold my breath waiting for it.

 

[bdryer]

Hi Bina

This is precisely what I was told by my Calgary medical team. The future is to unpredictable. Thats why I like you chose the best of current technology.

Why would I want PRESENT valve in valve technology implanted, living through the hell of a reduced diameter AV due to AS was no fun and scary. Loving my new life time 2.3 cm2 MHV. The future should be amazing for Minimally invasive and Cath technology, but when will the future be available to the masses? Same goes for a replacement for warfarin. I'm not banking on it. Finding something as Liver friendly as warfarin may never be available.

Take Care

 

[MikeB]

I would go with the Mechanical now. I am 28 and had mine since I was 20. To be honest with you I haven't changed my lifestyle because of it. I eat salad on a daily basis, remain active when I can, have played flag football (for fun, no team), shave with a razor, lift weights, etc.... The only thing my cardiologist told me to be careful of is a major impact like running into something at high speed (ex. skiing and hitting a tree) but anyone would be hurt after that.

I am happy with my MHV and I am glad I don't have to go thru another surgery, because it is definitely not something I want to experience again.

 

[yotphix]

I would have to say that I'm with bdryer and Bina. It is true that there is the promise of trans-catheter replacement on the horizon but to make a decision now, based on the hope that things will progress at a given pace seems risky to me. Years ago a dentist told me, when my wisdom teeth were coming in and didn't quite fit, that I should leave them in because in just a few years it would be normal and possible to use them as transplant spares for damaged molars. He couldn't have known that one of them would eventually become terribly infected, primarily because of the lack of space and consequent difficulty in cleaning between them. The dentist who removed it told me that transplants never really worked out as they had hoped. My cardiologist points to that infection as the principle cause of my valve degradation.
Two more points:
1.A trans-catheter valve, inserted into the opening of prosthetic tissue valve will certainly have a smaller effective opening. Of course the prosthetic itself has a smaller opening than a well functioning native valve. Is this opening adequate for an active lifestyle?
2.Ask your surgeon about the potential for scar tissue in re-operations to complicate the surgery. Is it a problem? If so how big a problem and what are the potential consequences?
Best of luck with your decision and your surgery. Bright side? You'll be recovering in Southern California in the summer! Walking on a beach sure beats walking in the snow or in a mall!

 

[neil]

hiya and welcome aboard,as youve read from the posts above there is plenty of opinions, just remember its YOUR choice,talk long and hard with the medical experts around you and pick your choice, am sure whichever one you choose will be brill for you.....

 

[bdryer]

SinJun

Brother Neil Brewer generally gives the above advice to all folks trying to decide on a valve choice. He is 100% correct. It is you and your surgeon who are the coach and team formulating and perfoming the game plan. We at VR are just a bunch of wild fans and cheer leaders.

Neil is a tissue guy and I'm a MHV guy. We both understand the merits and pit falls of either choice. Sure we get into it, but at the days end we are here for each other. I encourage to share your decision with us so we can better support you.

Now go get her done and be happy with your choice.

 

[buff_butler]

My history kind of contradicts what some of the other posters on this thread have written. I had a pulmonary tissue valve implanted when I was 16. When I was 27 I was implanted with 2 melody valves, durring surgery the first one didn't perform properly so they put a second one over top (now im almost 29). I am quite active and was perfectly healthy at surgery time (except for needing heart surgery).

I guess from my perspective; yes its not the best to bet on future technology however with the wave of boomers developing related problems, lots of research dollars are pouring into this market.

my 2 cents. Best of luck.