This is so confusing... Need some perspective

[tigerlily]

I think most of us went half mad deciding which valve was right for us. Dr. Glower was one of the surgeons I interviewed when I thought it might be time to have my aortic valve replaced. He didn't do my surgery only because the path I was on led me somewhere else but not at all because I didn't like Dr. Glower. He impressed me very much! You will be in excellent hands. Dr. Glower told me that he follows hundreds of patient outcomes. Considering my age (53), he felt either valve would work out fine for me. I based my decision to go tissue largely on my personality and lifestyle. I sometimes forget to do very important things. This is especially true when I'm upset or overwhelmed so coumadin didn't seem like a good match for me in that respect. I also like to ride horses and didn't want to give up my dream of owning and riding a horse. I addition, I thought a lot about my health in general. I've had more surgeries (mostly minor) than most people my age and I wondered how being on coumadin would effect future surgeries if this trend continued.

At your age, to go tissue is a harder decision to make. Personally, I wouldn't want to go on through OHS more than twice. Of course, you can't know the future and no valve guarantees you will never need a replacement. It's a bit of a gamble no mater what. However, there is less of a chance of repeat surgery with a mechanical and that is an important fact.

To make my decision, I prayed a lot. I talked to everyone I could who had experience in this area, I relied heavily on this site and I asked my doctors what they would do in my place. At some point, you just know what's right for you.

You will make a good decision. Do your homework and trust your instincts.

 

[JeffRamsey]

Thanks for everyone's advice. Your perspective truly helps the process easier. I go to meet with Dr Glower tomorrow morning and will discuss the tissue option. It will be an interesting conversation since he is apparently friends with Dr Bolling. Right now, I would be more at peace with getting the tissue valve and letting technology develop until the next surgery 15-20 years down the road. It kind of fits my personality, I'm pretty analytic (or indecisive, depending on who you ask) and it keeps my options open while likely minimizing my risk to another OHS 15-20 years from now.

I'll let you know what happens...

 

[JeffRamsey]

Had my pre-op today... lots of fun. Dr Glower talked through the pros and cons of tissue vs mechanical and estimated that 70% of people my age would opt for teh tissue valve in this situation. That's what I'm going to do. He said he'd use a Carpentier-Edwards valve and thinks it could last 15 years.

He also said my aortic root and my aorta were large and might have to be replaced, he won't know until he looks at them on teh TEE Tuesday morning. If he has to replace the root and aorta, he said he'd put in a Medtronics Freestyle valve. He also said the second surgery down the road would be more difficult if the root had to be repalced. I may tell him to do the tissue valve if it's just the valve, but if he has to replace all of it to just go ahead and put in the mechanical. I have a few days to think it over.

 

[Karlynn]

Dr Glower talked through the pros and cons of tissue vs mechanical and estimated that 70% of people my age would opt for teh tissue valve in this situation.

I find this very surprising, as the mechanical is still the recommended valve for someone young. What does "in this situation mean"? Maybe there's something I'm not understanding here.

 

[davidfortune]

Jeff,

From what I understand of your statement. The approach seems reversed to me. If the aorta and root are enlarged then the medtronics freestyle is my valve of choice since it is designed specifically for that situation and has to be trimmed if it is used subcoronary without replacing ascending aorta and without root replacement. What is the reasoning behind the mech proposal IF enlarged aorta and root but freestyle if normal?

If my aorta and/or root were enlarged with BAV I would virtually insist that the surgeon be replacing both. There is some correlation with BAV and connective tissue disorder that causes aortic aneurysm/dissection and aortic root enlargment. Some physicians believe in prophylactic replacement if enlargement is present with BAV. Not all doctors agree with this approach but it seems to be gaining support based on the statistical analysis

Disclaimer: This is my understanding please consult your surgeon/cardiologist and GET A SECOND opinion. I'm not a doctor or a medical professional but I would be having a very strong conversation with my surgeon if enlargement were present. If he argued against replacement of the ascending aorta and root, I would be validating with another top surgeon. I do not have dialated aorta or root but my surgeon and I did discuss and he agreed philosophy would change if dialation were present.

 

[Matt]

I am in a similar same boat

I am in a similar same boat

Jeff,
I am ten days away from surgery and have been following your discussion. At 46, I am going mechanical.....for today anyway. Could not tell you why except it seems like a good fit. With that decision down, it is now choosing between a StJudes or the new on-x. One type for one surgeon and one for another. They seem to have their favorites and what they they like to work with. Still on the fence on this one......good luck and let's compare recovery notes in the coming weeks. Matt

 

[Ross]

Matt by all means if possible, go with the On-x and lets hope that soon aspirin will be all you need to take. It's going to be a while, but at least you'll be ahead of the game.

 

[davidfortune]

Matt - interesting delima. Do you have equal confidence in both surgeons?

The On-X looks promising but obviously doesn't have the same track record. If it works as touted it will be a huge leap forward for mech valves.

I think I would go with the surgeon that I was most impressed with.

As far as valve - go with the less proven but hopeful leap forward (and take more implied risk due to less track record)? Even the St. Jude had less track record at some point when it was new kid on the block. It turned out well. Some other new kids didn't.

Or go with the more proven St. Jude and accept coumadin and current valve hemodynamics and other performance characteristics. Know you miss out on the possibility of reduced ACT.

That's a tough one especially if you are hoping for one valve for life.

My surgeon is hesitant on the On-X because of the lack of track record. He didn't say he wouldn't do it but he didn't seem excited by the prospect. I didn't press (yet) since I haven't made my final choice.

Good luck with your decision and your valve.

 

[JeffRamsey]

Matt, sounds good. I'll let everyone know how it goes.

This is such a tough discussion. I don't think my situation is unique, Karlynn, I think Dr Glower was saying that younger patients are more afraid of being on coumadin forever than of another heart surgery. This link is to a roundtable some cardiologists had a couple of years ago and it hits this topic. They talk about seeing a swing from mechanical to tissue valves in younger people because of that fear of coumadin, the increased risk that necessitates coumadin, and the perceived loss of freedom because you have to be on it the rest of your life.
http://www.onevalveforlife.com/documents/1of3.pdf

David, he said my root and aorta were in a gray area. The aortic root is listed as 'mildly dilated' on my MRI report and measures at 4.3 cm. I think he said 5 cm is the line at which they have to replace it. The MRI report says the ascending aorta is 'not as dilated' as the root with a diameter of 3.7 cm. So that's why it's up in the air. I would rather just have a tissue valve put in now and hope the root and aorta hold up for 15 years until it has to be replaced. But I'm understanding a reop is more difficult after the root and/or aorta is replaced. Any input on that would be appreciated.

His impression of the on-x was that is was a good valve, not as good a track record as teh st jude, but he still puts them in. He was skeptical of hopes for just aspirin because he said every new valve does a trial like that in hopes it would work. I don't think I would want to be a part of that trial. I wonder how they incentivize people to participate.

 

[Matt]

similiar response

similiar response

I spoke with my primary cardiologist yesterday and his views were identical to what you have mentioned. yes, on-x has promise but no track record to speak of and his belief is that a move to aspirin in way off in the future if ever. As for the studies, he mentioned that alot of the studies are done outside of the US as the FDA would have a hard time approving a study in which people would be taken off coumandin and given aspirin at the risk of clotting.

Ross: I am surprised to hear you move towards using the on-x. You must becoming more liberal in your old age I thought you were a tried and true St Judes man.
Matt

 

[davidfortune]

Jeff,

I would be concerned with any dialation as there seems to be some evidence that dialation continues after aortic valve replacement especially in relationship to BAV. I think ANY dialation would be of concern and I think I would be having discussion with more than one cardio and more than on surgeon regarding the risks associated with this condition.

The following articles are the ones that I kept track of related:

http://www.ncbi.nlm.nih.gov/entrez/q...122&query_hl=4

http://ats.ctsnetjournals.org/cgi/co...act/74/5/S1773

http://circ.ahajournals.org/cgi/cont.../106/8/900?eaf

http://www.bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html

The last link is to the bicuspid foundation which isn't specifically limited to aortic dialation/aneurysm/dissection but does discuss. Read the reports under Medical References and Ascending Aorta - Natural History of a dialated ascending aorta... They recommend surgical consideration at 4 cm.

 

[Ross]

Ross: I am surprised to hear you move towards using the on-x. You must becoming more liberal in your old age I thought you were a tried and true St Judes man.
Matt

No sir, my own surgeon wanted to use the On-X valve, but I needed a valve with a graft sleeve attached and On-X does not yet have a model with that feature or I'd be sporting that puppy today!

 

[Mike C]

Jeff,

Some of this doesnt make much sense to me.

First, i would strongly question why they do not repalce root and ascedning aorta at this time. When they repair root, they usuayly do much of the ascednign aorta anyway. at your age and dimension a very good chance you will need it fixed at some point and if nto now you have at least 2 ops in your lifetime if not more. do you know how quickly it is growing? they would be leaving a ticking time bomb in you, it doesnt matter if valve gets replaced aneursym will get worse.

also, i strongly question the statement that 70% of people your age and mine are going tissue, goes against everything i have read and heard over last year.

my only advice is to be careful about racking up too many ohs.

 

[Mary]

Had my pre-op today... lots of fun. Dr Glower talked through the pros and cons of tissue vs mechanical and estimated that 70% of people my age would opt for teh tissue valve in this situation. That's what I'm going to do. He said he'd use a Carpentier-Edwards valve and thinks it could last 15 years.

He also said my aortic root and my aorta were large and might have to be replaced, he won't know until he looks at them on teh TEE Tuesday morning. If he has to replace the root and aorta, he said he'd put in a Medtronics Freestyle valve. He also said the second surgery down the road would be more difficult if the root had to be repalced. I may tell him to do the tissue valve if it's just the valve, but if he has to replace all of it to just go ahead and put in the mechanical. I have a few days to think it over.

Jeff,
I think it's time to stop trying to second guess this and go with what your surgeon suggests. Glower has a good reputation around here, and I'm willing to bet that he has a better handle on your situation than anyone here does. He's going to look at your TEE on Tuesday, so I think that will be about as much information as can be gathered beforehand.
Enough all ready!
I still haven't seen an official surgery date . . . when is it, and I'll get you on our calendar.
Good luck and enjoy your week-end!
Mary

 

[Natanni]

The Mayo in Rochester, a pretty big heart valve center, was very clear that the majority of valves they replace in 35 year olds were replaced with mechanicals. At least this is what we were repeatedly told.

 

[RCB]

Some input for others considering this tough decision

Some input for others considering this tough decision

Had my pre-op today... lots of fun. Dr Glower talked through the pros and cons of tissue vs mechanical and estimated that 70% of people my age would opt for teh tissue valve in this situation. That's what I'm going to do. He said he'd use a Carpentier-Edwards valve and thinks it could last 15 years.

He also said my aortic root and my aorta were large and might have to be replaced, he won't know until he looks at them on teh TEE Tuesday morning. If he has to replace the root and aorta, he said he'd put in a Medtronics Freestyle valve. He also said the second surgery down the road would be more difficult if the root had to be repalced. I may tell him to do the tissue valve if it's just the valve, but if he has to replace all of it to just go ahead and put in the mechanical. I have a few days to think it over.

Jeff if your mind is made up and you have made an informed decision based on your trust of your surgeon that is fine. As other have stated Dr. Glower has a wonderful reputation and I don?t mean to in anyway demean that. I just want to be sure that for the record, for those who might be reading understand what exactly has been stated.

You stated he said about tissue valves in someone your age he ?thinks it could last 15 years.? While, how he phrased it is a true statement, some would say misleading. It COULD last 15 years, it COULD last 20, but it could last 5! The word could implies
a possibility, not certainty or even likelihood. What you want to him to state is what the AVERAGE number of years a 35 year old gets out of this valve before Structural Deterioration occurs. He should also be able to cite a study where he draws his conclusions from.

Here is an example of such a study by the Cleveland Clinic Foundation whose researchers are very pro-tissue:

http://www.ccjm.org/pdffiles/Thamilarasan902.pdf

While I have never seen a study on valve life that breaks down age by year, you can get a pretty good idea by using a range of ages. The data speaks for itself, so you decide for yourself the probability of getting 15 years out of a tissue valve at age 35.

About the 70 % figure, again that may be his experience, but of course he should at least have compiled his own study verifying that statistic. As was stated in the ?One Valve for Life? piece, most surgeons have their own biases. I know when I went to CCF
for my surgery, a well informed former member here had me convinced that they would go tissue with me. It was discussed, but the drs. were all in agreement that if they were me they would go mech. because it gave me the best chance of never having another valve surgery and I had a proven record of compliance with warfarin.

I know for most people, meeting with a person who is going to hold your life in his hands can be an intimidating experience. Most people are nervous and feel like a fish out of water, so we don?t always ?read between the lines.? It is very important to listen to exactly to what the doctor is saying and he should be forthcoming with the research to explain any statistics he cites. After all, he may be the dr, but it?s your life and most people don?t have a spare to make a mistake with.

Furthermore, there are plenty of studies that show large numbers of first generation valves lasting over 35 years. In 5 years, the research will show over 40- testament to fact many mech. valvers (with very crude first generation valves) die of old age with functioning valves being buried with them.

Good luck my fellow future valver

 

[Bryan B]

Jeff,

We talked one on one about all of the possibilites before. It sounds like you've narrowed down the choices. My suggestion (which is purely personal) is to go with your gut feeling...and if you have trust in Dr. Glower, trust his experience and skill and run with it (he's a damn good surgeon). You will be in good hands with the team of surgeons at Duke (and they do work as a team). I have full faith that they will make the right decision for you once they get you opened up and get a good look at the situation. I do agree with the others that you should ask Dr. Glower what his plan is if he thinks your root/aorta looks "iffy" when he gets you open and whether or not you need a "plan B" if he decides your root or aorta needs either reinforcing or replacement. Bottom line...you have reached the point where you need to trust your instinct, trust your decision, and go into surgery at peace with your decision. IMO...going into surgery at peace with your decision and trusting your surgeon is a very important step in the entire process.

 

[JeffRamsey]

Thanks for everybody's advice and support and prayers. My surgery is scheduled for this Tuesday morning at 7:30 at Duke. It has been a rough week thinking through the medical decisions to be made along with the possible implications of the surgery for my family. We have a 3 year old, a 2 year old and a 4 month old (not very good at the whole family planning thing). I do feel much more at peace over the last 24 hours... but then again I might just be tired. I am scared but I feel I have done everything I'm supposed to to prepare for this and I feel strong. My faith is helping me alot. I have a favorite passage in the Psalms that I hope to be my thought as I go into surgery. It says, 'My soul, wait in silence for God only, for my hope is from Him. He only is my rock and my salvation, my stronghold; I shall not be shaken. Trust in Him at all times, o people; pour out your hearts before Him. God is a refuge for us.'

 

[Karlynn]

Jeff, I put you on the calendar. I wish you the best.

(Any possibility that someone can come on and post how you are doing after the surgery??)

 

[Mary]

Jeff,
God Bless and Godspeed.
We'll see you on the other side of this.
Mary