Do I need Surgery now? Someone who can read a report, please help

[PeteCrev]

DO I need surgery now?

I have a BAV and had an echo done and the opening is at a 1.0.
Just had the MRI with the dye contrast and it states my ascending aorta demonstrates maximum AP and transverse diameters of 3.8 to 3.9 x 3.8 cm respectively with tapering in the aortic arch consistent with borderline ectasia of the ascending aorta for the patients stated age.
Can someone tell me in English what this means? And Opinions please????

Symptoms are:
Dizziness not to passing out, just unfocused.
Winded after while walking uphill or stairs
Ankle cramping

 

[clay_from_nj]

Any signs of myopathy, hypertrophy, etc, or low LVEF? They may also want to do a cath. Numbers aside, how do you feel? All this stuff factors into the decision. As the results are in, do you have an appointment to discuss this with your doctor? If not, I'd have called him already. I see you're in New Jersey, where are you going for the cardiac stuff? As a child, I went to Deborah and much later, with the BAV, I went to Cooper in Camden. Of course, I always lived in South Jersey.

 

[dick0236]

I doubt there is anyone on this forum that can answer your "DO I need surgery now" question. We may have a few medical professionals that come by every now and then....but I doubt they could answer you based on your information. Continuing to be followed by a Cardio you have trust in, is probably the best you can do at this point. Stay with this Forum and learn all you can.....and when the time comes, you will be more comfortable with your decisions.

 

[PeteCrev]

Any signs of myopathy, hypertrophy, etc, or low LVEF? They may also want to do a cath. Numbers aside, how do you feel? All this stuff factors into the decision. As the results are in, do you have an appointment to discuss this with your doctor? If not, I'd have called him already. I see you're in New Jersey, where are you going for the cardiac stuff? As a child, I went to Deborah and much later, with the BAV, I went to Cooper in Camden. Of course, I always lived in South Jersey.

What is the Cath...I think I already did that....with the contrast dye. What is myopathy, hypertrophy, etc, or low LVEF? I feel a lot of worse now that I have been diagnosed.

 

[PeteCrev]

I doubt there is anyone on this forum that can answer your "DO I need surgery now" question. We may have a few medical professionals that come by every now and then....but I doubt they could answer you based on your information. Continuing to be followed by a Cardio you have trust in, is probably the best you can do at this point. Stay with this Forum and learn all you can.....and when the time comes, you will be more comfortable with your decisions.

LOL I understand. I just wanted to know about these numbers that I really don't know anthing about. This is all new to me just diagnosed a year ago with BAV at age 37.

 

[PeteCrev]

Any signs of myopathy, hypertrophy, etc, or low LVEF? They may also want to do a cath. Numbers aside, how do you feel? All this stuff factors into the decision. As the results are in, do you have an appointment to discuss this with your doctor? If not, I'd have called him already. I see you're in New Jersey, where are you going for the cardiac stuff? As a child, I went to Deborah and much later, with the BAV, I went to Cooper in Camden. Of course, I always lived in South Jersey.

I also have an appointment in November with 2 surgeons in Jersey SAUNDERS out of Beth Israel and LEE out of Robert Wood Johnson

 

[neil]

agree with dick, you really need to be talking to the experts about this,none of us are doctors or medically trained as far as i know,we can offer opinions but anything thing else needs to be sorted by your docs, maybe see your local doctor to discuss things as you are clearly on edge about things, good luck,

 

[clay_from_nj]

What is the Cath...I think I already did that....with the contrast dye.

Cardiac catheterization. A catheter (long thin tube) is threaded in through an artery, usually in the groin. This is used to check for blockages as well as reading pressure and flow in various places in the heart and blood vessels.

What is myopathy, hypertrophy, etc, or low LVEF?

Myopathy - muscle weakening, deterioration. Hypertrophy - "enlarged" heart. LVEF - left ventricular ejection fraction, a measure of the heart's efficiency and performance.

I feel a lot of worse now that I have been diagnosed.

The main reason for valve replacement is to prevent the heart from weakening too much as well as preventing/repairing possible damage to the aorta. Some people never need surgery. Some have issues with aortic aneurysm (of which I have no personal experience) and some experience weakening heart muscle resulting in CHF (congestive heart failure) which can cause weakness, tiredness, and shortness of breath. That's where I was at when I had my valve replaced. I am now working VERY hard to try and regain as much strength and efficiency to my heart as I can.

Please understand that you are fortunate to have this diagnosed and potentially repaired, because before the surgical options existed, you could very likely have died from an aortic dissection or suffered CHF for a year or two before finally succumbing. With the tools now available, you are much more likely to lead a long and very health life. Here on these forums we have runners, bikers, weightlifters, skiers, and so on, some of whom were already athletes and others who started after surgery.

 

[epstns]

Pete - I'm not a doctor either, but I would not be surprised if your cardio says it is nearly time to consider who your surgeon may be. Usually they begin to tell patients to schedule surgery soon if the patient is experiencing any of the "cardinal" symptoms -- chest pain, shortness of breath, fainting. Your symptoms are disturbingly similar to two of the three. Your dizziness may be "pre-syncope" or nearly fainting. Your getting "winded" may be a mild case of shortness of breath. I would not say that these ARE the cardinal symptoms, but I would be sure to discuss them with your cardio at your next visit. The statistics show that multi-year survival rates for aortic stenosis patients drop in a scary way once the cardinal symptoms are present. I'd rather be safe than sorry.

 

[PeteCrev]

Pete - I'm not a doctor either, but I would not be surprised if your cardio says it is nearly time to consider who your surgeon may be. Usually they begin to tell patients to schedule surgery soon if the patient is experiencing any of the "cardinal" symptoms -- chest pain, shortness of breath, fainting. Your symptoms are disturbingly similar to two of the three. Your dizziness may be "pre-syncope" or nearly fainting. Your getting "winded" may be a mild case of shortness of breath. I would not say that these ARE the cardinal symptoms, but I would be sure to discuss them with your cardio at your next visit. The statistics show that multi-year survival rates for aortic stenosis patients drop in a scary way once the cardinal symptoms are present. I'd rather be safe than sorry.

Steve- Thank you for your comments for all my post, very helpful. When I was diagnosed a year ago I never thought theses symptoms were indeed symptoms, just thought I was out of shape. But now after being borderline severe, I hope it’s not just my head playing games. I had the MRI scan the other day but don’t really know how to read this report? And don’t know what I’m looking for.
I have 2 consultations with surgeons in early November to discuss my options. I had an appointment with Dr. Stelzer in Manhattan for the ROSS Procedure, but realized soon after that they did not accept my insurance. Very disappointed, after hearing all the positive feedback about the ROSS and Dr. Stelzer being the best in the world and now I have not found anyone qualified.

 

[pellicle]

after hearing all the positive feedback about the ROSS ....

pardon me, but what good feedback is there on the Ross? A little bit longer than a tissue valve in a younger patient and perhaps a little bit longer than a homograph

The feedback I read on it here (which I must say is my only exposure to it) suggests you get less than 20 years.

even clinics promoting it suggest this
http://www.wehealny.org/services/bi_cardiacsurgery/proc_ross.html

The major advantage of using tissue valves during valve replacement instead of mechanical valves is that lifetime blood thinning medication is not required,

so is that the sole criteria? Avoiding warfarin?

80 percent of patients alive after 20 years and fewer than 15 percent needing further valve procedures

which is far less than mechanical, and the fewer than 15 percent needing further valve procedures suggests that they died of other causes first.

as the site goes on to say:

The Ross Procedure works best on patients who have a 25 year life expectancy

So how old are you? 38? So at mid 60 or earlier you'll need another surgery. I find it interesting that the people who are not ideally suited to tissue valves (younger people) seem to be the ones who prefer to choose them. Even more curiously the video presentation by the Mayo I posted suggests that elderly benefit more from mechanicals than tissue valves too.

Alternatively what I read suggests that a mechanical will:
* increase your lifespan over any other valve choice
* you will not avoid being on warfarin over the span of the tissue valve it may thrombose and you may need to be on warfarin from that.
* as you age you will be increasingly likely to require warfarin for other reasons
* as all tissue valves decay (and it will you must know that) it will leave you less healthy, thus when you present to surgery on the reoperation you'll be weaker and older.

I don't know why people are so horrified of warfarin, its not like in this video:
[ link ]


but of course you must choose according your wishes, for only you live your life and must live with the results. I am only trying to shed light on all the possibilities.

So, if you don't mind, what were the good reports on the Ross aside from not being on warfarin?

PS: I wanted to add this to make my view on this clear: This is not a competition, and I am most certainly not a judge in this. I actually have ZERO invested in you or your life, but if you have a wife an children perhaps they do. They are the ones you should talk openly and frankly about this with. I was recently told that my wife (who I knew was very agitated at my surgery) spoke with her friend about the possibility of being widowed early in life.

 

[PeteCrev]

pardon me, but what good feedback is there on the Ross? A little bit longer than a tissue valve in a younger patient and perhaps a little bit longer than a homograph

The feedback I read on it here (which I must say is my only exposure to it) suggests you get less than 20 years.

even clinics promoting it suggest this
http://www.wehealny.org/services/bi_cardiacsurgery/proc_ross.html



so is that the sole criteria? Avoiding warfarin?



which is far less than mechanical, and the fewer than 15 percent needing further valve procedures suggests that they died of other causes first.

as the site goes on to say:


So how old are you? 38? So at mid 60 or earlier you'll need another surgery. I find it interesting that the people who are not ideally suited to tissue valves (younger people) seem to be the ones who prefer to choose them. Even more curiously the video presentation by the Mayo I posted suggests that elderly benefit more from mechanicals than tissue valves too.

Alternatively what I read suggests that a mechanical will:
* increase your lifespan over any other valve choice
* you will not avoid being on warfarin over the span of the tissue valve it may thrombose and you may need to be on warfarin from that.
* as you age you will be increasingly likely to require warfarin for other reasons
* as all tissue valves decay (and it will you must know that) it will leave you less healthy, thus when you present to surgery on the reoperation you'll be weaker and older.

I don't know why people are so horrified of warfarin, its not like in this video:
[ link ]


but of course you must choose according your wishes, for only you live your life and must live with the results. I am only trying to shed light on all the possibilities.

So, if you don't mind, what were the good reports on the Ross aside from not being on warfarin?

Thank you....After reading and researching the ROSS and the 500+ patients Dr. Stelzer from Manhattan had performed on...it seemed like a great option, especially that there's a chance you will not need blood thinners. But on that note the other side of me is why disturb 2 valves when you don't really have to.

 

[pellicle]

Hi

Thank you....

actually, no, thank you ... its relieving to have a conversation about this rather than recitation of dogma.

After reading and researching the ROSS and the 500+ patients Dr. Stelzer from Manhattan had performed on...it seemed like a great option, especially that there's a chance you will not need blood thinners.

well that's good, but I'm sure you'll find many thousands of success stories on mechanical valves.

On the point of blood thinners: the fellow presenting for the Mayo rounded up the literature on warfarin with these points.

Warfarin Management is the key point to understanding the data. Time In Range under Usual Care was about 50% with Patient Self Testing it was 89%

Studies (meaning more than one) have shown that PST reduced the bleed complications from 11% to 4.5% and Thromboembolic from 3.6% to 0.9%

This brings numbers down to on par with tissue valves. A major study of over 500 patients found with relationship to anticoagulants for tissue valves:
at 5 years 16% on warfarin (aortic, mitral 36%)
at 15 years 33% on warfarin (aortic, mitral 67%)

I do not know how this relates to the valves changed in the Ross.

The presenter in the Mayo review asks:
"how many curves do you have to look at with mechanical valves that do a little better than tissue valves to be a little uncomfortable with the notion that there is absolutely no difference in survival"

its a good review of the literature and a good review of even the Mayo Clinic's findings.
http://mayo.img.entriq.net/htm/MayoPlayer1.html?articleID=4071

But on that note the other side of me is why disturb 2 valves when you don't really have to.

and you'll get one tissue prosthetic valve too.

anyway, pardon me, I am not trying to push a barrow and this issue is done and dusted for me personally (I already have a mechanical and have had 3 operations)

 

[PeteCrev]

Hi


actually, no, thank you ... its relieving to have a conversation about this rather than recitation of dogma.



well that's good, but I'm sure you'll find many thousands of success stories on mechanical valves.

On the point of blood thinners: the fellow presenting for the Mayo rounded up the literature on warfarin with these points.

Warfarin Management is the key point to understanding the data. Time In Range under Usual Care was about 50% with Patient Self Testing it was 89%

Studies (meaning more than one) have shown that PST reduced the bleed complications from 11% to 4.5% and Thromboembolic from 3.6% to 0.9%

This brings numbers down to on par with tissue valves. A major study of over 500 patients found with relationship to anticoagulants for tissue valves:
at 5 years 16% on warfarin (aortic, mitral 36%)
at 15 years 33% on warfarin (aortic, mitral 67%)

I do not know how this relates to the valves changed in the Ross.

The presenter in the Mayo review asks:
"how many curves do you have to look at with mechanical valves that do a little better than tissue valves to be a little uncomfortable with the notion that there is absolutely no difference in survival"

its a good review of the literature and a good review of even the Mayo Clinic's findings.
http://mayo.img.entriq.net/htm/MayoPlayer1.html?articleID=4071




and you'll get one tissue prosthetic valve too.

anyway, pardon me, I am not trying to push a barrow and this issue is done and dusted for me personally (I already have a mechanical and have had 3 operations)

Being an expert with surgeries.....and I'm not being sarcastic.....So much more than i am.....So let me ask you this......ROSS or Mechanical if you were in my shoes? Healthy other than this and 38 years old.

 

[pellicle]

Hi

ROSS or Mechanical if you were in my shoes? Healthy other than this and 38 years old.

When I had my homograft I wasn't really consulted about it. But back then there were not the systems for managing warfarin that there are now. Warfarin was painted as a dark horse with few details.

right now ... knowing what I have learned since surgery ... having been through what I've been through. Knowing that even if I'd had a mechanical I may have needed reoperation due to aneurysm (which was a more pressing issue than the failing homograft) I would probably have a mechanical. You can find mech warriors out there who have had an operation at less than 50, only had one operation. Still working on their mech valve even after 30 years ... you just can't find that with tissue or I suspect Ross (I have not done substantial reading).

I can't know that's what I'd do at 38 because I'm not 38 anymore and I know heaps more now than then.

I asked about the homograft back then and was given answers like:
* we don't know
* it will become part of your body
* you may get a lifetime on it, but we just don't know.

I really do not wish to tell you what to do. Are you married? (if yes, have you discussed this with your partner?)

I have honestly found no reliable data against warfarin (my wife and I have searched) other than to suggest that
* links to osteoporosis are unsubstantiated, follow up tests show no effect.
* effects of warfarin on osteoporosis may be an artifact of the cohort studied,
* self testing / self management makes very significant improvements in outcome of warfarin management
* less than 1% of people in the USA self test or self manage (something about insurance companies pressuring and clinics not liking being cut out of the gravy train)

reoperation complications

These do not surface easily in the stats as they mainly deal in mortality. I didn't die, so I don't appear in the gross stats about reoperation. I remain free from reoperation and alive.

Yet a simple infection appeared and was a difficulty in management (I still just don't know either). I have a friend who had a staph infection underwent dehiscence (at home at the table, heart and lungs visible, family were traumatised) rushed to hospital, had 9 months of treatment to clear the staph, lost his sternum in the process (has a piece of muscle over where the ribs join now {note: a member here has had a sternum removal, I am uncertain as to why, I might yet be a candidate for such} ... but still he is "free from reoperation and mortality"

There are heaps more risks in reoperation than many would like to mention. The only study I have ever seen which suggests that risks of warfarin are equal to risks of reoperatoin was published by a clinic who prefers reoperations and a reading of that study showed a very trivial examiniation of the literature.

I recommend you PM TheGymGuy here and ask how he feels, he is a power lifter and I seem to recall about your age.

[personal interjection: I do wonder how many reject mechanical because of the issue that "I have never been on daily meds before", its a milestone in the common view of what it means to get old. I wonder if the psychology here is a significant issue.]

It is still pre-operation time, so now is the time to do research. Arm yourself with all you can find. It is your body and only you (well and your family) will bear the 'costs'.

Lastly I would ask you a question. What would you do if you got a Ross had it failing after 7 years?

I wish you all the best in your decision.

PS: initially (before this last surgery) I had viewed a life on warfarin with trepidation. Before the surgery my wife (also anxious about my anxiety about it) did a lot of reading. She didn't find anything dire. Subsequent to the surgery (Nov 2011) I have found warfarin and self management a non issue. You will find others here echo such findings. One of my colleagues at work got diabetes from some viral infection. I have seen how frequently he needs to monitor blood sugar. Warfarin is once a week, not 4 times a day. So he tests 28 times more than me. Also as a diabetic he will suffer greater losses in health (nerves) over time. The implications of poor management of insulin are far more dire with that. Yet curiously no one seems to go on about it ...

PPS: ahh ... sorry, but it just occured to me. We have a Norweigan here, she has a mechanical. In Norway their medical system (it seems) does not condone fitting anything else to younger patients. Yet in the USA the choice is offered. Curiously also in the USA does typically NOT offer the choice to self test and self manage warfarin (with clearly demonstrated benefits over decades) while in Norway they give the self testing stuff to you. I also got my self testing meter given to me in Australia. It does make you wonder (as a researcher) about the reasons for all this "choice" in the USA. Reoperation is good for GDP.

 

[PeteCrev]

Hi



When I had my homograft I wasn't really consulted about it. But back then there were not the systems for managing warfarin that there are now. Warfarin was painted as a dark horse with few details.

right now ... knowing what I have learned since surgery ... having been through what I've been through. Knowing that even if I'd had a mechanical I may have needed reoperation due to aneurysm (which was a more pressing issue than the failing homograft) I would probably have a mechanical. You can find mech warriors out there who have had an operation at less than 50, only had one operation. Still working on their mech valve even after 30 years ... you just can't find that with tissue or I suspect Ross (I have not done substantial reading).

I can't know that's what I'd do at 38 because I'm not 38 anymore and I know heaps more now than then.

I asked about the homograft back then and was given answers like:
* we don't know
* it will become part of your body
* you may get a lifetime on it, but we just don't know.

I really do not wish to tell you what to do. Are you married? (if yes, have you discussed this with your partner?)

I have honestly found no reliable data against warfarin (my wife and I have searched) other than to suggest that
* links to osteoporosis are unsubstantiated, follow up tests show no effect.
* effects of warfarin on osteoporosis may be an artifact of the cohort studied,
* self testing / self management makes very significant improvements in outcome of warfarin management
* less than 1% of people in the USA self test or self manage (something about insurance companies pressuring and clinics not liking being cut out of the gravy train)

reoperation complications

These do not surface easily in the stats as they mainly deal in mortality. I didn't die, so I don't appear in the gross stats about reoperation. I remain free from reoperation and alive.

Yet a simple infection appeared and was a difficulty in management (I still just don't know either). I have a friend who had a staph infection underwent dehiscence (at home at the table, heart and lungs visible, family were traumatised) rushed to hospital, had 9 months of treatment to clear the staph, lost his sternum in the process (has a piece of muscle over where the ribs join now {note: a member here has had a sternum removal, I am uncertain as to why, I might yet be a candidate for such} ... but still he is "free from reoperation and mortality"

There are heaps more risks in reoperation than many would like to mention. The only study I have ever seen which suggests that risks of warfarin are equal to risks of reoperatoin was published by a clinic who prefers reoperations and a reading of that study showed a very trivial examiniation of the literature.

I recommend you PM TheGymGuy here and ask how he feels, he is a power lifter and I seem to recall about your age.

[personal interjection: I do wonder how many reject mechanical because of the issue that "I have never been on daily meds before", its a milestone in the common view of what it means to get old. I wonder if the psychology here is a significant issue.]

It is still pre-operation time, so now is the time to do research. Arm yourself with all you can find. It is your body and only you (well and your family) will bear the 'costs'.

Lastly I would ask you a question. What would you do if you got a Ross had it failing after 7 years?

I wish you all the best in your decision.

PS: initially (before this last surgery) I had viewed a life on warfarin with trepidation. Before the surgery my wife (also anxious about my anxiety about it) did a lot of reading. She didn't find anything dire. Subsequent to the surgery (Nov 2011) I have found warfarin and self management a non issue. You will find others here echo such findings. One of my colleagues at work got diabetes from some viral infection. I have seen how frequently he needs to monitor blood sugar. Warfarin is once a week, not 4 times a day. So he tests 28 times more than me. Also as a diabetic he will suffer greater losses in health (nerves) over time. The implications of poor management of insulin are far more dire with that. Yet curiously no one seems to go on about it ...

PPS: ahh ... sorry, but it just occured to me. We have a Norweigan here, she has a mechanical. In Norway their medical system (it seems) does not condone fitting anything else to younger patients. Yet in the USA the choice is offered. Curiously also in the USA does typically NOT offer the choice to self test and self manage warfarin (with clearly demonstrated benefits over decades) while in Norway they give the self testing stuff to you. I also got my self testing meter given to me in Australia. It does make you wonder (as a researcher) about the reasons for all this "choice" in the USA. Reoperation is good for GDP.

Helpful information. Well I have a consult with the surgeons in November and will let you know our decision.....Thanks again for your time, help, and experience! Best wishes!