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Midpack

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Joined
May 31, 2012
Messages
161
Location
Argentina
Hi!

You mentionned a cardiac surgeon. I assume you also consult a cardiologist. What is his opinion? Keep in mind that surgeons want to perform surgeries...

Before any surgery, and moreover if it is a MAJOR surgery, you should have several independant opinions. Delaying a needed cardiac surgery is not a good idea, because your heart may deteriorate to a point where it will not recover even after fixing, but having surgery before it is really needed is neither a good idea.

I wish you the best.
 

Protimenow

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Joined
Aug 10, 2010
Messages
2,701
Location
California
In my case, I had my AVR, possibly a bit earlier than was absolutely necessary. My heart WAS damaged by the regurgitation, and would have gotten worse with time.

However, in my case, I was still young and strong (improving my likelihood of recovery), I had a good job, and good insurance. I was between major news cycles, so it was a good time to take some time from work.

Nine months later, there was no job and no insurance. If I had waited, it may have been quite a while before I had a similarly good job (one that had good insurance and that would keep my job until I returned). I don't regret NOT putting AVR off for a while. Sometimes our circumstances, aside from how BADLY a surgery is needed, help us to decide when to get the surgery.
 

Keithl

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Joined
Apr 20, 2019
Messages
246
I know I talked to 2 surgeons and 3 different consults as well as made them show me the measurements on the scan.
 

vitdoc

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Joined
Apr 16, 2017
Messages
60
Location
Southern Ca.
Most if not all patients having this procedure appear to have had Marfans syndrome. This has a high rate of aortic dissection or rupture. I am not sure if there is much track record in non Marfans patients. 46 to 47 mm essentially is no change. The testing is not that precise. So there may not be any real change. If the next study said 50 mm then maybe there is a trend. Anytime there is a major surgical intervention there are significant risks so a very good reason for intervention should exist before surgery is done. So if at 46 mm observation was felt to be OK then having one measurement of 47 to me would not be much of a reason to change course.

With more time there is more data and experience with these new procedures. Having done 7 procedures is not much. I would rather hear that the surgeon has done 100 or more. Get a second opinion or even a third before you jump into surgery.
 

Keithl

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Joined
Apr 20, 2019
Messages
246
Yeah 7 is a blip.i went to Cleveland because they do about a thousand BAV/aneurysm surgeries a year with one of the lowest mortality rates in the country, around 1%.
 

themalteser

Well-known member
Joined
May 25, 2010
Messages
291
Location
UK
Thank you all.
@Keithl and @vitdoc - yep, 7 is quite a small number. I also don't like it. He is a renowned surgeon on other type of interventions, but not on PEARS. This is why I fear I may be a guinea pig.

@Protimenow - I understand your point entirely. It is never a good time to have surgery of course, but true, it could be that this is a good time to intervene, then hopefully I can get on with my life. Waiting is also not good for my sanity. Its been far too long.

@Midpack - Correct, I also have a cardiologist. I am thinking about another opinion, basically I have to admit, I feel that I may upset my current surgeon/cardiologist if I seek for another opinion. Its like I am telling them that I don't trust them. I may ask my doctor to refer me to another cardiologist/surgeon. Do you think I should inform my current surgeon/doctor? Not sure how best to approach (bear in mind that the Netherlands is a small country. We also have insurance etc.)

Again thank you all.
 

vitdoc

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Joined
Apr 16, 2017
Messages
60
Location
Southern Ca.
When I have a patient who has an obvious problem that I know everyone would agree upon I feel slightly annoyed when a patient doesn't go along with my suggestion. But as long as waiting doesn't cause harm I have no problem with them getting another opinion. If the problem is not as well defined and there are no options that would be universally agreed upon I actually may encourage alternative opinions. I think the patient should have a good feeling about the state of knowledge. I also think that if physician gets put off by a patient wanting a second opinion; is a physician I would not want to work with. So don't feel worried about getting another opinion.
It is not trust. It is simply that often things medical are not as well defined as we would like them to be. If the doctor doesn't realize that then he/she is not very good.
 

Protimenow

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Aug 10, 2010
Messages
2,701
Location
California
To some doctors, medicine isn't about the money. To those who have a 'healthy' regard for the money that surgeries may bring in, getting a second opinion may be more than an insult to the ego -- it's probably likely that you'll go with the surgeon who gives you a second opinion (unless you really don't like the surgeon, or the message you get). Even if you're very comfortable with your surgeon, hey, it's YOUR life. You should be completely comfortable with your choice of physicians and whatever actions you decide to take.

But be sure to do a lot of research on the Internet. There's a lot of great information. You may even find some nutritional supplements or magic words that will completely heal you without having to have a surgery. (Okay, I don't know if it's irony or sarcasm, but you KNOW this last bit was BS).
 

Keithl

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Joined
Apr 20, 2019
Messages
246
Thank you all.
@Keithl and @vitdoc - yep, 7 is quite a small number. I also don't like it. He is a renowned surgeon on other type of interventions, but not on PEARS. This is why I fear I may be a guinea pig.
As good as my surgeon was he offered me the Ozaki procedure and after 8 years there had only been 1100 done world wide where Cleveland does like 1000 traditional AVR surgeries themselves each year. I am all for innovation, but not willing to risk my health/life for it.
 

Midpack

Well-known member
Joined
May 31, 2012
Messages
161
Location
Argentina
Hi!

Regarding your question about seeking alternative opinions, you already got excellent answers.

Personally, I do not beleive that you have to tell your current doctor that you are looking for a second opinion. You can tell him or not, its you decision. Of course, i am assuming that you have all your studies in your possession (echos, CT scans, stress tests, whatever). I do not know how is this managed in your country, but here in Argentina, the patient allways keep his own studies. When you visit a doctor, he takes notes, or eventually makes a copy, but allways gives them back to you.

Take care!
 

Keithl

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Joined
Apr 20, 2019
Messages
246
I did not tell anyone I was getting second opinion and I always get copies of my images and reports, I have them all going back over 12 years.
 

Gordo60

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Joined
Apr 3, 2019
Messages
116
Location
Australia (Sunshine Coast)
My aortic root measurement is also 4.7 cm. The hospital where my cardio practices (Prince Charles Hospital, Brisbane) has become the major one of two PEARS centres in Australia. I attended a conference there where PEARS was one of the presentations. There is great excitement around the procedure with a handful of surgeries performed over the last year with excellent outcomes including a very young child. Not all patients have Marfan syndrome. One of the main criteria is that the valve is ok from what I understand. Enquires have been flooding in from all over the country. Surprisingly this procedure was first performed over 14 years ago so it’s not new but slow to take off which is not uncommon given how different it is to the previous approaches.

If desired I could likely be a candidate for this surgery already being in the system there. I spoke to the head surgeon in charge of PEARS at the conference. He consults in the room next to my cardio. However I’m choosing to hold off until the surgeons have done more procedures. I’m still not sure I’d choose PEARs over valve sparring surgery especially given the incredible skill of the surgeon I would use. Regardless of which procedure I choose I’m waiting till I get closer to 5.0 cm before acting.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
689
Location
kansas city, mo
Thank you all.
@Keithl and @vitdoc - yep, 7 is quite a small number. I also don't like it. He is a renowned surgeon on other type of interventions, but not on PEARS. This is why I fear I may be a guinea pig.

@Protimenow - I understand your point entirely. It is never a good time to have surgery of course, but true, it could be that this is a good time to intervene, then hopefully I can get on with my life. Waiting is also not good for my sanity. Its been far too long.

@Midpack - Correct, I also have a cardiologist. I am thinking about another opinion, basically I have to admit, I feel that I may upset my current surgeon/cardiologist if I seek for another opinion. Its like I am telling them that I don't trust them. I may ask my doctor to refer me to another cardiologist/surgeon. Do you think I should inform my current surgeon/doctor? Not sure how best to approach (bear in mind that the Netherlands is a small country. We also have insurance etc.)

Again thank you all.
On getting another opinion. I would advise you to go with your head and heart. If you feel you need to get one, go for it. Never mind what the surgeon thinks, this is your body and you are the advocate for the care of it. It is not that you do not trust them, you just want to make a sound decision. Good luck in whatever you do.
 

themalteser

Well-known member
Joined
May 25, 2010
Messages
291
Location
UK
Thank you all very much. I have now asked my doctor to see another cardiologist for a second opinion. Also, thank you @Gordo60 for sharing the article, its reassuring to see such a positive result on this procedure.
@Keithl I never heard of Ozaki procedure. I will look it up.
 

Ladybug

Active member
Joined
Jul 30, 2019
Messages
36
Thank you all very much. I have now asked my doctor to see another cardiologist for a second opinion. Also, thank you @Gordo60 for sharing the article, its reassuring to see such a positive result on this procedure.
@Keithl I never heard of Ozaki procedure. I will look it up.
I can’t find a facility on line that does the Ozaki technique in America for an adult. Does anyone know if/where it’s done for adults in the USA? I’ve already had one go round with having a serious medical problem solved by using my own flesh. Total comfort and no rejection.
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
246
I can’t find a facility on line that does the Ozaki technique in America for an adult. Does anyone know if/where it’s done for adults in the USA? I’ve already had one go round with having a serious medical problem solved by using my own flesh. Total comfort and no rejection.

Cleveland Clinic has a surgeon trained in it which is why they offered it to me. I gather I was an ideal candidate since I was rather young at 58, healthy, and not other issues. My surgeon was good, he offered, supplied reading material and told me if I was interested to let him know and he would have the surgeon that trained under the inventor of the technique do it with his assistance. I passed, not interest in being a guinea pig.
 

Ladybug

Active member
Joined
Jul 30, 2019
Messages
36
Thank you all very much. I have now asked my doctor to see another cardiologist for a second opinion. Also, thank you @Gordo60 for sharing the article, its reassuring to see such a positive result on this procedure.
@Keithl I never heard of Ozaki procedure. I will look it up.
A second thought I’ve just had.
Cleveland Clinic has a surgeon trained in it which is why they offered it to me. I gather I was an ideal candidate since I was rather young at 58, healthy, and not other issues. My surgeon was good, he offered, supplied reading material and told me if I was interested to let him know and he would have the surgeon that trained under the inventor of the technique do it with his assistance. I passed, not interest in being a guinea pig.
To each his own. I would have jumped on it. There was a time years ago when I swore I would DIE before I had a fake man made device device ever put in my body again. And I would take a chance on this before dealing with blood thinners any day. And if the man is affiliated with the Cleveland Clinic, he’s no slouch. Imagine what he had to know about the heart to have qualified to train. I’m calling the Cleveland Clinic Monday AM. This is not the first time in my life that regrettable Emory doctor’s have failed to tell me of my options.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,701
Location
California
I"m not sure that I'd want a device made by a fake man put into my chest either. I don't quite understand the dread of using warfarin. Personally, I'd prefer something with a very long history of success (and having to take Warfarin) over something unproven, with a possibly limited life that doesn't require anticoagulation. OTOH - if I don't expect to liver longer than the device being implanted--and the chances are good that if or when it fails, the thing can be repaired or replaced, I may opt for the new technologies.

After having been on warfarin for 28 years, (and currently in a wierd low INR situation of my own making), I can still say that being on warfarin is not a very big deal.
 
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