Revisiting TMVR after 2nd opinion

[Gail in Ca]

This is my update. I got an appointment with another heart surgeon. The visit went well and gave me some answers to questions on what to do next. This surgeon was also recommended by my cardiologist and GP. He spoke about a possible 4th surgery to get a mechanical mitral valve. BUT, he said 4th surgeries are extremely rare and the risk goes up.
As he talked to me about my previous surgeries, he seemed to come to the conclusion that I should speak to the interventional cardiologist again and get the answers to my questions about valve life, off label, risk, etc. I left that appointment realizing that a 4th surgery may not be for me. He did say if I really wanted another ohs, he would need all my records from previous surgeries to gage if I’m a candidate. He doesn’t do robotic. So, I left there more calm, I’d have to say.
I saw the Interventional cardiologist last week. He was much more willing to talk about the procedure. He does want all my records from all 3 surgeries. He would need to do a lampoon at the time of the TMVR. He definitely needs to know what type of mitral ring I got. Of course, I have no idea where the card is that gives all that info! Hopefully, it’s in the records.
He did say they use an aortic valve and it may only last 5-7 yrs. He is very thorough, and will not do this tmvr unless I’m a really good candidate. He said if he determines it to be a 10% risk, we will have to discuss it. He didn’t like the idea of that risk. So, I’ll wait a few weeks for him to get the records. I do think he will talk to the other surgeon I’ve seen as well.
So, it’s not just an easy decision for my interventional cardiologist. He will spend a lot of time on my case.
I still might get another opinion, but I’m feeling good about everything.
When you all out there get a tissue valve first, then another second, remember me and know it may be a rough road ahead after surgery number three!!
I’m not as scared, now, and that’s a great feeling!!!

 

[SatoriFound]

This is my update. I got an appointment with another heart surgeon. The visit went well and gave me some answers to questions on what to do next. This surgeon was also recommended by my cardiologist and GP. He spoke about a possible 4th surgery to get a mechanical mitral valve. BUT, he said 4th surgeries are extremely rare and the risk goes up.
As he talked to me about my previous surgeries, he seemed to come to the conclusion that I should speak to the interventional cardiologist again and get the answers to my questions about valve life, off label, risk, etc. I left that appointment realizing that a 4th surgery may not be for me. He did say if I really wanted another ohs, he would need all my records from previous surgeries to gage if I’m a candidate. He doesn’t do robotic. So, I left there more calm, I’d have to say.
I saw the Interventional cardiologist last week. He was much more willing to talk about the procedure. He does want all my records from all 3 surgeries. He would need to do a lampoon at the time of the TMVR. He definitely needs to know what type of mitral ring I got. Of course, I have no idea where the card is that gives all that info! Hopefully, it’s in the records.
He did say they use an aortic valve and it may only last 5-7 yrs. He is very thorough, and will not do this tmvr unless I’m a really good candidate. He said if he determines it to be a 10% risk, we will have to discuss it. He didn’t like the idea of that risk. So, I’ll wait a few weeks for him to get the records. I do think he will talk to the other surgeon I’ve seen as well.
So, it’s not just an easy decision for my interventional cardiologist. He will spend a lot of time on my case.
I still might get another opinion, but I’m feeling good about everything.
When you all out there get a tissue valve first, then another second, remember me and know it may be a rough road ahead after surgery number three!!
I’m not as scared, now, and that’s a great feeling!!!

It is so great that you found someone you feel comfortable with! I think this is half the battle. I am wishing you the best. I have yet to get the first surgery and since I am only 50 and have been reading this forum am pretty sure when it comes to it I will want to go mechanical.

Just a question. I've never had OHS, but I did have a surgery where they cut open my chest and cracked me open to fix my sunken chest (the fix was only temporary of course and my chest is back to pushing my heart into a weird spot). They didn't touch my heart just a ton of stuff about it, this wouldn't count towards number of surgeries right? LOL Maybe a dumb question since it was NOT a heart surgery, but they worked around my heart and am still unsure of what they will find when they eventually do want to replace my valve. When they say multiple surgeries are more risky that refers to actual heart surgeries, right?

Wishing you the best!

 

[Gail in Ca]

That’s a good question. All the surgeons I’ve had or spoken to for my latest issue have mentioned risk due to scar tissue. One recently mentioned greater stroke risk or other complications because of repeat surgeries. I think your surgeon can answer that if he’s (or she’s) done multiple redos.

 

[pellicle]

They didn't touch my heart just a ton of stuff about it, this wouldn't count towards number of surgeries right?

to the best of my knowledge that's correct.

There will be scar tissue around the entry, but not all around the outside of your aortic artery (where it was cut and stitched, nor around your pericardium (which must be cut into and closed) ....

When they say multiple surgeries are more risky that refers to actual heart surgeries, right?

that's my understanding, you should exactly ask using the wording I've used when you have your next consult (because IIRC the cardio didn't get back to you anyway right?)

Do not let this get "out of hand" ... you can't undo some damage (which can be had by waiting too long).

I mean I get it, if you are trying to put food on the table and you just can't make ends meet, I see why you'd delay.

 

[SatoriFound]

to the best of my knowledge that's correct.

There will be scar tissue around the entry, but not all around the outside of your aortic artery (where it was cut and stitched, nor around your pericardium (which must be cut into and closed) ....

that's my understanding, you should exactly ask using the wording I've used when you have your next consult (because IIRC the cardio didn't get back to you anyway right?)

Do not let this get "out of hand" ... you can't undo some damage (which can be had by waiting too long).

I mean I get it, if you are trying to put food on the table and you just can't make ends meet, I see why you'd delay.

Yes. We already have the question about my previous chest surgery. I sort of think some of it will be a wait and see when they open me up. They wouldn't know what damage was done by, say the metal bar they put around me. I remember I could push on the ends of it and move it back and forth inside my chest cavity... And as an earlier iteration of this surgery, I have no clue what care they took to make it as clean as the could. Thank goodness that society figured out this surgery is not effective on small children and now waits until the teen age years. No child should have to go through what I went through.

 

[pellicle]

I sort of think some of it will be a wait and see when they open me up. They wouldn't know what damage was done by, say the metal bar they put around me.

well, that's what medical imaging is for before surgery.

Recall I've had 2 prior OHS before my last. So they did sufficient investigations to make plans.

My view is: let them do whats needed and let them do what you need doing. I'm sorry you went through some things as a kid, perhaps I did too. We are defined not by what happened to us, but by what we choose to do

 

[Chuck C]

Thanks for the update Gail. I'm glad to hear that you've had a second opinion and found a surgeon willing to consider OHS #4, if that is what you decide to do.

I still might get another opinion, but I’m feeling good about everything.

This is very good news. You've done a great job on your end in seeking a second opinion and also getting further evaluation for TMVR. It sounds like you have some very good professionals determined to look at all your records and assist you in evaluating the best course. Glad that you are feeling good about everything following these consults.

When you all out there get a tissue valve first, then another second, remember me and know it may be a rough road ahead after surgery number three!!

I really want to commend you for saying this. It demostrates both humility and a deep caring for other people. When we make decisions as young people, we often do so thinking somehow that we will never grow older. A young person in choosing a valve should always consider what life will be like in their 40s, 50s, 60s and beyond, when they encounter procedure 3, 4 or even 5. Often times it seems this is not considered- perhaps most of the time this is not considered.

It reminds me of a ski trip with my best friend at Squaw Valley, both of us age 17. We were doing some pretty daring jumps, as if nothing could go wrong. I remember my friend pointing to the largest cliff and saying that on his 30th birthday he planned to ski right off that cliff, which would mean certain death. He commented that he had no desire to live beyond 30 and what was the point- no fun being old he said. (as if 30 is old )
On our last run of the day, being our last run, he wanted to catch more air off this one jump than on any of our previous runs. He ended up achieving that and really got some height and distance. Unfortunately, he lost control on the landing and veered off into a large tree. Broke his femur and had to get a titanium bar implanted to hold his bones together.

Today, he's 57 years old, married with two wonderful daughters. I think he's glad that he never skied off that cliff at age 30. But, he still walks around with a little bit of a limp- a reminder of the foolish decision he made at age 17 on that last ski run of the day.

Gail my thoughts and prayers are with you in this next challenge you are facing. You are facing this with calmness and clear headed thinking, and from all appearances, are getting top notch consultations. I have a good feeling that things are going to work out just fine. Please keep us posted.

 

[Gail in Ca]

Thanks for the thoughtful, kind replies.
I’m not feeling the pressure to make a decision right away as I did before the
second opinion. He said I have time and to really pay attention to my symptoms.

 

[SatoriFound]

well, that's what medical imaging is for before surgery.

Recall I've had 2 prior OHS before my last. So they did sufficient investigations to make plans.

In regards to 'investigations': Can they see internal scarring on scans? Either way, I will choose a surgeon who performs high numbers of these surgeries and trust that they have the skill to navigate whatever they find. I'm sure there are plenty of PEX patients who have undergone valve replacement after PEX. Especially since people with Marfan syndrome often have corresponding PEX and valve issues. I did read my post appointment notes and the doctor states I don't exhibit signs of Marfan. He didn't have me do any of the traditional tests for it, so I don't know how he came to this conclusion, it states my arm span is normal, but he didn't measure it. LOL I guess I am just tall and lanky with average arm span.

My view is: let them do whats needed and let them do what you need doing. I'm sorry you went through some things as a kid, perhaps I did too. We are defined not by what happened to us, but by what we choose to do

You are very right. I think there are quite a few who end up on this forum who went through surgical trauma as a child, but if it saves your life It is well worth it. I don't truly know whether my Pectus Excavatum surgery qualifies as life saving, as I was 7, I have my doubts. I think my parents may have done it so that I looked physically "normal". There are cases of PEX that are severe enough in the compression of the heart this early PEX repair is warranted. I tend to think mine wasn't quite this bad. Memories are supposed to fade over time, but I remember the pain after the surgery like it was yesterday, and it was 43 years ago. I think the fact that my repair didn't stay makes it harder to deal with as it seems like unnecessary trauma. That said, surgical pain management has come quite a ways since then. PEX repairs of today have nerve blockers and cryo therapies that are said to help immensely. Reading people's stories here about recovery has helped to calm me regarding any future chest surgery I will need. Thanks to everyone who has shared their experiences.

 

[pellicle]

Can they see internal scarring on scans?

not that I'm aware of, but they can map exactly where nerves are (they don't always appear where they're supposed to) as well as major veins (arteries are more reliable, but still there is variation)

For instance anatomy of the aortic arch

but if it saves your life It is well worth it.

If I may, the surgeon saves your life, then its just cast as being "up to the patient" on how they heal their mind. This is where its left to chance. Personally I took some years at this; perhaps like you I was uncomfortable with having my shirt off in public (swiming events) because of my large highly keloid scar was a center of attention (perhaps mostly to me).

How we heal ourselves is dependent on our own capacity and focus. I wanted to be "just like everyone else" back then. So I worked it out. It was an iterative process that took years and a lot of introspection and self reflection. I started with the Greeks and Romans then gradually found psychology.

The parable of the talents comes to mind for the expectations "God" has of us in performance and self healing. In my mind "God" is realy nature as I've long since rejected much of the teaching of the Church; they are none the less quite valuable human guidance by wise men.

Best Wishes

 

[Gail in Ca]

Just recently, my daughter was researching slipping ribs and other things and she came upon PEX and told me about it. All my growing years at home I lived with a Dad who must’ve had this. He told us the deep pocket in his chest came from being run over by a wagon when he was a child. His parents told him this. His chest always looked this way to us so we didn’t think anything about it. At the beach, he let us pour water into it. He was totally fine with it. I don’t know if his GP ever discussed his chest or whether he never told us the real cause of his sunken chest. It never caused any issues with his internal organs and it never seemed to bother him at all. It was something to find out about him when I am 70!

 

[dornole]

Been thinking about you Gail and I am glad you’re feeling more settled so you can make the wisest decision possible and not suffer emotionally on top of the physical issues you have to deal with. My original cardiologist worked on one of the first TMVRs in the US. If it or another approach can give you more years and healthier years I would be so happy. Wishing you the best.

 

[pellicle]

to all, what Gail says here is important

One recently mentioned greater stroke risk or other complications because of repeat surgeries.

such advice should be taken VERY serioiusly. Surgeons who down play this are not thinking with your best interests at heart. Some complications include (but are not limited to)

• damage to the nerve controlling your heart leading to the requirement of a pacemaker
• increased difficulty of managing post surgical (meaning stemming from the surgery) infections
• requirement at a later stage for needing ACT because of arrhythmias (such as AF, tachycardia or bradycardia)
• increased risk of late endocarditis

So really do think about your age when making the decision and really do think about all the facts not just your (usually misinformed) terror of warfarin.

 

[pellicle]

To all readers in the future:

Gail speaks honestly and with actual experience when she says:

When you all out there get a tissue valve first, then another second, remember me and know it may be a rough road ahead after surgery number three!!

this is exactly what I was told by my surgeon when we were on the precipice of my OHS#3

"good surgeons will not be lining up behind you to do the surgery" only ones who take on the cases where they don't care about good outcomes.

Again, listen to Dr Schaffs presentation:


this is exactly why I advocate as I do here.