Bomb dropped night before surgery

[lynnpc]

Hello everyone!

I was all set to have my 2nd AVR today when I met with my surgeon late yesterday afternoon and was told my CT scan showed MAJOR scar tissue covering all of the replaced aorta which was done during my 1st AVR for bicuspid 6.5 years ago. That was replaced with a bovine which I was hoping was going to last a lot longer than that!! My surgeon now says my risk factor has gone from 8% to 35% so I panicked and cancelled today as I wanted to discuss this with my family. He said he was going to call around about the Transcatheter Aortic Valve procedure as they just are starting it now at Mayo in Jax and he'd rather I go somewhere where it's been done many times, if I choose to go that route.

Wondering if anyone has any info/expertise on this procedure that I can check into. I did a little checking online and I see Emory and Duke would be close and UW Madison, WI is my hometown (not that that would be the reason I would pick it :biggrin2: ) but they were one of the first approved. Surgeon did say they are doing them more in older folks, I'm 53 and maybe not even a candidate! I'm so disappointed because I was mentally prepared to be done with this, my valve isn't going too last much longer!

Thanks everyone!

 

[Agian]

Oops posted the same thing twice.

 

[Agian]

Being younger shouldn't rule you out as a candidate for TAVI. It's for people deemed at higher risk for OHS, I wouldn't think there's an age limit. Maybe your surgeon can show your CT scans to his colleagues. Adam Pick interviews a surgeon on his site who talks about re-operations. Some are better than others with particular situations.

Go to heart-valve-surgery.com and click on Adam's blog. Then scroll down to his interview with Dr Anyanwu

 

[pellicle]

Very sorry to hear that you are facing another OHS so soon.

Stupid question .... but why not go for a valve like the On-X or the Medtronics? Should last longer than the bovine has. Is it just because of anticoagulant therapy?

 

[lynnpc]

Agian, thank you! I'll look into that

Pellicle, in hindsight I wish I had gone mechanical so as not to go through this again, that is what I was going to do today and be done with it forever. Now I'm just wondering about the TAVI as an option instead of OHS right now and hope that years down the road something else will pop up. I'll probably wind up with OHS anyway, just putting the feelers out. Thank you!

 

[scott.eitman]

Agian, thank you! I'll look into that

Pellicle, in hindsight I wish I had gone mechanical so as not to go through this again, that is what I was going to do today and be done with it forever. Now I'm just wondering about the TAVI as an option instead of OHS right now and hope that years down the road something else will pop up. I'll probably wind up with OHS anyway, just putting the feelers out. Thank you!

Oh if we only had Hindsight at first. If Transcatheter does not work out for you, do the research to find a Surgeon skilled in redo ops. These are frequently done by many surgeons. It may be that yours is not as comfortable with them. I can recommend one that is.

Stay well
Scott

 

[pellicle]

Now I'm just wondering about the TAVI as an option instead of OHS right now and hope that years down the road something else will pop up. I'll probably wind up with OHS anyway, just putting the feelers out.

Understand. I would probably be chasing the options too.

I remember when they found my aneurysm. That was quite unexpected. I had been doing well on my homograft for nearly 20 years and had begun to think that I was going to be good for life.

Well that Dream died.

Strangely when they told me I was quite accepting of it. When they said "you'll need surgery on this as soon as possible" I asked: "so do I get to go home tonight?"

I did, and it was another 2 months between diagnosis and surgery.

I think the whole thing was harder on my wife than me. I at least had experience and something to live for : her!

 

[lynnpc]

Oh if we only had Hindsight at first. If Transcatheter does not work out for you, do the research to find a Surgeon skilled in redo ops. These are frequently done by many surgeons. It may be that yours is not as comfortable with them. I can recommend one that is.

Stay well
Scott

Hi Scott,

I don't believe my surgeon is worried, I think he was just laying it out so there were no surprises, he's at Mayo in Jax and has done over 6000 surgeries. I have faith in him, they just aren't doing many TAVI yet and he just put it out there as an option and he would make some phone calls. Who do you recommend, by the way! Thanks!

 

[Guyswell]

Hi lynnpc,

If you're looking for suggestions, I was very happy with Dr. Lytle at the Cleveland Clinic for my first surgery (nine years ago) and my re-operation (one year ago). He's been a heart surgeon there since 1978 and likes challenging cases and re-operations.

http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#1150

 

[Heart Of The Sunrise]

lynnpc: My surgeon Dr. Bavaria is one of the pioneers in the TAVI procedure. Penn has quite a few good videos on You Tube. (like the link in my signature)
Bavaria and Penn are fabulous. I had a very complex successful surgery. I am 5 months post-op and doing great! Good luck!

 

[lynnpc]

Thanks folks!!!

 

[Jkm7]

I'd be on my way to Cleveland Clinic, Mass General or one of the top five heart centers.

Very sorry to hear of your situation but there are so many hugely skilled surgeons/facilities, please know there is the perfect place where you will get great care. This is manageable by the right professionals.
All best wishes.

 

[Rebecca]

Sorry to hear that you have to have surgery again.

Here is a webinar you should watch on Transcatheter Aortic valve:

http://www.heart-valve-surgery.com/videos/tavi-webinar.php

 

[lynnpc]

Sorry to hear that you have to have surgery again.

Here is a webinar you should watch on Transcatheter Aortic valve:

http://www.heart-valve-surgery.com/videos/tavi-webinar.php

Thank you! That was very interesting and answered a couple of my questions! I emailed Adam and he emailed me right back with more info!

 

[Gail in Ca]

Are they able to do the surgery and not worry at all about scar tissue? That would be a good thing!

 

[lynnpc]

Are they able to do the surgery and not worry at all about scar tissue? That would be a good thing!

Gail...I don't think so, that's why the risk factor skyrocketed

 

[Rebecca]

You have to be your own best advocate and do the research. I wish you lived in Atlanta because next month (17th) a group of women that have heart disease are getting to tour and meet the people at CorMatrix. Patients meet scientist.

http://www.northfulton.com/Articles...Matrix-expands-cardioresearch-in-Roswell.html

http://www.cormatrix.com/AboutCorMatrix-21

Relax and listen podcast:
https://healthy.kaiserpermanente.or...1iyT86Ct1qCUVzDb0QERTUYZM95pwSNn-s7D8AN76O4U/

 

[pellicle]

Are they able to do the surgery and not worry at all about scar tissue?

Perhaps I've misunderstood you so forgive me of this is off the mark...

Scar tissue is not just on the surface.

I do a bit of hunting and when "cleaning" an animal for eating we do what butchers and other workers of similar names do, that is cut through the skin and try not to cut the wrong thing. I expect that this is quite like what surgeons do.

Now when cutting through different layers its easy to see when you need to stop because you have reached the start of the next tissue layer. I assume that when surgeons are cutting through the chest cavity that like us they want to avoid cutting heart tissue (like the pericardium). Without scar tissue this is much easier. Sheets are commonly laid over the pericardium these days (I had mine removed in a debridement operation) which is to prevent scar tissue connecting the pericardium and making subsequent reops hard. As they are getting through the bone it must be much more complicated to open up the sternum when the whole thing is gummed up with scar tissue. When we cut into an animal these things just easily separate, which is probably what surgeons operating on a person who has never had surgery looks like.

I am quite sure that scar tissue (on the inside) complicates this for the surgeon.

 

[BAVjohngo]

Really interesting conversation. It is always good to get a second opinion. For me, I was told I had very little calcification after many echos and even a CT or two. It was not until they opened me up that it was noted I had severe calcification. It was difficult to attach a valve because of this. What I noted is they never used contrast dye so the calcification was more difficult to see. Question your technician during your scans. Make sure they get a really clear image.

Granted the scaring is a different issue, the surgeon does not know everything until the chest is opened. What I've read up on in case I have to go through the same issue of re-surgery is valve within valve surgery. The technique is noted in most modern Cardiac journals in your local hospital library. Keep in mind it pays to be educated on the newest procedures but the Cardiologists are also overwhelmed with patients. I found the options were few even though I knew less invasive procedures are out there.

Trust your instincts but do not second guess too much a doctor with many years of experience. In my case, I'm glad I went to another cardiologist because I felt I was dying and I was. That does not mean my previous cardiologist was unqualified. The echo technicians were not giving him all the info. He was mis-informed. The nurses and staff treating you right along the line all need to be professional. It is not an easy field and respect for them goes a long way.

 

[Jkm7]

Lynn has not posted since August 18, 2013. I hope she had successful surgery and is doing well.