Back to square one. Surgeon won't operate on me.

[gocubs]

Hi all,

More of a venting post than anything else. Maybe one of you might cause I'm not feeling so hot at the moment.

I posted a ways back here about options for my 7th open heart surgery: http://www.valvereplacement.org/foru...ts-on-on-x-mhv

Unfortunately...the surgeon has now decided that he will not do the surgery. Says it's too dangerous...he cannot "with good conscience" operate on me. So, now I'm back to square one and have to go get more opinions. Lot of details go into WHY he thinks it's so dangerous but obviously, being a potential 7th, that's a lot of it...if you're curious on details, let me know.

Mainly, they're pushing me toward TAVR with a hard sell. They basically believe with TAVR, they can cram another valve into my aorta, hope it doesn't blow apart, wait 7 years, cram another one in there, then when i'm 45, do open heart surgery at that point when it's even more high risk.

I said, how is surgery when i'm 45 less high risk than when i'm 30? He said, "it's not.. But at least you're not dead at 30."

I feel like TAVR is just kicking the can down the road and taking an even bigger gamble in 15 years. Not to mention, there are lots of risks with TAVR and several specific indications of why it's not good for me to do. They don't share that same opinion and just brush off all my concerns.

Obviously I have to get even more surgeon opinions than the ones i've gotten, but open to any thoughts/feedback/wild ideas from you all. I am kind of frustrated at the moment.

/rant

 

[honeybunny]

I went back and re-read your first post. If I read it correctly, the surgeon who told you that TAVR would be a no go is now saying it's the only way to go. If correct, I would consult with another surgeon ASAP and perhaps a third.

Aside from that, I think I'd lean toward the OHS and mechanical valve now. But that's a hypothetical opinion. You are living the dilemma.

 

[pellicle]

All the points I made in the last reply are unchanged, I won't be back to Finland (and reliable internet) till Wednesday night. As mentioned, happy to discuss

 

[Paleowoman]

You're in a terrible position. Do get a second opinion from another surgeon on this.

 

[dick0236]

Hi all,

Obviously I have to get even more surgeon opinions than the ones i've gotten, but open to any thoughts/feedback/wild ideas from you all. I am kind of frustrated at the moment.

/rant

After seven surgeries by age 30, I would want to talk with surgeons that would try to eliminate the need for any more.......if at all possible.

 

[neil]

IMO I would be putting a lot of work into finding the top surgeon around your area who is top dog in this field, this looks like a job for the best around and that's the person I would be looking to find,

 

[epstns]

I'm with Neil on this one. Yours is obviously a high-risk case. You do NOT want just any surgeon. You want the BEST surgeon, period.

 

[AnnieP]

Hi I am new to the site thanks for having me.I can understand your frustration surely you can talk with your
surgeon and discuss informed consent for the procedure ? It is your life not his that you are talking about provided you truly understand the decision you are making .

 

[neo]

Did you see the study that came out this week about TAVR?? Results were in intermediate risk patients showing similar results to open-heart, but less death and stroke! I'd seriously consider that option...

http://www.investors.com/news/techno...y/?src=A00220A

 

[neo]

Read this for a better understanding of the results...

http://www.medscape.com/viewarticle/877349

 

[zee112]

Did you see the study that came out this week about TAVR?? Results were in intermediate risk patients showing similar results to open-heart, but less death and stroke! I'd seriously consider that option...

http://www.investors.com/news/techno...y/?src=A00220A

The data from that study only compares the results for two years. That's hardly anything to go by.

 

[gocubs]

	]

Thanks for the thoughts, folks. Replies below.

I went back and re-read your first post. If I read it correctly, the surgeon who told you that TAVR would be a no go is now saying it's the only way to go. If correct, I would consult with another surgeon ASAP and perhaps a third.

Aside from that, I think I'd lean toward the OHS and mechanical valve now. But that's a hypothetical opinion. You are living the dilemma.

Technically, this surgeon has been pushing TAVR from the start...he got more insistent when they realized my aorta is pressed up against my sternum. It was my doctors who agreed with me that TAVR wasn't a good option.

My goal is definitely mechanical valve...I want this to be the last surgery, if I can get someone to do it.

You're in a terrible position.

Of this…I am aware.

After seven surgeries by age 30, I would want to talk with surgeons that would try to eliminate the need for any more.......if at all possible.

I hear you, but this bovine valve isn’t going to last forever, and even if I did TAVRs and didn’t end up with multiple strokes from them, I would still need OHS at some point in the future to replace everything when the 2[SUP]nd[/SUP] TAVR falls apart, unless I only plan to live until 45. Considering I plan to live until at least 120, surgery is going to happen at some point.

IMO I would be putting a lot of work into finding the top surgeon around your area who is top dog in this field, this looks like a job for the best around and that's the person I would be looking to find,

I'm with Neil on this one. Yours is obviously a high-risk case. You do NOT want just any surgeon. You want the BEST surgeon, period.

Agreed. I had thought that’s who I found, but clearly not the case so…this is indeed my mission.

Hi I am new to the site thanks for having me.I can understand your frustration surely you can talk with your
surgeon and discuss informed consent for the procedure ? It is your life not his that you are talking about provided you truly understand the decision you are making .

A great point, and I tried, but he basically said it didn’t matter…he won’t do it because a “better option” (TAVR) exists. He and I differ on the meaning of the word “better”

Did you see the study that came out this week about TAVR?? Results were in intermediate risk patients showing similar results to open-heart, but less death and stroke! I'd seriously consider that option..

The data from that study only compares the results for two years. That's hardly anything to go by.

Zee112, exactly that ^. TAVR has so little data on it, and even less data when it’s used on people as young as me who have had multiple previous implantations. In fact, I can’t find much if any research at all supporting the procedure on someone with previous prosthesis replacements and Kono root revisions. Edwards’ own site says that TAVR isn’t meant to be used on people who have had previous replacements

I've done an incredible amount of research on TAVR…one of the bigger studies as far as sample size is this one: http://circ.ahajournals.org/content/130/25/2332

Among the highlights:

A meta-analysis including 4873 patients from 17 studies (randomized, clinical trials and adjusted observational comparative studies) showed that TAVR does not reduce early (at 30 days or in hospital) or midterm (at 3 months–3 years) all-cause mortality compared with SAVR in high-risk patients with aortic stenosis.

Using diffusion-weighted magnetic resonance imaging, new ischemic lesions can be detected in up to 90% of patients after TAVR, a rate that is significantly higher than in patients undergoing SAVR.[SUP]16[/SUP]

In addition, subacute embolization may be caused by persistent lesions on the displaced (not resected) native valve leaflets. A “dead” space between the implanted prosthesis and the native leaflets or between the leaflets and the aortic wall may be prone to thrombus formation.

Paravalvular aortic leakage (PVL) after SAVR is an infrequent event and occurs in <1% of patients.[SUP]22[/SUP] This was also confirmed in the surgical arm of the Placement of Aortic Transcatheter Valve Trial (PARTNER), with an incidence of PVL after SAVR of 0.9% after 2 years.[SUP]3[/SUP] On the contrary, PVL is a frequent complication after TAVR. The GARY registry reported the outcomes of 2763 patients undergoing transfemoral TAVR in 2011; 55.5% of patients had grade I and 7.0% grade II or higher aortic insufficiency as a result of PVL.[SUP]6[/SUP]Similar numbers have been reported from the PARTNER trial (7.0% at 1 year and 6.9% at 2 years).[SUP]3[/SUP] TAVR patients had significantly more total aortic regurgitation at every postimplantation time than patients in the SAVR cohort. Mild, moderate, or severe paravalvular aortic regurgitation was more common in the TAVR group at every follow-up time (P<0.0001).

Since my valve is a piece of calcified crap right now, the dead space between the implanted new valve and the aortic annulus is likely to be fairly large and contribute to paravalvular regurgitation…which is already a bigger risk and was the cause of 4 of my 6 surgeries.

 

[neo]

I thought there have been several studies (at least ongoing) of valve-in-valve surgeries using TAVR?

 

[pellicle]

I thought there have been several studies (at least ongoing) of valve-in-valve surgeries using TAVR?

Not with the levels of complications this fellow has. It's not just like fitting a new tyre on your cars wheel rim.

 

[epstns]

Since you're in Chicago I have to ask -- Have you considered a consult with Dr. Patrick McCarthy at Northwestern Memorial? He used to be head of one of the surgery specialties at Cleveland Clinic until Northwestern recruited him to re-vitalize their heart valve surgery practice. He once admitted to me and my wife "I may not be number 1 in the country for this procedure (aortic valve replacement) but I am SURELY number 2." The man has a tremendous reputation in the valve specialty, having worked on the CE valve development team while at Cleveland, and having helped to design the Edwards Lifesciences bovine pericardial valves. When I first sought a consultation, we found him to be remarkably accessible. I cannot say enough good things about Dr. McCarthy, his staff, and the entire Northwestern Memorial Hospital in general.

 

[gocubs]

Since you're in Chicago I have to ask -- Have you considered a consult with Dr. Patrick McCarthy at Northwestern Memorial? He used to be head of one of the surgery specialties at Cleveland Clinic until Northwestern recruited him to re-vitalize their heart valve surgery practice. He once admitted to me and my wife "I may not be number 1 in the country for this procedure (aortic valve replacement) but I am SURELY number 2." The man has a tremendous reputation in the valve specialty, having worked on the CE valve development team while at Cleveland, and having helped to design the Edwards Lifesciences bovine pericardial valves. When I first sought a consultation, we found him to be remarkably accessible. I cannot say enough good things about Dr. McCarthy, his staff, and the entire Northwestern Memorial Hospital in general.

I have indeed gone to NW...one of those read between the lines types of responses

Next up is the team at Mayo Clinic.

 

[ashadds]

I have indeed gone to NW...one of those read between the lines types of responses

Next up is the team at Mayo Clinic.

team mechanical for you ! Hopefully this one lasts a lifetime for you