Second Aorta Surgery - Need Reccomendations

[dixitworld]

Hi All,

Sorry for asking too much here. But i am unable to make any progress with my thoughts.I am 31/M , married for 1 year only. I had Valve surgery done when i was 23 , means 8 years back, that time my ascending Aorta was 3.9cm that was done in India.

In December 2017 around 4 months back , in CT Scan , Ascending Aorta is found to be 5.2 cm and Aortic root 4.1 cm. I have been asked for elective surgery by many surgeons till now.

I have lot of questions in my head

1. Should i go for the surgery soon or should i continue waiting and check every 6 month if Aorta is increasing more then go for surgery.
2. Should i try changing my insurance as soon i can and go to Cleveland Clinic (Considering they are known as best in US). They provide data for like less than 2% risk for elective root and aorta repair.
3. Should i believe my current surgeon assigned to me from Kaiser insurance - Vicken Melikian and Mario Pompili. Both of them have 30+ yrs of surgery experience. Have little information or review online but when i checked various website for public reporting related to CABG procedure(As data is mostly available for that procedure only) , these surgeons performance is better than usual.When i ask them about the procedure they say we do 150 such cases per year with 98% success rate in your age group. I dont have any data from them to substantiate this claim.
4. As i am on a temporary work visa here till 2019 end , i have only wife with me here with no other family members here. Nor any of my office team members have any idea about my disease who can recommend me anything.

 

[Zoltania]

Hi Dixitworld,

Only your cardiologist can give you real answers about when you should have surgery. You will get support and information about experiences here on this forum, but we can't tell you what would be best for your personal health situation.

It sounds like you have already talked to a non-Kaiser surgeon (Dr. Miller) -- have you gotten an opinion from a second cardiologist yet? Having a relationship with a cardiologist whom you trust is extremely helpful.

As for Kaiser, I can't speak about Dr. Pompili or Dr. Melikian, but I had a positive surgery experience there in 2015. The nurses, doctors, technicians, and aides were all both competent and kind, and I got the impression that Kaiser has good processes in place to ensure quality of care. Unless your surgery is expected to be unusually complex due to your past history, I would think Kaiser Santa Clara would be fine for you.

 

[pellicle]

Hi

Sorry for asking too much here

I don't think you're anywhere near that point yet ...

. But i am unable to make any progress with my thoughts.I am 31/M , married for 1 year only. I had Valve surgery done when i was 23 , means 8 years back, that time my ascending Aorta was 3.9cm that was done in India.

noted

In December 2017 around 4 months back , in CT Scan , Ascending Aorta is found to be 5.2 cm and Aortic root 4.1 cm. I have been asked for elective surgery by many surgeons till now.

I'm not sure what you mean ... do you mean "Many surgeons have asked me if I would prefer to have elective surgery" ...?

1. Should i go for the surgery soon or should i continue waiting and check every 6 month if Aorta is increasing more then go for surgery.

you should be guided by your medical opnion. 5.2 seems like a level that would suggest it, but I'm no expert there...

2. Should i try changing my insurance as soon i can and go to Cleveland Clinic (Considering they are known as best in US). They provide data for like less than 2% risk for elective root and aorta repair.

up to you ... as an Australian with free health care that sort of question is out of my experience

3. Should i believe my current surgeon assigned to me from Kaiser insurance - . I dont have any data from them to substantiate this claim.

I never even thought of seeking "data" on my surgeons and (as I discussed this recently with my friends wife who is a surgeon) such data is relatively meaningless ... because the surgeon is only one part of a team (or system) without data about the hospital and ICU and ... you don't have a clue.

4. As i am on a temporary work visa here till 2019 end , i have only wife with me here with no other family members here. Nor any of my office team members have any idea about my disease who can recommend me anything.

seriously, if you don't work at a medical office who ever does ? Most people in the work place top out at "what do you think is a good car"

you go to professionals to seek advice ... so I'd say listen to that, present what you don't understand / doubt here and maybe some of us can offer suggestions.

Best Wishes

 

[cldlhd]

No need to apologize. I'm no medical expert but if it was me, and it was, I would want to get the surgery done. Unless I missed it you didn't say what kind of valve surgery you had previously. The reason I ask is from what I've read if you have a BAV that can steer them to want to operate on a aneurysm once it crosses 5.0cm. I believe a lot of that is down to the surgeon. My surgeon, Dr. Joseph Bavaria from the Hospital of the University of Pennsylvania, was of that opinion and didn't want to wait until 5.5 cm. I actually had my surgery when the CT scan I had and ascending aneurysm of 4.7 or 4.8cm but post surgery it turned outto measure 4.99 cm and was thin in areas. I don't say this to scare you just to state the facts. I don't know if they take your insurance but you might want to check out HUP and Bavaria, obviously I'm partial but they are highly ranked.

 

[dixitworld]

No need to apologize. I'm no medical expert but if it was me, and it was, I would want to get the surgery done. Unless I missed it you didn't say what kind of valve surgery you had previously. The reason I ask is from what I've read if you have a BAV that can steer them to want to operate on a aneurysm once it crosses 5.0cm. I believe a lot of that is down to the surgeon. My surgeon, Dr. Joseph Bavaria from the Hospital of the University of Pennsylvania, was of that opinion and didn't want to wait until 5.5 cm. I actually had my surgery when the CT scan I had and ascending aneurysm of 4.7 or 4.8cm but post surgery it turned outto measure 4.99 cm and was thin in areas. I don't say this to scare you just to state the facts. I don't know if they take your insurance but you might want to check out HUP and Bavaria, obviously I'm partial but they are highly ranked.

I had my bicuspid aortic valve replaced earlier with ATS 22MM Prosthetic valve. Now since my valve is working fine. Surgeon have recommended that they prefer to replace the aorta with keeping my existing prosthetic valve in. Cardiologist assigned to me didnt seem to have too much of recommendation. He just told me that Surgeons assigned to you are more in understanding of your situation and they seems to be right.

 

[dixitworld]

No need to apologize. I'm no medical expert but if it was me, and it was, I would want to get the surgery done. Unless I missed it you didn't say what kind of valve surgery you had previously. The reason I ask is from what I've read if you have a BAV that can steer them to want to operate on a aneurysm once it crosses 5.0cm. I believe a lot of that is down to the surgeon. My surgeon, Dr. Joseph Bavaria from the Hospital of the University of Pennsylvania, was of that opinion and didn't want to wait until 5.5 cm. I actually had my surgery when the CT scan I had and ascending aneurysm of 4.7 or 4.8cm but post surgery it turned outto measure 4.99 cm and was thin in areas. I don't say this to scare you just to state the facts. I don't know if they take your insurance but you might want to check out HUP and Bavaria, obviously I'm partial but they are highly ranked.

Surgeon claims that , my aorta dilation is due to the fact that i had biscuspid aortic valve and tissues in aorta are not healthy. Even after the valve operation , tissues continues to weakened and hence aorta size is increasing.
Surgeons with individual 50+ aortic surgeries per year seems a decent number to rely on?

 

[DDT77]

98% percent success rate for elective treatment of the aneurysm. Definitely traumatic, but consider the alternative? Perhaps you can wait six - twelve months depending upon growth rate? How confident can one be that at that point in time, the surgery remains 'elective'? What is the success rate for emergency dissection repair? Isn't there a trend to earlier repairs? As a young guy, the risk/reward analysis comes to fix it when it is an elective event.

 

[dick0236]

98% percent success rate for elective treatment of the aneurysm. Definitely traumatic, but consider the alternative?......... What is the success rate for emergency dissection repair? .............the risk/reward analysis comes to fix it when it is an elective event.

I think you've asked and answered your own question. A 2% mortality rate is as good as it gets for a major surgery.......and a lot better than your odds of survival after being wheeled into an ER and hurriedly assembling a surgical team........especially at 4am on a holiday weekend.

 

[cldlhd]

Surgeon claims that , my aorta dilation is due to the fact that i had biscuspid aortic valve and tissues in aorta are not healthy. Even after the valve operation , tissues continues to weakened and hence aorta size is increasing.
Surgeons with individual 50+ aortic surgeries per year seems a decent number to rely on?

That's true , from what I've gathered over the last 4 years is that BAV is a form of connective tissue disorder that often results in an aortic aneurysm.

 

[Agian]

Hi All,

Sorry for asking too much here. But i am unable to make any progress with my thoughts.I am 31/M , married for 1 year only.

You get used to it after a while. Learn to zone out. When we're at her parents and she wants to stay longer, I just start making bear noises. We're driving home within ten minutes.

 

[pellicle]

You get used to it after a while. Learn to zone out. When we're at her parents and she wants to stay longer, I just start making bear noises. We're driving home within ten minutes.

I prefer the more subtle approaches at first ... and I always take the camera and tripod with me to go out and take some photos to minimise my exposure. Its sound practice to reduce ones exposure to radiation.

 

[pellicle]

dixitworld

I believe the following answer is exactly on the money

98% percent success rate for elective treatment of the aneurysm. Definitely traumatic, but consider the alternative?...Isn't there a trend to earlier repairs? As a young guy, the risk/reward analysis comes to fix it when it is an elective event.

and to answer DDT77 , yes, I understood there was that trend ... the only thing one would need to be sure of is that the growth had not "settled" but the measurement of over 5 (and root 4) would be close to what I understood a trigger level ... but I'm not an expert. So (to dixitworld) I'd still pose those questions to your team and press for answers.

 

[Superman]

For what it's worth, mine was 4.9 with a 4.2 root when I had it repaired. The root had grown from 2.6 a couple years prior. I didn't want to wait around see just how fast it would continue to enlarge, or how long it would hold at the current level. In my opinion, that was a losing proposition and just delaying the inevitable for when I would be older, with likely a tougher recovery, and let's face it, medical costs aren't getting cheaper. I had already met my deductible that year. Would have been a lot more expensive to gamble on another year.

 

[dixitworld]

For what it's worth, mine was 4.9 with a 4.2 root when I had it repaired. The root had grown from 2.6 a couple years prior. I didn't want to wait around see just how fast it would continue to enlarge, or how long it would hold at the current level. In my opinion, that was a losing proposition and just delaying the inevitable for when I would be older, with likely a tougher recovery, and let's face it, medical costs aren't getting cheaper. I had already met my deductible that year. Would have been a lot more expensive to gamble on another year.

Thanks Superman. What is giving me headache and sleepless nights is that considering my existing surgeons saying 2 to 3% risk for a young guy like me is a enough statement. These surgeons do 150+ CABG/Valve surgeries and 50 + Aorta replacement surgeries at Kaiser SFO CA.
What your surgeon said to you when you went for second surgery?
Is this much credentials ok for a surgeon or should i try going to Cleveland Clinic , Travelling to Ohio and returning back after surgery definitely is not going to be easy.

 

[Superman]

What your surgeon said to you when you went for second surgery?

My surgeon was okay with either seeing me every six months for a new CT scan, or getting it taken care of right away. Kind of left it up to me. The only thing I felt pretty certain of is that it wasn't going to spontaneously shrink on it's own so the inevitability of either death or a second surgery was clear. I chose the more palatable option and figured sooner than later was better.

You've got 2% or 3% risk on one side, or 100% risk on the other side. The only question on the 100% side is of time.

The risk on the operative side does not decrease as you get older either.

 

[Zoltania]

I did some research on how much experience surgeons needed when I was in the waiting room. This data is for mitral valve surgery (repairs vs. replacement, and minimally invasive vs. sternotomy), but I imagine the required experience is similar for other valve surgeries.

From http://www.sciencedaily.com/releases/2014/04/140430082719.htm: "...it became apparent that there was an 'inflection point' of increased probability for mitral repair when the average annual surgeon volume (a surrogate for surgeon experience) exceeded approximately 20 surgeries a year. Surgeons who performed more than 20 MV surgeries a year were between 3 and 4 times more likely to perform a repair than replacement compared to those who operated less than 20 times a year."

From http://www.annalscts.com/article/view/2883/3799: Re minimally invasive MV surgery: "Ninety percent of [survey] respondents believe more than 20 cases are required to gain familiarity with the procedure, while 85% believe at least one MIMVS case needs to be performed per week to maintain proficiency."

From http://circ.ahajournals.org/content/128/5/483.abstract?sid=c898c3f5-a488-4637-9d17-11daa0d1bd1: "Note: The typical number of operations to overcome the learning curve for minimally invasive surgery was between 75 and 125. Furthermore, >1 such operation per week was necessary to maintain good results."

So it sounds like you are in good shape with your prospective surgeons.

 

[dixitworld]

Thanks Zoltania . Dr at Kaiser has said 2% morbidity and 2% mortality rates are there in such surgery.
Dr at Stanford said to me that In overall for patient like me overall risk is around 2.8%.
I am totally not able to make up mind is Stanford really better than Kaiser or not. And how much these numbers stated here are approximate or factual.
At no place real numbers for redo surgeries and aorta replacement are public.
Sometime i feel i just give up everything and go to one hospital leaving everything on my luck

 

[cldlhd]

Surgeon claims that , my aorta dilation is due to the fact that i had biscuspid aortic valve and tissues in aorta are not healthy. Even after the valve operation , tissues continues to weakened and hence aorta size is increasing.
Surgeons with individual 50+ aortic surgeries per year seems a decent number to rely on?

There are people out here that know much more than I do about the subject but I think there has been debate as to whether the aortic issues are caused by the hemodynamics of the valve or if its something genetic that also causes the valve to be bicuspid. I think a lot of people in the field are leaning towards the genetic explanation, my surgeon is in that camp, as there are a lot of people who have their valve replaced then get an aneurysm later and apparently the tissue of the aorta appears different.

 

[dixitworld]

I am now even thinking to visit Cleveland clinic. Who are the best surgeons at Cleveland clinic for aortic root and ascending aorta repair. Any advice for scheduling interview soon there.
Any other hospital which has equal or better outcome for this surgery?

 

[DJM 18]

Eric from Colorado recently has his valve repaired in Cleveland and can offer some ideas as to how to solicit an appointment.

There are a few other centers for aorta disease that have very good outcomes:

- Duke
- Mayo
- Penn - Dr. Bavaria
- New York - Sinai (Dr. Stewart) / Presbyterian
- Northwestern

And I recently posted on the 25 year outcomes from Yale (Dr. Elefteriades) who has a well respected aortic center and have in fact other published papers on this topic specifically.

"At 5, 10, and 20 years, freedom from major events and reoperations on the root were 97.8, 95.4, and 94.39%, and 99.0, 99.0,and 97.9%,respectively. Survival in patients aged <60 years was 92.0, 90.1, and 79.8% at five, 10, and 20 years versus 88.4, 67.9, and 42.6% in patients aged ≥60 years (p=0.001). Compared with age- and gender-matched controls, survival was not significantly different (p=0.20)."

"CONCLUSIONS: Composite graft aortic root replacement is associated with low operative risk, excellent long-term survival, and low incidence of reoperation and late event"

Note: the operative mortality at 14/449 accounts for 11 patients with Acute type A dissection, urgent/emergent procedures, patients over the age of 80 and patients with significant comorbidities.

https://pdfs.semanticscholar.org/f0e...1ab335f84c.pdf

https://promedicacme.com/wp-content/...iades-John.pdf