Results of Jerry's app't with surgeon

[csutherland]

It wasn't a very uplifting appointment, I must say. This surgeon thinks it's going to risky business, citing mortality rates of 15-20%. He wants to watch it for 3 months to see at what rate it grows. He thinks surgery at about 6 cm is advisable. It's 5.2 now. He says it's a balancing act between the risk of surgery and risk of rupture. Jerry said "I feel like a ticking time bomb" and the Dr replied, Well, in a sense you are!"

I asked if another test such as CT or MRI might give a different measurement, but he's so confident in the cardio's ability who performed and read the TEE that he doesn't see any need for different tests right now. He set up another TEE for Apr 13.

Meanwhile I'm going to be checking with other surgeons: maybe the one in St Louis that someone gave me. I have to look it up again--it was a Greek name. Also some in Houston and Cleveland. The surgeon we saw today is the one who did his AVR and pericardial window in 2002. He's really good and normally quite optimistic, but he doesn't seem too fond of doing this, and I believe a good part of it is because of Jerry's prior surgeries making it riskier, etc. Also, I asked him how many of these he's done and he says he does about 10 a year. I got copies of the echo and TEE reports so I'd have them to fax. Will they also want records of the AVR and PW from 2002?

 

[Ross]

Sorry but I'd be totally uncomfortable sitting around at 5.2. Yes he is a time bomb. Mine was less then that and it went south quickly and blew. I guess do what you all think best, but this makes me very nervous. Possibly because I know what it feels like when it happens.

 

[medtronic of borg]

Feel like?

Feel like?

Ross drop me a line I am curious as to how it feels.
Medtronic of Borg

 

[KathyH]

I would definately go for a second or third opinion at one of the larger heart centers, and I would do it now. I would find someone who has more experience and has a lower risk. It is very scary feeling to know that you are a ticking time bomb. Good Luck and keep us posted.
Kathy H.

 

[Phyllis]

I would definitely get all records including previous surgeries and get another opinion from one of the larger heart centers. Cleveland has on-line information about getting another opinion by sending them the records. http://www.clevelandclinic.org/heartcenter/

 

[perkicar]

Cleveland Clinic response

Cleveland Clinic response

I would definitely get all records including previous surgeries and get another opinion from one of the larger heart centers. Cleveland has on-line information about getting another opinion by sending them the records. http://www.clevelandclinic.org/heartcenter/

I used the online appointment request and was impressed at how quickly they got back to me with the information they wanted me to send (as well as who they thought I should send it to, based on my history). It was the next day when I heard from them, and I heard from Dr Lytle on Jan 5. I have appointments next month to go there for a full eval. I think I put a brief (just the facts, ma'am) in the comments section so they knew I'd had Hodgkin's and Breast cancer, as well as radiation and chemo. So they knew the basics of what I was dealing with. The details they can get from the records. They will want a tape of your latest TEE (it has to be within the last 4-6 months, I think). They will want your surgical history as well, but like I said, they'll mail you a detailed list of what you need to send them.

 

[Ross]

One more thought, about that supposed 15 - 20% mortality rate.

I said it before and I'll say it again, these numbers mean nothing. It could go very well or it could go very bad, it just depends on how bad things are. Last time around was only my second and they told me 50/50. Well I nearly feel into that lower 50, but I made it.

 

[csutherland]

My sentiments exactly

My sentiments exactly

That was our feeling about the 15-20%--perhaps that's his statistics. I'm not intending to put him down in any way; he's an excellent surgeon. But this is a smaller "market" than St Louis or Rochester or Houston. He doesn't get the chance to do the numbers of this more rare procedure. As a matter of fact, he won't get the chance to do Jerry's! (Unless an emergency arises and there's no choice)

BTW he didn't see any reason that Jerry's St Jude's valve would need replacing. He did mention scar tissue plus the fact that he's already had two heart surgeries in his analysis. I imagine he was factoring all that in his percentages.

Thanks for your input, folks.

 

[ALCapshaw2]

FWIW, 15-20% seems to be the standard risk factor quoted for Third Surgeries. I've seen that number mentioned by a few 3rd surgery candidates. As Ross stated, it is probably pretty meaningless. NOW, if you could get each surgeon's personal record for similar surgeries, THEN you might have a more significant number to work with...

'AL Capshaw'

 

[Nancy]

15% was what was quoted to Joe for his third surgery as well.

 

[Ross]

I guess what I'm trying to say is, don't look at the numbers when making the decisions. You know what the outcome will be if nothing is done, so what choice do you have in the matter anyhow?

 

[Nancy]

Ross-

That's exactly how Joe viewed the stats as well. Without surgery, his stats would be 100% negative. As it turned out, his recovery from the third surgery was good.

 

[AmyCe]

Hi!
I'm in St. Louis. Had my surgery at Barnes-Jewish. I would definitely recommend Marc Moon. If you need any information on him, I would be happy to answer any questions.

Amy