Garys 1st consult - Dr.Wants to Wait :{

[Chrisandgary]

Just got back from Dr. Landsen at Westchester Medical Center. He looked at catscan and measures it at 5.5 not 5.6. His take is we wait 3 months and do another cat scan. I am so overwhelmed right now I want to jump off a bridge.
He said the risk of rupture is less than the risk of surgery. There is a 10% chance of not making it through the surgery or coming through with a disability.
He did say the surgery is inevitable but he'd like to wait.
He did put him on toporol - makes me feel a teensy bit better.
He also told Gary he could continue working - just dont overexert himself.
Now I am really overwhelmed as this really goes against everything you and everyone on vr.com say. I feel 3 months is way too long - I myself will need more medication!
Dr. Landsen asked if this was bicuspid as he saw a notation on a long ago echo that said probable bicuspid aortic valve. This was never confirmed. Our cardiologist was also present at this consult and he said he would check on this.
on 3/97 prior to 1st OHS Ross proced. Aortic root was 4.4 Sur.was 9/97
8/00 prior to 2nd OHS Mechanical Aortic root was 4.2 Sur.was 10/00
6/02 Aortic root was 4.3
11/03 Aortic root was 4.8
I dont have next echo just the cat scan results of 5.5 or 5.6 depending on who I talk to.
What should I do? He has an appointment on Thursday at Sinai with Griep and not until 8/1 with Oz - I think I am cancelling Oz as he is not an aortic aneurysm specialist.
I have Dr. Len Girardi at Weill Cornell in NYC Did you give me his name? I havent called yet but will if he is an aortic spec.

Please give me your thoughts.
We informed his parents last nite and they are devastated. His mom agrees with me too that something should be done asap.
Thanks so much
Christine

 

[Karlynn]

Christine, so sorry to hear that your consult didn't give you any sense of peace.

Let me recap this a bit, just to see if I'm clear.

Gary had a Ross Procedure in '97 - there was nothing definitively said about whether his aortic valve was bicuspid??

The Ross failed and he had a mechanical put in in '00. ???

Now the aorta has a measurement of 5.5.

What reasons is the doctor giving you for the mortality and disabling outcome rate he's quoting? Scar tissue? Being off Coumadin for the surgery? What measurement is the doctor waiting for? It sounds like the Dr. is treating Gary's situation as very fragile, but I'm unclear as to what his reasons are. Is this a surgeon that is giving you this consult?

 

[Phyllis]

Christine, don't panic. The appointment on Thursday is not that far away and maybe another opinion will make things clearer to you both. Go armed with a list of all questions and all reports you can get your hands on in this short period of time, if you don't already have them.
Wishing you the best,
Phyllis

 

[Chrisandgary]

Christine, so sorry to hear that your consult didn't give you any sense of peace.

Let me recap this a bit, just to see if I'm clear.

Gary had a Ross Procedure in '97 - there was nothing definitively said about whether his aortic valve was bicuspid??

The Ross failed and he had a mechanical put in in '00. ???

Now the aorta has a measurement of 5.5.

What reasons is the doctor giving you for the mortality and disabling outcome rate he's quoting? Scar tissue? Being off Coumadin for the surgery? What measurement is the doctor waiting for? It sounds like the Dr. is treating Gary's situation as very fragile, but I'm unclear as to what his reasons are. Is this a surgeon that is giving you this consult?

Thank you for responding so quickly - I am here glued to this computer waiting for someone to respond while my 4 kids reek havoc in the house! I am convinced Gary is going to die after this consult. The more I think about this consult the more I am sure this doc does not want to take a chance with him and thinks maybe he'll just go in then next weeks and he wont have to deal with us.
Anyway in answer to your questions his reasons were all about reattaching the coronary arteries, cutting the blood supply to the brain,etc. That is vaguely what I remember. He said nothing of the coumadin or scar tissue. This was an aortic aneurysm specialist from Mt.Sinai in NYC who is now at Westchester Med. in Valhalla NY. He is a surgeon and supposedlly pioneered a whole aortic aneurysm program.
The rest you have correct Ross failed and in 00 had a mechanical. There is only 1 notation in 97 prior to the ross on the echo that says "probable bicuspid aortic valve"
The echo from 00 prior to mechanical OHS says Tricuspid valve regurg. NONE
2002 echo after mechanical surgery says Tricuspid valve Peak regurg Vel. 2.0 m/sec. Tricuspid regurg trace.
Do they not know what they are talking about between the bi and tri? I understood that you cant tell bi or tri through an echo.
I am having a hard time obtaining his ross op report to see if it noted in there.
The cardiologist said he would look back to see if it was noted somewhere as he cant remember. My guess is he wont and forgot by the time we walked out the door today since the surgeon said to wait 3 months.
Thank you again for replying. I am a nervous wreck.
Christine

 

[j0ej0hn]

Hi:

I am a relatively new member. I've got quite a history with ascending aortic dissection(s) so far, and am scheduled for the first of two hypotheria cardiac arrest surgeries to repair/replace the major part of my aorta.

I being monitoring for both an ascending and descending aortic aneurysm, and have been for almost 3 years now. I am at 5.7 and have been holding there for a number of months, and I am scheduled for my first surgery on 9/12.

I have a wonderful heart surgeon (Dr. James Fonger, who saved my life twice in 2000 after two acute ascending aortic dissections) and a highly reputable aortic aneurysum surgeon (Dr. George Tolis, who became involved in my case last year), both of Lenox Hill in NYC. Lenox Hill has a well-regarded cardiac unit ... perhaps, you might want to check with one of them.

Try not to worry ...

 

[Nancy]

Chris-

As the spouse of a multi-surgery fellow, we have been down this road. When the third or fourth surgeries are on the horizon, a more severe risk to benefit ratio comes into play. It IS maddening to say the least. We all want to rush into surgery and correct things asap, but when a surgeon says he wants to wait a while, you can be sure that this is what is going on.

My guess is that once Gary's tests show 5.6, he'll be whisked into surgery right away.

I don't know what to tell you, maybe the second or third opinion will be different.

Joe needs a fourth valve surgery, but right now he is inoperable. However, he does not have an aneurysm, and his valve problems can be handled medically at least for now.

Joe has restrictive/constrictive heart disease from scar tissue from multiple surgeries.

 

[TomS]

Next steps

Next steps

Christine,
From what I know, Dr. Girardi's specialty is root and valve replacement. He told me that he has a 0.7% mortality rate with a normal combined replacement, so don't freak out yet. As I understand it, Oz doesn't specialize in this, but is a surgeon that focuses on complicated issues. They may approach this differently which may be a rational reason to seek different opinions. I believe that Girardi works with a number of cardiologists at Cornell and Columbia Presbyterian in NYC whom you may also want Gary to see. If you can't see the surgeons right away, you may want to speak with other cardiologists.
Tom

 

[PJmomrunner]

Hi Christine:

I'm glad Gary's 2nd surgical consult is not too far off. Maybe you can get some of your questions answered at that time.

It seems surgeons are always (appropriately) assessing the relative risks/benefits of operating versus waiting, where we tend to focus on a "magic number". With two surgeries under his belt, assessing Gary's options is, I guess, more complicated than what the "magic number" method can apply to. I would want to know exactly how his previous surgeries factor in and maybe see if the surgeon has the usual magic number for less complicated cases. (It could be that he is operating on the assumption that Gary's aortic valve was tricuspid and if he gets confirmation that it was actually bicuspid he may schedule surgery immediately. BAV vs. TAV does generally change the magic number.)

Also, I think the confusion surrounding the bicuspid versus tricuspid valves has to do with two different valves. You are talking about a bicuspid aortic valve, while it may be that the report is talking about one of four heart valves called the "tricuspid valve." (The valve between the right atrium and the right ventricle--not a tricuspid aortic valve.) Make sense?

I hope he got pretty specific about what constitutes overexertion.

Take care.

P. J.