Newbie with question about second opinions

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L

Lynnb

Hi everyone,

My partner (Dan, 52 yo male, in good health) was just told two days ago that he will need valve replacement surgery as a result of AV regurgitation that he's been monitoring for years. In the battery of tests that were done recently, the cardiologist also discovered that he had BAV and an aneurysm. The aorta measures 5.5 cm. I have a few questions (and am just starting to feel conversant in all the complexities...in large part to this site and all the references, what a resource...thank you all...please forgive any basic misunderstanding at this point):

* Should the aneurysm have been caught sooner, given its size? Should it be a concern that the cardiologist did not catch this or the BAV sooner?
* The cardiologist has said Dan can wait up to two to three months to have the surgery). Based on what I've read, the size of the aneurysm would seem to argue for surgery sooner, what do you think?
* We will be seeking a second opinion. How have you managed that: have you sought out a leading heart / thoracic surgeon in your area; is it possible to get a phone consult with some at one of the leading hospitals such as Cleveland Clinic?

Thanks for you commitment to this forum and for your help!

Lynn
 
First of all, welcome to the forum - we have all been there, and it does not matter how long you have known that "someday" might become "now", when that doctor says "open heart surgery" is in your near future, it is mind-bending.

Lynn, I had been monitored for 10 or so years prior to my AVR by a cardio, on an annual basis, for aortic stenosis. When the surgeon got in there, he found a BAV. There was a lot of calcification built up on my valve, and they could not get a clear enough look to tell by ultrasound. What tests was he getting for follow-up, and what was done now? Echos are good for screening, and saying when to do more sophisticated tests. Hearth caths and TEEs are much more accurate, but they are also more invasive, so are not ususally ordered until they are more needed.

I can't say in the aneurysm should have been caught or not, that is a question you should ask your cardio, or a surgeon, or any other doc you get for a second opinion.

This is my personal opinion, not a medical one, but if it were me, I would be looking at getting an appointment with a surgeon and asking him if he thinks surgery is indicated now or how long it can wait.

I am in Canada and our medical system is different from yours, so I am not going to comment on how to go about getting second opinions.
 
Lynnb said:
* Should the aneurysm have been caught sooner, given its size? Should it be a concern that the cardiologist did not catch this or the BAV sooner?
* The cardiologist has said Dan can wait up to two to three months to have the surgery). Based on what I've read, the size of the aneurysm would seem to argue for surgery sooner, what do you think?
* We will be seeking a second opinion. How have you managed that: have you sought out a leading heart / thoracic surgeon in your area; is it possible to get a phone consult with some at one of the leading hospitals such as Cleveland Clinic?

Thanks for you commitment to this forum and for your help!

Lynn
Click to expand...

Sometimes aneurysms go unnoticed until the person dies from it. If he's been followed along, there is no reason for it, but if someone heard something that thought needed investigated, then no, it's not unusual.

Surgeons would rather get in there and fix it before any more damage is done. I would be seeking a surgical consult. Anything over 5 and the risk of surgery vs risk of death is evident.

I wouldn't wait! I'd demand a consult with a surgeon now. I sat around waiting for the magic number 5 and mine blew at around 4.7. In other words, I should not be around to write this to you. ;) I know more and more, they are leaving these things go to up to 6.0 and in my opinion, they are risking life unnecessarily.

Second opinions--Get all his records and be ready to send them to your consulting surgeon and BE SURE to keep copies for yourselves. Get it from where every you like. Look for someone that specializes in Thoracic Aortic Ressection and valve replacement and has done hundreds of them.
 
Welcome Lynn.

I'm with the others; I'd see a surgeon and go with his recommendation concering wait time for surgery.
 
Thank You!

Thank You!

Many thanks to all of you! We have an appointment with a surgeon at CPMC (Cal Pacific Medical Center) Thursday and I'm working to set up another consult with a Stanford surgeon.
 
Hi newbie and welcome. Im kinda where you are right now about my surgeon wanting to wait and watch.Im planning on seeing another surgeon next week, just to see what he thinks. My cardiologist has given me all my copies, and said to me not to hesitate if i need a referal. Thank God for everyone here and there support, and answers. Most here have been there, and done that, and with there help and support, we will be on the other side assisting others also. Good luck and keep us informed. Danny
 
Patients can Self Refer to Most Surgeons.

Just call their office, tell them that you (or your partner) have/has been diagnosed with Aortic Stenosis, BAV, and an Aortic Aneurism. That's all the referal the Surgeon will need. He will want copies of ALL of his Test Results and the Actual Tapes / CD's / DVD's so that he can review the images.

Surgery of the Aorta is more complex than "mere" Valve Replacement Surgery. It is wise to find a surgeon with LOTS of Experience doing Surgery of the Aorta.

Dr. Craig Miller in San Francisco (Stanford) is probably the Top Aorta Surgeon in the area (from what I read). He has operated on some of our members with Great Results. Do a Search (specify "Any Date") on VR.com for keyword Miller to find posts refering to him.

'AL Capshaw'
 
It is a lot to take in so quicky and to have to move so quickly. If you want to find a silver lning, one is that you don't have to sit around and wait too long. That can be excrutiating too. Best of luck and stay tuned on here. You never know when a thread pops up with something you hadn't even thought to ask that you really ought to know. Welcome aboard.
 
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My aortic aneurysm measured 5.1cm and I was advised that I should have surgery within 6 months since there is no way to tell at which point would rupture. My cardiologist sent my records to Stanford to consult with another Cardiologist and get another opinion. I ended up selecting Dr. Craig Miller at Stanford to do my valve sparing aorta replacement and highly recommend him. He, along with his team, do amazing work!
 
Lynnb said:
* Should the aneurysm have been caught sooner, given its size? Should it be a concern that the cardiologist did not catch this or the BAV sooner?
* The cardiologist has said Dan can wait up to two to three months to have the surgery). Based on what I've read, the size of the aneurysm would seem to argue for surgery sooner, what do you think?
* We will be seeking a second opinion. How have you managed that: have you sought out a leading heart / thoracic surgeon in your area; is it possible to get a phone consult with some at one of the leading hospitals such as Cleveland Clinic?

Thanks for you commitment to this forum and for your help!

Lynn
Click to expand...

Hi Lynn and welcome,
5.0 is the recommended size for surgery. Lots of BAVrs dont get diagnosed until later in life. A second opinion never hurts. A phone consult would not be doing Dan any justice. They need to evaluate him, IMO, in person. I had my local hospital look at me, then I went to Hopkins and I am so glad I did.
 
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