Consulting surgeons

[Meghan]

Hello everyone,

For those of you who consulted surgeons directly, how did you make the first approach? Phone, email? Were you able to get hard numbers out of the surgeons regarding how many of a particular procedure they'd done and their success rates with that procedure?

To put this request into some more context - My husband Eric is the patient. He has congenital heart disease (Shone's syndrome); had coractation of the aorta and severe mitral stenosis surgically repaired as a child. We are now looking at replacing his dilated ascending aorta and possibly his biscuspid aortic valve. Eric is 26; his aortic valve is functioning well and he is non-symptomatic.

We have been monitoring the aorta for close to 3 years now and are looking at surgery this spring. His cardiologist talked to us last February about setting up surgery and so we started the process of gathering information and opinons on what to do about the aortic valve - try to spare or replace with a mechanical valve now. His cardiologist contacted two surgeons for us in addition to the surgeon he works with at the hospital; this has been a long and frustrating process of waiting for information to come back.

Now Eric's cardiologist has given us the contact information of the surgeons and told us that we can contact them directly. I hope that we may have better responses if we are able to contact the surgeons and ask them about their numbers, what valves they use, etc directly.

So for those of you who consulted surgeons, how did you take the first step? Anything you can share about your experiences (or can point me to a thread I've missed) about this stage of the process will be much appreciated.

Thank you,

Meghan

 

[BackDoc]

I picked up the telephone, called and made an appointment. I made sure all my records and test results were forwarded in advance of my appointment. It's that easy.

I would advise this: don't settle on the first local surgeon you meet. Speak with several. Also, your choice of hospital is important. Any local hospital can call themselves a heart center. Insist on finding a true heart center of excellence, even if it means traveling some distance.

 

[Magic8Ball]

I was recommended to mine by the cardiologist, i first met him after my angiogram, he popped in to see me in between operations. He took my notes off to review.

I then made an appointment directly with him.

I had a long list of questions to ask him but when i eventually got there they went out of the window as he just talked about all the stuff i wanted to ask anyway.

I never got actual numbers out of him but i came away with an overall feeling of confidence in him, he's been a heart surgeon for over 8 years and does a lot of work with emergency discections of the ascending aorta. He did the surgery on aussigirl on this site.

I've actually given up looking around as if i was still living in the uk i'd have no choice of where/when/who was doing this.....i'm now in australia and have chosen the where and the when and have also kinda chosen the who. Sometimes i think choice can become more of a problem than a gift, i've chosen mine on the recomendation of the cardio, aussiegirl and my personal feelings of what i think of him myself.

Hope this helps

 

[Lynlw]

Megnan, my son is the patient but I just called the different surgeon, unless i knew a cardiologist there and called him. What hospitals are you thinking about. I would really recomend, going to a center that specializes in adults w/ CHD. If you are in the Philly area, I would get in touch w/ Spray at CHOP and U of Penn. The head cardiologist of the ACHD center is one of the best,Gary Webb. If Your husbands cardiologist isn't an adult w/ CHD one, he really should talk to one, Good luck, I know it is scarey, lyn

 

[Meghan]

Thank you for your replies and experiences. I hope that we can do this by telephone/email as both of the surgeons we are consulting are a distance away (Philadelphia and Boston). But maybe in-person consultations could be done in the spring? How soon before your surgery did you consult?

Lyn - Dr. Spray is one of the surgeons we have consulted and he brought Eric's case to Dr. Webb, so we feel good about that. They brought up a good point to look at how Eric's mitral valve is functioning, which we did (and it's good! amazing - the repair has lasted almost 20 years) Everyone says that Spray is one of the best surgeons; he actually hasn't said what he would do in Eric's case, so that's one of the things we want to find out.

Thank you!

 

[Mb]

Dear Maghan:

If you are going to Boston, might I suggest you go to see Dr. Gus Vlahakes. He is THE cardiac surgeon at Mass General. He deid my husband's first surgery (St. Jude aortic and mitral valves, and will be doing his second surgery, tricuspid valve repair and pacemaker. We think the world of him My husband was in VERY bad shape by the time his surgery was done, and he pulled him through.

Marybeth

 

[ALCapshaw2]

Finding a surgeon with EXPERIENCE treating Bicuspid Aortic Valves and a dilating Aorta is key. Start with the telephone, ask your questions and narrow your search accordingly.

The #1 rated Heart Hospital is the Cleveland Clinic which is not far from you, even from Philly. They also have an 'online second opinion service' (cost ~$600 if I remember right)

Be sure to get copies of ALL of your husband's Test Results. Getting copies of the actual echo tapes would be a plus. If there is a charge copying the tapes, you could ask if they would simply forward them to the surgeon(s) you wish to consider which they will hopefully do without charge.

Good Luck with your search.

'AL Capshaw'

 

[Lynlw]

Thank you for your replies and experiences. I hope that we can do this by telephone/email as both of the surgeons we are consulting are a distance away (Philadelphia and Boston). But maybe in-person consultations could be done in the spring? How soon before your surgery did you consult?

Lyn - Dr. Spray is one of the surgeons we have consulted and he brought Eric's case to Dr. Webb, so we feel good about that. They brought up a good point to look at how Eric's mitral valve is functioning, which we did (and it's good! amazing - the repair has lasted almost 20 years) Everyone says that Spray is one of the best surgeons; he actually hasn't said what he would do in Eric's case, so that's one of the things we want to find out.

Thank you!

When Justin was born we were lucky to live in Philly, because there were only a few Congenital heart surgeons and one of the best, Norwood was in Philly (he is the one that came up with the norwood procedure that is one of the 3 stage surgeries that made it possible for the single ventricle babies to live). he did Justin's first 3 surgeries, he isn't practicing now, so when Justin needed his heart surgery last year, I talked to 5 centers. and we decided on Spray. One of the things that is good about going to surgeons that specialize in Adults w/ CHD is a lot of their patients have 3 or more heart surgeries, so they are experienced with dealing with all the things having multiple heart surgeries can cause and know how to deal with alot of the surprises that come up. For a few years before Justin's last surgery we knew that surgery would be very risky because his heart was fused to his sternum with scar tissue from being cut 3 times. I have know a few kids that died because the surgeons accidently cut their heart while opening their sternum and air got in and they had brain damage and either died on the table or a few days later when they realized the heart function was great, but they were brain dead. So when I talked to all the surgeons, alot of my questions were what would they do do make sure this didn't happen to Justin.
I actually know of a 34 year old w/ congenital heart defects who needed his pulm valve replaced last year,(Justin had a conduit/pulm valve replacement) he had 2 surgeries fail w/ in a year, so decided to go to one of the larger centers with alot of experience in Adults with CHD. before surgery his mom and him were asking about why this could have happend and other things like that. they were told, it was because they didn't go to a surgeon experienced in CHD and he did the replacement like you would you a person with out CHD instead of taking his whole heart into consideration. he had his 3rd surgery last month and is doing better already than he did after the last 2.
I don't know if you go to the Adults with CHD forum, If you haven't been there for a while they changed the site around and have alot of really good info, they have a listing of Adult with CHD Clinics by state and have all kinds of info including how many adults they operate on each year...
it's free to join and I really suggest checking it out http://www.achaheart.org/ the thing that is really important to remeber is alot of the big name heart centers have alot of experience in doing heart surgeries but not necessarily surgery on hearts w/ CHD. Another thing that is really important to know about Hospitals and is listed there is, not only is it important the surgeon and cardiologist have alot of experience in ACHD people but the rest of the hospital too. people post pretty often about having an Echo done and the Tech is not familiar w/ hearts that are basically rebuilt and switched around and can't even figure out where their different parts are so it's really important that the whole staff understands all the different CHDs.
Feel free to email me if you have any questions, Lyn

 

[gijanet]

E-mail...........

E-mail...........

We hav e sought out six "second" opinions for Katie and contacted all by e-mail. Had to do some digging in some cases to obtain those coveted e-mail addies, but did it, got 'em, e-mailed them (even Dr. Spray at CHOP), they responded, told me what they needed, had our ped card send them the "stuff - like echo tapes and cath images," and they gave us their opinion.

We chose Dr. Bove (at UofM), but Dr. Spray is an excellent choice, too. You will probably need to do some checking to see which ped surgeons operate on adult chders. The adult chd group is an excellent sounding board, too.

P.S. As far as hard numbers, yes, all of the ped cardiothoracic surgeons we contacted were very honest about their stats. Even Dr. B admitted when I asked that he had only performed two fontans and a valve replacement simulaneously, but when we did some further research and questioning, we couldn't find anyone else who had performed even two................sigh! So we stayed put and are thankful we did. He is our miracle worker.

Keep us posted and good luck. Hugs. J.