where to start? or WHEN?

[river-wear]

Hi, I'm another newbie here. I was diagnosed with AR when I was four. It's a congenital defect, so my mom says it was the first time I didn't scream & cry at the doctor that they could hear the murmur. Pretty much through my childhood I was told that I'd need the valve replaced, probably "when I hit puberty."

Well, I made it to 42. Unfortunately I left my trusted and much-appreciated cardiologist back in Michigan eight years ago. I had a new one here in CA for a few years before getting fed up and switching last year. On my second visit to the new doctor, she tells me my left ventrical has increased in size (volume?) from 5.7 to 6.4 and I should have this thing fixed within the year. Hooray, I have time to research and plan. (And take my 73-year-old mom on a trip in June first.)

Do I get a second opinion now? I'm thinking I should change cardiologists anyway because the current one was chosen more for convenience to home rather than based on hospital privileges. I think Stanford or Sequoia are probably the best choices in my area - they're both about 30 miles from me, so not bad. Should everything get into planning mode now? My current cardiologist scheduled me to return in July 2010 and didn't mention any specific surgeon yet.

I don't think I'll even be ready to choose the hospital until I figure out what surgical approach to take (straight replacement vs. Ross procedure). Is it very expensive to consult with more than one surgeon for treatment options? Is it "normal" to meet with more than one?

 

[Lily]

Welcome to the site. I made it to age 42 with a congenital valve issue too. Did you hear anyone say anything about having two parts to you aortic valve, or the term bicuspid valve? If so, there is a lot to read that you will no doubt find interesting related to that entire situation, even a specific forum related to that congenital disorder.

I think the very first thing I would do if I were you, would be to gather up copies of all of the test results you can, particularly the most recent, including your echo results and any other imaging type of test you may have had. Keep one copy in your personal file at home. You may want to hand carry copies of these to whatever doctors you may choose to see.

I'm in an area with some knuckle-brain cardios so I can imagine what you may have gone through.

There are several members here on this site from northern California who have had surgeries that were at least somewhat near your stomping grounds and hopefully they will post with some specific recommendations of doctors you may want to see.

It is not uncommon among the members here that some of us consulted with more than one surgeon. You obviously want someone who knows what they're doing, and who does it well .

I'll take a breath and let some clever poster fill in the blanks. Best wishes .

 

[Danny]

Welcome! Im glad you got to go so long. No its not uncommon at all to get 2nd opinions.In fact, you should definately get seconds....Like Lily above said, you want a surgeon who knows and is familiar with your condition and proficient at doing the procedure. I think Bill was the last one here that went to Stanford, and he said he got excellent care. He just had surgery last week. Anyway, good luck, and keep us posted.

 

[vhmoriarty]

I was born with a heart murmur they told my mother that I would outgrow. At age 15 however they were still hearing it. So that started my pediatric cardiologist appointments. I have found over the years the differences in pediatric and adult. My Ped Card. didnt want to do anything and said I would be in my late 50's way past child bearing years before anything needed to be done. Well guess what here I am fixing to get a Ross Procedure done on 11/13.

I hope you do well!

 

[Lynlw]

I was born with a heart murmur they told my mother that I would outgrow. At age 15 however they were still hearing it. So that started my pediatric cardiologist appointments. I have found over the years the differences in pediatric and adult. My Ped Card. didnt want to do anything and said I would be in my late 50's way past child bearing years before anything needed to be done. Well guess what here I am fixing to get a Ross Procedure done on 11/13.

I hope you do well!

Do you mean you went from a pediatric cardiologist to one that specializes in ADults with CHD, or a regular Cardiologist?

 

[river-wear]

Thank you for the encouragement!

Lily - I would have been certain it isn't a bicuspid valve until my last echo, when the tech mentioned it. I really don't think that's the case though because 1) no one else has said it and 2) I've seen the valve on previous echoes and it looked more to me like one of the three leaflets just flaps around in the blood flow, rather than sealing. The leakage has been called "moderate to severe" for at least the last several years.

Danny - I have been following Bill's posts. Thank you.

Vicki - on the bright side, you didn't have the prospect of surgery looming over your childhood. Would you care to share what made you decide on the Ross procedure?

 

[DebbyA]

Welcome to the forums! I had AS, not AR, and am not a medical expert, but I thought having your heart size grow is not a good thing. You might want to find out what rate of growth is considered a warning sign. Also, it sounds like you're not too content with the current cardiologist. After surgery, you may be only under the surgeon's care for about a month, then you'll have a long-term relationship with your cardiologist. You could also post a question (with as much geographical id as you're comfortable with in the header) about cardios and surgeons in that area.

 

[Superman]

BAV can present in any number of ways. It doesn't always look like a bisected circle. It can look like a Mercedes hood ornament with two the the leaflets fused either entirely or partially. This could appear almost like a tri-cuspid valve on an echo (if they aren't specifically looking for it).

 

[ALCapshaw2]

Stanford is an EXCELLENT Heart Hospital and Dr. Craig Miller is one of the Top Surgeons in the West, if not the country. Several of our members have used him with excellent results, including people with complex cases involving surgery of the Aorta. You can find their posts by doing a "Search" (see the blue line at the top of the page).

For people with complex issues, or who need multiple surgeries, it is NOT uncommon to interview more than one surgeon. You want to find someone with Lot of Experience performing the Procedure YOU need with the Valve you prefer.

Once your condition has been diagnosed, there isn't much that a Cardiologist can do so IMO, it would be wise to start interviewing Surgeons. I also happen to believe that Surgeons typically have a better 'feel' for timing.

Give Dr. Craig Miller a call. You just might find that 'one stop shopping' is enough after meeting him.

'AL Capshaw'

 

[Nupur]

Hello and welcome to the site, and the 40-something facing surgery club : )

I agree with Al, just go see Dr. Miller. I had seen two cardiologists and the second one (who I decided to go with) sent my echo to Dr. Miller even though she wasn't recommending surgery yet, and I went and saw Miller. He is absolutely wonderful and whatever the decision is about surgery, he will put your mind at ease. He took a long time to show me my echo (he knew I am a techy person : ) and explained the nature of my leak and all that and said he would be able to repair it when the time comes but he would wait a few years. That was the best appointment I had. Only reason I would interview another surgeon is if I wanted the On-X, which btw Dr. Miller said he wouldn't recommend (not for mitral anyway). I think you can have multiple surgeon consults for a surgery of this nature. Maybe meeting Dr. Gaudiani is not a bad idea either. I don't know about surgeons at UCSF, haven't researched them.

All the best!

 

[TXWildflower]

Hi and welcome to the forum. I am in the waiting room for AVR and after my cardio got things all stirred up thinking it was now 'time' I consulted with two different surgeons to find out that it isn't really time just yet. I felt better all around after having seen the surgeons and I recommend you seek the advice of at least two. At least I got a consensus on a estimated time-line from them and lots of useful information about valves, etc. giving me time now to do my homework. BTW, I've decided to change cardiologists now as well. My current one is highly regarded in his field, but doesn't have the best patience when it comes to dealing with my questions. I don't think he appreciates all the research I've been doing to ask him intelligent questions and prefers that I left him do the thinking.... I want to be an active participant in what is happening with me. So I think we will part ways now.

The surgeons were impressed with all I understood about my situation and the questions I was asking. I have this forum to thank for that education.

Good luck to you! Talk to surgeons, I think it will give you a clearer picture. BTW, neither the two surgeons or my cardiololgist are sure if my AV is bi-cuspid or not. They say they may not know till they actually get in there.

Rhena

 

[river-wear]

Wow, this is such a great resource! Searching this site and around the internet, I've seen good things about Dr. Gaudiani too. Does Dr. Miller do the Ross Procedure? I think Dr. Reitz does it at Stanford.

For you veterans of OHS, how important was your choice of hospital? My main reservation about Stanford is that my research has shown a higher than normal rate of post-surgery complications even when the data is adjusted for the types of cases they care for. Well, that and the fact it's a teaching hospital doesn't appeal to me (more people "poking at you," discussing your case, etc.). I like privacy. I've never stayed in a hospital before and it just seems that a smaller one would be more restful. Maybe I just need to suck it up and deal with it.

 

[kfay]

Well, that and the fact it's a teaching hospital doesn't appeal to me (more people "poking at you," discussing your case, etc.). I like privacy. I've never stayed in a hospital before and it just seems that a smaller one would be more restful. Maybe I just need to suck it up and deal with it.

Restful and hospital are two words that should never be used together. Unfortunately, you are not going to get a lot of sleep in the hospital after you have OHS. It won't matter the size of the hospital. I think any surgeon you are going to find that has the experience you are looking for is going to be at a large hospital and a lot of the best are at teaching hospitals. You are going to be poked more than you knew was possible, teaching hospital or not.

Kim

 

[Nupur]

Where did you get post surgery complications statistics from and were they for cardiac patients? I am curious. Personally, I would stay away from Stanford for routine things (I chose to deliver my son at El Camino), but for cardiac surgery I would definitely choose Stanford, their staff is probably better equipped to handle any complications that might happen. I would probably also consider going to LA for robotic procedures if Vaughn Starnes is a pro at it by the time I have surgery.

Not sure about Miller doing Ross, if you call his office they will tell you.

We have a few members from the Bay area who had OHS at Stanford in the last year and you should definitely talk to them. Hey maybe we can have a VR bay area get together! I bet we all live within 10 miles of each other ( I am in Sunnyvale/Mt View).

 

[ALCapshaw2]

Personally, I favor Large Heart Centers for Valve Surgery because both the Surgeons AND the Staff / Nurses, have more experience dealing with Valve issues, both surgically and in post-op recovery.

Translation: They have Seen it All and KNOW what to do to keep you alive.

Just my non-professional opinion.

'AL C'

 

[Cooker]

Welcome to the zoo ... wish you well!

 

[river-wear]

Nupur, I got the data on complications, mortality, etc. from this site:
http://healthnet.sqctool.com/index.aspx?f=healthnet_federal

It allows you to compare hospitals that you choose, and see how they rank. The comparison I did was specific to aortic valve replacements.

I definitely favor hospitals that do a large volume of the type of surgery I need. According to the site above, Sequoia does 197 of these a year versus 140 for Stanford. That's why the smaller hospital is under consideration. It's also where Dr. Gaudiani practices and I've heard he's very good. I'm pretty sure they don't do the RP at Sequoia though, if I want to take that route. My husband suggested I go to the Cleveland Clinic but I'm not interested in going across country when there are very good facilities near home.

 

[Eva]

..........

For you veterans of OHS, how important was your choice of hospital? It was important to me which hospital, but more important was which surgeon and how much experience he has!!

......... Well, that and the fact it's a teaching hospital doesn't appeal to me (more people "poking at you," discussing your case, etc.). As Kim said, there is no privacy at any hospital!!! you will still be poked several times during the nights, or x-rayed early morning hours, etc. One nurse told me "the hospital is to make you feel better not to rest....hotel are where you get rest!!" I like privacy. I've never stayed in a hospital before and it just seems that a smaller one would be more restful.
I took with me ear plugs in order to avoid noises!!

............... she tells me my left ventrical has increased in sizeMine was enlarged too...yet it returned to normal size after surgey.

Do I get a second opinion now? .............

............. Is it "normal" to meet with more than one?[/QUOTE]

Welcome aboard! If you have good insurance, I encourage you to seek more opinions and interview more than one surgeon, for your own peace of mind that you chose the right place and the right surgeon.

Good luck and keep us informed.

 

[Lynlw]

Nupur, I got the data on complications, mortality, etc. from this site:
http://healthnet.sqctool.com/index.aspx?f=healthnet_federal

It allows you to compare hospitals that you choose, and see how they rank. The comparison I did was specific to aortic valve replacements.

I definitely favor hospitals that do a large volume of the type of surgery I need. According to the site above, Sequoia does 197 of these a year versus 140 for Stanford. That's why the smaller hospital is under consideration. It's also where Dr. Gaudiani practices and I've heard he's very good. I'm pretty sure they don't do the RP at Sequoia though, if I want to take that route. My husband suggested I go to the Cleveland Clinic but I'm not interested in going across country when there are very good facilities near home.

Stanford IS a good hospital, but that is one of the things that went against them in the US news heart ranking too "
Patient safety index (1 to 5)
Indicates success in minimizing patient injuries and deaths from avoidable accidents and poor medical care. Higher is better." they got a 1 http://health.usnews.com/health/bes...l-and-clinics-6932330/heart-and-heart-surgery

Also like others, even tho there ARE downsides to large teaching centers, to me personally the benefits out weigh them. IF you run into problems ect, I like that the doctors and staff have pretty "much been there done that" and know what to do and don't have to stop and think about it... I like having a lots of brains to dicuss what is going on and that there is great coverage 24/7, unlike some smaller hospital where they have to call someone in if there is a problem.

PS IF I were looking forr a surgeon that had the most experience with Ross procedures, I would start by checking the centers (like Stanford that are ranked high in the congenital heart defects and Adults with Congenital heart defects since alot of the Ross pateints are children

 

[ALCapshaw2]

FYI re Ross Procedure at Cleveland Clinic

One of our members posted that CC is no longer recommending the Ross Procedure because of a high incidence of "premature failures".

The Most Prolific Ross Procedure Surgeon is Dr. Paul Stelzar in NY. (See the profile and photo-album of member "StretchL" who worships Dr. Stelzar.)

I believe Dr. William Ryan in Dallas, TX is another good RP surgeon.

'AL Capshaw'