Howdy! Looking for Opinions on 2nd Opinions

[TXWildflower]

Hi everyone - feel like I sort of know some of ya'll since I have been lurking in cyberspace and now I am coming out of the closet so to speak. So a hardy hello from Texas. My story is the same as so many I have read here. I'm a 55year old, Female from Austin. For 10 years we have been watching my aortic valve. This year it entered the severe category and I was/am having some subtle symptoms that I had ignored or otherwise attributed to getting older. Echo showed my ava was .85 cm2 and the cardiologist seemed to be heading me towards surgery perhaps sooner than I was ready for. We agreed to do a heart cath (yes - its true, I am no longer a heart cath virgin as the ultimate decision maker)

Now things look a little less dire, ava is actually more like 1 cm2 nad he called me borderline sever. There is other good news in there too - I have a super strong heart and no blocked arteries. So while just 'hanging' around' after the cath, my cardiologist sent a surgeon in to see me and he told me his preference was to watch it month by month and in the meantime I am to lose 40 lbs. Did I mention I am overweight ? Anyone else out there have this issue? I have been working on losing those 40 lbs for a long time and seem to keep gaining and losing the same 10 lbs over and over. I have a whole different motivation now. Staying alive trumps getting in to the size 14 short shorts. I'm determined to follow Dr.'s orders. I know doing so will decrease the risk of surgery and make recovery so much easier. I do exercise regularly so I am pretty fit, just like to eat too much and temptation gets me every time.

So all of the above details were more by way of introducing myself to this group of esteemed people some of whom I feel like I already know and whose ranks I will soon be joining. My real reason for posting was to ask your opinions about second opinions Things I have read seem to imply that getting a second opinion is the right thing to do. But it seems to me there is no doubt that I need surgery. My body is even telling me that 10 years agao my cardiolgoist told me with absolute certainty that this day would come. Are the second opionions about whether you really need surgery or more related to finding the right cardiologist/surgeon for you? I can see the logic in that for sure.

I just wondered how you wise people out there have handled second opinions. Did you get one and why? Are you glad you did?. Does this tend to 'offend' the other Dr. involved or is part of the norm. I like my cardiologist well enough but the truth is I don't know him all that well. We have had little to say to each other over the last 10 years except 'See you next year'. That changed considerably about 7 weeks ago and now we have had some in depth dicussions and I do have a lot of respect for him.

So I'm glad to be online officially now and to get to know you better (Did I say 'glad'? Well I guess that is a double edged sword isn't it? I am glad to know I'm not alone and no one can understand the emotions that go along with all of this better than y'all. Did I also say I am an emotional eater now that isn't going to help me drop those 40 lbs. I have got to find some other way of coping. Per Dr.'s orders, I can't do any exercise that gets my heart rate over 100 bpm - but some walking and light yoga might help when I feel the urge to stuff my face.

Thanks for being here,

Rhena

 

[ALCapshaw2]

It was time for you to "come out of the closet" Rhina!

I'm a BIG BELIEVER in second opinions. My suggestion is to make it with one or more SURGEONS. Your Cardiologist has done his job (Diagnosing your Problem) and there is little he can do for you other than provide medication to 'slow the progress' and direct you to a good surgeon.

My recommendation would be to go to one of the Major Heart Hospitals in Texas and find a surgeon with Lots of Experience doing Aortic Valve Replacements (over 100 - or more - per year.... i.e. way more than your typical ByPass and occasional Valve Job Surgeon sees)

(I'll ask my Nurse friend in Texas for some names)

EDIT: Maybe this is more along the lines of Surgeon Shopping (and it IS time to be doing that) rather than a second opinion per se. To my mind, the ONLY Question is WHEN, and again, IMO, the Surgeons have a better 'feel' for timing. Your numbers beg the question of WHEN, not IF, to have surgery.

Have you read the "Stickys" at the top of the Valve Selection Forum listing? That would be a good place to go next if you have not.

'AL Capshaw'

 

[Lisa in Katy]

Welcome from a fellow Texan. I am in the Houston area, in case you don't know where Katy is. I assume you'll be having your surgery at Seton? Seems like that is the one for cardiac surgery in your area.

I did not get a second opinion, but then again, I kind of did. My own cardio was my second opinion! It was my opinion that it was time for surgery. I had waited 22 years, was tired of feeling mediocre and tired of wondering when I would need surgery. That was in the days of doctors thinking you should be almost dead before surgery. After the cath, my doctor agreed with me that it was time for surgery. I was happy to be going through it at last!

 

[Superbob]

Welcome, Rhena!

I didn't seek a second opinion. I was happy with my cardio and I did research on the surgeon and concluded he was as good as they come. But if you (or anyone) has any uncertainties, it is perfectly fine to get a second opinion. I've never heard of a physician resenting someone doing that.

All best wishes to you, and I look forward to future posts from you.

 

[sue943]

Getting a formal second opinion would worry me especially if it differed from the original. Personally I would only actively seek a second opinion if I was in some way unhappy with the first, but that is just my personal thinking. I would also be concerned about souring the relationship that I had with my first doctor, would he feel that I didn't trust him?

It didn't matter in regards to my heart issues anyway, I had an excellent cardiologist where I live (a pity he has moved away) and he sent me off-island to a very large hospital in the UK where I was under a very eminent cardiologist, I trusted both and they consulted with each other to manage my care.

 

[skeptic49]

Welcome, Rhena! The way I did it was I saw several cardiologists until I found one that I have confidence in. Then I did research and found and saw a top notch surgeon at a major university hospital. I'm doing something similar to what you are on the advice of my surgeon: watching and waiting. Good luck with the dieting. I'm fighting that battle also. I need to drop about 20 lbs. but it's tough to make any progress.

Best wishes,

Jim

 

[hall]

Welcome Rhena. I think if I am not sure what the doctor is telling me is accurate, I would find a second opinion. It would be the surgeon. I think a doctor with reasoning would not be upset with the wanting of a second opinion. This is a very important surgery and you want what you believe to be the best. Best of luck to you.

 

[barb]

I was tempted not to seek a second opinion as I was very happy with the first surgeon I saw. He was at a major University hospital that I had major orthopedic surgery at a year and a half ago. I live in Cleveland so I knew I should at least check into the Cleveland Clinic. I was almost put off at how hard it was to get seen at the CC. What pushed me was a friend of mine is a nurse practitioner and had ways of researching the two doctors backgrounds a little more throughly than I was able to. Maybe I just lacked the energy to do it but I think she could get to some info that us regular folks don't have access to. Her hubby is also a doctor. She ended up telling me that there was no comparison between the two docs and for that I was grateful. She was right. The surgeon who did my surgery at the CC is THE aorta expert. I would urge you to compare docs that way. I almost made my decision based on warm and fuzzy feelings about particular doc and hospital as opposed to level of expertise in doing this surgery. It's time consuming and stressful to go surgeon shopping but you are worth it! Welcome to the site!

 

[john79t]

Welcome. I am 5 weeks post op and am glad to have it over with. I did not have a doctor tell me to lose weight. However, when I realized I was facing surgery I knew that at 5'10'' and 244lbs it would benifit me to lose weight. I lost 30 lbs in the 3 months before surgery and 12 more since. I did it with what is known as the flat belly diet. (you can find a book on it in almost any book store. It is a heart healthy diet where you eat 4 to 5 smaller meals a day. It has worked for me and I have struggled for many years with wt. best of luck.

 

[AgilityDog]

Hey! We're blessed with some really top heart surgeons in Texas, including up here at Plano Heart Hospital (part of the Baylor system). Welcome to our Zoo, as Cooker says.

I didn't need a second opinion - I'd been begging for someone to listen to me for months, I was so ill, and finally someone did! He referred me to one of the top cardio practices in town, who referred me to "the guy I'd want to do my heart surgery if I were having one." Less than a week later I went under the knife. I preferred that to having my boss probate MY estate.

I didn't like the answer, but I sure as heck wasn't too surprised to find out it was my heart.

I started my diet while ill (I maybe had to be sick, but I knew being fat wasn't going to help), and lost 42 pounds, give or take, on Weight Watchers online. Diet, exercise, fear of death, and wanting to maximize my health helps keep it off.

You can join Cooker's Throwdown any time you want!

 

[marie]

It was time for you to "come out of the closet" Rhina!

I'm a BIG BELIEVER in second opinions. My suggestion is to make it with one or more SURGEONS. Your Cardiologist has done his job (Diagnosing your Problem) and there is little he can do for you other than provide medication to 'slow the progress' and direct you to a good surgeon.

My recommendation would be to go to one of the Major Heart Hospitals in Texas and find a surgeon with Lots of Experience doing Aortic Valve Replacements (over 100 - or more - per year.... i.e. way more than your typical ByPass and occasional Valve Job Surgeon sees)

(I'll ask my Nurse friend in Texas for some names)

EDIT: Maybe this is more along the lines of Surgeon Shopping (and it IS time to be doing that) rather than a second opinion per se. To my mind, the ONLY Question is WHEN, and again, IMO, the Surgeons have a better 'feel' for timing. Your numbers beg the question of WHEN, not IF, to have surgery.

Have you read the "Stickys" at the top of the Valve Selection Forum listing? That would be a good place to go next if you have not.

'AL Capshaw'

If you are willing to share names (given to you by your nurse friend) I would appreciate it as well. I live in La. but I may be facing another surgery as by valve may be failing and my mitral is leaking.
Thanks Marie

 

[TXWildflower]

Thanks for the hearty welcome from everyone and also the advice.

To ALCapshaw2: I like your idea of calling it surgeon shopping as that is what it is and doesn't make it sound like I am trying to second guess my Dr. There is no doubt that I need surgery so I don't need anyone to confirm that. Dr. Arthur Smith is my cardiologist at Austin Heart which is the practice within the Heart Hospital of Austin - which from all I have researched (including my own 10 year experience) is a top notch facility. The surgeon's names given to me by my cardiologist to date are Steven Dewan and the other is Jack Oswalt. Dr. Oswalt is the one who stopped to see me after the heart cath and confirmed surgery was in my future,. He said that Dr. Smith probably thought he was in talking with me about scheduling the surgery, but what he wanted to do was watch it month by month while I lose 40 pounds. I know from my research that he has done many Ross Procedures and I am considering going with that procedure. If your nurse friend has any other names to recommend I would be very interested. Finding the surgeon with the most aortic valve replacements under his/her belt and particularly for the type of Valve you choose sounds like the ticket. I'm undecided on my valve choice as yet - something I'd like to discuss with a surgeon(s), but believe me I've read plenty about it on this site so don't need to rehash all that good info.

To AgilityDog , john79t - Kudos for losing the weight. I know I can do it too and have a whole new motivation. I"ll have to look into this throw down someone mentioned. 3 ladies at work today told me they had talked and in solidarity with me they are going to lose some weight too. Can't beat having good friends like that. Skeptic49 sounds like you are right there with us.

To Lisa in Katy - I sure know where that is... been through there many a time - but mostly headed somewhere else (No offense - I just didn't have anyone I knew there to stop & visit). I think rather than Seton Hospital, I'd rather have my surgery at the Heart Hospital of Austin, unless of course the right surgeon for the job uses Seton.

Again, thanks for the responses and the hellos and I'll be seeing y'all around the boards as already I have more questions coming to mind. I will try to read the stickys and not rehash old topics. I'm so glad y'all are out there for folks like me.

Rhena

 

[marie]

Rhena
Wanted to say "Welcome". You've come to the right place. As far as the weight goes I am the queen of yo yo up and down. It's tough but you can do it and especially with the help of your friends.
Good luck
Marie

 

[ALCapshaw2]

The following names came from my friend in Austin:

Dr. Dewan or Dr. Kessler

I believe Dr. William Ryan in the DFW area is a well known surgeon with extensive experience doing the Ross Procedure. (I know he is well known, I hope I remember correctly about his expertise with the RP). Check out surgeons at Baylor College.

The Texas Heart Institute in the Denton A. Cooley Building next to St. Lukes Episcopal Hospital in Houston, TX is another good Heart Hospital. Google "Texas Heart Institute" for contact and other info.

Dr. Joseph Coselli is Chief of Adult Cardiothoracic Surgery at THI.
Former member "Oaktree" credits Dr. Coselli with saving her life after a Botched AVR in another state for BAV and possible Connective Tissue Disorder. As she stated, he pulled her back "from death's door" when her valve had nearly come 'unstitched'.

'AL Capshaw'

 

[TXWildflower]

Thanks AL -- and about Long Distance Surgeons

Thanks AL -- and about Long Distance Surgeons

I appreciate your checking for me so quickly AL. Dr. Dewan was the first surgeon recommended to me by my cardiologist. It was during the conversation where I was awkwardly trying to find out about 2nd opinions and interviewing surgeons and he mentioned Dr. Dewan and said once I talked with him I wouldn't want to talk with anyone else. At least he thought very highly of him. I've also heard of Dr. Kessler as a friend of mine used him for A-fib treatment.

You mention Drs./facilities in Houston, DFW and Waco. It seems like having a surgeon/surgery outside of your home town would be so difficult and would add stress to an already stressful situation. Did any of you out there do research for surgeons outside of your metropolitan area? I am not even sure if my insurance would pay for that. I imagine people living in smaller towns or rural areas have no option but to seek out larger cities, or maybe certain procedures are only done in certain facilities.

Can anyone speak to what it is like to have OHS somewhere besides in your home town/area? How many pre-op trips do you have take, post-op, etc. Do families just stay in hotels? I actually am only curious because I think Austin has excellent surgeons here and I'll probably select one of those just because it seems easier all the way around. Or maybe I'm limiting myself by thinking that way?

I am eating all this information up like a sponge - Thanks all.

 

[ALCapshaw2]

If you are willing to share names (given to you by your nurse friend) I would appreciate it as well. I live in La. but I may be facing another surgery as by valve may be failing and my mitral is leaking.
Thanks Marie

Marie -

While there are many excellent surgeons spread around Texas, I'm thinking that Dr. Joseph Coselli at The Texas Heart Institute in Houson would be a good choice for you for several reasons.

He is a Very Highly Respected Surgeon at a Leading Heart Hospital. He has lots of Experience with 'Re-Do's'. See what "Oaktree" has said about him and how he saved her life after a botched AVR from another state. Do a Search for "Coselli" and then indicate "Oaktree" as the author. Be sure to change the time period to "Any Date" down at the bottom left corner of the Advanced Search box.

Houston is closer to you in LA than the rest of Texas.

That's where I would start if I were 'in your shoes' and location.
Let me know if you follow up with them and how it goes.

'AL Capshaw'

 

[Lisa in Katy]

Rhena, While it is up to you where to go for your surgery, Austin is a large city and there are many great surgeons there. I actually had forgotten about the Heart Hospital! I live near Houston and I didn't even go to the Heart Institute or Methodist for my surgery. Many reasons - I trusted my Hospital, Cardio and Surgeon, I had worked at the hospital and felt comfortable there, I had young children, knew they would be coming to see me, and didn't want them stuck in the car for so long, I didn't want my husband, friends, or family inconvenienced by having to make the 35 mile drive when there was an excellent hospital 12 miles away, the traffic and parking in the Med Ctr is horrendous, parking is extremely expensive, and most importantly, the statistics said that the surgical outcomes at the hospital and with the surgeon I had chosen were just as good as the Heart Institute.

See where your surgeon trained. For most in Texas, it was either UT or Baylor, meaning they did their residencies at Methodist or St. Luke's (the Heart Institute). Mine trained with Dr. DeBakey at Methodist. It can't get much better than that.

 

[ticktock]

Another Texan checking in

Another Texan checking in

Hi Rhena and love your photo! Makes me want to go hill country. I live on the gulf coast, a 4.5 hour drive to Houston. I had my last surgery in Houston at St. Lukes Episcopal Hospital in association with the Texas Heart Institute. My close family lives on the coast, so it was somewhat "inconvenient". There are rooms available through THI for family, sometimes at no charge. There are suites at the Holiday Inn for a GREATLY reduced rate for patient families. I think my folks paid about $75 a night for a suite.

I wanted the absolute best care I could get so I went to THI. If I had cancer, I would go to MD Anderson. For "me", expertise was of primary importance. A bit of inconvenience is a small price to pay for the "best you can get".

 

[TXWildflower]

. I would urge you to compare docs that way. I almost made my decision based on warm and fuzzy feelings about particular doc and hospital as opposed to level of expertise in doing this surgery. It's time consuming and stressful to go surgeon shopping but you are worth it! Welcome to the site!

I just re read this thread and this post has some really good advice. Gut is important but shouldn't reign in the decision making. Thanks Barb and I'm feling very welcomed to the site.
TIckTock (great 'handle'), thanks for that post. Gave me something good to think about and perspective of what it would be like doing this remote - but realilzing it could be worth it. If I can't find a surgeon in Austin well experienced in doing whatever valve type surgery I decide on, I would look as far as Houston. Heck!in Texas, Houston is just down the road a piece. (One time I was on a business trip in Quincy, Mass and was driving to Salem to sightsee and before I realized it I was in Maine! I'm too used to getting in the car and driving to get somewhere.( It's a beautfiul part of the country though, so not picking on Mass or Maine.)

Rhena

 

[KenG]

I did not get a second opinion. I've lived with the prospect of valve surgery for the past 45 years. My condition stayed stable until February when I had a bout of heart failure, connected to another health problem, an intestinal blockage (they gave me a lot of saline in the hospital for that and that caused the heart failure). The doctors were cautious and thoughtful, like your doctors are, so when they said it was time, I had no doubts. I, too, had the cath which showed no coronary artery disease, which I believe is contributing to my quick recovery. I certainly preferred to have the surgery now, than at a time when I might have needed a bypass as well. So, I did not get second opinions. It's personal. You will not offend your doctor if you do. But from what you describe, I think if I were in your place, I would go readily if they said it was time.

The one area I dwelled on related to the choice of surgeons. I'm in the Philadelphia area, and had it done at Cooper Hospital with a surgeon my cardiologist recommended. I met him and liked him a great deal, but was always aware that the Hospital of the University of Pennsyvania has the best reputation, along with a particular doctor who everyone said is the best. I labored a great deal on whether to meet with that doctor as well, but would then go back to the fact that I really liked the surgeon they referred me to. Up until the surgery, these mixed feelings stayed in my mind. Once the surgery was done, I have no doubt that Dr. Rosenbloom is a gifted surgeon, and did a great job. I have no misgivings about not checking out other surgeons. Hope that helps in some way.