Surgery chances, minimally invasive, and 'out of network' insurance issues

[JenniferO]

I have several questions relating to a need for mitral valve repair:

1. I am 49 years old and have severe mitral valve regurgitation.  I have prolapse of the anterior and posterior leaflet.  My EF factor is 55-70%.  I do not yet have left ventricular dysfunction.  Most everything else on the echo and TEE are normal or close to it.  I am asymptomatic except for fatigue.   The “best” surgeon in my state gives me only a 50-75% chance of repair which seems to hinge on the anterior leaflet prolapse.  I am blown away by this pessimistic outlook.  I realize no one can give a 100% chance of repair and I realize no one knows for sure until they are into the surgery and attempting the repair, but shouldn’t I expect better odds than that from the surgeon I choose for the repair or am I being unrealistic?

2. I would like to better understand the pros and cons of a mini-sternotomy vs. a right mini thoracotomy as despite substantial reading on the subject of minimally invasive surgery, I have no idea how one would choose between these two approaches assuming one has a highly experienced surgeon performing each of the approaches.

3. I am wondering if anyone else on this forum has dealt with the “out of network” insurance problem of traveling to somewhere like Cleveland Clinic or other advanced medical centers to get more experienced treatment and better their chances.    Has anyone been successful in persuading their insurance company to treat the surgery as “in network” and if so,  how did you do it?        I am a person of average means and concerned about how to handle the medical bills that may result from reduced insurance coverage and the degree to which this may decide the course of my treatment.  Advice from anyone out there who has dealt with similar concerns?

[CCF-M.D.-CRC]

Dear Jennifer,

1. The surgeon wants to give you a realistic outlook and also obtain your consent should the need for a mechanical valve arise.  That being said 50/50 does seem a bit high for a valve.  I would say our ratio is much higher here perhaps as high as 80/20 or more in favor of repair.

2. Some of this will depend on the surgeon.  A mini sternotomy  may be somewhat less painful.

3. I have less experience in this area but would love to see what others in the forum have to say on this issue.  Thie clinic is very good about working with people and I would encourage you to call the number below and ask to speak with one of the cardiac surgery financial counselors about various ways to deal with the situation.

[little debbie]

Jennifer:
We traveled to Alabama last year for my husband to have a heart surgery that no one in our network could do. Our insurance
company was pretty uncooperative beforehand,telling us that they would not pay at as good of a rate (70% versus 80%,& we'd have to meet a greater out-of-pocket maximum).But we had no choice.
As it turned out,our insurance made a deal with the hospital after the huge bills came in.They paid better than I could have even hoped.
So it seems like they do all they can to discourage you beforehand.Good luck!

[JenniferO]

Debbie:  Any chance I could talk with you privately on the issue? My e-mail is ***@****.  Let me know.

[TL]

Do not settle for the best surgeon in your state.  That means he may be only one of the top 50 in the US.  You need to go to one of the top surgeons in the US.  I had the same surgery and was fortunate enough to go to one of the top three in the country for a repair.  The difference between a repair and a replacement is huge in terms of quality of life and life expectany.  If a repair is done before any permanent damage is done to the heart, then life expectancy is almost equal to that of someone without a heart condition.  If replacement must be done then you need to be on blood thinner for the rest of your life and the valve is not as efficient as your native valve which results in a decrease in life expectancy. The out come of the surgery is highly dependant on the experience and skill of the surgeon. The number one priority should be the skill of the surgeon and the insurance should be secondary.

[JohnL]

Just a quick comment about min-sterno's.  That procedure was used two years ago when I had a Ross Procedure done (two valve surgery to fix aortic insufficiency).  Unknown to me, the surgeon, Dr. Doty in Salt Lake City was one of the few able to do this (apparently).  Scar is very small and hard to see: of course I've got some chest hair to hide it :)

Regarding surgeon choice, I get the sense that money is an issue (as it is probably for all of us).  Do your research on the web for surgeons/hospitals.. you'll get lots of conflicting advice unfortunately, but go with what your heart tells you (no pun intended).  DO NOT worry about meeting the surgeon in person before your surgery: their reputation will proceed them.  Dr. Doty was a wonderful guy to talk to, but I only met him the night before surgery (live in Atlanta).

Best of luck, YOU WILL BE FINE!!  

John

[JenniferO]

I really appreciate your comment about Dr. Doty.  I did call his office here in Salt Lake and he does do a mini-sternotomy in "selected cases."  Unfortunately, he is on staff at a hospital outside my network; ironically within walking distance of my office, but just as "out of network" as Cleveland Clinic!
Still, it might be worth getting a second opinion from him.

I love these message boards for the connection to other people going through the same things.  It so helps not to feel so alone.

[JenniferO]

Thanks TL for your comments.  You confirm many of my own thoughts.

[JohnL]

Jennifer,

How ironic that you are in Salt Lake and I mentioned Dr. Doty.  LDS is an incredible hospital with great post-surgery care.

Perhaps you've been given a sign that you should follow...  you're not alone, lots of people out there to support you!

Good Luck

John

[LSM]

TL,

I would be very interested in hearing more about how you selected your surgeon for mitral repair.  I also have some other questions I'd like to ask since I need the same surgery.  Would like to correspond via email if you can send your email address to ***@****

Thanks much!

[Lemony]

I agree with Debbie.  I had my mitral valve repair surgery done with one of the very best cardiothoracic surgeons in the country.  His name is Dr. Stephen Colvin.  He practices at New York University Hospital (or New York University Medical Center - you can look it up on-line - you will get a great deal of information about him and this technique).  Dr. Colvin is one of the best for this surgery.  He is known throughout the world and travels around the world teaching other surgeons the technique.  I too had gone out of network, but my medical plan ended up working out a deal with the hospital for the hospital bill.  Dr. Colvin is also very helpful when it comes to medical cost.  I do not know if you would be interested in coming to N.Y. for the surgery, but if it were me, I would only choose one of two places.  NYU or Cleveland Clinic.  They are two of the best for this surgery.  Quality of life is much better when repair can be performedm, as stated in some of the other comments above.  Not all cardiothoracic surgeons are as skilled in the minimal invasive technique, so I can understand why the odds were so low by the surgeon you chose.  I too considered Columbia Presbyterian Hospital as it was in my plan.  They have a great group of sugeons, but they do not advocate the M.I. surgery like NYU does.  I am now going on 6 months after surgery.  I am interested in who you choose and how you do.  If I can be of any further help, let me know.

[Lemony]

Jennifer, I just happened to go down to my original question back on 8/6 and noticed that you posted a comment there.  Sorry I did not get back sooner.  I haven't visited this site in a while.  I left my e-mail address there.  I can put you in touch with Dr. Colvin's nurse if you would like.  She is wonderful.

[slye]

I also had mitral valve repair done last year. But mine was done at Kaiser HMO in San Francisco.  I was very sick & needed surgery quickly so I didn't have the luxury of shopping around for a surgeon.  I met the surgeon just a few days prior to surgery & he cited 70% success rate but stated that his personal success rate was 90%.  That made me feel a bit better but I was in no position to argue. After surgery I had to take coumadin for a few months - this is the same blood thinner that you take for ever if you have an artificial valve. That was terrible. Weekly blood tests followed by dosage adjustments. And my diet was severely restricted - almost no vegetables since they affect the "blood thinning" affects of coumadin...that's hard on a salad lover. After a few months I was able to stop taking coumadin. So repair of the valve is much better option. If you want to contact me I'm at ***@****   Good luck....slye

[smichael]

Hello Jennifer,

I also had severe mitral valve prolapse and had my surgery done at LDS Hospital in Salt Lake.  I would also recommend Dr. Kent Jones, who does more repairs than anything else.  He also does the minimally invasive surgery -- which ironically didn't work for me because they found I had an ASD as well -- so they had to go to the full sternotomy.  However, Dr. Jones is an awesome surgeon with an impeccable reputation.

Please feel free to contact me at ***@**** if you want to know more about my experience. (I'm 2 1/2 years post op.)

shannon

[JenniferO]

I am overwhelmed by the response to my message and very grateful for all your thoughts and suggestions.  Quite a few of the surgeons in Salt Lake City, including Dr. Jones, used to do minimally invasive.  We had a major outpost of the Heartport organization here.  Unfortunately, for reasons that I can't quite extract from the doctors, they all abandoned minimally invasive and there seems to be quite a negative attitude about it here.  I will contact those of you who left me your e-mail addresses and thank you so much for your willingness to talk to me.  

My major concern about the hospital bill, which remains after talking with financial counselors at some of the hospitals (including CCF) is that I might be left with liability on the difference between the total charges and the "usual and customary allowed" charges of the insurance company in addition to my 30% of the "allowed" charges.  As near as I can tell, this has the potential to total $20,000 or more.  As an example, say the surgery costs $60,000.  Then suppose the "allowed charges" by the insurance company are $40,000 (just to use a round number) of which they will pay 70%.  I then have a liability of 30% for the allowed charges of $40,000 up to an out-of-pocket maximum on my policy but the really scary part is that I have been told the hospital could also hold me liable for the difference between the original $60,000 and the $40,000.

[Lemony]

I too had the same concern at first.  Everyone told me, "this is your health".  I still could not get past the numbers.  I am running late right now and will not be in my office for the next couple of days.  You can also e-mail me at ***@**** if you need to talk with me directly.  I will check my e-mail.  Maybe I can help alleviate some of your fears.

[Stan H]

I had my mitral valve repair done 5/99 by Dr. Cohn at Brigham & Women's in Boston...another excellent surgeon and facility for cardiothoracic surgery.  Dr. Cohn used a mini sternotomy.  I just want to add that, in retrospect, the type of entry the surgeon uses is not nearly as important as the overall outcome of the procedure.  My mini hurt just as much as a full sternotomy...the only advantage being the smaller scar.  Maximize your chances for a repair...that must be your main priority.  If, because of your valve physiology, a replacement is the only viable option, then so be it.  A huge number of people live full, long and active lives with replacement valves.  Whatever the outcome, the odds of a successful surgery are overwhemingly in your favor.  Good luck.

[NgottMV]

Jennifer, Your Echo Report sounds alot like mine.  I'm 42 year old female.  I also have moderate to  severe regurgitation of the mitral valve involving both leaflets.  My doctor hasn't recommended surgery as yet.    But is watching me closly.  I'm on medication atenonol 50 mg and accupril 20 mg.  Also ecotrin.  I was hospitalized for a possible TIA this time last year.   I'd like to know how things work out for you. I'm told I will need repair someday for sure.
Lemony, would it be ok write you? My emails ***@****

[JenniferO]

John:

Met with Dr. Doty this past week.  May be an option.

Would like to e-mail you privately.  My e-mail is ***@****  or ***@****.

Jennifer