Hi, I'm new :) MV Repair - Help with Doctors please!

[SR22]

Hi there! My name is Sara and I'm new to this thread. I'm 26 years old, live in Los Angeles, and have had heart valve issues for most of my life. I have a moderate-severe mitral valve regurgitation, mitral valve prolapse, atrial flutter, and ventricular arrythmia. I was always told that I would have to get it fixed "at some point", and last week was told that point should be soon, particularly if I would like to be able to have babies.

I am hoping to be a candidate for a minimally invasive mitral valve repair using robotics. I am looking for the "best of the best" surgeon for the job. I have spent the past week in full research mode, and have compiled the following list of surgeons to consult with:

*Dr. Hillel Laks, UCLA.
*Dr. Richard Shemin, UCLA.
*Dr. Alfredo Trento, Cedars-Sinai.
*Dr. Vaughn Starnes, USC.
*Possibly also Dr. Marc Gillinov, Cleveland Clinic (Is he worth traveling for?)

Any opinions on experiences with these guys, or any additional referrals would be very greatly appreciated!!!

<3,
Sara

P.S. This will probably be the first of many many posts from me, as I am pretty petrified over here!

 

[Lynlw]

HI, welcome, who has been following you so far? Have they recomended any surgeons? There are quite a few good centers/surgeons in Cal, I don't think I personally would travel to CCF

 

[SR22]

Hi Lyn!

My primary cardiologist is Dr. Jaime Moriguchi at UCLA. His referrals were to Dr. Laks & Dr. Shemin, who are both his UCLA colleagues. Although I'm sure they are both qualified surgeons, I just wanted to do my homework to make sure I find the best Dr. & facility available, and not just the best Dr. within the UCLA network, if that makes sense.

I also asked an electrocardiologist I know at St. Johns, who advised me to consult with Dr. Trento & Dr. Starnes as well.

 

[Lynlw]

Hi Lyn!

My primary cardiologist is Dr. Jaime Moriguchi at UCLA. His referrals were to Dr. Laks & Dr. Shemin, who are both his UCLA colleagues. Although I'm sure they are both qualified surgeons, I just wanted to do my homework to make sure I find the best Dr. & facility available, and not just the best Dr. within the UCLA network, if that makes sense.

I also asked an electrocardiologist I know at St. Johns, who advised me to consult with Dr. Trento & Dr. Starnes as well.

Laks and Starnes are both very good, poeple travel to go to them, but I don't know who is the best for mitral. IF you search here for each doctor, you can see who used them for what ect...
I know you mentioned you've dealt with this all your life, have you had any surgeries or procedures (like a interventional cath to open something, not just a routine cath to see what is going on?) that could play a role in choosing the surgeon ,

 

[SR22]

I have not had any procedures in the past, other than many many many of the routine echos, ekgs, etc, about every 3-6 months. I was started on coumadin 3 years ago after a small clot, and took that for a year and a half, but it made me feel pretty crummy so they agreed to take me off and put me on aspirin instead.

I have also heard excellent things about both Laks and Starnes, including on this site. (I've been reading a lot on here over the past week before I finally posted today!) I was told, however, by a different cardiologist who is an aquaintance and not my primary, that Laks does not have much experience with minimally invasive robotics and prefers the open-heart method (which I am trying to avoid). His opinion was that Shemin was the man to see at UCLA for minimally invasive robotics. However, I have not really seen Shemin mentioned on here anywhere so that makes me wonder... As I mentioned, I am a 26 year old female and as silly as it may sound, I am also taking the cosmetic toll of this into consideration. Did I also mention I will be trying to plan a wedding around this whole thing!?? Needless to say, I am aiming for the quickest & smoothest recovery possible

 

[ALCapshaw2]

I'm glad to see you are doing your research Sara.
Being 'freaked out' at the news is a common reaction.
You seem to be handling it appropriately.

Dr. Laks is certainly one of the Best of the Best Heart Surgeons in the country but as you noted, I'm not sure how much experience he has doing robotic surgery.

Robotic Surgery is a relatively new science and has it's own list of experienced practicioneers so you are wise to continue your research.

It would not hurt to interview some of your primary candidates and ask for their opinion on your options and about their experience with each option.

You need to know that Not All Surgeons are knowledgable or proficient in ALL options so if/when patients want a particular Valve or Procedure, it is wise to find a Surgeon who has the Knowledge and Experience necessary to perform that procedure.

I was a little surprised by your comment that Coumadin made you "feel pretty crummy". In the years I've been reading these forums I've not seem anyone report such a reaction. OTOH, I have seen several patients who were NOT particularly happy about having to take Coumadin... The Biggest Issue with anticoagulation is Proper Management and not all anti-coagulation care providers do that well, unfortunately.

You would be well advised to have a Plan B "just in case" the repair does not work or is not viable. If that happens, the Surgeon needs to know what YOUR second choice is because he's not going to be able to 'wake you up and ask' after he 'gets in there'.

I'm assuming one of your reasons for wanting the Repair is so that you can have children. Some of our 'Valve Mothers' opted to receive the Bovine Pericardial Tissue Valve to get them through their child bearing years. Two reported getting 10 years (and a baby or two) from those valves before they needed replacement. Note that Porcine Tissue Valves tend to wear out faster.

Keep up the Good Work !

'AL Capshaw'

 

[SR22]

Hi Al!

Thank you so much for all of your thoughts. I have my consults set up in the next 2 weeks, so I will see what the Dr.'s have to say and how I feel about each one and keep you guys updated.

And yes, you are correct - I am aiming for a repair so I can have babies . If that can't be done, then my "plan B" would also be a tissue valve. Although I have heard that they are temporary solutions, I am sure any children would be well worth it! I will definitely read up more on the threads regarding that procedure.

About my crummy coumadin experience, I had a small clot we believe was brought on by my flutter during a particularly anxious incident. My previous cardiologist put me on the coumadin after that, and I experienced a lot of fatigue, and hair falling out (yikes!). I went to another cardiologist for a second opinion on this, and he told me that some "old school" cardiologists basically just put everyone on coumadin right away so they limit their liability, instead of actually looking into the problem. Considering I was 22 at the time, I did not like knowing that I would have to live on this medication - especially after a year later I found out how it would affect being able to start a family later in my life (which that dr. neglected to educate me about at the time, but that's another story!). Anyways, the second Dr. put me on a CardioNet moniter 24/7 for a whole month. After he checked the results, he determined that my flutter was not active enough to require Coumadin and concluded that I should be fine with just aspirin. That is my Coumadin story...whew!

 

[davidswife]

Welcome!

Welcome!

Hi Sara!

Welcome to the forum. Sorry that you had to find us but glad that you did. I can't help you with any recommendations of surgeons in CA but I can tell you that there are quite a few people on here who have used Dr. Shemin, including members Eva, lbecker and Lorimacm (click on Community on the blue bar above and then go to Members List and you can read their posts and/or pm them). And here is a thread started by member declar who had robotic mitral valve repair done by Dr. Shemin: http://www.valvereplacement.com/forums/showthread.php?t=26833. I just did a search for "Shemin" and found it.

Wow, planning a wedding and heart surgery at the same time - talk about stress! Well, you know you can come here and vent/ask questions any time. This is the nicest, most caring and most knowledgeable group of people that you could hope to find.

Good luck and looking forward to reading your updates!
Nadine

 

[Marcia58]

Sara,

I had a mitral valve repair through a mini-toracotomy incision 7 months ago. My surgeon (Dr. Jeevanandam @ Univ of Chicago) is pretty experienced at the robotic repair. That's why I chose him (that and his repair success rate) but due to other health issues, he didn't feel I was a good candidate.

Good luck with your research, and if you have more questions, ask away.

Marcia

 

[SR22]

Nadine,

Thank you for the warm welcome! I can already see that this here is a wonderful community and I'm very comforted by all the support & information here I also appreciate your help with locating some of Dr. Shemin's patients -- they will definitely be getting a note from me asking about him. I guess it will just take me a bit to find my way around this great site.

Marcia,

How was your experience and recovery with the mini-toracotomy method? Thanks for sharing

<3,

Sara

 

[debster913]

Hi, Sara--

I'm from the LA/Long Beach area myself and had a right thorocotomy (minimally-invasive mitral valve repair) surgery at USC University Hospital three years ago. Dr. Vaughn Starnes was my surgeon. As you likely already know, he is one of the best in southen California and comes very highly recommended. My cardiologist actually sent me to him. I didn't have much of a choice in the matter, but since my cardio is very excellent, and he trained under Starnes, I was glad to have the referral. Anyway, I had a fantastic experience with him, but dealing with his office staff, especially in trying to schedule my surgery, was a real pain!

PM me if you would like more info, but welcome to VR!

Best,

 

[Lynlw]

I know nothing about Shemin, but when I searched here i found both patients that were very happy and others unhappy with him. Altho honestly you can probably find that with any doctor, some one will not be happy. The same with Hospitals, there are some hospitals that many people love but others would not go to because of expereinces they know about and versa visa.
I would start by checking out the different surgeons bio page from their hospital. Many times they list what their specialty is as well as what papers they have written ect. and when you narrow it down to 2,3 contact them and either ask what they need for a second opinion or if it isn't too far from home make an appt.

 

[SR22]

Hi Debi,

That sounds about right, as I left his office a message to schedule a consultation 3 days ago, and am still waiting to hear back! But I would definitely be interesting in PM'ing you to hear about your experience with your procedure

Lyn,

That is a great idea. Honestly, I think I have booked these consults so far primarily on their reputations, and have yet to actually compare their credentials. ::getting to work on that::

<3,
Sara

 

[Lynlw]

You schedualed appts with all 4 doctors? Do you know if there is a certain amount of 2nd opinions your insurance will cover? or if they cover all or part of 2nd (2rd 4th ect) If not I would look into that before.

 

[SR22]

Hmm, good point Lyn! I have Blue Cross PPO, so I will check with them. Although I never thought of that, I believe any additional expenses would be ok if it helps me make the right choice.

 

[ryen0]

Hi Sara,

I had mitral valve repair surgery using the davinci (robotic) method in 2008. I know this may not be an option for you because of your location, but i would highly recommend Dr. Douglas Murphy at Peachtree Cardiovascular. He's performed this surgery using the robot hundreds of times over the course of six or seven years i believe. I'm not sure of his specific stats, but can find them for you if you'd like.

Aside from the fact that i had to go through heart surgery, i had a wonderful experience with him and St. Joseph's hospital in Atlanta. The chances of them being able to perform a repair vs a replacement is in the high ninetieth percentile. Their surgery success rate there is 99.9%. Aside from the benefits of getting a repair over a replacement, there is little cosmetic scarring. I believe the picture of my scars is somewhere on the TOOTS thread. Basically you have five very small scars on the far right side of your chest and a small one near your groin area. Anyway, i wish you luck in finding a surgeon, and the benefits from going the davinci route are really outstanding. Feel free also to PM me if you have any questions are want to know more about my specific experience. Oh and if it helps i can relate to you having to go through this at such a young age, as i was only 27 last year.

 

[SR22]

Hi Ryen,

Thanks for sharing all that great info! I will definitely be sending you a note to ask about your experience as well, since it seems like we are in the minority going through it at this age and I'm curious if/how that affects the experience.

<3,
Sara

P.S. Are those your babies? They are so so so so so sweet!!! If so, did you have them after the repair?

 

[ryen0]

Hi Ryen,

Thanks for sharing all that great info! I will definitely be sending you a note to ask about your experience as well, since it seems like we are in the minority going through it at this age and I'm curious if/how that affects the experience.

<3,
Sara

Feel free to ask anything. I know from my own experience nothing helps more than talking with people that have gone through it.

P.S. Are those your babies? They are so so so so so sweet!!! If so, did you have them after the repair?

Thanks yeah they were born after my surgery and are eight months old today.

 

[Lynlw]

This is a cancer site, not Heart, but they have a good list of info about getting 2nd opinion, questions to ask insurance and the docs ect http://www.braintumor.org/SecondOpinions/
here is the section on cost How much does a second opinion cost?
The cost of a second opinion varies greatly. Most health insurance plans pay for second opinions. Exactly what your insurance company will cover depends on your particular plan. Check with your carrier before you have the second opinion to determine whether you will have any out-of-pocket expenses. It is helpful to ask the following questions beforehand:

Does the doctor charge for a second opinion? If so, how much?

Does your insurance company cover all or part of the cost?

What will your out-of-pocket expenses be?

Will your HMO or PPO (if applicable) pay for a second opinion from a doctor who is outside of their network?

May you seek a second opinion on your own? If not, whose authorization do you need?

If you need your primary care physician's consent to get a second opinion and he or she refuses, how can you appeal?
*****
Also from OUR experience, you can get 2nd opinons from surgeons by your records, copy of all echoes/caths (on tape or dvd, cd ect) and not have to go in person, there are different charges for each of course.
We also have BCBS PPO but most of the bigger childrens surgeons will do 2nd opinuions from records as a courtisy

 

[SR22]

Happy Birthday babies!!!

Ryen, I am trying to PM you, but still don't know how...lol, I'm only a few hours old on this site. Would you mind Pm'ing me please so I can respond? Thanks!!!