don's Journal

Anna Jones  Hi Don, I have severe MVP/MVR too. Originally my insurance covered any doctor or hospital in the South. However, in January that changed and now it only covers some hospitals in the South or the East.

I was originally looking at 3 hospitals (1) Cleveland Clinic in OH, (2) Houston Methodist in TX (3) FL Hospital in FL.

However, Cleveland Clinic is no longer on my insurance so I had to drop that from my list of hospitals/surgeons.

In fact, most of the surgeons listed on this site don't take my insurance.

Rose Madura  Hi Don. Welcome to the site. This site will help you. You'll get good information. I know there is so much out there it can be overwhelming. Being informed is a good thing because you have to be your own advocate pretty much. Family will help too but best advice I can give is to get a list of questions ready - write them down - and take them to your appointment with the cardiologist. He/She will answer them all. There are no dumb questions. It is a scary thing but keep in mind that the success rate is very high. The doctors know what they are doing and will work as a team to make you better. Just because a surgeon is not listed on this site does not mean there aren't good, if not great surgeons on your insurance. Do your due diligence and find the best. You can do this.

Julie Copeland  Hi, I go to Houston Methodist. I’ve seen over 6 doctors there over the last 2 years in the DeBakey valve clinic- all with very similar recommendations, all were very nice. At first I found it annoying, but I realized I got 6 opinions! I feel like I got a lot of opinions from very qualified people and picked a surgeon, and will have a mitral valve/aortic valve replacement next week. Remind yourself that these docs have spent tons of time/money/energy/sacrifice training for this and it’s what they do everyday! The stats are on your side, and you’ll get thru this. One thing that was impressive about Houston Methodist was the online education they recommended- I’d ask about that! Make a list of questions every time you go for a visit, it will help you stay focused. Have faith! You’ll get thru this!

Barbara Wood  Hi Don, I agree with Julie...my cardiologist is with a large practice & I think that's really been helpful-
getting different viewpoints. I've heard the maxim choose a young cardiologist & an old surgeon. My original cardiologist retired right before my surgery...so I agree with that too! I like my new guy better, younger and more casual, but that's just my personal preference. He's very easy to talk to, will call me back if I have any questions. I think that's something to consider - I'd ask how he handles concerns or questions you might have between office visits & also if he/ she seems like a good fit for you personally...take your partner with you & get their feeling too. It stressful, but it will out work out! Best wishes!

Rita Savelis  Anxiety is felt by all. It's hard.
Here's hoping you'll meet your cardiologist and you'll like him/her and trust him/her.
There's a lot of info on the internet, but it can be overwhelming.
My cardiologists and surgeons appear nowhere on this site, and no one here recommended them.
But they were great.
I do like Barbara's maxim "choose a young cardiologist and an old surgeon"!

Kathy Blank  One year ago December I started my heart journey and had my MV Repair in Feb 2017- this site and this community is by far the best resource. It is SO important to do research and get several opinions from prospective surgeons! Best of luck on your journey and you will find the best path for your health and recovery!

don petroff  Thank you all for the advice and kind words.
Met with Dr.Malloy here in Portland Oregon. This was my first meeting with a surgeon. Turns out I will need the surgery, he's recommended repair using the robotic surgery. What do you guys think or know about the robotic surgery?

Rose Madura  Robotic is definitely less invasive. I had robotic surgery for a hysterectomy and the recovery time was very short compared to traditional surgery. I think there are a few heart patients who have gone (or are going) the robotic way so hopefully they will comment for you.

Anna Jones  Hi Don, it's a good idea to speak with more than one surgeon with more than one approach. All the surgeons seem to have their opinions. From what I am reading, and what I am being told (1) the full sternotomy provides the best view and is the least painful. However, it requires the longest recovery. I'm also told that you are on the heart lung bypass machine the least long. I'm also told that if something unexpected is found, the full sternotomy allows for the easiest shift in plans. (2) the minimally invasive techniques leave the fewest scars, are the most painful, have the quickest recovery. However, you are more subject to strokes with these types of surgeries. I've read of two patients on this board who did have strokes after their minimally invasive procedures, but I'm not sure of the statistical significance of that. Other negatives I've heard with the robot are that without the tactile feedback surgeons can cause accidental cuts, there can be nerve damage from the position the patient has to lay in, and there can be electric burns.

Margaret Pearson  Hi Don, I had the exact same diagnosis as you. My cardiologist recommended a surgeon (Dr. Balkhy at the University of Chicago) for robotic mitral valve repair. After doing my research and meeting with Dr. Balkhy I had the surgery on Nov. 14, 2016. I’m an RN and my insurance is an EPO that only covers me if I use the doctors and facilities where I work. I feel lucky that my hospital does not do valve surgery because that meant that they had to pay my bills out of network. One call to BlueCross/Blue Shield and I was covered. I was able to have the minimally invasive surgery by a great surgeon and had a great experience. I was home in less than 48 hours. Just started cardiac rehab today. If OHSU does not do valve surgery you can go elsewhere for the robotic surgery. Good luck and keep us posted.

Margaret Pearson  I beg to differ, but minimally invasive surgery is the LEAST painful, a full sternotomy is VERY painful, with a much longer recovery and opens up more opportunity for infection. The surgeon has a much better view with the robotic approach because of the magnification the camera provides. Long term studies have not shown any evidence of a higher prevalence of strokes. There are always risks associated with any type of surgery. The best thing you can do is choose a surgeon that has done hundreds of robotic mitral valve surgeries.

Phyllis Petersen  First, I made the same mistake you made: I looked at the videos and scared my self good. By the same token, knowing what's ahead allowed me to prepare mentally. I had robotic mitral valve repair at Cleveland Clinic 15 months ago. The initial pain was pretty strong, but it also faded relatively quickly to just severe soreness. I was cleared to drive 3 weeks after leaving the hospital, so long as I could respond quickly to any road issues. I started driving 4 weeks after surgery (short trips at first) and feel that I recovered relatively quickly. I was also cleared for cardiac rehab 3 weeks after leaving the hospital. It's not a piece of cake: fatigue and soreness took a little time, but for me this was the best option. I never had to sit in the back seat, worry about the sternum not closing properly, or some of the other things that go along with opening the sternum. My only problem was that stitches where the robot entered on the bottom of my breast split and that took awhile to completely heal, but men may not have the same pull on the the stitches :) Learn as much as you can about your surgeon, especially how experienced he is. Ask him lots of questions. Then get it done so you can start looking forward to all the things you love to do.

don petroff  Update. While researching local surgeons in and out of my insurance network I noticed one Dr. That has over 6000 heart surgeries with about 2000 being valve repairs or replacement. He also happened to be the local robotic guy and then I noticed in his Bio it showed that he is also the head of the robotic program here at OHSU but why didn't he show up on my insurance? So I called his office and explained my situation. The called my insurance and got the ok for a consultation with Dr. Malloy. I brought him a DVD copy of my Ecocardiogram then met with him during which time he thought that I would be a good candidate for the robotic surgery to repair my Mitral valve. Apparently there are a few preliminary tests to be done to make certain of my eligibility. He mentioned that he had done 4 or 500 robotic surgeries. That's it for now but I would like to thank all of you for responding and sharing,man it really does help to know others have gone before me with great success. THANK You!

Rita Savelis  Cutting the sternum is not painful at all for many patients. This was the biggest surprise of OHS for me, although my anasthesiologist had verified it beforehand.
This does not mean that there is not extreme discomfort and exhaustion. And many patients feel pain in other parts of the body because of surgical positioning.
There are reasons to choose minimally invasive or robotic, if one's particular valve problem allows it, but honestly less pain is not one of them, because pain varies so much, and can't be predicted.
But a shorter recovery time is definitely something one can expect from less invasive surgery.
I'm sorry that you have to go through this because none of it is fun. But I wish you a smooth procedure and a smooth recovery.

Phyllis Petersen  Don, You really do need to be proactive or have a doctor who is proactive for you. I was fortunate that my cardiologist and his assistant were on top of things, even though I chose to go to another hospital for my surgery. He pushed for getting my MRA and CTA done a month earlier, although the scheduling people couldn't find a spot (he wanted to be there when the tests were done and he wanted them done back-to-back). He pushed so that I wouldn't have to have a cath, because I had calcium score of zero. My surgeon, Dr. Gillinov then had to do a peer-to-peer with the insurance specialist to get me another CTA because he needed additional info for the robotic surgery. In other words, there is often a lot of extra bureaucratic stress, but as you've found out, it's worth the effort to get the best options for you.

Phyllis Petersen  Yes, I went to Cleveland Clinic to have Dr. Gillinov repair my mitral valve robotically. I responded to your message on my page and would be glad to share any insights I've gleaned with you.