Golden_Heart
New member
[h=2][/h] I've been reading posts on this forum for a while, but have always been GHOST-like on this site.....directly messaging members without posting my own experience. Without this site and talking to members, I would have been lost on how to go about choosing a surgeon....so I thought it was my turn to post my experience in hoping to help others, as others have helped me. I am ETERNALLY grateful (praying hands emoji)
So I'll do my best on making this short and sweet. I am 36 years old and had OHS when I was a baby at 2 years of age. Ever since I was young I always knew I would eventually need my valved repaired, but it always seemed so far off in the future. Well, the future is now!! I have breast implants and needed to get them redone due to capsular contracture (extreme scar tissue around the implant). Just like any surgery I've had throughout my life, which is many and won't name them all, I needed to get clearance from my cardiologist.....pretty routine procedure. My cardiologist said, you cannot have breast augmentation you need your mitral valve repaired, it is severely regurgitating. After being in denial for a while, I took to this forum to look for my surgeon. Seriously so thankful, where else do you start to look for a surgeon to work on your heart, the most important organ in the body? After researching many, many, many, many hours, I decided that I wanted to go with the minimally invasive procedure and sought out doctors who specialized in this procedure.
So I will list the surgeons I interviewed and my experience with them:
1) Dr. Alfredo Trento @ Cedar Sinai: First let me say their cardiac facility is very impressive, definitely the best of the best. Prior to meeting the doctor, I was first seen by his nurse practitioner who asked me a variety of questions. Then all of a sudden she got a text and said, "Doctor Trento is coming!" It was like GOD is making his way over.....make clear, hahah! He definitely has a strong presence and strong opinion. After speaking with him, he told me that I could not have the minimally invasive procedure that I desired. That because I had previously had heart surgery there would be too much scar tissue, the only way was to do the traditional sternotomy. He was very stern in his decision and without getting any words in edge wise, he was off to do the next, very busy man! I was extremely devastated, I had my heart set on having the minimally invasive procedure and didn't feel like he was listening to how I felt or my needs. For all the females out there, I didn't want a large vertical scar down my chest. There goes life in low tops and bikinis. Perhaps a little vain, but this is the only BODY I get in life. Yes, I have a vertical scar already from my first surgery, but I was 2 years old and it healed beautifully some people don't even notice it. After my consultation, I received a personal call from Dr. Trento concerned on why I did not schedule for surgery......my mitral valve is in need of repair! I told him that I wanted to have minimally invasive procedure and still looking for a surgeon. He was extremely upset and said it just cannot be done! I greatly appreciated his call and thankful, but my search and journey continued......
2) Next, Dr. Mark Gillinov @ The Cleveland Clinic: To start with Dr Gillinov is the go-to guy if you are seeking minimally invasive mitral valve repair....he's your MAN. Before I could even get a call back or set surgery date, I had to send a variety of documents including previous medical history, ultra sound, medical records etc. As I've found out, this is pretty typical of highly sought after cardiac surgeons. Btw, if you are not familiar with the Cleveland Clinic is in Ohio (me California) and I was more than willing to travel to have surgery. I had researched and watched multiple YOUTUBE videos about him and was SET on him doing my surgery, he's a genius. So after sending all the items they had requested, I waited....and I WAITED. A week went by, two weeks.....after waiting I called the office to ask if Dr Gillonov had reviewed my file. Still he had not, understandably he's a busy guy. So after the third week of waiting, I FINALLY I got a call from his nurse relaying his recommendations. She told me that the doctor's recommendation is to have the traditional sternotomy, same reasons as Dr. Trento, because of my previous heart surgery there was probably too much scar tissue. It is just easier to go straight with the cut down the middle. Yikes, no wayI I was counting on him. I asked her is there any way that he could possibly do the minimally invasive procedure, she said he won't know until the day of pre-op and it's not guaranteed. The only draw back of traveling for surgery, you cannot personally meet with the doctor until days before surgery. At this point, I was overly devastated. Perhaps I should just come to the realization that the minimally invasive procedure just was not going to happen for me. I was literally beside myself, but I need to get this done so I scheduled to have surgery with Dr. Gillinov for December 9, 2016.
3) Lastly, Dr. Starnes @ Keck Medical Center of USC: After waiting for Dr Gillinov to respond week after week, I decided to continue to research on this site, reading people's experience with various doctors. As I am reading, time after time I kept seeing Dr Vaughn Starnes being mentioned. So I decided to see where he was located, which happened to be in California. At this point I hadn't heard back from Dr. Gillinov, so I googled Dr Vaughn Starnes and was able to contact his office and asked for an appointment. Once again, he would not see me without having sent all my medical records, ultra sounds etc, etc. Since I had already compiled this info from the previous doctor, the next day I sent all my info to his USC office. Within days, I received a call back from the office saying they had received my package and medical records and would like to schedule an appointment. Going into my appointment with Dr. Starnes, I had already anticipated him telling me that the minimally invasive procedure was NOT an option. During my consultation, Dr Starnes came in after reviewing my files and let me know that because I was very young he would recommend doing the minimally invasive procedure and explained where the incisions were going to be. Surprised at what I was hearing and the confidence in his recommendation, I told him that I had previous heart surgery and would this even be possible. He said that he knew that, but it seemed that my external scars healed wonderfully and anticipated that my internal scars would be the same. Being a little skeptical, I asked him if he had performed minimally invasive procedure on individuals who have had previous heart surgery. He communicated to me that he has done this exact surgery many times and that it could be done successfully. That day I made scheduled for surgery on December 16, 2016 and canceled my previous surgery date.
So let me sum things up on my experience and how things turned out now that I am almost 5 weeks post surgery. First of all, I feel that it is extremely important to feel like you connect with your surgeon and that he/she listens to the things that are important to you. During my consultation with Dr Starnes, he immediately made me feel comfortable and did not rush our meeting. You could tell he was concerned about me and answering any and all questions I had. So let's talk about my breast augmentation. Because I had the minimally invasive procedure, during surgery they had to remove my right implant before completing my mitral valve repair. My reconstructive plastic surgeon, Regina Baker, was able to get both implants approved by my insurance (removal & placement of new implants). Because they had to remove and place a new implant on my right side, cosmetically my left implant would have to be replaced also. So ironically, I ended up getting my mitral valve repaired and breast augmentation done at the same time. Yay for new boobs. I was actually more excited about the breast augmentation more than my valve repair.
Anyhow, I hope this was helpful and if anyone has questions for me please post. Sorry for the LONG short story......I will probably post my POST OP experience soon. Lots of gory details there.
(FYI, had to repost, somehow this got posted under GUEST)
So I'll do my best on making this short and sweet. I am 36 years old and had OHS when I was a baby at 2 years of age. Ever since I was young I always knew I would eventually need my valved repaired, but it always seemed so far off in the future. Well, the future is now!! I have breast implants and needed to get them redone due to capsular contracture (extreme scar tissue around the implant). Just like any surgery I've had throughout my life, which is many and won't name them all, I needed to get clearance from my cardiologist.....pretty routine procedure. My cardiologist said, you cannot have breast augmentation you need your mitral valve repaired, it is severely regurgitating. After being in denial for a while, I took to this forum to look for my surgeon. Seriously so thankful, where else do you start to look for a surgeon to work on your heart, the most important organ in the body? After researching many, many, many, many hours, I decided that I wanted to go with the minimally invasive procedure and sought out doctors who specialized in this procedure.
So I will list the surgeons I interviewed and my experience with them:
1) Dr. Alfredo Trento @ Cedar Sinai: First let me say their cardiac facility is very impressive, definitely the best of the best. Prior to meeting the doctor, I was first seen by his nurse practitioner who asked me a variety of questions. Then all of a sudden she got a text and said, "Doctor Trento is coming!" It was like GOD is making his way over.....make clear, hahah! He definitely has a strong presence and strong opinion. After speaking with him, he told me that I could not have the minimally invasive procedure that I desired. That because I had previously had heart surgery there would be too much scar tissue, the only way was to do the traditional sternotomy. He was very stern in his decision and without getting any words in edge wise, he was off to do the next, very busy man! I was extremely devastated, I had my heart set on having the minimally invasive procedure and didn't feel like he was listening to how I felt or my needs. For all the females out there, I didn't want a large vertical scar down my chest. There goes life in low tops and bikinis. Perhaps a little vain, but this is the only BODY I get in life. Yes, I have a vertical scar already from my first surgery, but I was 2 years old and it healed beautifully some people don't even notice it. After my consultation, I received a personal call from Dr. Trento concerned on why I did not schedule for surgery......my mitral valve is in need of repair! I told him that I wanted to have minimally invasive procedure and still looking for a surgeon. He was extremely upset and said it just cannot be done! I greatly appreciated his call and thankful, but my search and journey continued......
2) Next, Dr. Mark Gillinov @ The Cleveland Clinic: To start with Dr Gillinov is the go-to guy if you are seeking minimally invasive mitral valve repair....he's your MAN. Before I could even get a call back or set surgery date, I had to send a variety of documents including previous medical history, ultra sound, medical records etc. As I've found out, this is pretty typical of highly sought after cardiac surgeons. Btw, if you are not familiar with the Cleveland Clinic is in Ohio (me California) and I was more than willing to travel to have surgery. I had researched and watched multiple YOUTUBE videos about him and was SET on him doing my surgery, he's a genius. So after sending all the items they had requested, I waited....and I WAITED. A week went by, two weeks.....after waiting I called the office to ask if Dr Gillonov had reviewed my file. Still he had not, understandably he's a busy guy. So after the third week of waiting, I FINALLY I got a call from his nurse relaying his recommendations. She told me that the doctor's recommendation is to have the traditional sternotomy, same reasons as Dr. Trento, because of my previous heart surgery there was probably too much scar tissue. It is just easier to go straight with the cut down the middle. Yikes, no wayI I was counting on him. I asked her is there any way that he could possibly do the minimally invasive procedure, she said he won't know until the day of pre-op and it's not guaranteed. The only draw back of traveling for surgery, you cannot personally meet with the doctor until days before surgery. At this point, I was overly devastated. Perhaps I should just come to the realization that the minimally invasive procedure just was not going to happen for me. I was literally beside myself, but I need to get this done so I scheduled to have surgery with Dr. Gillinov for December 9, 2016.
3) Lastly, Dr. Starnes @ Keck Medical Center of USC: After waiting for Dr Gillinov to respond week after week, I decided to continue to research on this site, reading people's experience with various doctors. As I am reading, time after time I kept seeing Dr Vaughn Starnes being mentioned. So I decided to see where he was located, which happened to be in California. At this point I hadn't heard back from Dr. Gillinov, so I googled Dr Vaughn Starnes and was able to contact his office and asked for an appointment. Once again, he would not see me without having sent all my medical records, ultra sounds etc, etc. Since I had already compiled this info from the previous doctor, the next day I sent all my info to his USC office. Within days, I received a call back from the office saying they had received my package and medical records and would like to schedule an appointment. Going into my appointment with Dr. Starnes, I had already anticipated him telling me that the minimally invasive procedure was NOT an option. During my consultation, Dr Starnes came in after reviewing my files and let me know that because I was very young he would recommend doing the minimally invasive procedure and explained where the incisions were going to be. Surprised at what I was hearing and the confidence in his recommendation, I told him that I had previous heart surgery and would this even be possible. He said that he knew that, but it seemed that my external scars healed wonderfully and anticipated that my internal scars would be the same. Being a little skeptical, I asked him if he had performed minimally invasive procedure on individuals who have had previous heart surgery. He communicated to me that he has done this exact surgery many times and that it could be done successfully. That day I made scheduled for surgery on December 16, 2016 and canceled my previous surgery date.
So let me sum things up on my experience and how things turned out now that I am almost 5 weeks post surgery. First of all, I feel that it is extremely important to feel like you connect with your surgeon and that he/she listens to the things that are important to you. During my consultation with Dr Starnes, he immediately made me feel comfortable and did not rush our meeting. You could tell he was concerned about me and answering any and all questions I had. So let's talk about my breast augmentation. Because I had the minimally invasive procedure, during surgery they had to remove my right implant before completing my mitral valve repair. My reconstructive plastic surgeon, Regina Baker, was able to get both implants approved by my insurance (removal & placement of new implants). Because they had to remove and place a new implant on my right side, cosmetically my left implant would have to be replaced also. So ironically, I ended up getting my mitral valve repaired and breast augmentation done at the same time. Yay for new boobs. I was actually more excited about the breast augmentation more than my valve repair.
Anyhow, I hope this was helpful and if anyone has questions for me please post. Sorry for the LONG short story......I will probably post my POST OP experience soon. Lots of gory details there.
(FYI, had to repost, somehow this got posted under GUEST)
