Paul's Journal

Debbie Kelly  Paul, I highly suggest you get a second opinion, and even possibly, a third. Dr. Joseph Lamelas recently moved back to Miami. He was here in Houston for two years, and before that, in Miami. He is considered one of the best in minimum invasive surgery. Several people on this site have used him.
There is a few other patients who have or are seeing Dr. Accola at Advent. Hopefully, they will tell you more about him.
I wish you the best.

Rob Sparling  Paul, so glad to see you back online. I was scrolling down the other day to find your last post to check in on you and couldn’t make it down the list far enough. The site wouldn’t allow me before it locking up and refreshing to the top.

I would strongly encourage the option that gives the surgeons the *most* latitude to get things done right! On top of that, get the best surgeon and team available.

The sternotomy is not really something you need to avoid — it really isn’t horrible. It is mostly mental and adds a day or two to your hospital stay and some discomfort. If it extends your life, and increases the odds significantly that things go well, it is an OK extra “feature” of the whole thing that is worth it!

Phyllis Petersen  I'm sorry to hear that you have another disappointment. This process is stressful enough without any added twists and turns. Good luck with finding the team and process that you can feel really confident in so you can move forward.

Ellen Leng  There are surgeons out there who will do a lateral thoracotomy repair without the robotics, or do a partial sternotomy (which I had) without the robotics. The surgeon I used is Luis Castro, however, he's in Northern California. I'm certain that there are great surgeons nearer to you who could do the repair you want in the way you want it done. Agree, get at least one more opinion!

Meredith Bray  I was very happy with my treatment in Clearwater. https://baycare.org/hospitals/morton-plant-hospital/services/heart-and-vascular/our-specialties/valve-and-structural-heart-care

Meredith

Rob Sparling  Paul, Cleveland Clinic Weston? May be easiest to get that arranged at a CC facility given the progress you made up to this point with CC Main Campus. Can (did?) Dr.Gillinov or your CC Cardiologist make a recommendation to you?

Of the major cities in FL, Weston is nearest to Miami.

Rob Sparling  Paul, There is also the Heart Hospital search tool from this site which indicates a facility in Orlando.

https://www.heart-valve-surgery.com/hospital/florida-hospital-cardiovascular-institute-valve-microsite

Rob Sparling  Googling for hospitals with high scores from STS yields Sarasota Memorial Hospital. Sounds like you should do some research to see where the rock stars are among them (and others?).

https://www.smh.com/Home/News-Events/Release/smh-cardiac-surgeons-earn-highest-sts-ratings-for-quality-care-outcomes

Rob Sparling  Disclaimer..... this info is just from surfing the web! No warranty implied or otherwise!

If it were me, I would get back to Cleveland, see Gillinov, get the full sternotomy and find a way to get a ride home.

Nancy LeClair Gottlieb  Paul I went to Cleveland Clinic in Weston Florida. I live quite close to the hospital. was hoping to have minimally invasive mini right thoractomy. But I had a lesion or cyts in my liver so I had to have the sterotomy. I also had the MAZE procedure as well as ligation of the left atrium. Because I was hospitalized with AFib in May. I knew I may need surgery. Unlike you I was aware of my heart murmur as a child. I was on medication since the year 2000. I knew surgery could be in my future. . The AFib was probably from my left atrium getting enlarged. Otherwise I didn't have symptoms. I'm feeling well now. My incision was just over 5 inches. I'm back to doing everything I did before. They put me on warfarin after the AFib and I may be able to get off it six months after surgery.

LINDA ROBERTS  Dr. Acoula is at Florida Hospital in Orlando and is a recommended surgeon on this site. You could get an opinion from him. I am from Tampa, Fl. and ended up going to the Cleveland Clinic in Ohio and had valve replacement with Dr. Svensson. Very glad I went there.

Rob Sparling  Paul, what did Dr. Gillinov recommend as next steps? He is the one whose opinion/recommendation matters most.

Susan Lynn  Paul - That's a tough one. Is there any way you can adjust your schedule to allow for the sternotomy or mini- sternotomy? You're already there - you're only going to have to return. All the minimally- invasive approaches require femoral cannulation. It's a huge disappointment, but our conditions don't get better on their own and there is risk while we wait. Best of luck with your decision.

Dan Baltazor  Sorry to hear Paul. That's a long way to travel. Praying the answers to your right path start to appear for you.

John Morales  Paul I can understand your being reluctant to have the OHS , but remember anything you have to do will not be there to do if you don't have your health I don't know how severs your case it but it could make a big difference . Wishing you the best of luck.

Willie Radl  Dang, sorry to hear that. I'm sure its hard to come to terms with not having the robotic surgery as planned. Hopefully you will find a path forward and can figure out a way to make the sternotomy work. I know I was bummed out when I learned I couldn't do a non-invasive procedure as well, but will say the sternotomy wasn't as bad as I had envisioned, best of luck to you.

Rob Sparling  Paul, the full sternotomy is not something you should worry about. I agree with Willie, it wasn’t that bad. It is also an option that gives the surgeon more leeway, I understand. Give them the options they need, man! Susan’s advice is also very practical. Can you arrange to stay in Cleveland and define a clear path forward? Hang tough! Don’t let this shake you.

Barbara Wood  When I first came here 2 years ago I was also eager for robotic surgery, but after reading a number of stories on here from patients who had them & had complications & pain after the fact, I changed my thinking. I had a full sternotomy & truthfully it just wasn't that bad, it's considered the gold standard. Good luck going forward, you've gotten some good advice here imo.

John Morales  Hi Paul , 1st off wishing you the best ive just started my journey needing Mitral value repair or replacement not sure what I need but I know I have severe regerg, I know something was wrong I just finish dealing with Prostate cancer and this showed up, as my Dr said best find out whats wrong early thatn later as it will make it easier for them to deal with hopefully you have not other issues and can get it done and out of the way and back to your life so go do the test and move forward this is what Im hoping for also.

Paul Pierce  Thanks for the input. Just see what the doctor says its not going to get better and is probably going to get worse. That's what I was told. I have some other issues I have gerd controlled though and some minor lower back pain at times but generally healthy. Oh and of course Anxiety.

Dan Baltazor  Book your room Paul. You can do it. It's not easy, I know, I just went through this. It's really hard!!!!! But, you can do it. Have Faith and trust your medical team. Our build up of anxiety makes everything about this worse. Just read everybody's journals. You'll draw courage from them. Praying for Peace for you.

Brian Havlin  Hi Paul, I had mitral valve repair on 11/26 from Dr. Gillinov. He's the best...you're in great hands. Also had the robotic procedure. You can handle this! You're at the best place in the country for heart surgeries such as yours. You will go to sleep and when you wake up it will be over. I was also worried about the tube. You're so sedated when you first wake up that there's a good chance you may not remember it. If you do notice it it's not as bad as you think. Just relax and answer the nurse's questions and they will have that tube out quickly. All of the anticipation and thinking we do leading up to the surgery truly is worse than the actual procedure. Praying for a speedy recovery for you!

Adam Pick  Paul, You are in GREAT hands with Dr. Gillinov!!! Many patients in our community have had excellent results with him and his team. https://www.heart-valve-surgery.com/surgeons/dr-Marc-Gillinov-Cleveland-Ohio.php

Sara Moyce  Hi Paul! I had mitral valve repair on 11/28, which I chose to do sooner than later to avoid complications down the road. I am 56 and my severe mitral regurgitation was also caught in a routine exam - when they told me I needed surgery I was just blown away - not prepared for this whatsover. I hope you find this website as helpful as I have. The folks here have given me tremendous courage, especially the morning of surgery on the way to the hospital. Best wishes to you!

Lisa Guinan  I also had my mitral valve repaired and was very worried about the vent tube. I was fortunate enough to have mine removed 4 hrs after surgery. I was really only aware of it for about the last 30 min. It wasn’t bad at all. It helps that you know it will be there when you wake up and just let it breath for you. You can do it!

Julie Gerard  I want to tell you to stop worrying so much! I’m 8 months post mitral valve repair and though it’s obviously major surgery, it truly is not as bad as you’re imagining it will be. You will be amazed at how well you do and you will feel like a warrior when it’s done!

Rob Sparling  Paul, you are in the best hands. If you are worried, be sure to call Gillinov’s office! They will take care of your nerves and take care of your heart once you get there. Make the reservation and get to Cleveland! My surgery was Sept 26th with Dr Pettersson and am so glad I did it and so blessed to have had the CC team! These talented surgeons and surgical teams give us a gift! You can do this! ❤️💪

Paul Pierce  Well It didn't happen. I went through all the testing. Than to the consultation and was told the robot procedure was not an option due to possible complications from mild femoral artery calcification. I was there with a brother and a friend and it was a disappointment to say the least none of us were prepared for the longer recovery 1200 miles from home with jobs.. I went back in florida to reschedule a sternotomy at a more prepared time and date for a longer recovery. However when I made the appointment Dr Gillinov recommended another surgeon at the clinic. So I guess he is not pleased with me. I am minimally symptomatic trying to find a surgeon. Dr Accola in Florida is a possibility for me since Dr Gillinov is no longer available. Does anyone recommend a surgeon I am ready. I have consulted with my employer and they got my back. I wish the CC would have let me do my scans here at my local hospital so I could have prepared for what ever type of procedure I was a candidate for. If I had known I was not a candidate for Robotic surgery before I went to CC they would have already done my surgery. Starting over at least I know what has to be done and how. i'm glad I don't have coronary blockage.