TEE Scheduled

[KatieD]

I?ve posted here a couple of times. My sister, MaryC, recently had MV repair. Our brother had MV replacement in September 06, which is when we found this forum. I have been anxiously watching Mary?s impending surgery and now recovery as I knew I was in a similar situation.

After Mary?s surgery I had my regular appointment with my cardio and my regurgitation had changed from moderate to severe. I talked to him about my brother and sister and his reaction was odd to me. He said I was ?no where near? surgery. He was unable to take the time to review my echo results thoroughly and said he would call me later in the day after reviewing them. When I talked to him later he again said I wasn?t ready for surgery and gave me some heart measurements that I later discovered were wrong after getting copies of the echo reports. I have been searching for another cardio and got some good information on this forum, but decided to go with a local clinic that has doctors come in from ?the big city? here in Colorado.

The cardio I saw today was of a different frame of mind. He also happened to have a wife who had MVP and had one of the chordae (sp?) rupture at age 42 for no apparent reason. He said the same things I had already heard from my siblings? surgeons about having the surgery before damage to the heart occurs and while you?re still able to have a repair.

I am getting scheduled to have a TEE done and see a surgeon here in Colorado at the Heart Center of the Rockies. They have recently added a surgeon who does robotic surgery. The doctor I saw today said he was referring to Dr. Cosgrove at Cleveland (where his wife also had surgery), but is now referring to this doctor who has joined their group (of course!).

My sister?s surgeon, Dr. William Ryan, was nice enough to let me send him my records and do a telephone consult. He said based on my heart size and severe regurgitation he thinks I probably should have surgery, but would need to see a TEE first. I told the cardio today that whoever does the TEE would need to contact Dr. Ryan first to make sure they get everything he needs on the TEE.

At this point I can?t help but think the only choice is which surgeon, not whether or not to have surgery, but with information from the inadequate cardio I had before it?s difficult to say for sure.

If it comes down to surgery, it sure would be nice (and less expensive) to be closer to home. On the other hand, I have watched my sister's remarkable recovery and Dr. Ryan does A LOT of these surgeries. All things to consider as I compile questions to ask the other surgeon when I see him.

Thanks for listening and any advice/information anyone has on robotic surgery would be appreciated.

Sherri

 

[dcpickle]

Sherri,
My vote says go to the surgeon you feel the best about, even if you have to go out of town. That's what I did, and it worked out splendidly. Speak to the surgeons you're considering, ask your questions, and you'll come away with some feel for what the surgeon is like. Of course, there may be logistics problems with going out of town, such as taking care of kids while you're away, but for me it was worth it.

Remember, it's your heart. In the USA you generally still get to make the decisions about when and where you have surgery.

Good Luck!

David

 

[Karlynn]

Sherri, do they feel you are a candidate for a repair? If so, go with the surgeon who's most experienced in repairs. (But don't forget to have Plan B in case they get in there and find you need a replacements.)

I'm so glad you went right to another doctor after finding the discrepancies with the first one. Very smart move!

 

[Adrienne]

Hi Sherri, I'm the person who put your sister in contact with another MV repair person in Plano, Texas. Between that person and all the people who have had Dr. Ryan on the VR.COM site, it sounds like you can't go wrong with him. If, for instance, he finds that he cannot do a repair and has to do a replacement, you will have the peace of mind that if he couldn't do it, probably no one could have done it. I think that peace of mind is important. It would be terrible to go to someone you are not as sure about because they are close, find out that they had to to a replacement, and then always wonder for the rest of your life "What if I had gone to Dr. Ryan?".

 

[Susan BAV]

...I'm so glad you went right to another doctor after finding the discrepancies with the first one. Very smart move!

Hi Sherri -

Me too (above); very smart move.

It can be difficult to choose a surgeon, for many reasons, and they do have different preferences and ways of doing things. One that I saw wanted to do a mechanical and more extensive surgery and another one thought a tissue valve could be enough. My husband and I spent a lot of thought and time and prayer over making our best decision. Do any of your family members have any suggestions?

 

[Adam 12-21-05]

Sherri,

Wow. Lots to digest on that one...

The good news is that your family seems to have a lot of experience with valve issues.

That said, leverage their learning.

However, do not be overly dependent it on it.

This is a very personal experience.

Finding the right surgeon FOR YOU is critical.

I know this well. During my surgeon selection process, everybody hammered me to go with Dr. Trento for my Ross Procedure.

However, after doing a ton of research, I chose Dr. Vaughn Starnes (at USC) because I connected with him in a way that made sense to me. Plus, Starnes track record is amazing.

I actually write a lot about the surgeon selection process in my book. Statistics show that 62% of surgeons have excellent bedside manner. It's the other 38% that you need to pay attention to.

From what I know, read and researched, Dr. William Ryan from Texas is a guru.

But, let that feeling come from within you.

Best of luck.

Cheers,

Adam

 

[KatieD]

Thanks for your responses. Yes, it is a lot to digest. I normally try and not put so much in a single post, but felt the background info was important. And I left out an incredible amount of family history - I am youngest of 10 children, 7 of which have been diagnosed with MVP!

Your posts help me confirm the direction I'm already leaning. I trust Dr. Ryan to do the surgery, should I have to have it done, even if it means traveling away from home. My sister's remarkable recovery, aside from her set back with her cardiologist, was a great example. While I was there with her before and after the surgery I heard remarkable stories about Dr. Ryan while we hung out in the waiting room with other families and nurses. Mary's cardilogist was amazed at the small incision she
had after the surgery.

To bring it back to the point, I looked up robotic surgery on the Heart Center of the Rockie's website and I don't feel comfortable with that at all. Maybe a discussion with the surgeon will change my mind, but not likely.

Adrienne, I know my sister is eternally grateful for you putting her in contact with another patient of Dr. Ryan's, it made a really difficult decision much more clear.

As far as repairs go, both the cardiologist I talked to yesterday and Dr. Ryan when I talked to him previously sounded like they thought a replacement would be very unlikely. Of course, you never never absolutely know what they will find until they go in. Dr. Ryan said he is comfortable with either one and they could both be done through port access.

And who knows, maybe the TEE will show it's not my time yet!

 

[hensylee]

"I actually write a lot about the surgeon selection process in my book. Statistics show that 62% of surgeons have excellent bedside manner. It's the other 38% that you need to pay attention to.
Adam"

My doctor has no bedside manner at all. He has been my doctor for nearly 20 yrs. He was educated at Harvard (isn't that the one in Boston?) and is one of the finest surgeons in the country. He saved my neighbor and my mother from certain death, by his surgical skills. I don't know how we got so lucky to have him here in our little town. Our dr-patient relationship evolved into friendship of sorts so that when I go to an appointment, once it's done, we chat and discuss all sorts of things from politics to his yard. He is the kindest man with a wonderful heart, has much trouble when he loses a patient, but remains only business when taking care of medicine. I keep telling him he can't die before I do.

 

[MaryC]

The good news is that your family seems to have a lot of experience with valve issues.

That said, leverage their learning.

However, do not be overly dependent it on it.

This is a very personal experience.

Adam - In our family's case I feel doctors ignored our discussions about our siblings and shouldn't have. I had been going to the same cardiologist for 13 yrs. I happen to have my annual checkup with him the month after our brothers surgery and expressed my concern to him that I was afraid of putting off surgery and costing myself a repair. My cardiologist assured me my brother's situation sounded completely different than mine but said he was referring me for a TEE to get a more detailed look at my heart. Long story short 2 cardiologists ended up referring me for surgery after the TEE. I recently obtained copies of my medical records and in it was a letter sent by my cardio to my GP advising him he was referring me for a TEE. His final statement was 'If indeed she has what appears to be severe prolapse of the posterior leaflet and wide opened mitral regurge as I suspect we will find I might consider at some point referring her for mitral valve repair.'

Good thing I paid attention to what had happened with my brother and pushed the issue. The cardio wouldn't have...

I thought someone recently posted having had the robotic surgery. Does anyone remember who that was?

 

[Susan BAV]

...I thought someone recently posted having had the robotic surgery. Does anyone remember who that was?

It was member B Miner from Greenville, North Carolina, a mitral valve repair.