Need MV Surgery ASAP and Can't Get Straight Answers

[deeL16]

Hi All! Had the TEE done on 9/9 and cardio confirmed that my MV should be able to be repaired. Had consult with surgeon (a group of cardio surgeons) he recommended. Living in the Tampa Bay Florida area - it is going to be VERY difficult to find a surgeon. I know this may be boring, but PLEASE hear me out. This surgeon said there's no such thing as 'minimally invasive' surgery for MV repair. Also told me that the group of 4 surgeons perform 'perhaps 3 MV surgeries' per month - among the 4 of them!! He then said if the valve was still leaking too much after OHS repair, they would then continue on and replace the valve. Said if I needed a bypass, it would be a much easier surgery. I said straight out 'is that because you perform numerous bypasses due to the age population here in Fl?' He said yes.

I have only lived in Florida (lived my whole live in NYC) 5 yrs, and the Drs. leave a lot to be desired. Moved here to help my Dad, because my sister was very ill and had become disabled.

It's a matter of logistics. If I went back to NY (called a surgeon there associated w/St. Francis) I'd first have to establish myself with a cardio, wait for appt. w/surgeon, would need someone to assist me after surgery (my family and friends cannot take off much time from work - with this economy), and my Dad could never leave my sister alone - or with a nurse or aide.

Questions:
1. Is there such a thing as 'minimally invasive' surgery WITHOUT having to open up the breast bone (chest)?
2. If there is MV 'minimally invasive' surgery, were you advised to have OHS first? What are the exact differences between each? (The surgeon I saw, said the 'repair' itself was minimally invasive - but not the surgery itself.)

I've done a lot of research on this, but I haven't found a site which definitively defines the differences, pros and cons, and get conflicting info on OHS compared with 'minimally invasive'.

3. Is there anyone here who knows of a Cardiac Surgeon or Cardiothoracic Surgeon and Heart Hospital in or around the Tampa Bay area (Tampa, Clearwater, Palm Harbor, etc.)?
4. I've looked into all the heart hospitals and major hospitals in the area, and have only come up with ONE surgeon who 'might' be very experienced to do MV surgery.

Any and all assistance again will be greatly appreciated. My breathing and palpitations are getting worse and worse, and I'd like to get this surgery behind me as quickly as possible - with the BEST POSSIBLE surgeon and hospital.

Thanks!! Dee

 

[tobagotwo]

I believe Cleveland Clinic does have an outpost in Florida, but I don't know where offhand, and Florida is a big state. I agree that the surgeons you've contacted really don't sound like the optimum choice. At least they're honest about it.

Hopefully, someone will fill you in on some good options soon. You have my sympathy in regard to your predicament.

Best wishes,

 

[Lynlw]

MY first question would be when he said This surgeon said there's no such thing as 'minimally invasive' surgery for MV repair. I'm not quite sure what he was referring to. There are quite a few ways of doing Min invasive, , between ribs, small sternum incision, robotics ect, but some people think they are referring to repairs/replacement done by caths. IF he was talking about they don't do MV repairs with smaller incisions or thoricotomy (between ribs) Then I think he definately is not the right surgeon.
As for traveling to NY or anywhere else, you don't have to first get a cardiologist ect. You just make choose your surgeon, then you ususally get a cardiologist that just follows you when you are inpatient, as for recovery , manypeople fly home a couple days after surgery, so you wouldn't really need to find family to take care of you where you had the surgery.
I didn't do the poll part.

ps OHS refers to opening the chest to work on the heart/valves ect and usually involves being on Bypass (heart lung machine) the size of the incision doesn't matter it's still OHS

 

[tobagotwo]

To go along with what Lyn has offered...

The definition from the National Istitute of Health: Open heart surgery is any surgery where the chest is opened and surgery is performed on the heart muscle, valves, arteries, or other heart structures.

Many surgeons won't do minimally invasive OHS for a mitral valve repair, because they feel there are too many possible issues that may come up, and too little room to work in. It's a consideration that you should weigh.

However, there are surgeons with great success rates on minimally invasive mitral repair (at Cleveland Clinic and many others). This can be done in various ways, such as through a small "window"created in one of several ways, not including the separation of the sternum. Some even do the actual surgery robotically, with the DaVinci system (even smaller holes). If that approach is important to you, those are the surgeons you need to seek out.

If you Google "minimally invasive mitral valve repair surgery" you will find a number of hospitals and more information. Add "Florida" to that, and you'll also get some Florida hospitals that do perform minimally invasive mitral valve repair surgery.

Best wishes,

 

[Megan]

hey there. you might want to try Kenneth Herskowitz in Fort lauderdale. i know its a bit of a fly or drive but closer than NY for sure! his # is 954-355-4665 he works out of several hosptials i think but my cousin just had ohs with him in feb and spoke very highly- plus he is a specialist in minimallly invasive surgery. not sure about the mv but it couldnt hurt to call and find out! best of luck to you.

 

[Star54]

If you go yo NYC...my doc is one of the best:

www.MitralValveRepair.org

 

[deano89]

this is what one of the top uk surgeon says about minimal inv surg:-

Why do they still need to open up the whole ribcage? Why can't they use keyhole surgery for this? (via Twitter)
'And this is why the minimally invasive surgery which people keep talking about is not good for you, because to get the level of perfection that we're trying to get here, you simply can't do it through minimal-access surgery, and what happens to patients in 30 years' time after the repair is what matters, not how they are three weeks after the operation.

'Again, a very good example of how with minimal-access surgery, you simply couldn't do this operation satisfactorily. As you can see I'm not a fan of it, it's a bit like wallpapering the front hall through the letterbox. You know, we can do it, but would you like the results? And I think that very much of minimal-access surgery.'

Frank Wells, Cardiothoracic surgeon, Papworth Hospital (while operating)
link to the op : http://www.channel4.com/explore/surgerylive/surgical1.html

the operation was shown live on UK TV if you go to timeline there are videos of the whole op

 

[Jkm7]

MY Mass General surgeon wanted to try for a mitral valve repair instead of replacement though we both knew it was questionable if possible. He said we could talk about minimally invasive but he said he had much better access with more room to work with open chest. This was my second OHS and without hesitation I told him to do full open chest. It was very much more important to me for him to have the best chance at the best possible surgery than to have a smaller incision.

Some (many) people say it is more painful having the minimal vs full chest due to muscles being cut.

I agree no need for you to get new cardio if you go to distant hospital. I live outside of Boston and my local cardio does not practice at MGH so my surgeon sent in one of their cardios to look after me while in patient. I then returned to my local cardio for follow up after I got home.

The longer you wait, it is possible the valve can get worse and the chance of repair can lessen.

If it is time, I suggest you don't drag your feet.
I think the suggestion for Cleveland Clinic Florida is something for you to look into. We have had VR.com members have their surgeries there and were very satisfied with the care and surgeons.

Best wishes. Let us know how things are going for you.

 

[Ross]

I don't know of any in Florida. May I suggest Atlanta, GA or even perhaps Texas?

 

[Braveheart]

deel16-


I live in the Tampa Bay area, and travelled to Cleveland, and had my AVR & bypass done at the Cleveland Clinic. I did a lot of research, and there was no one around these parts that I would trust with my heart.

CC makes it very easy to do a self-referral. All you need are the reports (and disks) from your cardio. You can look up the credentials of all of their docs, and then choose who you want. The folks in Cleveland are very adept at dealing with out-of-towners, and their admission system is very smooth.

Some weeks after my surgery, I went into A-Fib. I went to Tampa General Hospital. They fixed the a-fib, but I ended up with chemical infiltration and cellulitis in my arm, (from an IV done improperly, and not monitored)which caused a clot in the arm. I also got phlebitis in the other arm. They were giving me shots in my belly. One of them was given improperly, and I have a marble sized lump in my belly. I cannot imagine anything like what I experienced in Tampa would have happened at the CC.

There was no comparison between CC and Tampa General. I have to admit that the trek to Cleveland WAS expensive, ( there are ways of minimizing the cost) but so well worth it. The service is superb, and if one could consider this a fault, maybe it was that I had too much attention. Every time I turned around, there was someone checking me.

Take a look at this:

Dr. Gilanov (the doc who worked on Robin Williams) specializes in minimally invasive mitral valve surgery. My doctor, Dr. Sabik, is wonderful, and also does that kind of work.
http://my.clevelandclinic.org/staff...advanced&service=Mitral+Valve+repair&tab=true

 

[Lynlw]

Other thoughts on Min invasive to consider, and I am NOT trying to talk you out of it many people go thru them with no complaints.
BUT IF they start out with a smaller incision and can't do the repair ect, they MIGHT have to either make the incision larger or open your sternum (if the origonal incision is in the side you'll have. Also with almost every Min invasive I know about, you need a seperate incison for the heart pump. That usually is about a 3 inch incision in your groin (femoral) or upper chest/shoulder area for the carotid. Somestimes the pump incision is more uncomfortable than the incision in your chest.
As for the pain, I've heard both ways are less painful (from people that have had both kinds. Since the thorectomy cuts thru muscle that can be painful

The plus side is (IF your surgeon says you are a good candidate) the recovery time is usually quicker ect.

PS I believe a few members have gone to Shands and they do Min invasive.

 

[tobagotwo]

http://my.clevelandclinic.org/florida/default.aspx

There is a Cleveland Clinic branch in Florida (West Palm Beach and Weston). However, I can't tell from the description if they do OHS there. There is a phone number on the site.

Best wishes,

***UPDATE***

Looks like they do: http://www.highbeam.com/doc/1G1-18217983.html from way back in April, 1996:

Cleveland Clinic Florida heart surgeons are the first in the world to offer minimally invasive surgery for mitral valve repair and replacement, and the first in Florida to use the same approach for aortic valve surgery. The procedure, which is performed through a three-inch incision, is much easier to tolerate and less painful than standard open heart surgery. Patients are up and about the day after surgery and generally discharged three days later.

Cleveland Clinic Florida cardiac surgeon Carl C. Gill, M.D., learned the technique at The ...

Of course, I've been discharged three days after surgery twice after fully-opened-chest open-heart surgeries.

 

[Scooby06]

http://www.heartsurgery-csa.com/
Vinay Badwhar and his group have several very capable surgeons in the Orlando/Tampa/Clearwater area.

 

[Adrienne]

Minimally invasive MV repair absolutely DOES exist!!! There are several members here who have had it. There is a surgeon in the Dallas area, Dr. William Ryan, who has done a lot of them, one on a friend of a friend with whom I now correspond.

One of our members, MaryC, had hers done by Dr. Ryan. Her sister also did. There is a member in LA, Debster913 who had a minimally invasive MV repair.

My repair, according to my surgeon, was too complicated to be done in a minimally invasive way, but definitely it does exist.

 

[kfay]

One of my friends here in Charlotte had her mitral valve repaired here via minimally invasive (through her ribs).

I don't know of anyone specifically in your area, but as others have mentioned, CC may have a branch in Florida and the Mayo has one in Jacksonville, but by the time you drive that, you may as well fly out to somewhere else. It seems to me that someone has had this done in central Florida somewhere (maybe near orlando) and that's at least a drive that your father could handle to come and visit you and go back. You may also check in Sarasota and see if there is someone there. I know that it is a smaller hospital than you are in, but when I was headed down there about a month after my surgery, several Dr.s told me not to be worried that it was a great little hospital that had a very good cardiac program. Now, that could be for the same reasons you stated, which is there are so many elderly people they do a ton of bypasses and not many valve replacements, but it doesn't hurt to look. Actually just googled Sarasota myself and here is this link: http://www.smh.com/sections/hv_institute/Common-Minimally-Invasive-Procedures.html

Best of luck to you.

Kim

 

[Braveheart]

kfay- I too had researched Sarasota Memorial, and I had heard good things about them. I would expect that it is probably one of the best bets, if one wants to be treated in a place that can be driven easily from Pasco County.

 

[Jkm7]

We have a VR.com member "Back Doc". I think his surgery may have been at Cleveland Clinic , Weston, Florida.

 

[cp172]

Hi Dee,

When I needed surgery I found a surgeon in Macon, Ga who did a number of MV surgeries each year. He came highly recommended by a friend who is a teaching surgeon at a medical school. When I met with the surgeon he told me I had a 10% chance of a repair. When they did the TEE prior to surgery he decided to use the DaVinci robot to do they repair. He found I had a spare chordea and used it to replace the one that had gone bad. I was back at work part time three weeks after the minimal invasive surgery. My surgeon told me he preferred minimal invasive surgery for the MV becuase it provided the best access to the valve. He said if he had to go through the chest he would have to rotate the heart to get to the MV.

I am sure there are some fine surgeons in Florida. Have you tried the Mayo clinic in Jacksonville? Best of luck

 

[BillCobit]

Answers I got from local surgeons were suspect and less than encouraging. I mailed my echo tapes and reports to Dr. Mark Gillinov, and asked to be evaluated as a candidate for MV repair. He phoned me, gave me his opinion and and directed me to his nurse practice manager who efficiently guided me through the rest of the process. CC is very adept at handling non-local patients. The travel was a bit of a nuisance, but well worth it. I am approaching 8 years with no leak, no meds and no complications. I'm very active, too, as a cyclist and triathlete. I couldn't be happier with my repair and highly recommend Cleveland.

 

[Marcia58]

Dee,

I just found this thread. You haven't re-posted here.... Hope you're OK. Here are my answers:

Questions:
1. Is there such a thing as 'minimally invasive' surgery WITHOUT having to open up the breast bone (chest)?

Yes, my MV repair was done minimally invasively through a 4-6 inch incision between my ribs, just below my right breast.

2. If there is MV 'minimally invasive' surgery, were you advised to have OHS first? What are the exact differences between each? (The surgeon I saw, said the 'repair' itself was minimally invasive - but not the surgery itself.)

MV minimally invasive surgery is OHS. Some people don't qualify, though, because of weight issues or other medical conditions.

3. Is there anyone here who knows of a Cardiac Surgeon or Cardiothoracic Surgeon and Heart Hospital in or around the Tampa Bay area (Tampa, Clearwater, Palm Harbor, etc.)?

4. I've looked into all the heart hospitals and major hospitals in the area, and have only come up with ONE surgeon who 'might' be very experienced to do MV surgery.

A cardiac surgeon who is experienced and competent in minimally invasive MV repair should be well-known enough (just by word-of-mouth) that he/she has a procedure in place to assist non-local patients.

I don't know Florida that well, but I was going to suggest Mayo Clinic, Jacksonville, too. I've worked with Mayo, Rochester, and the whole Mayo institution seems very skilled and commited.

FWIW, I had my mini-thoracotomy MV repair done by the chief of cardiac surgery at the University of Chicago, who said my repair "should last a lifetime."

Let us know how you are....

Marcia