Mvr

[grattonpa]

I am 41 and as new diagnosis of MVR with significate heart enlargement. I'm am wondering if anyone out there can suggest a good surgeon in the Burlington, Vermont area. I know cardiologist will suggest one but I would like recommendations.

Also, how do I know what is best replace or repair?

How long is recovery from each?

Scared to death to take the next step. I'm in big time denial. Any advice would be reassuring.

 

[Cooker]

Welcome!! I was back to work in one month. Hind sight, that was too fast. As far as repair vs replacement I would leave that in the surgeons hands.

There are many here that can answer most of you questions. My job is just to keep you laughing It really is not that bad, honest.

Tom

 

[Ross]

Best thing to do is go to your local or chosen facility and ask the cardiac ICU nurses who the best surgeon is. Believe me, they make no bones about it, if someone is bad, they will not recommend them. As for facilities, is leaving the locale an option and traveling to another state?

 

[catwoman]

Not sure if chances for repair over replacement depend on the nature of your valve problem. The faster you get into surgery supposedly is in your favor if you want a repair.

My surgeon attempted to repair mine, but there was too much regurgitation, so he put in a St. Jude (my choice). The valve leaflets had myxomatous tissue, so that may have been a factor. I had a sternotomy; didn't know about minimally invasive surgery at the time.
On the other hand, my husband's MV was repaired (May 10, 2007). His MV regurgitation was due to chords that had ruptured and a leaflet that had torn due to a sternum fracture caused by airbag deployment during an auto accident. I shopped for a surgeon who could do a port-access incision (under right breast, between the ribs) instead of a sternotomy.

My left atrium was enlarged significantly and I was in bad shape because of the damage to the heart. John's had enlarged some, but otherwise he was in good shape.

If you can find a surgeon who has a very good track record with MV repairs via the port-access (Heartport is a trademark term), go for it. I believe it's less painful than a sternotomy and you should recover faster. A nurse at Dallas Presbyterian tried to tell John & me that more patients claim it's more painful, but when I asked her point-blank, "Have you ever had open-heart surgery?" she didn't answer. I told her, "I have, and I know a sternotomy is more uncomfortable."

It's hard to believe that my husband had heart surgery just 2 months ago. He looks terrific, has resumed all activities (except mowing our 1-acre lawn -- neighbors are doing that, bless them!).

Overweight people or large-breasted women may not be candidates for minimally-invasive surgery, since the incision is under the right breast.

Good luck!

 

[geebee]

Welcome,

I do not know of hospitals in Vermont but there is an excellent hospital for heart surgery in Boston - Brigham. Is there any chance of going there?

Since you already have heart enlargement, you should have surgery ASAP so to avoid permanent damage. Try to get out of the denial phase and take charge. It is normal to be scared but not to the point of delaying surgery.

Repair is usually better if the surgeon can do a good repair. It is always preferable to keep your own valve. However, replacement is so very successful these days that either path will give you good results.

Let us know how we can help you through this.

 

[grattonpa]

Mvr

GeeBee,

I'm unsure about traveling to Boston. I have been told that this is a common and simple surgery that is done here in Vermont. To me any surgery that stops my heart is not simple.

What are some of the questions I should be asking my cardiologist and surgeon?

 

[Karlynn]

If your surgeon thinks it's possible to repair your valve, you want to make sure that the surgeon you have do it has done tons of repairs. You don't want to get a repair and then end up back in again in 3 years for a replacement.

Also, if you all decide that repair is an option, you should also have Plan B and a valve choice if they get in there and find it's really better to replace it. They don't know anything for sure until they take a first hand look at your valve.

Since you already have heart enlargement, Geebee is right, sooner rather than later is better.

Best wishes - glad you found us!

 

[geebee]

GeeBee,

I'm unsure about traveling to Boston. I have been told that this is a common and simple surgery that is done here in Vermont. To me any surgery that stops my heart is not simple.

What are some of the questions I should be asking my cardiologist and surgeon?

Well, it is a common surgery but I agree with you that it is not simple.

You should find out how many surgeries the surgeon has completed, how many Mitral valve repairs, how many replacements and what his success/mortality rate is. Run away from any surgeon who does not seem happy or willing to discuss such facts. Also, find out the same stats for any hospital you research.

Ask about repairs/replacements and why one or the other is suggested for you. Be sure and have a replacement choice made ahead in case a good repair cannot be completed.

Having a great surgeon and a great hospital is so very important. Traveling to do so, if needed, could save you from a lot of problems.

 

[Lynlw]

Well, it is a common surgery but I agree with you that it is not simple.

You should find out how many surgeries the surgeon has completed, how many Mitral valve repairs, how many replacements and what his success/mortality rate is. Run away from any surgeon who does not seem happy or willing to discuss such facts. Also, find out the same stats for any hospital you research.

Ask about repairs/replacements and why one or the other is suggested for you. Be sure and have a replacement choice made ahead in case a good repair cannot be completed.

Having a great surgeon and a great hospital is so very important. Traveling to do so, if needed, could save you from a lot of problems.

I agree with everything Geebee said here. Lyn

 

[Adrienne]

Ditto to what everyone has said. If a surgeon is very experienced with mitral valve repairs, and if he/she thinks your valve is repairable, a repair is the way to go. If it can be done by the Heartport method, all the better. It is extremely important to find a very experienced surgeon, even if you have to travel to do so.

 

[Phyllis]

Ditto to everything everyone has said and you are not that far from Boston where you will find surgeons at either Brigham or Mass General who have done many repairs and replacements- it is at least worth an appt. for another opinion!

 

[grattonpa]

replacement valves

replacement valves

I'm afraid to ask...how many type of valves to I have to choose from if it needs to be replaced? I have done no research to date. This has happen pretty fast. I had no symptoms until April and then ignored them until the middle of June.

 

[geebee]

I'm afraid to ask...how many type of valves to I have to choose from if it needs to be replaced? I have done no research to date. This has happen pretty fast. I had no symptoms until April and then ignored them until the middle of June.

There are 2 categories - tissue or mechanical. Within those categories, there are a few options but the most important decision is tissue or mechanical and that opens a whole new can of worms as to what is best. Ultimately you and your surgeon will decide what is best for you.

 

[WayneGM]

I can't add more to what's been said, but just wanted to welcome you to the VR Community. If you are able to have a repair, that's usually the first option. That's something the surgeon will typically determine. I was able to have a repair, so can't help you with the replacement type decision. As Geebee mentioned, you have tissue and mechanical choices, and choices underneath each of those. From what I've read there are pro and cons to both and in the end its a matter of personal comfort and confidence with your choice. There's not a really a wrong answer, other than denial.

With respect to recovery, everyone is different. Depending on the type of job you have, it could be anywhere from one month to 3 months. Sometimes it depens on the short term disability insurance you have at work I have an office job and I was told 10 - 12 weeks, and was covered for 100% during that period. However, going back to work and feeling 100% is two different things. It was over a year before I was physically doing everything with the same energy as I was doing pre-op. I had no noticeable symtoms pre-op.

Best wishes for your upcoming surgery and recovery.

 

[catwoman]

grattonpa:

As everyone has said here, the ideal outcome is to have your valve repaired. Your native mitral valve -- repaired properly -- will be far superior to any replacement valve, whether tissue or mechanical.

The outcome of my husband's MV repair has far surpassed my expectations. I fully expected him to be an "invalid" (like I was) for a while post-op. Hah! Not so. He's taken maybe 4 Rx pain pills in the last 9 weeks.

John & I discussed his surgery & recovery yesterday. He said the first 2 days (surgery & first day post-op) were the worst. The hospital stay was a bummer, he said, because you don't really get rest. He only had a loss of appetite for about 1 day, while in the hospital. No "pumpheadedness" like we complain about. He went back to balancing the checkbook & paying bills the day he went home from the hospital. (THANK HEAVENS!!!!!!!)

I called John at work about an hour ago (his first day back at work). He said his co-workers have commented about how great he looks (no tiredness now and he's lost about 10 pounds from all the walking he does daily).

Like I & others have said, not all cardiovascular surgeons have a really good success rate with mitral valve repairs. A surgeon who is experienced with MV repairs -- i.e., does a bunch of them routinely -- is what you need. If -- heaven forbid! -- your valve can't be repaired, you know you've still got a great surgeon who can put in a replacement valve.
BTW, Dr. Ryan, who did my husband's surgery, said that if a repair wasn't possible, he could still put in a mechanical (On-X or St. Jude) via the same incision.