Soooo many questions....

[AtlantaPat]

New member here... I've just found the site and what a godsend it is! I was scaring myself on the medical journal websites trying to learn more after my cardiologist (from Emory here in Atlanta) told me last week I'd need mitral repair surgery.

Have known I have MVP since diagnosis in 1992, but now cardio says it's degenerated. He was hopeful mine would just be a "monitor closely" situation, but after he found ruptured chordae in a TEE last week, he says surgery's gonna be the way to go. Then he left town for a conference just as all these questions started occuring to me!

Anyone know how it's determined if someone's a candidate for robotic VR surgery? In roughtly what percentage of mitral repairs are minimally-invasive procedures (robotic or not) used? Is the sternotomy still used most often for MVP repairs? (cardio says I shouldn't need a replacement).

What are the averages for recovery time for the robotic surgery and the traditional sternotomy version (I'm 45 and in otherwise good health, only the very, very beginnings of symptoms for the MVP...minor, occasional lightheadedness and SOB).

My doc knows I work in television news, but we haven't discussed the way my work can take me from 0-60 in a couple seconds when there's big, breakign news (I work on CNN'a National Desk). Should I spill that to him? Are spikes in blood pressure to be avoided (he has me on Altase 5mg)? If so, I need a job reassignment as I wait for a surgery date!

I keep seeing Cleveland Clinic pop up as top of the heap for vale repair/replacement. How long might somone wait to have their procedure there?

More questions to come, but I need to think of them first.
Thanks-
Pat

 

[Curtsmum]

Hi and welcome my son is going to have his mitral valve replaced soon. I can't help much, i have read some posts and the robotic surgery sounds good, i'm sure more people who know about it will be along soon. Take care and best wishes Paula x

 

[Mary]

Hi,
I know very little about mitral valves, so we need to wait for some others to come along. I just want to welcome you, and say that you've come to the right place.

 

[Georgia]

Hi, Pat - welcome. I was diagnosed with mvp in 1979; also told not to worry; wasn't followed up and ended up with a mess. You're lucky you have minimal symptoms. Do you have a copy of your echo? Or the values from your TEE? You really don't want to mess around with this because you can have damage to your heart - sometimes permanent.

My surgeon assured me that my mitral valve was reparable; he did the repair and it didn't work, so I have a mechanical. I'm not sure I'd have chosen that if it had ever been discussed, but I don't fret about it - it works and my old one didn't and I feel good and that's that. But by all means look into the various types of valves in case a repair isn't possible.

If your insurance will cover it, Cleveland Clinic is certainly the place to go. Their track record on repairs is excellent.

I don't know what the criteria are for robotic repair or replacement. If you choose to go that way be sure the surgeon has done lots and lots of the procedures. Better a sternotomy than being a guinea pig.

I really think that if your employment is having a deleterious effect on your heart you'd know it - as your symptoms worsen, 0 to 60 simply isn't going to happen very quickly - at least not with several stops to catch your breath. Folks on this site have been in the waiting room for years and still jog and work out regularly. Extreme weightlifting seems to be the big no-no.

Minimum 6 weeks for recovery - regardless of the type of surgery, your heart will need time to heal. You won't be really up to snuff for months, but most seem to get back to desk jobs at about 6 weeks.

More folks will be along shortly. Take some time to go through the info on the site - it may be a bit scary, but knowledge is certainly power.

 

[tobagotwo]

Apart from the normal cautions about high BP for everyone, there usually isn't any extra concern after the repair. Most often, BP concerns go along with aneuristic artery replacements. It's great that your surgeon is confident that your valve can be repaired, as that gives the best result.

You will want to avoid that "head rush" excitement afforded by your job for six weeks or so after your surgery. Your heart will be recovering its equilibrium, learning to time itself again as it heals. That type of high-order stress might help a tendency to arrhythmias. You will likely have some mild episodes of palpitations after surgery as it is. You wouldn't want to encourage them or an otherwise casual afib episode to stick around.

I found that right after surgery, the adrenaline resulting from bidding on eBay auctions in the final seconds was actually a bit painful. And I don't live a sheltered life, so I think there must be something to it.

Best wishes,

 

[hensylee]

welcome, Pat from Hotlanta - (daughter is in Sharpsburg)

There are lots of good heart hospitals but I believe you will find that what you have heard is true - Cleveland Clinic. There are 3 in Florida that I have heard about. A few members have had theirs done in Atlanta (Granbonnie is one) with great success so you ought to be ok there. She's been out a couple weeks but we expect her back soon - death in the family.

There is a lot to learn from VR members so stick around - you can also use the search function to find info - just type in a word, hit the go key and you'll find lots.

 

[Kate]

Welcome! I had my surgery at the Cleveland Clinic just under two months ago and was amazed at the level of care I received there - very high nurse to patient ratio, emphasis on treating the whole person and, most importantly, a great record of sucessful operations with low mortality rates.
I can't give specifics related to your condition as I had my aortic valve replaced. However, I can let you know my experience with wait times. I requested a surgical evaluation in mid July, received my consult and okay for surgery in early August, and was scheduled for surgery September 12. So, all told, it took about 2 months. Hope this is helpful! Kate

 

[BAV Pt's daughter]

Welcome to the group!! I am sure there are many to advise you about mitral valve issues!! Ask away, there are so many here with wonderful answers!!

 

[PJmomrunner]

I certainly wouldn't dispute Cleveland Clinic's reputation as a top-notch cardiac care facility. There may be more than one valve guru on staff there. I would point out, however, that the U. S. News and World Reports list of the top hospitals is hardly a scientifically generated list. They basically asked a random sample of 2,250 doctors who they thought the top 5 hospitals in the different specialties were. All of the hospitals on the list are good, the higher the hospital on the list, the more doctors who think it's good. So?

I think the quantifiable data on the list is more valuable than a hospital's ranking. (That said, I do want a hospital that is on the list.) For instance, a low nurse to patient ratio has got to be good, and a hospital (like CC) that has no trauma unit (no emergency surgeries) probably has fewer deaths on the books to skew the stats downward.

 

[geebee]

Welcome Pat,

Hearing you must have OHS is a bit scary even if you've know about the problem. You have found the right place to help you through.

I would be concerned about having robotic surgery done at this point because it is still so new. The other issue is if it turns out your valve can't be repaired, you end up being cut in two areas making for a longer (or at least more painful) recovery time. A sternal entry gives the surgeon complete access to do a replacement if needed. Many of use were told repair was a definite only to have the surgeon end up with egg on his face when the valve fell apart in his hands. Even the best surgeons are wrong sometimes (doesn't mean they are not good surgeons) as, until they are actually in there, the extent of damage may not be known.

I cannot address the issue of hospitals because I went against all stats for my last OHS. I had a great local surgeon who is affiliated with THE HOSPITAL in Cincinnati for cardiac surgery. However, I chose the smaller hospital where he actually ran the OHS unit. I felt the nursing care was more attentive and the ratio much better than the larger hospital. I have never regretted the decision. I hear the Cleveland Clinic is great so I am sure you will not go wrong with it but there are also many, many hospitals with good care. Talk to a surgeon and a cardio you trust and make your decision from those discussions.

Best of luck to you.

 

[Atlanta Sweetheart]

MVP Robotic Surgery

MVP Robotic Surgery

Dear Atlanta Pat,

I decided to finally register on this site to try an answer your question about robotic mitral valve surgery. I have been monitoring this site since I learned I may need mitral valve repair or replacement. I've gotten addicted to keeping up with everyone and have learned so very much, thank you all.

I guess I am reserved and haven't wanted to interact until now and I hope I can help you. I live in the Atlanta metro area and have had asymptomatic mitral valve prolapse for years. In May of this year I went to a new internist as my old had retired. He listened to my heart and asked when I would be seeing my cardiologist. I said I went every other year, due in August for an ECHO. He said we could do the ECHO at his office and I wouldn't have to take off more time from work. Perhaps this was his polite way of saying I sounded bad! Anyway a week later I got a call saying he thought I should make an appointment with the cardiologist. The cardiologists office had me first bring by the tape of my ECHO. When he reviewed he called me in and said it may be time as guidelines had changed and though my heart had not enlarged, the volume of blood in my left atrium had doubled since 2000. He sent me to Dr. Douglas Murphy of Peachtree Cardiovascular, and who is the chief of cardiac surgery at St. Joseph's Hospital. If you will check Atlanta Magazine's top 100 Dr.'s he is listed as the best for mitral valve repair and the robotics procedure is his specialty. He teaches other doctors this procedure. St. Joseph's has two of the 60 or so DaVinci machines in the US. He said the best time to have this repair was before I had symptoms and that with my valve I would.

When I met with Dr. Murphy the first time he reviewed my ECHO and said he thought he could repair my valve even though both leaflets were large and floppy. He told me my valve probably was a congenital defect rather than having had rheumatic fever. He said that if he couldn't repair I would need a replacement valve, however he hoped he could repair and that I was a candidate for robotics. There were about 3 reasons why he may not have been able to do the robotics on me - one being I am 5'1" and weigh about 112 and I am small boned. He said that the connection to the heart lung machine may be too large for the groin area. However, this was not the case. I was terrified of course before surgery, and not knowing whether I'd have the robotics or whether I would be repaired or replaced was quite stressful. Dr. Murphy was able to perform the robotic mitral valve surgery. My incisions are under my right arm, next to my right breast. I have 2 small incisions near the breast one about an inch and half and one about two inches long with about an inch parting them and then I have what I call my 4 "stab wounds" - 2 near the incisions and one on the right breast just before the clevage area and toward the top area of the breast. I also have what I call my "vampire bites" on my neck where two catheters are placed to monitor the heart and where they also stop the heart. You can look at the peachtreecardiovascular.com website to see these types of incisions on men having had mitral valve repair. I will be happy to go into more detail with you if you wish to privately email me. My incisions were quite sore, and were uncomfortable for about 8 weeks. I immediately felt better after surgery, I did not know that my heart raced or fluttered without reason and that I really did not have that much energy. It has been about 13 weeks now and I feel terrific. I am up to walking either 3 miles a day or 30 minutes on the treadmill. I went back to work at 6 weeks and the first two weeks I worked half days, mainly because it wasn't great to wear a bra all day and I work with 12 men.

Dr. Murphy shortened the leaflets, shortened chordae and replaced some of them and added an annuloplasty ring. He tells me I will more than likely not need any more surgery for my mitral valve. I have no restrictions on my activities or any food restrictions. I am so glad I went ahead and had this done. I feel as though I have been given a new life! At 55, I can really say it's great to be alive!!!

PS I appologize for the length of this post, but I had not seen much about robotic mitral valve surgery on this forum and I guess I may have gotten a bit carried away.

 

[geebee]

Cindy,

Welcome. Thanks so much for joining and providing so much good information on robotics. I am very happy you were able to have a repair. Many of us are not so lucky.

I am sure your post will help many including Pat.

 

[Guest]

*raises eyebrow curiously*

Wait ... Pat, did I interpret your job description correctly ... do we have a TV personality in our midst?


Regardless....welcome to the club!


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"I'll be with you" ... Cheap Trick ... 'The Flame'

 

[Lynlw]

Pat, welcome first off since *I* am 45, you should have wrote I am very young ). I'm so glad your found this board, I know how hard it is to feel alone and not have others who understand. just having someone to bounce your questions off any time of the day or night is such a Blessing. I never had heart surgery, I am here because my son is 17 and just had his 4th OHS in May and got a pulm valve and a new conduit, he had to have his full sternum opened and was still cleared to go surfing at 6 weeks, if that help you at all. Also Justin couldn't believe how much better he has felt since his last surgery, the years before it he missed about 20 days of school, this year so far he only missed one and that was to go look at college.he didn't even realize HOW tired he was until now that he isn't tired.
I'll keep you in my thoughts and prayers, lyn
ps Cort, do you think maybe we can finally get someone to do a story on CHDs, the leading cause of birth defect related deaths after all these years of sending letters to everyone )

 

[Ross]

and a hospital (like CC) that has no trauma unit (no emergency surgeries) probably has fewer deaths on the books to skew the stats downward.

Umm I was very much an emergency surgery life flighted to CC from Canton in 95, so they do do emergency surgeries.

 

[Lynlw]

Ross, I could be wrong but I believe she is saying CC is not a trauma center so doesn't get the shooting, stabbing, car accidents which can lower some stats, Lyn

 

[Ross]

Ross, I could be wrong but I believe she is saying CC is not a trauma center so doesn't get the shooting, stabbing, car accidents which can lower some stats, Lyn

Ah me thinks your right. Didn't look at it that way, my bad.

 

[AtlantaPat]

Wow...

Wow...

Thanks so much to everyone for the welcome and the information. I can't tell you how glad I am to have found this site. Cindy, I'm sure I'll have some more questions for you, since your experience sounds a lot like the way mine may play out.

And to answer Cort's question... while I work at CNN, I'm no personality Just
another one of the little people pulling an oar belowdecks to keep the galley moving!

Let me say again how glad I am to be here...
Pat

 

[TomS]

Pat,
Since you are used to dealing with facts, my suggestion is that you research both the hospital and the surgeon.
I suggest that you look at the top heart hospitals, identify specific surgeons there with the lowest mortality rates and with the most experience with your specific problem as a first step. Ultimately it will need to be the person that you are most comfortable with. Success correlates to number of "your" operations done per year by your surgeon, not the school they attended or where they work.
You may want to put Cornell in NY on your list. I chose a surgeon there because he did 250 of my exact operations per year and had a 0.7% overall mortality rate with them.
Good luck.

 

[KristiinSD]

My surgeon is planning to repair

My surgeon is planning to repair

my mitral valve robotically. I have read several medical journal articles on the topic and it sounds great! Not only does it eliminate having your chest cracked open, the 3-d capabilities allow for better visualization of the heart while the instrumentation allows for more precise movements. I'm happy to be alive during such exciting times...and in a major metropolotin area where this surgery is offered.

My read is that in the next 5 years this will be the standard of care nationwide.

BTW, I'm 46 and my history sounds very similar to yours in terms of my heart problems.

Kristi
mr
surgery 11/29/05