2nd time around

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Daren

Well-known member
Joined
Apr 19, 2010
Messages
54
Location
Sacramento,Calif.
Hello everybody, I was told that this was the best place to post this so here goes. My name is Daren, 48 year old male, living in the Northern California foothills. On November 15th,2008 I had mitral valve surgery preformed at Mercy General Hospital in Sacramento. The surgeon, Allen Morris, had originally planed to preform it minimally invasive approach but after multiple attemts the retrograde cardioplegia line could not be placed. A full sternotomy was preformed and the valve repaired. Five days later I was relesed. My recovery didnt go real smooth, a-fib, pvc,ect.. and I just never felt well but sort of chalked it up to the trauma of surgery, stress or whatever. Four days ago I had an appointment with my cardiologist and he informed me that the last echo (11/09/2009) is showing a 3+ mitral regurgitation. It seems that im heading for another surgery but he wont say when. I am not real pleased about any of this but am trying to remain calm and in controll. Any and all opinions would be greatly valued as to how I should approach the next surgery and deal with the Doctors involved. Thanks.... Daren
 
Darren:

When I had my heart cath the day before my MVR, I was at 3+ regurge, with some congestive heart failure. That's probably why my recovery was slower than my husband's MV repair (thoracotomy) 4 years after my surgery. So I understand your feelings at facing a re-op and so soon after your first surgery, to boot.
Has your doctor ordered a TEE to get a better look? Have you gotten opinions from any surgeons yet?
 
I'm sorry your repair didn't last very long and (and the surgery didn't go that smoothly to start with) and can kind of understand how dissapointed it is to need another surgey MUCH sooner than you ever imagined. My son had his 4th OHS a pulm valve/conduit replacement in 05 and by the middle end of 06 we knew there was a problem and he had to have part of his conduit replaced in 07 (and then 10 days after that was readmitted and needed surgery for a sternal infection) we were sad, angry, disapointed, frustrated ect at various times. I'm not sure what you want to do as far as dealing with the doctors, If you want to use the same surgeon I would definiately ask how many redos he has done ect and might want to go else where if you think a different surgeon would have made a difference in your results. We went back to the same surgeon since he is one of the most experienced with complex cases and multiple surgeires and we spoke to quite a few before his 4th surgery and just chalked it up to things happen and Justin tends not to have the best luck when it comes to his heart issues. (and pray for the best) But if you don't have that same faith in your surgeon I would definately get other opinions. I really think trusting your surgeon and trusting you will do well with them helps alot with having a positive attitude going into surgery and can only help your recovery. You don't want to go someplace/to some doctor you have doubts about. BUT as alway this is just MY thoughts

PS I would also complain to a cardiologist that waited 6 months to give you your echo resluts if everything wasn't good, he should have called you and either told you on the phone or asked you to come in to go over your test results...
 
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All those surgical "issues" make me wonder how many of these procedures this surgeon has performed (and what were his outcomes?)

I typically urge patients to seek out a Surgeon who has LOTS of Experience doing the procedure they will need.
Not all surgeons are equal in experience or skill. Unfortunately, it often is left to the patient to assess the experience of their surgeon and to choose the one who is most qualified to perform the procedure they need.

As I stated in your earlier post, I would suggest getting an opinion from one of the surgeons at Stanford University Hospital in SF.

'AL C'
 
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Very sorry to hear this will be your 2nd time around. Hope the 2nd will be smoother.
I agree with AL about getting an option at Stanford University Hospital in SF.
 
Bina, Thanks for the welcome. I hope that your recovery and arrhymias issues are getting better. That stuff can really wear a person out and I hope that its backing off some. I am pretty new around here and have not had the time to discover everones problems yet. Marsha, my Cardio Doc mentioned a TEE when I saw him but has yet to set a date. I have sort have been in shell shock the last few days but deep down I knew things have not been right for quite some time. Have yet to speak to any other Surgeons as I am trying to get all the records. Lyn, I am so sorry to hear of your son,Justins, problems. I cannot imagine anyone having to go through 4 of these blasted things. One seems too much. Please know that I will pray for Justin and your family. I absolutely agree with the 6 month issue but fear that they knew long before that but for whatever reason thought it was best not to tell me sooner. On a personal note I will admit that it took every bit of self control I could muster to keep from putting his head through the wall when he finally did come clean. I have never been a violent man,so please dont get the wrong idea. Al, I think you are spot on about this. At this point I have zero faith in the crew I have been with. I will check out Stanford and some other places,Thank you . nngbwh, I wish to thank you also, and hope all is well with you. Thanks , Daren.... (ps please forgive all the spelling,grammar ect, have always been lousy at this stuff)
 
Your area of the US in one I know pretty well. I went to college out in that general area. I spent a year out there in 2002-2003 and got my yearly aneurysm check up at Stanford in 2002. Dr. Liang there was the first to see that I had a bicuspid aortic valve, so I was impressed. I know a number of people out there who have travelled from the Sacramento area to Stanford for their evaluations and, ultimately, for their heart surgeries. If I still lived out in your area I would take myself to Stanford (Dr. Craig, to be specific) for my future surgeries.
 
Daren said:
Bina, Thanks for the welcome. I hope that your recovery and arrhymias issues are getting better. That stuff can really wear a person out and I hope that its backing off some. I am pretty new around here and have not had the time to discover everones problems yet. Marsha, my Cardio Doc mentioned a TEE when I saw him but has yet to set a date. I have sort have been in shell shock the last few days but deep down I knew things have not been right for quite some time. Have yet to speak to any other Surgeons as I am trying to get all the records. Lyn, I am so sorry to hear of your son,Justins, problems. I cannot imagine anyone having to go through 4 of these blasted things. One seems too much. Please know that I will pray for Justin and your family. I absolutely agree with the 6 month issue but fear that they knew long before that but for whatever reason thought it was best not to tell me sooner. On a personal note I will admit that it took every bit of self control I could muster to keep from putting his head through the wall when he finally did come clean. I have never been a violent man,so please dont get the wrong idea. Al, I think you are spot on about this. At this point I have zero faith in the crew I have been with. I will check out Stanford and some other places,Thank you . nngbwh, I wish to thank you also, and hope all is well with you. Thanks , Daren.... (ps please forgive all the spelling,grammar ect, have always been lousy at this stuff)
Click to expand...

Thanks for the prayers there are really appreciated, actually yesterday was the 22 anniversary of his 1st OHS when he was just 10 days old and I was telling a friend I'm glad I didn't realize I would be handing him over for heart surgery 6 more times before he was 20, or I might have been overwhemed at the thought. Right now he has a MRI cominig up that we are nervous about a couple things, but luckily Justin has an amazing attitude and it spreads to the rest of us.
I think you definately need to get opinions from several other surgeons , it seems like your whole "team" is not treating you how I would expected to be treated by by my or my families medical staff.( some seem to forget THEY work for YOU) I agree your cardiologist had to know shortly after your echo there was a problem, I would be very angry if my doctors sat on important info like that for months and didn't tell you. Communication is very important to me. Speaking of good communication, I don't know California at all and how close or far to different Centers you are, but I do know a couple poeple who traveled across the country to go to Stanford, and when they were home again both them and their doctors were VERY frustrated, especially in cases that didn't go as well as expected, because they could not get any answers from Stanford. Their local doctors couldn't even get the Stanford docs to return ther phone calls after numerous tries and in one case their "local" doctors weren't some some little place, but actually Cleveland Clinic. THEY had alot of problems making a plan for how to take care of the patient because they couldn't get anyone to return their calls. IF it only happened to 1 family I would think it was a fluke and I know many people have great experienes, but I know a couple families who on top of dealing with the normal issues with having your child have heart surgery, had the added stress of not being able to get information. As I said, I know Stanford has very good surgeons and many people have no problems and wouldn't think of going anywhere else and I am sure communication can be a problem in any big center, but from my years of being on online support groups, that would be my 1 concern about traveling to go there. IF you are close enough that they would be your main doctors than that wouldn't be as much of a concern.
 
It's too bad you have to start thinking about going back in. A repair can be a great thing, if it lasts a while.

As far as second surgeries, they're as much of a crapshoot as first surgeries. Some people had more trouble with the first, some with the second or later. Both my first and second surgeries went smoothly, and I was out in three days both times. In some ways the second surgery was easier, because I knew what to expect, and was able to move through it with more certainty. However, one experience doesn't at all guarantee another.

I think in susequent surgeries it's even more important not to wait too long and let the heart get into too bad a condition first. That is a temptation - to wait longer and avoid the surgery longer - on both the doctors' and patients' sides.

Best wishes,
 
Hi Daren,
I had something similar happen to me, had a MV repair in Jan. 07, was supposed to be min. invasive but was quite invasive and traumatic.. the repair didn't hold, who knows if it even held a week. A few months later found out I needed surgery again, so in Aug. 07 had a MV replacement with a mechanical. It was really rough but doing great now.. One lesson I learned, and Al mentioned, is to make sure your surgeon has done a LOT of whatever procedure they are going to perform on you. Ask lots of questions! I went for a few other opinions before my second. Sorry you are going to have to go through this again, in a way it's harder the second time b/c you know what to expect, although my second OHS was not as difficult as the first, at least not physically. The good thing is that this time you will get it fixed and you will be able to get on with life feeling so much better! Best of luck to you.
 
Hi Daren, I am sorry to hear about your situation. It must be very frightening to have to go through another surgery. My son will be having his first soon and I am not sure if it will be a repair or replacement yet. Just wondering, when everyone says find a doc who has done alot of procedures-how many are you looking for? I would just like a ball park figure. I will be talking to four surgeons and asking them for their stats, so I would just like to know how many to look for. Thanks, Barb
 
BarbJean said:
Hi Daren, I am sorry to hear about your situation. It must be very frightening to have to go through another surgery. My son will be having his first soon and I am not sure if it will be a repair or replacement yet. Just wondering, when everyone says find a doc who has done alot of procedures-how many are you looking for? I would just like a ball park figure. I will be talking to four surgeons and asking them for their stats, so I would just like to know how many to look for. Thanks, Barb
Click to expand...

That's a Very Good Question Barb. Unfortunately, there isn't a clear and definitive answer since it will depend on What Procedure(s) you are considering.

I've forgotten the number of OHS's that are performed per year but believe it to be over 100,000.

90% of OHS are Coronary Artery ByPass Grafts (CABG) a.k.a. "ByPass Surgery" which almost all Heart Surgeons perform.
There are Many Regional Heart Surgery Centers that do an excellent job of performing these compartively low complexity surgeries. Some of these surgeons also do basic first time valve replacements (typically in Low Numbers <100 per year)

Dr. Paul Stelzer in NY is the most prolific Ross Precedure Surgeon (very complex surgery) with a career total now over 400.

For 'routine' Valve Replacement, I would want someone who does at least 100 per year, maybe more.

I don't have a good feel for a number of more complex surgeries such as BAV, especially BAV with Connective Tissue Disorders and / or Aneurisms and Surgery of the Aorta (another Complex Surgery).

I suspect that most Complex Surgeries are performed at Major Heart Centers, often affiliated with Universities or Major Clinics (e.g. Cleveland, Mayo, etc.)

Bottom Line: Ask the Surgeon(s) you interview about how many similar surgeries he has performed (lifetime and last 12 months) and his results. If the number 'feels low', I would probably look for another surgeon unless you are looking at a very rare procedure (e.g. Surgery on Radiation Damaged Hearts).

Surgeons who regularly perform 'Re-Do's' become skilled dealing with Scar Tissue and are typically a 'cut above' surgeons who concentrate on First Timers.

Hope this helps to give you some perspective.
It would be interesting to hear other thoughts / opinions / perspectives on this issue.

EDIT - After reading your profile, I see that your son has Marfan's Syndrome and Aortic Valve Issues.
I would consider Aortic Valve Replair to be a 'complex' surgery (Mitral Valve Repairs are more common...and more successful). Marfan's puts him in the "Rare Condition" category. You will definitely want to look for experienced surgeons at Major Heart Hospitals. You could call some of the Majors* and tell them you are looking for CardioThoracic Surgeons with experience treating Marfan's patients. *e.g. Cleveland Clinic, Mayo Clinic,
Brigham and Womens (Boston), Mass. Gen. Hosp. (Boston), Texas Heart Institute (Houston). Unfortunately, I'm not very familiar with the better NY Hospitals.

'AL Capshaw'
 
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Daren,

Sorry, you are going through this again so soon. My thoughts and prayers are with you. Like some have said, it is possible the 2nd OHS
may not be as difficult as the second. I know it is difficult, but try to remain strong!
 
So sorry you are facing yet another surgery! That's terrible! But unfortunately, it does happen to some of us! I pray that all goes well with your 2nd & that you never, ever have to face the knife again! Stay strong & focused on what needs to be done.
 
Daren, I add my welcome, condolences on the rocky road to recovery and I am angry with you at your &$!)*# Doctor who withheld vital information from you. I agree with those who say go to Stanford, don't waste any more time with what appears to be a marginally competent and at least definitely non-communicator Doctor. Good luck and keep us posted!
 
Yikes, so glad I just read what Lynlw said, that puts Stanford in a less than favorable light, dang! I am referring to the 'but I do know a couple poeple who traveled across the country to go to Stanford, and when they were home again both them and their doctors were VERY frustrated, especially in cases that didn't go as well as expected, because they could not get any answers from Stanford. Their local doctors couldn't even get the Stanford docs to return ther phone calls after numerous tries and in one case their "local" doctors weren't some some little place, but actually Cleveland Clinic.'
 
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