Another Surgery?!!

[Eric]

Yeah, Eric, I've heard of something like it. Check out my signature below. I had the opposite of your situation -- my first surgeon replaced my valve, but didn't repair my aneurysm. He thought he repaired it, but he didn't do it effectively. This happens. You just count yourself lucky if you survive the redo. A lot of people simply die, and no one ever knows what went wrong. Since you live in Los Angeles, I recommend you consult Dr. Sharo Raissi at Cedars-Sinai. He is a renowned thoracic aortic expert. You, like myself, are a living example of the fact that BAV is not something that just any heart surgeon can operate on skillfully. It takes a lot of supervised experience, specifically on BAV or Marfan's, to know what needs to be cut out and what can be safely left in. Only surgeons who specialize in the aorta have an opportunity to get enough experience with BAV to make those kinds of decisions accurately. I went to a nationally renowned expert myself for the redo, otherwise I probably wouldn't be here to post this reply now. Sorry you are in this situation. But you are not the only one. I also suggest you consult the websites for the Cedars Sinai thoracic aortic surgery program and the Bicuspid Aortic Foundation to start learning more about BAV and what to look for in a surgeon. For my first surgery, I accepted a referral from my cardiologist. For the redo, I picked my own surgeon, and that's what I recommend you do. This is a very, very specialized problem that you have, and you need expert care. Good luck, and God bless.

Rachel, So you know what I'm talking about. Sorry you had to go through so much. As you may have surmised from my recent posts, Dr. Raissi is my surgeon and I have a very good relationship with him; however, he made the call not to replace the valve at the time and I guess hindsight is 20/20 but...anyway, I have a meeting with him on Wednesday to discuss my next step.

I'll keep you posted. Thanks for your insight.

Did Raissi do your redo?

 

[Eric]

Hi Rob

I'm so sorry to hear of your experience. I'd be jolly angry if I were in your boots. My experience is different, but I still ended up feeling the same way as you feel right now.

I had my original Coarctation of Aorta repair at age 17. That was fine until I hit 30 years of age. I was very breathless, chestpain and generally very unwell. The cardio did a cardiac catheter and found my bicuspid aoric valve was severe moderate regurgitant and that I had a 5.5cm ascending aortic aneurysm. Furthermore I had a 6cm aneurysm in my thoracic descending aorta at the site of my original repair. They decided to operate. So I had open-heart surgery, during which they replaced my aortic valve and ascending aorta with a 27mm CarboMedics aortic valve and dacron tube graft. The surgeon hadn't dealt with the second aneurysm and more threatening aneurysm. I was told I didn't need to worry about it and that they would monitor once a year.

A month after the operation I became so concerned about the other aneurysm as I had this gut feeling they were lying to me. I stumbled across a Canadian website (www.cachnet.org) and found some information. I emailed the webmaster, who is an international cardiologist. He told me I urgently needed a second opinion with a Congenital Heart Cardiologist and recommended someone here in London. I was seen and an MRI scan performed. I had to have emergency open-heart surgery. Had I not got that second opinion and had the surgery I was told I wouldn't be here today.

I can't describe my anger and upset towards my previous cardiologist and cardiac surgeon. I was raging and it's taken me years to get over it, well I'm not really over it. The legal system here in the UK is an ass and they told me outright that I would never beat them.

I'm telling you all this to let you know that I understand how you must be feeling.QUOTE]

Jon,
You're a lucky man. Good thing you did your own research. I'm so pissed (the American kind not the British kind!) but I'm also scared and depressed and with all the drugs that I'm on I don't have the energy to act it out. Anyway, thanks for understanding my anger but I just have to deal with it.

 

[PJmomrunner]

I agree that I would rather increase my meds rather than have another surgery but I'm knocked out as it is - always dizzy, spacey and lightheaded.

Hey Eric, FWIW, I take Toprol XL, which is not the same drug as Atenolol but, as a beta blocker, I assume has a similar effect. The "XL" part of the name denotes its extended release formula. Shortly after my dosage was upped to 50mg two times a day my prescription-filling company (Caremark) started sending me 100mg tablets with instructions to split the pills. Well...that last for three days of "dizzy, spacey and lightheaded" before I stopped splitting them (on a nurse friend's advice) and just started taking them whole--100mg once a day. Voila! No more psycho-side-effects! Anyway, ask Raissi if he can put you on an extended-release version of your meds so your serum levels of the drugs is more constant. Perhaps they'd be more tolerable.

 

[Randy & Robyn]

The second surgery was emotionally very straining but physically no worse than the first. I was again out of the hospital in four days and walking around an entire mall the fifth.

The only drugs I'm on are a low dose of atenolol to keep my heart rate down temporarily and coumadin, which has not been a problem so far. I've had no bruises yet despite some pretty good whacks and minor cuts bleed no more than before.

I get the impression you want to avoid coumadin for your own reasons and a tissue valve should still be an option for you if that is the case. They would have done the same for me but I didn't want a third surgery looming. To each their own.

One other bit of good news I can give you. Scar tissue takes years to build up. Since you are only a few months out from your first surgery there won't be a great deal of it yet. Reops are known for being much longer because of the scar tissue they have to cut through but, in you case, it shouldn't be that bad.

It's very important to focus on the positives and everything you still have going for you at this point. The most difficult aspect for me was getting over the "Why me?" attitude. If you find you definitely need another surgery, get a reputable surgeon that you trust, set another date, and get it over with. A few weeks later your life will be back on track.

Randy

Randy, How was that second surgery for you? What kind of drugs are you on (the legal ones? Thanks for the encouragement, buddy.

 

[Eric]

Randy

How did you make the decision to go with a mech? I don't want a third...or for that matter a fourth surgery but I'm not ready to change my lifestyle either. Each has got to put a strain on your heart and body. What have you found to be the pros and cons of the tissue vs. mech valve? I'm meetng with my cardio today to discuss things.

The second surgery was emotionally very straining but physically no worse than the first. I was again out of the hospital in four days and walking around an entire mall the fifth.

The only drugs I'm on are a low dose of atenolol to keep my heart rate down temporarily and coumadin, which has not been a problem so far. I've had no bruises yet despite some pretty good whacks and minor cuts bleed no more than before.

I get the impression you want to avoid coumadin for your own reasons and a tissue valve should still be an option for you if that is the case. They would have done the same for me but I didn't want a third surgery looming. To each their own.

One other bit of good news I can give you. Scar tissue takes years to build up. Since you are only a few months out from your first surgery there won't be a great deal of it yet. Reops are known for being much longer because of the scar tissue they have to cut through but, in you case, it shouldn't be that bad.

It's very important to focus on the positives and everything you still have going for you at this point. The most difficult aspect for me was getting over the "Why me?" attitude. If you find you definitely need another surgery, get a reputable surgeon that you trust, set another date, and get it over with. A few weeks later your life will be back on track.

Randy

 

[Eric]

Rachel,

No doubt that I'd have Raissi do the reop. Everyone is just real surprised how/why the valve, which looked so good just 6 months ago, started leaking so much. I still trust him but resent the fact that he made a bad call, putting me in this position. I hope I come out of it with your attitude - thankul and feeling great on a low dose of meds.

Eric,

I wasn't aware Raissi did your first operation, but if he made the call regarding the valve, there's no one who would have been in a better position to do it. The remarks I made about experience, he's one of a handful guys who have the experience. I guess the dice just didn't roll your way, and I'm sorry. Raissi didn't do my reop, but he's one of just a few people who, if I were to have a less-than-optimal outcome the first time around, I would probably let him be the one to try again. In most cases, I think that if the first guy didn't get it right, let somebody else try, but with Raissi, you have one of the most experienced thoracic aortic surgeons on the planet. Your operation sounds like it was one of those situations when the coach goes for a two-point conversion to win the game, rather than a one-point conversion to tie, and it just didn't go your way. The coach is still a good coach.

No, Raissi didn't do my reop, but only because I was too sick to travel that far at the time. Dr. Raissi was my first choice, because it was somone close to him who convinced me that I needed an expert, so it would have been a natural decision at that point to go to him. But I was very sick, Houston was a short plane hop away, and I went to Dr. Joseph Coselli. He's another one of the top guys for this kind of operation, and he did a good job. I'm doing better than I ever thought I would, and I'm very lucky.

 

[Randy & Robyn]

Eric,

I had made the decision before my first surgery that I was willing to accept the risk of having two open heart surgeries in my life. That was why I chose a tissue valve as my backup if my valve could not be repaired. I wanted to avoid dealing with coumadin for as long as possible.

Two weeks after my first surgery, they heard a murmur, did an echo and told me I was headed for surgery again. I already knew I would go mechanical at that point. We "youngsters" who have taken care of ourselves tend to handle OHS well and recover quickly. Add ten or twenty years and factor in the scar tissue from two previous surgeries and we could be looking at a very different outcome.

As for pros and cons, I was very worried about how much the ticking would bother me. And, of course, I was terrified of coumadin despite all of the reassurance I received here on the forum.

Thankfully, I seldom hear the ticking and when I do it doesn't bother me at all. The coumadin, so far, has been a non-issue. I've had numerous issues with the lab testing but home testing will solve those problems.

Right now, I feel great, I feel "normal", and I have the potential to live a long, healthy life without another surgery.

If you do decide to go mechanical, talk with your surgeon about the On-X. My surgeon did some research on it after I mentioned it to him and was very impressed with it.

Randy

Randy

How did you make the decision to go with a mech? I don't want a third...or for that matter a fourth surgery but I'm not ready to change my lifestyle either. Each has got to put a strain on your heart and body. What have you found to be the pros and cons of the tissue vs. mech valve? I'm meetng with my cardio today to discuss things.

 

[aussigal]

Hi Eric...

I wish you all the very-best with your decision and discussions in the coming days and weeks...it cant be easy when you thought you had put this all away for a good few years yet...

In 6 days I will be having my OP...and although I am no athlete I am the same age as you. I will be getting my valve replaced (even though it still appears OK) at the same time as my dodgy 4.8 aneurysm and am going for the St Judes mechanical. I am at practically the identical cardiac-health-level you were 6 months ago...I am very worried about my annie-dissecting rather than my valve failing. You show me that even when the expert of experts makes the pick it can go wrong...I am happy with my choice to "go-early" on the valve even though I was originally advised to wait a bit longer...

may God Bless you and guide you in the coming weeks...

youre allowed to be pissed-off at all this but I am sure you will get over the anger and move on to productive thoughts

healing thoughts
ton

 

[Eric]

Hey Ton,

Thanks for your thoughts. As you said, even the guys who are supposed to be the experts sometimes make the wrong calls. My aneurism was 4.8 when I had it fixed and they should have also done the valve...as it turns out. Raissi thinks I should go for a bovine because he thinks technology will be at the point - in 10 yeras or so - where they will be doing tissue valve surgeries through an artery. Have you studied this?

Anyway, you are going through a similar surgery that I went through and I expect that you will recover as fast as I. I will be thinking of you and sending positive thoughts your way. Just go to sleep and let them do all the work...you'll wake up sore and uncomfortable and in a few days you'll be surprised how well and fast you are recovering and progressing.

Good Luck!

Hi Eric...

I wish you all the very-best with your decision and discussions in the coming days and weeks...it cant be easy when you thought you had put this all away for a good few years yet...

In 6 days I will be having my OP...and although I am no athlete I am the same age as you. I will be getting my valve replaced (even though it still appears OK) at the same time as my dodgy 4.8 aneurysm and am going for the St Judes mechanical. I am at practically the identical cardiac-health-level you were 6 months ago...I am very worried about my annie-dissecting rather than my valve failing. You show me that even when the expert of experts makes the pick it can go wrong...I am happy with my choice to "go-early" on the valve even though I was originally advised to wait a bit longer...

may God Bless you and guide you in the coming weeks...

youre allowed to be pissed-off at all this but I am sure you will get over the anger and move on to productive thoughts

healing thoughts
ton

 

[Eric]

Rachel,

I don't blame you for going mech after 2 surgeries in 13 months. Raissi recommends that I go with a bovine because he thinks that in 10 years or so replacing valves through an artery will be to the point where it is no longer "experimental" but standard. Have you checked into this? I definitely don't want a third surgery!

You didn't aske me, Eric, but I decided to go mechanical for the redo simply because, after two AVR's in 13 months, I was in no mood to consider a third, ever. Anyway, I had always planned to go mechanical on the second operation. The tissue valve the first time around was just a way of buying some coumadin-free years (I thought). I didn't ever want to have three open-heart operations. The first valve just didn't turn out to last as long as I expected. Interestingly, both surgeons I interviewed for the redo seemed willing to implant a second tissue valve, had I wanted it, which kind of surprised me at my age (50 at the time). It turned out to be really good that I did get a mechanical valve for the reop, because I turned out to be heparin-antibody positive, presumably from the massive infusion of heparin during the first surgery. I am very allergic, so I guess it's not surprising that I would form antibodies to whatever. But it makes a third surgery much more risky than a third OHS would normally be. So I'm happy with my mechanical valve, because I'm not really a candidate for that third operation now.

 

[Eric]

Randy,

You make a lot of sense and I tend to think the same way. I don't want another OHS. Dr. Raissi is convinced that the technology is there - and it will be perfected - within 10 years - to replace valves through an artery rather than by OHS. What has your research uncovered regarding this?

Eric,

I had made the decision before my first surgery that I was willing to accept the risk of having two open heart surgeries in my life. That was why I chose a tissue valve as my backup if my valve could not be repaired. I wanted to avoid dealing with coumadin for as long as possible.

Two weeks after my first surgery, they heard a murmur, did an echo and told me I was headed for surgery again. I already knew I would go mechanical at that point. We "youngsters" who have taken care of ourselves tend to handle OHS well and recover quickly. Add ten or twenty years and factor in the scar tissue from two previous surgeries and we could be looking at a very different outcome.

As for pros and cons, I was very worried about how much the ticking would bother me. And, of course, I was terrified of coumadin despite all of the reassurance I received here on the forum.

Thankfully, I seldom hear the ticking and when I do it doesn't bother me at all. The coumadin, so far, has been a non-issue. I've had numerous issues with the lab testing but home testing will solve those problems.

Right now, I feel great, I feel "normal", and I have the potential to live a long, healthy life without another surgery.

If you do decide to go mechanical, talk with your surgeon about the On-X. My surgeon did some research on it after I mentioned it to him and was very impressed with it.

Randy

 

[aussigal]

Thanks for the kind wishes Eric...

Yeah I did play with the idea of going tissue for a little while...I didnt do much research though as I trust my Cardio and Surgeon ( you have to dont you ) and this is what they offered me...I didnt even get offered the tissue I had to ask about it. I am slightly envious that you have the very highly regarded Dr Rassai. I would trust him to take another shot-at-it too...Arlys always speaks so highly of him and his team but a trip to the US for an AVR isnt an option for me...

BUT....
I really want to try avoid this again...once is really enough for me. I decided I could cope with a life on warfarin easier than the prospect of another AVR.
The Aussies are really slow at taking on the new advances and approving them for us...
I am hoping though by the time any of our 3 boys need this that the AVR's will be commonplace through the artery...but we will cross that bridge when we get to it...I for now was not prepared to put myself in definate need for another AVR...

all the best Eric...I will be following your progress...
God Bless

 

[Randy & Robyn]

Eric,

The only absolute guarantee is that technology will advance but the question is how fast. Fifty years from now it's almost a certainty that open heart valve surgery will be defunct, at least in its present form. But will catheter-based replacement become mainstream in ten years? That would be much harder to predict. I believe it holds great promise but the technique is still in its infancy.

There is still much improvement to be made before those percutaneous valves can stand up to the pressures that an active, athletic person could subject them to. In ten years there will be no definitive answers concerning durability because only the test of time can resolve that.

Unfortunately, like most decisions involving valve replacement, we have to make an educated guess and go with our gut feeling. Your surgeon believes it will happen. However, I am sure he also firmly believed that your native valve would hold up much better than it has. He's only human, just like the rest of us.

Good luck with your decision, Eric. I wish there was an easy answer for you.

Randy

Randy,

You make a lot of sense and I tend to think the same way. I don't want another OHS. Dr. Raissi is convinced that the technology is there - and it will be perfected - within 10 years - to replace valves through an artery rather than by OHS. What has your research uncovered regarding this?

 

[Karlynn]

Eric,
We had a discussion a few months ago that was a bit confusing because it started out as someone saying that if you got a tissue valve you may never require surgery again. What the member was saying was that the valve could be replaced via catheter, and so wasn't considered surgery. Some of us disagreed with this because we thought it made it sound just a bit too simple. One of our members wrote "As a surgeon, I can comfortably say that valve replacement via catheter is MAJOR surgery. The size of the incision does not define the severity and seriousness of the surgery."

There will still be risks involved with catheter replacement. Some of the issues that make repeat OHS's a problem could also be the case with catheter replacements, scar tissue being one of them. I would imagine that there will be some people that they attempt a catheter replacement on, but end up having to open them up. This occurs today when people go in for angioplasty and end up having to be opened up for a bypass because the angioplasty attempt was unsuccessful. As far as I know, angioplasties are all done with preparations in place to do a bypass if needed. I would guess that similar arrangements will need to be in place for catheter replacements of valves.

I'm not writing this to talk you out of tissue. I recall all your activities and you do sound like someone who would possibly be better served with a tissue valve if you are able to continue all your prior activities. I just want you to be aware of some of the issues that will be involved with catheter replacements.

Best wishes.

 

[dbuenting]

Keep your faith

Keep your faith

Eric,

I know this is a tough road you have to travel, but please don't loose faith in Dr. Raissi - we both know he is the best. He could not have known your valve would do this so soon.

You were an inspiration to me and my family when I had my surgery in October. It is very disturbing to us that you are facing this so soon.

I too have a problem with being tired all the time and still have muscle pains, though I am trying to stay active and walk 45 minutes 5 days a week.
Maybe this is normal for our post op lifestyle? The surgery, plus the surplus of meds together surely take a toll.

My only regret personally is that Dr. Raissi is not nearby to rely on. While he is only a phone call away - I must rely on doctors here for most of my post-op advise. I never have the confidence in them that I do in Raissi.

I am so thankful that he is near to you and know that you are in good hands - hands that surely are guided by a greater power!

Debbie

 

[BAV Pt's daughter]

Raissi thinks I should go for a bovine because he thinks technology will be at the point - in 10 yeras or so - where they will be doing tissue valve surgeries through an artery. Have you studied this?

Eric,
This is also what Raissi preached about to mom and I... hopefully, according to him, by the time her valve needs any work, they will do it via the groin, like they do heart caths now. He has little doubt in this and was very informative and optimistic in my conversation with him when we were deciding about mom's valve. She's not nearly as active as you, but still a mechanical was not the best option for her.
Keep me posted, sweetie.

 

[jayaresq]

Hey Eric

Hey Eric

Long time no speak. I am now 9 months post-AVR and have been away from this site for several months. However, after referring an old friend now facing AVR to vr.com, I checked in last night. To the many among you who guided me through my own ordeal last summer, thank you again and my sincere best wishes for continued health and happiness.

Eric -- I was sorry to read of your recent complications. I know you are very active and that you recovered from your Sept. OHS at what seemed like light speed. If you need to go back for more, I'm sure your body will again rise to the challenge.

Since you may be still investigating your valve options, please take the time to do your research all over again. Technology seems to be moving as fast as you do. The Trib's article is intriguing and the On-X valve continues to gain in popularity. The friend I just referred here (42, F, Chicago) was citing new study numbers about porcine valves that I hadn't heard last summer. Moreover, one of my attorneys was at Cedars yesterday and a surgical/diagnostic tech told him that Cedars still favors the St. Jude's mechanical and Carpentier-Edwards tissue valves and anticipates a dramatic shift toward catheter-driven valve replacement surgeries in the next few years. He also heard that there had been a shake-up at UCLA (Dr. Lachs, who touted the On-X). I haven't followed up, so you should confirm, if interested.

Of course, if you need anything, please call me directly. I suppose I still owe you the sandwich you missed by bouncing out of Cedars so impressively the last time. Take care,

Jim

 

[Janea]

So sorry to hear about the bad news

So sorry to hear about the bad news

I feel sick for you. That is absolutely crappy! Wishing you some better news soon!

 

[Karlynn]

Jim, so nice to hear from you! How's your little girl? If I remember correctly she got quick a kick out of being Daddy's nurse.

 

[jayaresq]

Hi Karlynn!!

Hi Karlynn!!

How sweet you are for remembering my little Amanda!! She is as terrific as always (thank you), but the nurse costume comes out only rarely now. She's going through a Sleeping Beauty phase.

I have fond memories of your encouragement and support for my family last summer and hope life has been good for you since our last posts. Best always, Jim