Mitral Valve Replacement in Austin, Texas!!! Your comments/experience please!

[Zoltania]

I had the equivalent of option 2, mitral valve repair through a port incision. It was still very major surgery even though my sternum remained intact. I was on the bypass machine for nearly three hours. I felt extremely weak at the beginning of my recovery and it took several months for my energy levels to return to normal.

I don't know anything about nerve "freezing" near the incision. My incision was fairly painful until it healed. For several weeks I couldn't sleep on my right side, and it hurt to pull a bedsheet over myself with my right arm or to do chores that involved pulling with my right arm. My surgeon told me that younger people experience more pain after surgery, though I don't know where my age at the time, 53, fits on the youth scale.

Nevertheless, I'm glad I had the port incision and didn't have to worry about my sternum, and I feel 100% fine today. I wouldn't even know I had had the surgery unless I looked for the scar, which is pretty well hidden (no tawdry T-shirt photos for me!).

 

[vitdoc]

Interesting story. You did not go into much detail about the mitral valve problem but it sounds like your problem is probably mitral insufficiency or a leaky mitral valve. I was faced with a very similar problem 4 years ago.
I had a bicuspid aortic valve replaced 1977 and again in 1983 until an aortic aneurysm showed up in 2006 (6.5 cm). Repaired with mechanical aortic valve and conduit. I was followed for moderate mitral insufficiency until 2016 when I had a fairly sudden decompensation and went into heart failure. Prior to that I was bicycling 100 miles per week.
So something had to be done to the mitral. Having had three previous open hearts made me a less then desirable surgical candidate due to the extensive scarring. I was in touch with people around the country and frankly nobody was real excited about my prognosis. I spoke with Dr. Sabil Kar who at that time was at Ceders Sinai in Los Angeles. He had the greatest experience with mitral clips in the US at that time. He thought I would be a good candidate.
Despite that I decided to have valve surgery. I thought functionally I might be better off. I was literally nearly getting on the plane for the surgery when I got a call from the surgeon suggesting I consider the clip.
So two days later Dr. Kar did the clip procedure with two clips. Magically my EF went from 45% to 55% I was out of failure back on the bike.
Overnight in the hospital with minimal issues. The clip procedure has actually been around for I believe at least 10 years. Initially it was as is TAVR for people who might not do well with surgery. Now it is being used more for less sick patients. It does require a fair amount of skill to perform. So finding a place that has done many of these is important. But it was the best thing that ever happened to me since I really did not like any of my open hearts. Also if the procedure at some point fails you can still have surgery.
I live south of Los Angeles and in my local community mitral clips are being done fairly frequently. You can check in Houston with Texas Heart/Baylor if they have a robust clip program. I had mine at age 68. Going riding this morning soon to be 72. Also I am a physician and still working. Good luck.

 

[sylviayasgur]

Hi ShezaGirlie and all old timers, good to see you back(?).
Joey had his Ross Procedure in 2001 and had his AVR replaced Jan 2018, along with a MV repair (ring). Dr. Stelzer who did his original RP did this surgery as well. His thinking was : lets use bovine for AVR (Joey is 67) and hope it lasts another 10-12 years at which point it can be taken care of using TAVR (although a great solution, will hopefully be perfected by then). Mitral ring/repair will hopefully last long.
My dad (who died last year CHF) had a mechanical valve, had mitral repair (ring) and we consulted with mitraclip surgeons in NYC (he was not a candidate because his flaps were too far apart to be clipped together due to enlargement of heart). Mitraclip is a great alternative and there have been many successes with it. Not sure of how long it lasts (vs. mitral repair/ring) as it is quite new.
I hate to say this once again, but you have choices_ a good thing.
I'm sure others will chime in and give their helpful opinions.
Good to see you back. Hope this helps at all. This too shall pass and you will come out of it feeling so much stronger and better. Remember, the anticipation, waiting is always hard.
Be well,
sylvia

 

[ShezaGirlie]

I had the equivalent of option 2, mitral valve repair through a port incision. It was still very major surgery even though my sternum remained intact. I was on the bypass machine for nearly three hours. I felt extremely weak at the beginning of my recovery and it took several months for my energy levels to return to normal.

I don't know anything about nerve "freezing" near the incision. My incision was fairly painful until it healed. For several weeks I couldn't sleep on my right side, and it hurt to pull a bedsheet over myself with my right arm or to do chores that involved pulling with my right arm. My surgeon told me that younger people experience more pain after surgery, though I don't know where my age at the time, 53, fits on the youth scale.

Nevertheless, I'm glad I had the port incision and didn't have to worry about my sternum, and I feel 100% fine today. I wouldn't even know I had had the surgery unless I looked for the scar, which is pretty well hidden (no tawdry T-shirt photos for me!).

Thank you, thank you, thank you for taking the time to share your experience. I do remember my AVR in 1999 and yes, I do remember the pain and I think that’s a big issue with my decision. However; with pain management improvements in the last 20 years, surely it won’t be as severe. Also, at 53 yrs of age you are in the prime of life and have a bright heart future ahead of you. At my age, 76 - it’s sure different.

 

[ShezaGirlie]

Interesting story. You did not go into much detail about the mitral valve problem but it sounds like your problem is probably mitral insufficiency or a leaky mitral valve. I was faced with a very similar problem 4 years ago.
I had a bicuspid aortic valve replaced 1977 and again in 1983 until an aortic aneurysm showed up in 2006 (6.5 cm). Repaired with mechanical aortic valve and conduit. I was followed for moderate mitral insufficiency until 2016 when I had a fairly sudden decompensation and went into heart failure. Prior to that I was bicycling 100 miles per week.
So something had to be done to the mitral. Having had three previous open hearts made me a less then desirable surgical candidate due to the extensive scarring. I was in touch with people around the country and frankly nobody was real excited about my prognosis. I spoke with Dr. Sabil Kar who at that time was at Ceders Sinai in Los Angeles. He had the greatest experience with mitral clips in the US at that time. He thought I would be a good candidate.
Despite that I decided to have valve surgery. I thought functionally I might be better off. I was literally nearly getting on the plane for the surgery when I got a call from the surgeon suggesting I consider the clip.
So two days later Dr. Kar did the clip procedure with two clips. Magically my EF went from 45% to 55% I was out of failure back on the bike.
Overnight in the hospital with minimal issues. The clip procedure has actually been around for I believe at least 10 years. Initially it was as is TAVR for people who might not do well with surgery. Now it is being used more for less sick patients. It does require a fair amount of skill to perform. So finding a place that has done many of these is important. But it was the best thing that ever happened to me since I really did not like any of my open hearts. Also if the procedure at some point fails you can still have surgery.
I live south of Los Angeles and in my local community mitral clips are being done fairly frequently. You can check in Houston with Texas Heart/Baylor if they have a robust clip program. I had mine at age 68. Going riding this morning soon to be 72. Also I am a physician and still working. Good luck.

Yes, my mitral regurgitation is now severe; therefore the reason for surgery. As we think about it, we came to the conclusion it has been surfacing so slowly that we didn’t realize it could be my valve. An echo 2 yrs ago had “changed”, but my cardio didn’t think it was an issue, so I didn’t even think about it. My AVR w/St Jude mechanical was in 1999 at age 55 and I’ve had no problems with warfarin and felt fine. One of the surgeons I met with this week said they reserve the mitraclip for folks who are up in age. He came from a surgery on a 92 yr old woman to see me. My AVR was done at age 55 and I’m now 76 and needing the mitral fixed or replaced. I felt one surgeon (there were 4 in the consultation) leaned heavily into replacing both my valves with bovine valves because if one went south later, I would be a candidate for another bio prosthetic by artery which is a much easier surgery especially on a very elderly patient. I have no other heart or major organ issues...clear arteries, good heart muscle, etc. One of the other surgeons specializes in the mitraclip and performed two surgeries earlier in the day. I really went in thinking this is going to be rather simple and I wanted the clip, but alas all the other issues came up. So, here I sit - torn between two lovers feeling like a fool as I’m trying to come to a final decision. Option #1 tells me to not mess with a 20 yr old valve which is fine, Option #2 tells me a repair is valid for my mitral valve, Option #3 tells me don’t take the chance because my valve is one good for a repair and hopefully would last another 15 or so years. I’m just not interested in living to 96 like my Mother because there wasn’t much quality of life after age 92. Sorry for such ramblings and do thank you loads for your expertise!

 

[ShezaGirlie]

Hi ShezaGirlie and all old timers, good to see you back(?).
Joey had his Ross Procedure in 2001 and had his AVR replaced Jan 2018, along with a MV repair (ring). Dr. Stelzer who did his original RP did this surgery as well. His thinking was : lets use bovine for AVR (Joey is 67) and hope it lasts another 10-12 years at which point it can be taken care of using TAVR (although a great solution, will hopefully be perfected by then). Mitral ring/repair will hopefully last long.
My dad (who died last year CHF) had a mechanical valve, had mitral repair (ring) and we consulted with mitraclip surgeons in NYC (he was not a candidate because his flaps were too far apart to be clipped together due to enlargement of heart). Mitraclip is a great alternative and there have been many successes with it. Not sure of how long it lasts (vs. mitral repair/ring) as it is quite new.
I hate to say this once again, but you have choices_ a good thing.
I'm sure others will chime in and give their helpful opinions.
Good to see you back. Hope this helps at all. This too shall pass and you will come out of it feeling so much stronger and better. Remember, the anticipation, waiting is always hard.
Be well,
sylvia

Oh Sylvia, it’s wonderful to see you! Yes, we’re the “old folks” on this wonderful and helpful website that Hank created back in the olden days... I’m so happy to hear your Joey is doing fine. My surgeon for option #1 used the same logic as your Dr Seltzer in NYC. My only concern on that for me is why mess with a 20 yr great record with my mechanical St Jude aortic valve. I could get off warfarin and that’s sure desirable, but at the same time I’ve had no issues with it. The surgeon told me my mitral was good for a repair. Even though option 2 is desirable to me, it’s still time on the Heart/lung machine and basically the same recovery as a sternum entry. One bright note is the surgeon who does the port mitral repair “freezes” the nerves and so post surgery pain would be lessened. I’m really not into pain since I know what it’s like having had OHS before. One of the 4 surgeons who I consulted with - all at the same time - specializes in the mitraclip, but wasn’t very encouraging in my case because that could be a consideration down the line if a repair doesn’t last long enough if that’s even possible. So, who in a million years thought I’d have to go through this again....but like they say “it is what it is” and I know major surgical advancements have been made in the last 20 years. I was going to the Cleveland Clinic, but didn’t have the energy, so the Heart Hospital of Austin is also a great choice. Yep, the anticipation is the most stressful part and I’m not of a stressed personality type person.

 

[vitdoc]

I don’t know why the clip is not being seriously considered. First you need to be evaluated to determine if you have the right anatomy for the clip to work.
I think you should see someone who has done 250-500 clip procedures .
As I mentioned there are people that have clips put in 10 years ago. To remove a perfectly functioning aortic valve that can easily last a lifetime seems an odd choice.
From the patient‘s perspective putting in a clip is MUCH easier than an open heart. A femoral vein incision is made in the groin. The assault on your body going on bypass, losing blood and the anesthesia take some time to recover from In routine valve surgery. The clip procedure is a piece of cake in comparison. And I speak from having three open hearts.
You might have to travel to see an experienced clip physician but it would be worth your while to at least get another opinion. My clips have been in for 4 years without any change in function. I had severe mitral regurge which was reduced to mild. I also did not get any stenosis of the valve. Sometimes new things take a while to settle in. I was a bit of a clip skeptic initially but not anymore. Finally there are plenty of people who have gone for valve repair and then find the repair failed requiring another open heart. Right now placement of a mitral valve through the groin is still not established like in the aortic position.

 

[dornole]

I had a different kind of mitral repair (valvuloplasty for stenosis) at age 35. I was in congestive heart failure, literally coughing up blood before it. Super easy to tolerate (it’s a balloon through the vein) and worked, I do have some regurgitation as a result of the procedure but I can do anything I want in life and I’m alive. So I’d ask the following about the mitral clip - what are the risks of this procedure? What are your chances of survival? If you can survive a failure of the clip, why not try it. That was the thinking with my procedure which did carry some risk but safer than ohs even for a young nipper like me. We judged it would buy me 10 years. It’s now been 17. I have to think that at 72, major surgery is gonna be traumatic and you also say you don’t need to live forever with a crappy quality of life. I’d try the clip first unless you judge that it is way too dangerous to try. Cleveland Clinic does a ton of mitral clips and has good info on their website. Good luck!

 

[dornole]

And vitdoc is right, Mitral Valve replacement Via “TAVR” type route thru the vein is VERY new, pretty much experimental. The mitral valve has a more more complex structure than the aortic. The guy who wants to rip out 2 valves and put in porcine so you can have 2 tavrs later sounds like a guy who really likes doing surgery to me.

 

[vitdoc]

I forgot to mention one other issue with multiple surgeries. The AV node which passes the electrical signal from the upper heart to the ventricles often can be damaged with multiple surgeries. You can develop a 3 rd degree AV block which would require a pacemaker to bypass. Not theoretical! Happens all the time and it happened to me after my third open heart. Had a partial alteration after my second open heart but did not need a pacer.
So removing the current mechanical aortic valve and replacing it is not a piece of cake.

 

[spartangator]

Thanks for the update @ShezaGirlie. Glad you're being attended to by so many clinicians and getting info here. I had my valve work done at the Heart Hospital a dozen years ago and still go there for my annual check-ups (though I loathe the administrative aspect St. David's take-over of the place).

Just wanted to chime in and say I'm thinking of you, happy to offer any Austin-centric support (I live near the hospital so know the area well) that could make the surgical experience easier for you or your loved ones.

 

[Freebird]

Thanks for the update @ShezaGirlie. Glad you're being attended to by so many clinicians and getting info here. I had my valve work done at the Heart Hospital a dozen years ago and still go there for my annual check-ups (though I loathe the administrative aspect St. David's take-over of the place).

Just wanted to chime in and say I'm thinking of you, happy to offer any Austin-centric support (I live near the hospital so know the area well) that could make the surgical experience easier for you or your loved ones.

I live near Heart Hospital too and I have aortic valve and aneurysm repair in my very near future too. May I ask who your surgeon was?

 

[nobog]

Abbott makes the mitral clip (MitraClip) as well as the Tendyne transcatheter mitral valve:
https://abbott.mediaroom.com/2020-0...k-for-Transcatheter-Mitral-Valve-Implantation.

I wouldn't touch the SJM valve.

 

[ShezaGirlie]

Abbott makes the mitral clip (MitraClip) as well as the Tendyne transcatheter mitral valve:
https://abbott.mediaroom.com/2020-0...k-for-Transcatheter-Mitral-Valve-Implantation.

I wouldn't touch the SJM valve.

This is great info...thanks! I've researched the Tendyne transcatheter mitral valve and it sounds very innovative even though not approved by the FDA yet! We always lag behind Europe...

 

[ShezaGirlie]

Thanks for the update @ShezaGirlie. Glad you're being attended to by so many clinicians and getting info here. I had my valve work done at the Heart Hospital a dozen years ago and still go there for my annual check-ups (though I loathe the administrative aspect St. David's take-over of the place).

Just wanted to chime in and say I'm thinking of you, happy to offer any Austin-centric support (I live near the hospital so know the area well) that could make the surgical experience easier for you or your loved ones.

Thanks loads for your info and offer of help! We live in New Braunfels, so we've spent the night before appointments, so if you know of a nice hotel near the Heart Hospital - I'm all ears. We have stayed at the Crown Plaza and the Intercontinental for morning appointments. Crown Plaza is old...ack!

 

[spartangator]

Thanks loads for your info and offer of help! We live in New Braunfels, so we've spent the night before appointments, so if you know of a nice hotel near the Heart Hospital - I'm all ears. We have stayed at the Crown Plaza and the Intercontinental for morning appointments. Crown Plaza is old...ack!

Ha! Being that I live nearby, hotels may be where I have the least experience!

For work visitors with the university (five minutes down the road from the hospital), we've used Hotel Ella and the AT&T Center on campus to great feedback, both of which are typically a little cheaper than the Intercontinental. I adore Hotel Ella to bits.

To me, they're the best city centre hotels in that they're comfortable, welcoming, and set up for easy visits (thoughtful staff, easy parking, etc).
Oh, the DoubleTree Suites by Hilton (10 min down Lavaca St from hospital) has also been a good choice, and, yes, the Crowne Plaza has some years under its belt

 

[spartangator]

I live near Heart Hospital too and I have aortic valve and aneurysm repair in my very near future too. May I ask who your surgeon was?

Yes, of course, happy to help. John Oswalt from CTVS did my surgery about a dozen years ago, and I could not have been happier with him and his team. I was looking geographically all over at the time, and he was the first one that was willing to deal with my case (because I was young adult) and listen.

 

[Protimenow]

Slightly off topic, but slightly related to previous posts. It took almost 30 years after my Aortic valve replacement (St. Jude) for the nodes and other structures that control heart rhythm inside my heart to concurrently go crazy. My arrhythmias were so severe that the urgent care doctors didn't trust me to drive to a hospital across the street.

I didn't wait long for an angiogram (the day after admission),so I didn't have long to stress about it (plus, it was my thifd). DItto on the ablation of some of the areas that were causing some of the arrhythmias. Not having to wait for these procedures was much easier than waiting weeks or months to get it done.

It looked like I may need a third ablation - more delicate and more dangerous. THIS is one that I really was dreading and not at all looking forward to, because of the risks. I still haven't been scheduled by UCLA.

My heart rate dropped to below 40. It was that low, intermittently, for a little over a week. I contacted my electrophysiologist on a Saturday. He answered the phone. About an hour later, Uber took me to the hospital. The operating room was clear, and an anesthesiologist was still there. I was given the option of waiting a few days until an O.R. was available or get a pacemaker right away. I went into Pre-op within minutes, and was in the O.R. about 30 minutes later. There was NO time to anticipate or worry about this. About an hour later, I was in Post-Op. I called the doctor at about 2 PM, and was discharged at 9:30. THIS was a quick visit for a routine surgery. The pacemaker seems to have resolved my PVCs, so I won't need the other ablation.

When I had my aortic valve replaced, I had about a month to plan for it. I made sure there were no dental problems, I gave a few pints of blood that could be autotransfused, if I needed it. My wife worried a lot about it, and it probably weighed a bit on my mind, and on those of my kids.

Two points - yes, OHS can cause rhythm issues - I'm not sure if the strange arrythmias I developed many years later were associated with the OHS or not. To me, it may be somewhat better to not have to anticipate, fret over, worry about, etc., a surgery that's weeks or months ahead. Sure, researching and learning all you can about a procedure, shopping for the best surgeon at the best hospital (or one who is still very experienced, at a hospital that is closer to you), is a good use of your time, and can relieve much of the anxiety, but there's still a lot of time to let your brain come up with all kind of stresses.

 

[vitdoc]

Thanks loads for your info and offer of help! We live in New Braunfels, so we've spent the night before appointments, so if you know of a nice hotel near the Heart Hospital - I'm all ears. We have stayed at the Crown Plaza and the Intercontinental for morning appointments. Crown Plaza is old...ack!

Thanks loads for your info and offer of help! We live in New Braunfels, so we've spent the night before appointments, so if you know of a nice hotel near the Heart Hospital - I'm all ears. We have stayed at the Crown Plaza and the Intercontinental for morning appointments. Crown Plaza is old...ack!

So what are you going to do in terms of your heart?

 

[ShezaGirlie]

Abbott makes the mitral clip (MitraClip) as well as the Tendyne transcatheter mitral valve:
https://abbott.mediaroom.com/2020-0...k-for-Transcatheter-Mitral-Valve-Implantation.

I wouldn't touch the SJM valve.

THANK YOU 'nobog' -- Dr. Hyde of the Heart Hospital of Austin called me this morning after I questioned the Tendyne mitral valve because you mentioned it to me and he said if I choose that avenue it would be good for me should I qualify. I am going up to Austin on Thursday to meet with him (again)..

It is in trial since July 2018 with 1,010 patients in the USA and Canada and Dr. Hyde and the Heart Hospital of Austin are part of the trial. HOORAY for you (nobog) for telling me about it!! I have loved this site since 1999, but that was just after my aortic valve was replaced - so I went in as an emergency and came out with the St. Jude Silzone valve which has served me well for 20 years now. BTW, the Tendyne valve is approved in Europe with the CE Mark..!

Thank you everyone who has shown concern and taken the time to help this old woman come to a conclusion as what to do! I will continue to update when/if I qualify for the trial..