Avr #3

[RobNYC]

Hi All,

I am a 39 y/o male presently planning my third aortic valve replacement. My current valve (St. Jude bileaflet) seems to have narrowed considerably. In addition to this, I also have a mechanical tripcuspic valve (Starr-Edwards ball cage). The tricuspid valve seems to be funationing well. Both were implanted in 1990. These replaces porcine valves implanted in both positions in 1984.

Given the complexity of a third replacement, I am curious to get some feedback from people who have had multiple aortic valve replacements in terms of (a) type of valve inserted, (b) the surgeon who performed the surgeries and (c) their overall experiences.

Geographically, I am leaning towards having this surgery done in New York or Boston simply to be near family. I have an appointment with Dr. Wayne Isom at New York Hospital already scheduled, but am looking to meet with another couple of surgeons as well.

Thanks in advance,
R

 

[DickV]

Rob, I am on my first mechanical but I have a question. What do you mean by the narrowing of the valve? Is it scar tissue or some other obstruction? I have not heard of this complication and I do not think many of by co-clickers have either.

Dick

 

[RobNYC]

As I understand it, the cause of the "narrowing" is unknown. TEE does not show any clot and there is no evidence of infection. One theory at this stage is that the problem may be caused by scar tissue but that's simply a theory at this stage.

However, it's clear that the valve has become very stenotic, with a peak gradient of about 100mm.

Regards, R

 

[sylviayasgur]

hi rob!
welcome! this is a wonderful site. everyone here is supportive, caring and very knowledgeable.
i'm sorry i can't help with your question about multiple vr's but i'm sure others will come forward shortly.
nancy has a lot of experience with this, but her husband, joe, who is the patient, is in the hospital right now.
i'm sure she will add to this when she gets back. she's great and should have been a doc herself!!!
have you looked into dr. colvin? i'm not sure if he's at nyu. also, columbia has some fabulous guys. we met with craig smith who is supposed to be one of the best, but we did not care for him personally. there are others there too though
(they have a website:http://columbiasurgery.org/division/cardiac/dm_ross.html). have you looked into st. francis heart hospital? my dad had his bypass and mechanical done by paul damus there.
where in ny do you live? please let us know how and what you are doing .
good luck and be well, sylvia

 

[ALCapshaw]

Hi Rob,

The only contribution I can make is to be sure your find a surgeon who has CONSIDERABLE EXPERIENCE with MULTIPLE AVR's.

As I believe you understand, Third surgeries are complicated due to scar tissue. This is NOT the time or place for someone to 'learn the ropes'. Go to the BEST, Most Experienced Surgeon you can find !

'AL'

 

[JenniferO]

Rob:

In the Boston area, I would recommend you check out Dr. Lawrence Cohn at Brigham and Women's Hospital.

He has had aortic valve surgery himself, and is an excellent surgeon.

 

[Mb]

Whew! 39 and facing your third surgery. Are you symptomatic???

My husband had two valves installed, aortic and mitral St. Jude's, at Mass General. His surgeon, world reknown, was Dr. Gus Vlahakis. Tel. 617-726-1861 - I cannot tell you how pleased we were with the referral we had gotten from others.

When we went to see him the first time, he spent almost 2 hours with us, explaining everything. We were concerned about the folks in the waiting room, and he said not to worry, they would wait. Well, they all did, as we had a list of questions a mile long. He saw my husband twice afterwards, presurgery. The valves are working beautifully, although he has some residual problems as he had the surgery only after being symptomatic for quite some time.

We wish you the best in your quest, your surgery, and your recovery.

Marybeth

 

[Sam Scholz]

Hey Rob..... I had my 3rd AVR done 02/10/2000, It was done in Boston at the Brigham and Womens. Dr Larry Cohen was the surgeon, I had a St Judes installed, and a Mitral ring repair. The surgery was supposed to be for 2 St. Judes, but upon getting in there the mitral repair was done instead. They replaced a 15 yr old Hanckon Porcine Aortic Valve, worked great right up to the end. Dr Cohen installed that one also. So having the same guy who did the previous surgery really helped. He has stacks of little black books with all his notes, he looked me up on my consultation. Recovery time was fairly quick. Back to work in 3 mos. I was 40 at the time. Adjusting to Coumidan, was not to bad, I take 25mg (a small dose) I guess it comes with the valve. I had a-fib the first couple of days, and an occaisional skip. but all in all I would have to say it was much better than the first 2, 1976 and 85. Cohen is really anti pain meds. So the first night in ICU you get morphine and that's it. Tylenol after that. I first thought he was nuts, but it really helps to get you on your feet. The guy next to me had another surgeon, and he got morphine at will, he was a mess. Maybe I knew what to expect. No sneezing, get up and walk. Take that first shower. Pizza from the machine in the basement.

I think the suregery was 4-5 hours with 2-3 hours on the pump.
I went home after 4 days.

Sam

 

[bruizer]

Hey Rob,

I was told the same thing that Sam was told. It is usually better to have the same surgeon for any subsequent surgeries since he will be familiar with your anatomy. Of course, you also want someone who has had a lot of experience with redo's since they are technically more demanding due to the scar tissue.

Sam, I am curious about your multiple AVR surgeries. Did your surgeon expressed any concern with the scar tissue issue? Also, was your recovery pretty much the same as the previous one?

 

[RobNYC]

Hi All,

Thanks for the comments & feedback. It's certainly useful to hear from others on this topic.

In answer to a previous question, I am asymptomatic. No chest pain, shortness of breath, black-outs, etc. In fact, I was working out three or four times a week with a personal trainer and didn't notice that anything was amiss until the routine echo showed a problem with the gradient. Since there is no apparent mechanism for the narrowing, one theory that has been floated by my cardiologist is that it may be due to scar tissue.

Today I met with Wayne Isom at NYP-Cornell. He had done my previous surgery in 1990 and I was very happy with him and with the care I received there. The interesting part of the meeting today was that there is a theory that the high gradient being measured by the echocardiograms may in fact be an anomoly. Dr. Isom stated that he has seen this several times before particularly with small St. Jude bileaflet valves (mine is 21mm).

So, the next step for me is to have a transseptal catheterization later this month/early next month. Presumably this will provide the definitive results in terms of the gradient. However, I am somewhat guarded since there is other evidence (elevated bilibrubin) which does point to a problem with the valve.

Again, thanks for all the feedback! I'll be certain to provide additional information as to my situation once it becomes available.

-Rob

 

[Nancy]

Hi Rob-

I just got a chance to read your post regarding multiple surgeries.

My husband has had 3 valve surgeries. He has an aortic mechanical from 1977, a mitral mechanical (St. Jude), and had a repair on the mitral for a paravalvular leak.

Scar tissue is indeed an issue. The first two surgeries were through the sternum, and the last was through the lung area using the heart port method. I think it was easier on him not to have to go through the sternum again.

After the last surgery, Joe developed serum sickness from the antibiotic Ancef, which is used during thoracic surgery. It was a devastating illness and put him right back in the ICU for over a week. The funny thing is that this was used on him several times before (he also has had 2 lung surgeries), and never had any problem whatsoever. Ancef is related to cephalosporins and cephazolin, which are related to Penicillin, and he has never been allergic to that either. So-o-o, I'm thinking that if there was some way to try to determine if you have become sensitized to any injected antibiotics, it might be a good question to ask of your doctor. I wouldn't want to see anyone else have to go through it. Joe almost died.

So it isn't just the scar tissue that's the problem with multiple surgeries. But with careful planning and asking very specific questions of the doctor, you should do just fine. I agree that having the same doctor is a good idea. Joe's surgeon, Dr. Harry DePan did two of his valve surgeries and one of his lung surgeries. Knowing what is inside there is a big help.

Joe's heart is now in good shape. He just gave it the royal workout. He went in for gallbladder surgery and a liver biopsy (the general surgeon did that) and ended up with a complete bleed. He was in the hospital for 12 days. I just brought him home today. His heart was fine throughout, a little stressed at times, but without the heart fixes, I don't think he would have been here.

So getting things taken care of heart-wise is the right thing to do. You're young and that's a real plus.

I wish you all the best.

 

[Sam Scholz]

This is in Respones to Bruiser's queston:

Sam, I am curious about your multiple AVR surgeries. Did your surgeon expressed any concern with the scar tissue issue? Also, was your recovery pretty much the same as the previous one?

My Surgeon "Larry Cohn" alluded to the difficulty, but was not a great concern, I attributed to his self-image of "Vast Surgeon" and that nothing was to difficult. But I figured that just the fact that this was #3 for me, I did the worrying for him.

As far as recovery goes, recover seemed quicker, it still takes about 3 months to function, i.e. job, and about a 12-18 months to feel totally normal. And going from no drugs to Coumidan and a small amount of Atenenol 25mg., took some getting used to. Oh Yes and the constant "click click " from the valve is cool.

Sam

 

[sylviayasgur]

hi rob!
when will you be having this transseptal cath? what exactly is it?
wayne isom was one of my dad's two choices for surgeons. he is, as you already know, supposed to be a fantastic surgeon. (my dad wanted to stay closer to home and had paul damus at st. francis on long island do his avr).
please let us know how things go. wishing you all the best,
sylvia

 

[RobNYC]

Sylvia,

I'm scheduled to go into the hospital on June 2nd or 3rd (depends on how my anti-coagulation will be managed) and I'll have the procedure done on June 4th.

My understanding is that a transseptal cath is one in which the catheter is maneuvered all the way through to the left ventricle. Presumably this allows the pressure to be measured directly from the left ventricle and thus compared to the "estimate" which is calculated from echocardiography. However, I don't think it's possible to measure the precise transvalvular gradient since I don't think it is possible/advisable for the catheter to cross a mechanical bileafleft aortic valve. In general, I'm actually guessing a bit here -- I'd be curious to hear more from someone who actually understands this in some detail.

I think the issue at hand in my specific instance has to do with the fact that I have a small (21mm) St. Jude valve in the aortic position and it is possible that the gradient measured by echocardiography is somehow incorrect. Currently I have a peak gradient of over 100mm and a mean gradient of about 70-80mm as measured by echo. However, I am not displaying any symptoms and in fact was working out pretty vigorously until I had an echo about six weeks ago. As I understand it, if my aortic valve is as stenotic as it appears to be, it seems unlikely I would be as asymptomatic as I am. However, I guess I'll know more once I have the cath done....

-Rob

 

[sylviayasgur]

hi rob!
where are you having the test done?
i dont' know enough to be able to say, but, joey had both insufficiency and stenosis in his av for years. the cardio said that eventually it would be the stenosis that would cause him to need the surgery.......well, it was just that.
his av became progressively more stenotic over a period of MONTHS and before we knew it, we were surgeon shopping.
when they did his last cath, they said the aortic valve was so tight, they didn't even try to go through it!
the surgeon confirmed that it was almost sealed shut!!!
so, i know these things can progress very quickly. it seemed like one day joey was ok and the next he was almost totally out of breath.
are you nervous about the test? i am curious to see what the results indicate.
please let us know, ok? in the meantime, just keep coming back and we'll all be here.
wishing you all the best,
sylvia

 

[Nancy]

H Rob-

I just wanted to let you know that Joe had a transseptal cath, many, many moons ago at Mass. General Hospital. It was so long ago, that I don't remember any of the details, except that it was helpful, and he walked out of the hospital the same day, with me holding his hand. It was not a normal test then, especially with his valve (only the aortic at that time). His cadiologist from Lahey Clinic ordered it then. He has a local cardiologist now.

So I wish you all the best with the cath. You'll be fine and it will help.

 

[RobNYC]

Thanks to everyone for their thoughts and input. Here is a quick update on my situation.

I went off my coudamin at the end of last week, entered the hospital (New York Hospital aka New York-Presbyterian Cornell) on Sunday, started on heparin, and had the transeptal cath on Tuesday. Both my right and left heart were examined (since I also have a mechanical tricuspid valve) although the major area of concern was the aortic valve (which should have been severely stenotic as measured by echo).

The good news here is that the results from the catheterization were considerabily different from the echocardiograms and the view of all involved is that the aortic valve is functioning well within the expected limits (I haven't seen a copy of the report with all the data but hope to get a copy of that shortly). Two of the numbers thrown around were a "peak to peak" gradient of 50mm across the valve, and an aortic valve area of 1.2 sq cm (both of which are apparently in the expected range for a small (21mm) St. Jude bi-leaflet valve).

So, the good news is that I'm not having my aortic valve replaced again! I do have a few other odd things going odd (slow pulse, slight hypertension and the occasional skipped heart beat) which I'll now see my cardiologist about since the aortic valve has gotten a clean bill of health.

In the end, I'm very grateful to the surgeon involved (Wayne Isom, who did my surgery 12 years ago) since he was convinced from the start that the valve was fine and asked that the transseptal cath be performed. To me it's a very weird story (Dr. Isom says he had seen this before with type & size of valve) but my cardiologist says he's never seen anything like this before...

-Rob

 

[Nancy]

Hi Rob-

That's very good news about not needing a valve replacement. They'll get your heart things straightened out and then you can give a sigh of relief.

 

[Johnny Stephens]

Rob, great to hear that you are off the hook! I'm sure that is a big relief to you. Here's hoping that the good luck continues....