What I think I know about my AVR

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T

tomkanis

If you asked me in January of this year what my problems were, I would have said they are mostly orthopedic. I was plenty tubby from travel and smoking cessation, and therefore on a diet, but the rest was bones: Plantar faciieitis, osteoarthritis in both knees, two sagging lumbar discs with Sciatic involvement, and magnum carpal tunnel. But when our health insurance went through the roof in January, I felt confident enough to dump the expensive short-term disability. All I planned on doing was two more carpal tunnel operations, maybe, this year.

I had a physical in February, and my internist told me that despite dropping 38 lbs, my A1C readings were up to 6.8, so she says that I?m now a Type 2 diabetic. Oh, Joy. My Mom was Type 1, and it killed her.. My older brother beat me to Type 2 by 6 weeks. Also, the echo said that my AS was now moderate to severe. It had been moderate for years.

I had been told previously that I?d need a valve, but ?way off in the future?. In March I saw a Cardio of the internists? choice, and he immediately wanted to do a Catheterization. He also said that he would consider nothing but a mechanical valve for me because of my age (I?m 58). I thought he must have the wrong records. I thanked him for his time, left and called my internist. She said not to worry, that her Cardio only wanted to ?keep an eye? on the AS. I told her he sounded like a sub commander keeping an eye on an enemy freighter. I then called a Cardio I know socially, and trust. He ran a Doppler echo and told me that the first guy was right about the Cath. The AVA was 1.7 CM^2, and that he, too wanted to run a Cath. I was absolutely stunned, since I?m totally asymptomatic.

My Cardio friend ran the Cath, and told me that the pressure across the valve was 70 mm of mercury, and that action was indicated above 50 mm, and oh, by the way, I had two coronary arteries that were getting tight, ?but don?t let anyone talk you into a bypass?. He wanted to have me see a surgeon. I was totally flattened by this, and didn?t do it for three weeks. The surgeon gave me the same story, and of course wanted to do the two bypasses that the Cardio wanted to stent eventually. I had three pages of questions for him, and he was patient with me. The big question was mortality and his answer was 2-4%. It doesn?t sound like much, but it?s 2-4 times that of the average for a healthy male.

I?ve checked out the surgeon through other Cardios and OR docs I know, and they all respected him. One said he ?is at the height of his power.? I asked my Cardio if I should get a second opinion, and he was non-committal: ?you can if you want to?. The surgeon only does the full-sternotomy style AVR, and told me my on-pump time will be about 3 hours, out of a 5-hour operation.

My Cardio tells me that it?ll be OK to wait until October to do the Operation. He said I could enjoy the summer and then do it. I?m not really enjoying anything, including two business trips to England last month, and it occurred to me after talking to the Mended Hearts folks, that being asymptomatic will probably make me an ungrateful patient. We not gonna fix anything that?s bothering me, and were gonna make a mess doing it. Additionally, we gonna use up my accumulated vacation to do it, and I?ll have to work from the house via phone and fax after three weeks of recouperation.

So, I?m making preparations. First, the legal stuff: Will, Durable Power of Attorney, Medical Power of Attorney, and, given my luck so far, funeral arrangements and a burial plot.

In July, I?m getting my teeth cleaned (surgeon?s idea) and in August get my knees re-filled with sinoveal fluid, so I can walk in rehab. Get the house professionally cleaned and make arrangements for a nursing service for the first week back, since I?m single and live alone. I sure wish this was after I was 60: my military insurance would cover a lot.

I still don?t know if I should get a second opinion, or if I should just let the surgeon do the two bypasses, but I?ve got a couple of weeks to figure to out. What ticks me off is that I know my Cardio want to suggest a course of action to me, but that his insurance won?t let him do things like that.

Tom in Cincinnati
 
Welcome Tom from another Cincinnati area member.
You have come face to face with the shock of needing OHS. Even when one is symptomatic, it is still difficult to hear "you need surgery".
The very fact that you mentioned, more than once, about getting a second opinion, indicates to me that you should. I think you would be second guessing if you didn't and that is not a good way to head into this. Since you live in a great area for doctors, a second opinion will not be hard to get.
You have some time yet to prepare, read many of the threads here and learn all the little tricks that make this easier. In addiiton, you are now a member of our family and we will help get you through.
 
Good Grief, Tom, I think you need some help finding the silver lining in that cloud hanging over your head!:p You've quit smoking and you're on a diet! Hooray for you! Your heart and lungs (and virtually every other body part) will benefit from not smoking, your knees and your diabetes will benefit from the diet, and your arteries will benefit greatly from both of those major lifestyle changes! Hip hip hooray for you! It's 2006 and AVR is not a walk in the park, but it's a very successful surgery from which you will, in all likelihood, recover quite nicely! And if all that's not positive enough, you have a job that you can do over the phone with the help of a fax machine! (My hubby happens to be doing that right now, while he recovers from pelvic surgery--it's working just fine.)

By all means, go and get a second opinion. Bring copies of all your tests (not the reports--the tests) and don't mention the "don't let anyone talk you into a bypass" and see if they try. If they do, hear them out.

Now, go shut off the dirge you've got playing in the background and find some Disney tunes!;) :D

Oh, and have a hug!
 
Hi, Tom - we all certainly understand your shock at becoming a heart patient so suddenly, particularly one requiring ohs. You're dealing with it, but emotionally it takes a lot longer to internalize the reality.

I also think you might as well get a second opinion - it won't hurt anyone's feelings, and may allow you to accept surgery more readily.

I also think you'll find that if the cardiologist thinks it's time for valve surgery, it's REALLY time - cardios tend to be conservative - treat medically, etc. Many folks here have had a tough time getting cardios to refer them to a surgeon, even when they're symptomatic; end up having to cardio shop until they get one who will credit their feeling that something was really wrong.

Further, my guess is that you are indeed symptomatic, but because valve symptoms are very stealthy and come on slowly, over a long period of time, you attribute them to age or girth or lack of exercise.

It really sounds like you've had good, solid medical advice. Hang in here with us, ask questions, whine, laugh, etc., - you really have found a great heart family.
 
Welcome, Tom. I concur- a second opinion will put you at ease and may give you more options to consider re: valve type, minimally invasive (only if you don't need the bypass), etc. Knowledge is power and we hope we can help you sort through all the options as you browse the forum.
Wishing you the best!
 
I agree w/ everyone else get a second opinion, i've heard of people wishing they had later, but never saying gee i wish i never got the 2nd op.
one of the questions i wouldask w/ you back problems, would be if getting a mechanical and the coumaden, would make it difficult for procedures you would need for your back or other joint problems you have. Lyn
 
Welcome, Tom! We hope you will come back and post many times. And now we'll be keeping an eye on you, anyway, ;) , so please keep us apprised of your decisions, opinions and experiences.

It cannot hurt to have another surgical opinion. I did it because I just thought it was a "buyer's" intelligence to do it! What I found was complete relief that everyone was in sync. I got different information (well, probably the same, but explained in a different, sometimes clearer way). That said, some people get more confused and get different opinions. But wouldn't you rather have several opinions to thoroughly investigate than use blind faith in only one?

I'm somewhat puzzled by your timing. A 1.7 cm squared aortic valve measurement is generally not one which is ready for surgery on it's own merit. I guess the heightened pressure gradient was the culprit? Most cardiologists call in a surgeon when the valve gets smaller than 1.0. Was that a typo?

I don't know Ohio. Are you close enough to Cleveland Clinic to get an opinion there? Given that you have arterial blockages also, wouldn't you feel good going to one of the best hospitals in the country? I sure would.

I'm in cardiac rehab now. There's a woman who had failed stents and several heart attacks. Obviously just one isolated case, but are stents a rather new procedure? Please be sure that your cardiologist has many, many successful stent procedures under his belt (or referrals, or whatever......who does those?)

Also, you are 58. I'm 52. I just got a bovine tissue valve. I don't want to spark any controversy here, but please be sure that you are educated to your satisfaction on your valve choices. The new tissue valves are "said" to have a "potentially" longer lifespan. No true statistics yet....but they are "coming in quite good".

Also, 3 hours on the heart-lung sounds scary, but isn't that par for the course, gang? I had textbook, simple, in and out AVR and I was on the pump for almost 2 hours. If you don't have it done at the same time, you're looking at doing it again, aren't you? That might mean twice as much time on the pump.

Lastly! I would like to ask you about your experience with Synvisc injections for your knees. I was just offered that by my orthopedist if my one knee (previously orthoscopic meniscus tear repair and lateral release of the knee cap) doesn't get better with exercise and glucosomine chondroitin. I'll probably try accupuncture first, too. But do you like those shots? Do they work for you? My orthopedist said the relief could last up to several years??

Please take some time to use the search button here, and read as much as you can stand to read! There is a great list of resource links on the main page of the Forums.

Oh, and several people have had bypass at the same time. DerBiermeister is one and he's a wonderful correspondant......you could PM him with questions, too, perhaps.

Good luck and get back to us!

Marguerite
 
I remember well my experience with SynVisc injections. I went through the 3 week shot program (expensive to say the least) - and those shots didn't do squat!

I had such high hopes too, especially when told that they usually work pretty good on over 50% of the patients.

Anyway .. because that was my last resort, I had a TKR about 2 months later.
 
2nd opinion

2nd opinion

As a doctor, (Chiropractor), I always, always, recommend to anyone to get a 2nd, and sometimes even a 3rd opinion.

I was floored in December of 2005 with my own diagnosis of severe aortic regurgitation. I too was, and still am asymptomatic--or so I though. I have always been physically active my entire life. I exercise regularly and friends jokingly say that what I don't know about nutrition, hasn't been discovered yet. However, over the past 2 years I began to notice that I wasn't recovering from my workouts as well as I had in the past. Also, being in south Florida, I was starting to become less tollerant to the heat and humidity. I chalked it up to my advancing age, I am now 49.

My BAV was discovered almost by accident. I was having a routine physical and my internist told me that she heard a bruit in my carotid artery--however, she completely missed the murmur. (obviously so did everyone else throughout my lifetime). I immediately sent myself for a carotid ultra-sound. It was normal. I have a patient who is a cardio, and I went to see him. As soon as he listened to my heart, and felt my femoral pulse he knew what it was.

I had the echo, the TEE and the cardiac catherization. I consulted with a local surgeon who couldn't wait to slap me on the OR table, and also insisted that he would only give me a mechanical valve.

I did my own research, also found this site and read all the threads. I took it upon myself to get a 2nd opinion with a cardiologist and cardio-thoracic surgeon at the Cleveland Clinic in Ft. Lauderdale Florida. Both agreed that I am not yet a surgical candidate. Yes, they told me that I will need to have the procedure done, but they adhere to a different criteria, and that as of 2005 I did not fall into their surgical criteria. I am due to return in two weeks for a repeat echo. They told me they will inform as to when I fit their criteria.

In the meantime I have cut back on the intensity of my exercise, but still continue to workout daily. The surgeon at Cleveland Clinic also told me he has no problems with using a bio-prosthetic valve as opposed to a mechanical.

So please, satisfy yourself and get that 2nd opinion, and even a 3rd opinion.

As for the knee injections; from my experience of having patients undergo the procedure, they help in about 1/3 of the cases. 2/3's of those who get then receive no benefit.

You would also benefit from weight loss and exercise. If you are diabetic, exercise caution with the glucosamine-speak with your internist first. If he/she gives you the go-ahead, you have to give it 3-5 months of 1,500 mg daily to see if it will help you.
 
Tom:

I, too was asymptomatic. In fact, one dr. told me to just walk uphill on a treadmill for an hour a day and I'd be fine "for a long time."

But I started to feel "off my feed." Quit drinking, quit the cigars, ate like a vegtarian monk -- and still felt on the crappy side.

I resisted two other cardiologists notions that "I was on the cusp" of having to have my aortic valve replaced.

Finally, after a ct scan showed an aneurysm at 5.1 cm, I didn't want to wait anymore and just had the damn thing taken care of.

Now I'm three weeks post op and feeling pretty good -- not 100% of course, but I think in the coming weeks I'm going to feel better and better. the WAITING was what did me in. I couldn't stand it.

So....I hope this helps you
 
Hi Tom,
Sorry you've had such unexpected news! I'm also from Ohio and had my aortic valve replaced last year. If you decide to get a second opinion, I'd like to recommend you consider getting it from the Cleveland Clinic. I'm sure your hospital and surgeon are top notch, but why not get checked out at the best heart hospital in the country when it's only a few hours away? I was very happy with the care I received there, was able to get minimally invasive surgery and my time on the heart lung machine was measured in minutes rathen than hours. They also do virtual second opinions where you just send all your test data to them and they make a recommendation without seeing you, but I think there is nothing like hands on care. Just a suggestion. Take care, Kate
 
You know, this reminds me of sitting around the table after dinner when I was in high school (I?m one of six kids) and comparing the experiences of the day.

Answers to all and sundry (and I thank you for your interest):


2nd Opinion: ok, OK, AWRIGHT; I?ll get a second opinion. I know another guy to go to.

Quitting Smoking: Did this on my 50th birthday; my internist interpreted the results of carpal tunnel syndrome as a ?stroke or at least a TIA?. Then when it looked like I might waver back to cigars, he had me MRI?d ?to rule out MS?. I was worried as hell. Gained 70 lbs. Kept with the cessation program, dumped the internist. The nicest thing my Cardio said to me is ?you don?t have a smoker?s heart?.

Symptoms: Nope. No syncope, no shortness-of breath, no edema, no light-headedness. Yesterday afternoon in 98 degree weather, I rode a 650 Lb motorcycle through heavy traffic for 2-1/2 hours. I got hot, but that was it. The bike did overheat and quit, though. I was never very ?athletic?, but I made it through all physical requirements of the military for 30 years, until I retired from the USAR 10 years ago. I did notice that Glucophage makes me sleepy, and it?s not supposed to do that.

Attitude: Guess I?m still smoked at my internist for not knowing about asymptomatic AS. I know my Cardio called and talked to her extensively, and he doesn?t do that normally. But the real thing is that no one has looked me in the eye and said, ?Hey, do this and it?ll be OK.? They just say here's the options, you choose.

Diagnosis: Yes, 1.7 CM^2 AVA is correct, with a gradient of 70mm Hg. The Ventricle is getting a little hypertrophied. My BAV heart murmur has been on my records since my summer camp physical with the Scouts at age 11.

Surgery Types: Most likely the full-Monty sternotomy. I?ve talked to enough folks who have had it to not be afraid of it. I will say that I watched the Ott/Cooley presentation on the web at the very beginning of this, and was probably a bad idea to see it at that time. I didn?t sleep well for a couple of nights. In fact, I got on the bike to take a short ride ?to take my mind off it?, that night and wound up 100 miles away, an hour and 10 minutes later.

Valve choice: Thanks to reading this forum and other sources, I?ve already made a choice: Make Mine Bovine. This has caused some small dissention in my family-I have a nephew (Pharm-D) that just started working at a Coumadin Clinic and says (loudly) I should be able to accommodate coumadin. I told him that it?s not me, and it?s not him, and it?s not my Cardio; it?s everyone else in the medical community who can?t stay current enough to cope with coumadin properly. I also told him that I take Celebrex, but he didn?t see me goin to no Celebrex Clinic. He didn?t think that was funny. My choice, no flames, please.

Synvisc: It works for me for about 4-6 months. Insurance will pay for it just once a year, of course. It is expensive, about $100 per CC. I?m told that eventually, it won?t work too well, and we?ll need to do a ?scope on the knees, after that, replacement job. Glucosamine didn?t do anything for me. I'm also getting my orthotic shoe inserts updated tommorow.

Ohio Geography: Cleveland is diagonally across the state. Cincinnati is on the river, Cleveland is on the lake. It?s about 285 miles away, and all my support system is here. Besides, we got plenty good Docs here.

I?ll keep you posted. BTW, the other day, may Cardio said that I think too much about this. I told him that I bet no one told him something like that.
 
Tom,
I doubt that anyone knew for sure that you had a BAV at the age of 11. Until they get in there and take a look at it, docs normally don't make that call.

Another thing, that's a high gradient for the 1.7 opening. I'm assuming 70 was peak, but I think I would ask some questions concerning it. Did your report include the velocity?

I'd keep asking questions until you get answers that jive. Maybe the second opinion will give you that!
Good luck!
Mary
 
Tom,
You are correct - we have plenty of great doctors/surgeons in Cincy. I would never go out of town for cardiac care. I had my last surgery at Jewish (the old location) and the care was top notch.
Flames for your valve choice - never once someone has made their decision. The heat happens during the discussion phase when all sides are presented (sometimes with heads on platters ;) :D ;) ) so an informed decision can be made. It sounds like you have solid reasons for your bovine choice and now you can focus on other things. Congrats on getting that out of the way.
I wish you well and have no doubt you will do fine.
 
Tom,

I'm betting your valve opening figure (AVA) is incorrect. It would need to be below 1 CM² before it would be a factor. Perhaps it's .7 CM². It would also have been too early to get two Cardios to agree that a cath is necessary at 1.7 CM².

Generally, surgeons like to do bypasses as long as they've got you open. You can always stent later, if you start closing up again. As you're "only" 58, the mortality figures they gave you are probably a bit premature: your odds are likely somewhat better than that.

I had my AVR at 52. I chose tissue also. It means one more operation in the future, but zero restrictions. This is a frequent choice around this age, which you realize now that you have spent some time looking at your options. The survival and longevity figures are about equivalent for both types in our age bracket, with an edge for tissue valves for older patients, and an edge for carbon (mechanical) valves in younger ones.

Best wishes,
 
Cardio said that I think too much about this. I told him that I bet no one told him something like that.

Excellent! I'm gonna use that! Tom, the spirited guy who wrote your latest post is going to be just great.

I told him that it?s not me, and it?s not him, and it?s not my Cardio; it?s everyone else in the medical community who can?t stay current enough to cope with coumadin properly.

Well said.
 
Second Opinion

Second Opinion

Well, I went and got a second opinion last Wednesday. The surgeon looked at the data that my cardio sent over and told me that I need a valve, so pick one and get on with it. He favors the ON-X valve for a mechanical choice and Bovine for tissue. We then talked about shotguns and hunting dogs and mutual friends.

Then I asked him about the real question I had, ?What about the two CABG?s?? He picked up the file and went thru it rapidly again. ?You don?t need CABG?s and shouldn?t get them? he said. The first surgeon wanted to do two and my cardio said that I shouldn?t let the surgeon talk me into it. So that?s confirmed for me: no CABG?s.

The second surgeon also told me that this operation shouldn?t compromise my overall longevity, which I hadn?t heard before, as well as a lower operative mortality rate.

So I?ll be going with the first surgeon that my cardio sent me to, but he won?t get to do all the work he wanted to do. Hope that won?t disappoint him.


Tom in Cincinnati
 
Tom -
I love your attitude! I think that it will serve you well through this entire process!
I am new here - so no great advice (short of keep the attitude and stay in touch here). In fact I have learned as I have read this conversation.
I will have the TEE this week - I am assuming that surgery is not far in the future. I look forward to reading more on the discussions of valves, coumadin, well everything.......
Good luck in your future - I look forward to reading good news here:)
 

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