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jjputz

Two days ago I went to the Cleveland clinic for Post operative instructions; CT scan, Chest X-ray and blood work in preparation for a Aortic valve transplant. I went in today to talk to the surgeon at the Cleveland clinic and now I?m kind of confused and could use some advice from the group.
I?m a 44 year old male with a bicuspid valve (scarred and calcified) with aortic insufficiency.
I?m sure the surgeon was busy today I had to wait 4 hours to see him. He walked into the room and asked me why I was there today. I told him I thought I needed a new AVR and asked him if he saw my chart ? and what the test results were from 2 days before.
Previously when I went there the report stated my Aorta was 5 cm or larger. The surgeon told me the CT scan showed that the Aorta was only 46 mm which is borderline for Open heart surgery. He said that the opening was to large for a Perimount Magna valve which I wanted. He said he could put a Dacron or velour tube in but that it would be hard to replace down the road at my age ? He suggested a Homograft and said when the valve wore out it would be easier to replace. ? Which sounded find to me because I didn?t want to take Coumadin.

But then he said it really didn?t have to be replaced right now but he could do it if I wanted him to. This confused me because two cardiologists from different clinics said it had to be replaced and the surgery was scheduled for Jan 17th.
I was scheduled off from work, Hotel reservations for my family, my sisters flying in from Fla. I mean I was all ready for it.
He told me that other surgeons would say to have it replaced now but he said he says he takes a less aggressive stance and thinks I should wait until it?s necessary.
He said I only had a 3+ aortic insufficiency and that I only had around a 1% chance for an aneurysm I had no signs of heart enlargement and no clogged arteries. He said I should come back in 6 months for another CT scan to make sure things don?t get worst.
He said I could play tennis, swim, walk and run but not lift anything heavy but I shouldn?t lift more then 10 lbs ? 10 lbs that?s only a sack of groceries.

As far as symptoms go I feel dizzy once in a while ? and kind of icky feeling but I haven?t passed out.
At the time I was thinking great I don?t have to get hit by the 500 lb gorilla, But now that I?m home I am thinking I may have made a mistake, Maybe I should of said go on with it. If I?m not suppose to lift 10 lbs something?s wrong
And how long can I be that careful? I am not sure what to do ? I?m so confused. :confused:
 
Honestly, I'd proceed with the surgery. I think he's being to conservative which is good in some respects, but I was in the same boat in 95 and I did develope an aneurysm and it blew in no time. If your anywhere near 5cm which I understand your at 4.6 now, I see no point in waiting for possible disaster. It's a tough call, but if you already had things planned out, I'd go for it.
 
I would definitely agree with Ross. He speaks from a very harrowing experience. With two cardios saying you need it, and the one dissenting cardio saying "no" but adding the weight restrictions, I'd be inclined to have the surgery. I can't imagine why he's being so conservative. This is just my opinion, and I'm sure others will be along shortly. Best of luck to you.
 
Curious

Curious

Who's your doctor there? I'm waiting for my second opinion stuff to come back. I'm on pins and needles to see what they'll recommend for me (I have aortic stenosis and am anticipating an aortic valve replacement sometime in the future)
Carolyn
 
I would have to agree with everyone else. I think I would get at least one more opinion and see what they have to say.

I had my first OHS at Cleveland Clinic 21 years ago. My second OHS was 3 months ago at Toledo Hospital, surgeon was Dr. Micheal Moront. Toledo is only a couple of hours from Cleveland and the Toledo Hospital has become one of the premier hospitals for OHS and Dr. Moront is one of the best. Just a recomondation.

Good luck on your choice. BTW, I had the Dacron tube along with the Stenless Porcine valve put in. I am only 37 (well 38 in 3 days) and we know I will be under the knife again at sometime. My doctor gave me no worries about the Dacron and its replaceability.

Good luck
Jeff
 
I actully live in waterville which southwest of Toledo - I belong to the toledo Sailing club - a cardiologist at the northwest clinics was the first one to suggest the valve replacement - but then again he suggested it ten years ago - Maybe 1 more opinion couldn't hurt, right now I'm leaning towards the go ahead. Thanks for the suggestion maybe I'll call Dr.Moront
 
Wow we are neighbors!

I am just down the road in Bowling Green.
My cardiologist is Dr Barry Deran. He is located just up the road from you in the medical building next to St Lukes.
Here is his address:
Deran Barry P MD
5705 Monclova Road
Maumee, OH 43537
419-897-7611

The information on the surgeon is:
Moront Michael MD
2109 Hughes Drive
Toledo, OH 43606
419-291-2077

There is at least one other member here that had her surgery at Toledo Hospital and used Dr Moront. If you PM her she will talk to you too. Her username is Elphie

Welcome and good luck, if you need anything let me know I am just down the road and glad to help.

Jeff
 
Agree with Ross

Agree with Ross

Hearts rarely improve with out help. You can't do better than CC. I realize it was a shock to be told to wait by your dr. but sometimes you have to tell
them what is most important to you. Good luck to a fellow NW Ohioian!
Watch out for the rising water :D :D
 
I also agree that another opinion is on the horizon. It's a pain, but all this qualifies as mixed results. It's confusing - and we're used to hearing about confusing diagnoses.

Sorry they can't fit the CEPM, but it sounds like it may not be the best option for you right now, even with a dacron sleeve. However, he has resurrected the homograft idea in which you were interested in the first place. You still have a shot at it, if that is what you decide is important.

To me, the most critical thing is to determine how safe your aorta is. He's saying 1% chance of bad things, but then he says don't lift anything over ten pounds. Kinda hedging his bets, isn't he? Or is that strictly in response to your lightheadedness symptom?

Sounds like you're not an emergency yet, which is good. Still, keep track of your heart chamber sizes and don't wait until you have too much damage. We won't be there at your next appointment, but we'll be with you in spirit. You're in my thoughts. Stay well.

Best wishes,
 
Homograft Aorta

Homograft Aorta

Hi,
Regarding Dacron versus homograft for the aorta, perhaps I can help out.

Dacron is very strong, flexible, compatible with the body, and will last longer than a human life span. A homograft (human) aorta is foreign to the body, and it will calcify heavily with time. There is a section that describes when the homograft solution might be used on the Cedars-Sinai Aortic Surgery Program web page. Here is the text, quoted from the web page.

"Homograft Technique
Homografts are the most resistant to infection, making this the preferred technique for the treatment of aortic root infection and endocarditis at Cedars-Sinai. The major disadvantages of a homograft include issues with the longevity, the size and the length. Since homografts depend on human donor availability, there is no assurance that there will be a sufficient quantity of the different sizes and lengths that may be needed. Regarding the longevity of this solution, chronic rejection causes severe calcification of the aortic wall (which becomes like a "lead pipe") in 13 years. To a lesser degree, the aortic valve leaflets also degenerate. Homografts may be considered for use in an elderly patient with a life expectancy less than 15 years for treatment of a heavily calcified (porcelain or egg shell) aorta in lieu of aortic valve replacement and endarterectomy of the aorta. "

As outlined above, for someone young, who does not have any infection issues threatening their life and has a life expectancy beyond 15 years, the homograft solution does not have the longevity needed. For someone not expected to live long enough to develop a "lead pipe" it might be the right thing.

Here is the link to the Cedars page, where there is information about bicuspid aortic valve disease
http://www.cedars-sinai.edu/aorta

And here is the link to the Bicuspid Aortic Foundation

http://www.bicuspidfoundation.com

It is very important to know the exact size of your aorta, and there should not be significant variation ( 5 cm one time and 4.6 cm the next). It can be highly dependent on who measures it.

I hope some of this information is helpful.

Best Wishes,
Arlyss
 
rescheduled surgery

rescheduled surgery

Well my thoughts are I don't feel that great. And I have to have the surgery done somtime. Work has issuses with me not being able to lift and even around the house I'd probably stress myself - so I reschedualed the surgery for Feb. 7th - but in the mean time I can always get a 4th opionion. Should I go see another cardiologist or a surgeon - or both? :rolleyes:
 
I would start with the cardio. See above for the one i recomend that is just up the road from you.

Good luck

Jeff
 
I agree with the posts here. You need to have the surgery done soon. The surgeon is playing a game with your life that you can ill afford to lose. Get another surgeon quick. And stick with the date set if possible. Good luck and keep us updated.
 
I agree with the surgery sooner rather than later. If it's a given that surgery is in your future, and with a mortality rate of only 2%, you're better off getting it done when you are feeling good. Take it from someone who's doctors waited until I was really debilitated, it's a much longer road back doing it that way.
 
2nd opionion

2nd opionion

Tried getting a 2nd opionion from Dr. Deran Barry P MD but his nurse said he doesn't do 2nd opionions. Anyone know a good cardiologist in northwest ohio that does 2nd opionions?
 
opinions

opinions

jjputz said:
Tried getting a 2nd opionion from Dr. Deran Barry P MD but his nurse said he doesn't do 2nd opionions. Anyone know a good cardiologist in northwest ohio that does 2nd opionions?
Have you tried anyone at MCO?
Also St. Ritas in Lima has the largest volume for heart surgery in NW Ohio according to Heath Grades website.
Good luck! :)
 
sorry, i didnt know they didnt do second opinions. Its a shame cause he is good and he is near you. I dont know anyone else.

Sorry, good luck
 
I'd be more inclined to seek a second opinion from a SURGEON than a cardiologist, especially since you have so many surgical issues / options that you want to evaluate.

'AL'
 
jjputz:

I'm a little confused on what you said regarding Cleveland Clinic...

You said you went in for post-operative testing for a scheduled (as in not done yet?) aortic valve replacement?

Ok, let's assume that was typo.

If it was pre-operative testing and they had already scheduled surgery for you, why didn't the surgeon already know what they were going to do?


From what I know (and based on personal experience) the folks at Cleveland Clinic use a team approach in their cardio-thoracic surgery which means a number of cardiologists and surgeons are all in on conferences where they evaluate each patient's test results and decide on a course of treatment. I can even tell you the days that they meet to do this, unless they've changed their schedule since I've been there...

Just "curious" that you walked in to see your surgeon and he didn't know what, apparently, was already scheduled to take place...


Who did you meet with? It seems odd that you would have been told to get all those arrangements in place for your surgery when the surgeon didn't know you were sceduled to have an aortic valve replacement. Or at least didn't think you needed it yet.


Aside from that, Cleveland Clinic is top notch, probably one of the best facilities for adult and pediatric heart care in the United States, if not the world... They're always scoring at the top of any hospital care assessment on a number of various criteria. They're not perfect, but they seem to be as close as you can get year after year. A great team, a great approach, a great facility for heart surgery.

And yeah, I may be a little biased there, but they saved my sorry arse and I was (and still am really) a very complex case for them.
 
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