where to start? or WHEN?

[tobagotwo]

Welcome to the site. There are lots of good people here.

You have as much or more aortic regurgitation (insufficiency) as you do stenosis. That means leakage after the valve is supposed to be closed (that's your leaflet flapping in the backflow). That tends to build up extra venticle quickly.

5.7 is the upper level of "normal," so you've just gone out on the ledge a bit with 6.4. There are other numbers (like gradient and effective valve area) that play into the decision as well as any symptoms, which can be a very pivotal factor in the decision. Plan on being less energetic as it goes along, and try to avoid vacationing in places at high altitude (definitely not the winter to ski in Denver).

I would get a surgical opinion if you can. At this point, unless you are unsatisfied with your cardiologist, she will become largely extraneous once the surgery is scheduled, and will pick up again for your recovery. At that time, you'll have a good opportunity to determine whether to stay with her long term. She's already done right, by telling you to be thinking of surgery. She's not one of those who tries to save you from the operation that will save you.

Best wishes,

 

[river-wear]

FYI re Ross Procedure at Cleveland Clinic

One of our members posted that CC is no longer recommending the Ross Procedure because of a high incidence of "premature failures".

'AL Capshaw'

I saw that too. Do you know a source for that statement? I looked on their website and didn't see anything about it.

 

[ALCapshaw2]

I saw that too. Do you know a source for that statement? I looked on their website and didn't see anything about it.

Unfortunately I don't recall who made that post. You may want to call CC and see if someone can answer that question.

IF you are still considering a Ross, I would recommend that you find someone who does a LOT of them and has a Good Long Term Record.

Keep up your research until you feel comfortable with a First (and Second) Choice.

Best Wishes,

'AL Capshaw'

 

[river-wear]

aha - I found it, AL! Well, I might have seen a reference to it somewhere else, but I think this is what you were thinking of:

Look for the post made by ctyguy on 2/7/09 at 9:19am

an excerpt:
Someone asked about the Ross Proecedure and Cleveland Clinic. My surgery was at C.C. and my surgeon, Gosta Petterson, told me that the re-op rate was over 20% within 10 years and that is why he does not recommend it any longer. He logic is if all you have wrong is a bogus AV then go with a tissue or mechanical and stay a one valve patient. The Ross procedures makes you a 2 valve patient. Thats what conviced me to be more of a "traditionalist".

The more I read, the more I realize there is no way I'm going to be able to wait to do ANYTHING until July. Next week my newer cardiologist should have my history from the old one, so I can at least see how my echoes were tracking long term. I think I've always been in the high 5 range for the left ventricle, but am still anxious at the thought the current doc is only working with two test results. (She's okay but her staff is horrible. Last year I called to see if they got my records from the old doc and they assured me they had. This year the request never got through - again - and I had to get the records sent myself.)

P.S. My apologies above for calling Valerie "Vicki."

 

[ALCapshaw2]

GOOD FIND River ! (How did you do it?)

Dr. Pettersson is one of the Best of the Best in the Country (or World even) from what I read.


FWIW, MANY of us get copies of ALL of our LAB and Test Results.

I made a Spread Sheet to track my EchoCardiogram Reports. This way I was able to show my Cardio a Progressive Change that he had not picked up on just looking at the latest report. (FWIW, Many Cardio's seem to take the attitude that your latest report tells them everything they need to know).

'AL Capshaw'

 

[Bill B]

Stanford is an EXCELLENT Heart Hospital and Dr. Craig Miller is one of the Top Surgeons in the West, if not the country. Several of our members have used him with excellent results, including people with complex cases involving surgery of the Aorta. You can find their posts by doing a "Search" (see the blue line at the top of the page).

Give Dr. Craig Miller a call. You just might find that 'one stop shopping' is enough after meeting him.

'AL Capshaw'

I second AL's remarks about Stanford & Dr. Miller to the nth degree. This man has unmatched credentials, specializes in valve and aorta surgery and saved my life last week. I worked in healthcare for decades and had close contact with many, many very prominent physicians, and my initial consultation with Dr. Miller was one of the most engaging, compelling experiences of my life. It's kind of hard to describe him. He's a cowboy in style and personality but I got this sense I was in the presence of a Zen master of valve surgery.

 

[tobagotwo]

Well...there are a couple of considerations for the Ross Procedure. The reops are likely mostly for the repalced pulmonary valve, or for new aortic valves that were chosen from candidates that weren't the most likely to succeed.

The pulmonary valve is often replaced with a human donor valve, which usually has a rejection crisis within a couple of years. If it passes through that crisis (most do), the replacement pulmonary valve will usually last for many years after that. If the valve doesn't pass successfully through the rejection crisis, it will need to be replaced. This is a generally less dangerous surgery than the aortic or mitral replacement, but still a big deal (especially if it's you). More recently, surgeons have been using animal tissue valves instead, as they cause no rejection issues and seem to last many years longer in the low-pressure pulmonary position than they do in the aortic or mitral positions.

A percentage of patients with bicuspid aortic valves have progressive tissue disorders that can accompany that defect. If you have that type of tissue disorder, the likelihood that your pulmonary valve will fail in the aortic position in a fairly short time is greatly increased. For the most part, those are the aortic redos referred to above.

You don't seem to have a bicuspid valve from your description, and may not have any other congenital problems, other than the original issue. Your doctors should be considering that question, if you are looking at the Ross Procedure.

When it works, the Ross Procedure has the best outcome of the big three (mechanical, tissue, Ross). When it doesn't, it tends to be more problematic than the other two.

As far as never needing another operation if you have a mechanical valve, well...the percentage of reoperations on mechanical valves seems to vary by study: a study funded by St. Jude and prominently featuring the Regent model puts it at about 6% in 25 years. Other studies have found percentages as high as 25% in 20 years. The results may be skewed by the inclusion of older valve types or the exclusion of convenient risk groups or causations. The reality is likely somewhere in between, But reoperations for mechanical valves are real, as we have seen a number of them pass through this site.

Certainly at a young age, a tissue valve is likely to result in a lot of reops (at 42, I would say minimum three, probably four). The last one (or maybe two) would likely be percutaneous (through the artery, via catheterization). I've had two, and certainly plan to live long enough to need another. Not everyone would agree that I'm entirely sane, though, or would be willing to go through that intentionally.

Sort of a Hobson's Choice at your age, except that any one of the options will save your life.

Best wishes,

 

[Gail in Ca]

I think it's a great idea for us Bay Area folks to meet sometime!
Of course to newbie, I would recommend Stanford and Dr Miller. I have used him for my last 2 surgeries and have felt completely at ease with my decision. Stanford Hospital has always treated me extremely well. After surgery in ICU, it's 1 on 1. Then, I believe it's 2 to 1 or maybe 3 to 1 for patient to nurse ratio. The nurses are very competent. This time I had a Drs assistant do a couple procedures and they did them well. And the students don't really bother you. If you want to participate, you say yes. I did because I found it interesting and I know they need to hear real heart sounds and patient stories.

 

[river-wear]

Wow, you guys and gals are awesome. I feel so much better having company!

AL, in answer to your question about finding the reference, I used Google to search the site. After a few false starts, this combination of terms worked:
site:valvereplacement.com "cleveland clinic" "ross procedure" "not recommend"
There were still a few choices to sort through but it narrowed things down. I love your spreadsheet approach! It sounds like something I'd do.

Bill, I found it quite remarkable to read that you were posting from your hospital bed earlier! I hope you're sleeping more comfortably now. Do you know if Dr. Miller does the Ross Procedure? After reading tobagotwo's post (and doing research last night) I'm less inclined to take that route. I may be too risk averse, but it would probably be good to discuss it with a surgeon.

I like the idea for a Bay Area meet-up too! Gail, I had to chuckle when you wrote that you'd recommend Dr. Miller because of your last two surgeries. After all, I think all patients start out hoping their experience will be a one surgery thing. But as I read in another thread, someone has to be in the "unlucky 10%" (or whatever).