Overwhelmed with questions

[tigerlily]

Hello everyone,

I just got back from a meeting with Dr. Kon at Wake Forest Baptist University. I had an echo done today and he said I should have a valve replacement within 6 weeks.

His recommendation was a porcine stentless valve. He also said a Ross procedure was an option for me. He can do both. I'm not sure he does mechnical valve replacements.

I've haven't told you much about myself so far. I'm an active 53 year old mom with a 13 year old son. I'm married to a great guy and hope to be around for a long time.

Several weeks ago I saw Dr. Glower at Duke for a second opinion. My cardiologist had never referred me to a surgeon but I felt it was time to seek out a surgeon's opinion. The last echo I had to show Dr. Glower was done in October and based on that he thought I had 6 months to think about my options (that ofcourse all changed today). Dr. Glower said I could go anyway I wanted with a replacement: mechanical, bio or Ross.

Shortly after my visit with Dr. Glower I thought of more questions. I've had trouble getting up with him and at this point really have only one relevant question - which replacement would he recommend?

I have some questions for you all. I've gone to two hospitals now and talked with two surgeons. Would it be worth it to talk to someone else since I'm so undecided. I'm running out of time and don't know if it would be better to ask my questions to the surgeons I've seen or seek out another hospital or doctor. In the past, my experiences at Duke haven't been the greatest. I'm aware that they have a great reputation and because of that I'm considering them. Has anyone had surgery at Duke recently? If so, who was your surgeon and what was your experience? I'll have to say that WFBU seemed a lot more patient friendly but I don't know how much that counts for right now.

I have a question about stentless valves. Do they always require the aortic root to be replaced? I saw a post here that seemed to imply that this is the case. If your root is healthy, would this be a bad idea?

If you all have any thoughts on what I should do next, who I should see, experiences with Dr. Kon or Wake Forest Baptist, anything that might help me move forward I would greatly appreciate it.

Thank you so much.

 

[bvdr]

Hi,
I had MVR at Duke with Dr. Glower as my surgeon, August '03. I really like my medical care I received there didn't care quite as much for the nursing care. I didn't have a choice of a tissue valve since I already had atrial fib and was on coumadin anyway. He is an excellent surgeon. I know he is a specialist with the less invasive techniques but I've never looked into his experience with the Ross Procedure so I would check that out before I made a decision.

Duke would be a little closer for you wouldn't it? I live down the road from you in Pinehurst but once I was discharged, he was comfortable with my follow-up care being done right here.

My PCP actually suggested Dr. Chitwood at Eastern Carolina but my PCP doesn't have the very high opinion of the fellows up the road as most do. He ran into a few instances when he felt his patients were being treated and managed for the convenience of the doctor rather than the patient. He assured me however that he had never run into that with the Cardiology/Cardiac surgery physicians.

I never talked to another surgeon and at the time I went to see Dr. Glower I wasn't looking for surgery yet but was wanting to find out if a valvoplasty would be possible. He sent me to a colleague to have me evaluated but I wasn't a candidate because of other cardiac problems. That MD referred me back to Dr. Glower and said I wouldn't find a better surgeon anywhere. He made the call for me to get me put on the schedule. The office later called to give me an actual date. Everything was so casual appearing but my knees felt a little like jello and I did shed a few tears after hanging up the phone.

I know Wake has an excellent reputation as well but I have no first hand knowledge about Wake. I think we are just so fortunate to have such good choices in NC.

Make sure any physician you choose is on your insurance plan and get your pre-approval just to be safe.

Some of your other questions I can't help you with but others will be along that can. It's nice to have you with us. It's a tough time for you right now but many of us feel like the hardest part is the wait.

 

[RCB]

6 weeks

6 weeks

Tiger,
I know you must be scared, but don't worry those dates are rarely set in
stone.
May I suggest you read Twobagto's famous writing in the reference forum. He is a superb writer and very fair and even handed. If you still
have questions afterwards, post them and he will be along to answer them.
In my opinion, he knows more about tissue valves than most cardiologist and some surgeon with their bias.
Of course, you can beat Nurse Betty first hand advice either.

Good luck and I'm sure you will make the right choice for a healthy life!

 

[Marguerite53]

Hello. I'm 52 with 3 college aged kids and am probably going in for my BVR in April. I am surgeon shopping too. At my first meeting, the surgeon said he would put in anything I wanted but wasn't keen on the stentless for HIM to use since he personally had trouble with them not being easy to handle (they have no rigid framework, or something). Please be sure that whomever seeks to give you a stentless is very experienced with it. I know they are very successful for some, so not trying to deter you.

I have recently heard of remodelling the root. I don't know for sure what that is, but I am going to ask about it at my visit with surgeon #2 on friday.

I'm curious as to why a tissue valve was recommended. Those of us in our 50's are so often encouraged to go mechanical.

JCDavis82, (Joe) here on the forum, just had a double valve procedure at Duke and had a very good experience. He is a law student, so quite busy I suspect. I know he checks in frequently so you might want to PM (Private Message) him so that he doesn't miss your postings.

Keep us informed! Good luck. Stay positive.

Marguerite

 

[geebee]

Welcome.

I am sorry to hear you have to have surgery but you have found the right place for support.

The one question I would also have is the surgeon's apparent elimination of a mechanical valve for you. At 53, it is more than extremely likely that you would never need another surgery. If you have a tissue valve implanted you would need at least one more surgery and at an age when recovery would be harder.

Whatever decision is made, I wish you well and hope everything goes smoothly for you.

 

[tobagotwo]

A stentless valve does not always require the root to be replaced.

Recently, it is popular for the Medtronics Freestyle to be cut down to do the job. In this style of use, the root is not replaced. The Freestyle has advanced processes used for fixation and anticalcification, and thus qualifies as a new-generation tissue valve (unlike the Toronto SPV, which still lacks anticalcification treatments).

There is no evidence that it will outlast the Edwards bovine pericardial valve, but it is being marketed heavily by Medtronics in lieu of their flagship Mosaic valve, because the pressure gradients compare more closely with the bovine valve, and the Mosaic's are somewhat higher. However, heart remodelling after surgery is equivalent with all of the valves, so the perceived advantage may have more value to marketing than to heart recovery.

It's a good valve. It simply lacks a convincing history for longevity vs. the bovine valve. At your age (which is also my age), any of the three is fine.

I would personally consider a valve that doesn't last quite as long to be a better strategy for the early fifties. If your valve (and your basic health) lasts 15-18 years, you're still young enough to rebound reasonably well from the next replacement. A 25-year valve gets you to the average lifespan, but leaves you in need of a replacement valve at 78. Nobody plans to do jsut the average.

It is fairly likely that catheter-borne replacement will be the technlogy then, but it's best to plan for what you're sure of instead.

Best wishes,

 

[sfconstrct]

tobagotwo

tobagotwo

Tobagotwo, I have been very impressed with your knowledge, are you in the medical profession of just a self taught valver? Anyway I saw the reply to Tigerlilly. Anyway I have posted before I am sfconstrct.

I am in the middle of surgeon shopping, I have had all the test, echo, stress echo, nuc echo, angiogram, recently cat-scan. Angiogram went great, heart muscle, arteries, other valves very good. Been three years since my last echo, had a dizzy spell playing full court basketball pretty hard run. Anyway went back to cardio. Valve substantially tighter heart size up some but still in normal size but upper end. I think the gradiant across the valve is .09 indexed to .04 or 5. Anyway Cardio says it's good time not to early not too late, while I am strong. No spells since still go to the gym and workout just don't push it keep the cardio bout 120 or so. Anyway sorry for the history you probablly my previous post bout valve. The surgeon (first one Yokoyama, St. Vincents L.A.) does a ton of valves said bout 200 year but was kinda hard to communicate with anyway. He suprised my by saying he thought my arotic root look big or actually drew it like it had a bulge thus the cat scan haven't heard the results. Anyway finally my question I saw in you reply to tigerlilly that you mentioned the bovine valve and something like 25 years. I am 50 and very active. Other than the suprise about my arota yokoyama also said he felt comfortable the the new bovine valves would last 20 years. I was all set to have to go mech. I am going to see another surgeon Vaugn Starnes USC. I want to see if he also agrees with the longevity of the new bovine valves sounds like you feel they will last along time. I think I would go that rout if I felt it would last 15 or better and hoepfully like you said the new valve could be done via catheter. Is it true about the new bovine valves? The longevity? Are there particular ones I need to know about? Are all bovine valves the same? Thanks sfconstrct in so. ca. I intend to select a surgeon and set the date probablly within the next month for surgery. Thanks again.