Need help in talking with my surgeon

[williamhelton]

Greetings my name is bill. I will visit the surgeon for the first time on June 21 so I still have time for feed back. I am retired from the U.S. Army and I have military health insurance. I will have to face the bureaucracy and the only thing they want to do with our money at this time is take care of their war. Has anybody dealt with Tri Care health ins.? How can I convince my Army Doctor to give me the ON-X Valve? I am 63 when I seen my cardiologist in August 2006 he said when its time it would be tissue, I am 62 yrs old and will be 63 in August 2007. I have a slim chance to get to go to a civilian Doctor. Please help me soon. Thank you.

 

[Ross]

Bill welcome. I'm not sure of the militarys practice, but you should be able to have any valve you choose. I'm going to let some other veterans address this as it's out of my league. One year difference in age shouldn't make a difference. If you want a tissue valve, demand it. If you want an On-X demand it.

It is slow here on the weekends and more so today because of fathers day, so give it a bit of time. I'm sure someone will come along with more information.

 

[geebee]

Welcome, William.

One of the things you will learn is that cardios and surgeons often have different viewpoints. I would defintely let your surgeon know what valve you want and make him explain the choices and why he might disagree with you. Perhaps he will agree and there will not be an issue.

Many people feel tissue is the way to go at your age. However, I am a firm believer in long life and I expect to live well past 100. Tissue valves are lasting up to 20+ years and, at 62, that would put you over 80 when you need a replacement which, while not an impossible scenario, would be tough from a recuperation standpoint. I think the On-X is a very good choice for you to make as it should last your lifetime barring any unusual issues.

Be sure the surgeon knows your reasons for wanting the On-X so he knows you have done your homework.

Good luck.

 

[Marguerite53]

Welcome to our site! While it is very important to get the valve you want, please keep in mind that the surgeon should be familiar with the valve he is placing in your heart. There are significant variations in the structure of these things and if your military doctors have no experience with the On-X you might just want to choose to be happy with a tissue valve if they've put in hundreds of them.

Good luck and please keep posting. There will be others along to comment after this holiday weekend, I'm sure.

Best wishes!

Marguerite

 

[RCB]

Slow down

Slow down

William you might be getting upset for nothing. In my experience a cardiologist has nothing to say about the type of valve used. The surgeon is the one who decides and that decision is usually made consulting with a pt. I'm not sure the time frame you are looking at to have surgery, but you and your surgeon might decide you can wait a few years. Why don't you share with us why you don't want at tissue valve at your age and perhaps some of our tissue valve members might be able to calm your fears?

You came to right place for an answer. Good luck!

 

[hensylee]

I cannot comment on your issue but I do want to welcome you to VR. Stay with us for any questions you have and you probably will have lots more as time passes. Blessins....

 

[Arlyss]

The experience of the surgeon - his/her actual "hands on" abilities with the valve that will be implanted - are important.

Given that, how much freedom you have to choose the surgeon also translates into the comfort level that both the surgeon and you will have in the valve chosen. If you have limits in your choice of who will perform the surgery, it has implications. Generally, surgeons develop their skill by doing over and over the same thing with their hands and perfecting their technique.

Do you know why the cardiologist was specific about tissue versus mechanical in your situation? Whenever a physician makes a statement like that, the reason for that thinking should be explained. Is there something about your medical condition that makes a tissue valve more desirable? And "tissue" is a general category of valve - what specific tissue valve was it? Why that particular valve? What statistics are available for that valve in someone your age? (You want the actual proven track record based on how long it has been used in human beings, as opposed to projection based on lab experiments.) Again, reasons should be given for whatever is being suggested for you.

You may not be able to ask the cardiologist now, but you will soon see a surgeon. And when you do, getting an explanation for the solution being offered is important. Find out the exact name of the valve(s) being discussed so you can research them further. Since you are interested in a particular mechanical valve, going over why you would like this valve with the surgeon and getting his/her thoughts on it are also important.

It is very helpful to have someone else with you (family, trusted friend) at these appointments as there is often so much covered it is hard to listen for the answers.

Listen carefully for general statements like "the surgeon will determine in surgery which valve to use." If that is said, you want to know the different choices the surgeon will choose from - there are a limited number of them in any given hospital. This will avoid going home with something in your chest that you are not familiar with....

Best wishes,
Arlyss

 

[dtread]

Bill, you need to press for what you want

Bill, you need to press for what you want

Bill, I just went through a somewhat similar scenario to what you are going through. I had to have AVR and the hospital that I was having the surgery done at uses St. Jude. From research I did I knew I wanted On-X. I was on a short time fuse also prior to surgery, but contacted Medical Carbon Research Institute for additional info on hemodynamics to back up my case. The surgeon was initially pretty resistant but eventually consented. I'm a Federal employee and have never been in the military, so not sure how TRICARE works. Recommend you contact Catheran Burnett at MCRI at [email protected] Also, I think you are making the right choice to go mechanical valve vs biological. The biological valves last perhaps 15 - 20 years, but you have to figure the performance of the biologicals has to be degraded in the later years. Also, you don't want to go through surgery again, and you don't want it hanging over your head that you might have to go through it again. It was the worst experience of my life, and was both physically and psychologically traumatic and draining. The anti-coagulant is not that bad; i.e., certainly not as bad as another surgery in my opinion. -Dan

 

[WayneGM]

Hi Bill, I don't know anything about the military health care system in the U.S. so can't help you on that question. However, in my case, my Cardiologist only flagged that I needed surgery and we discussed the surgery and options in general terms. However, he left it to the Cardiac Surgeon to decide on the specific surgical recommendations, timing, etc. I echo the other's advice...if you want a specific model of valve, be sure the Surgeon has had experience with it. Good luck.

 

[tcopel]

Hello Bill. Glad you to have you on board at VR.
I recently had heart surgery and heres what I've found regarding your question. Some docs are dogmatic and "impose" what they feel is in your best interest on you. Other docs are very open to discuss the pros and cons of your options. Docs have a variety of personalities like any other group of people. Hopefully, you have the latter kind of doc to help you.
I'm not sure if Tricare will allow you to find that doc that will work with you, but if not, your best bet is become as knowledgble as you can on your medical condition and your treatment options. In that way, you can speak with confidence with the doc about WHY he choose what he did. You can discuss why you choose the Onx and why you feel it is in you best interest from a medical perspective. Some docs, like any other profession, have a kneejerk reaction and dont really consider all their options or even validate the reason why they chosen certian avenues of treatment. If you have valid medical points to your way of thinking, then he may be open. BUT you also have to listen to why he thinks the tissue is in your best interest. For instance, are there clear cut risks in your medical background that would put you at high risk for side effects pertaining to coumadin, ect.
Your best thing is to become knowledgable (your brethren here on VR are great as a resource), be patient and work with your doc. God Bless

 

[Mary]

You might send a private message (PM) to Gadgetman. He had to deal with Tricare when he had his valve replacement.
Offhand, you maybe limited to the cost that the military is willing to spend on a valve. Valves vary in their cost, and if the On-x is more expensive, you may be out of luck. I know it stinks, but there it is.
We have a son who spent five years in the Marine Corps; his name is the same as another poor guy who currently is in the Army, but they do have different initials and obviously a different address. About a year ago, we started getting mail from Tricare for this other person. I notified Tricare that we were getting some else's mail, and they needed to get it corrected. They said they couldn't! That poor man, who apparently has a wife and three dependents, wasn't getting the bills for his share of the payments, and I assume they weren't paying bills as a result.
I talked to the mailman who delivers our mail, explained the situation, and now he's sending them back in hopes that Tricare will be motivated to locate the correct man and his correct address.
My point is, the military system can be a huge network nightmare, and getting them to approve a new, more costly valve, maybe something you will want to reconsider.
I hope I'm wrong!

 

[Jim P]

Bill,

I am retired military and had AVR done about 4 months ago. My health insurance is TRICARE Standard, and I had absolutely no problem with the bureaucracy. In fact, it could not have been easier. The heart surgeon's office made all the arrangements with TRICARE, and they did not interfere at all in the surgeon's plans. Likewise, for the follow-on appointments with surgeon, cardiologist, pulmonologist, and cardiac rehab. I believe total cost has probably reached close to $200,000 and everything (after reaching the catastrophic cap) has been covered.

 

[Superbob]

Bill, Ideally, the choice should be yours. I will echo the others in saying my cardiologist made no recommendation on valve type at all, and my surgeon explained all the options and left the choice to me. The military insurance may be a factor. I have no knowledge on that.

But I do know this: I was 63 at the time of my surgery, and selected tissue, and am very happy with it. Of course, there are pros and cons, but I am wondering why you seem to be down on the tissue option from the get-go. In we older folks, it's considered a pretty strong option.

 

[ALCapshaw2]

The On-X valve has been in use in the World market for over 10 years with over 50,000 implanted to date. They have had FDA approval in the USA for 5 years.

There is an impressive study from South Africa where On-X valves were implanted in a largely non-compliant population resulting in a significant reduction in Stroke events attesting to lower propensity to produce Clots compared with other (older) mechanical valves.

Any surgeon who claims not to know of the On-X valve has his head in the sand.

'AL Capshaw'

 

[dtread]

Convincing the Surgeon

Convincing the Surgeon

I knew that the hospital where I was going to have my surgery uses St Jude almost exclusively. I had researched various valve options as I'm a research nut type person and want to know everything I can about something . The more I read about On-X the more convinced I became that I wanted On-X. Having a congenitally deformed bicuspid aortic valve, and being very athletic and fit prior to surgery, I was concerned about valve performance to a great degree. I could see that St Jude looked like a good option and the only real question I had about On-X was valve hemodynamics because the info I had gathered did not completely satisfy me. I contacted Medical Carbon Research Institute (MCRI) to inquire about some additional hemodynamic info. As it turns out, I got a call from MCRI about half an hour before I was to leave for my appointment with the surgeon. MCRI emailed me the info I was looking for, which was more than satisfactory. When I met the surgeon and indicated that I wanted to go with the On-X, at first he dismissed it, indicating that "we use St Jude, and its a good proven valve, etc". Well, I asked him some more questions, and just kept quietly insisting that I wanted to go with the On-X. He finally indicated that he would consider it, but would make no promises and also asked me "whether I wanted to be the first to go with On-X" (i.e. at that hospital). I indicated yes, and he took the info on On-X that I provided him, including contact info at MCRI. MCRI sent in all the sizing tools, etc. that would be needed, and even sent a company rep in for the surgery to assist in the valve sizing during the operation. As it turns out, I got exactly the valve size (21mm) I had predicted would correspond to my body surface area (BSA), and got the first On-X at that hospital. I am more than satisfied, and am more convinced now than ever that I made the right choice. Bottom line, it was not easy to persuade the surgeon, but if you stick to your guns you can get what YOU want. After all, its your heart and your life, and you're the one that is going to have to live with it, not the surgeon. Whether you go with biological or mechanical, or pig or bovine, or On-X vs some other mechanical valve is a choice that you, the patient, can make, and can have an influence on. Just do your research, and make sure you are making the right decision for yourself and your condition. Then stick to your guns when it comes to the discussion of the surgery. If you are not satisfied with the information you have from the various valve manufacturers, then I would recommend that you contact them for additional info. Then make your valve selection based on the best information you have and your individual situation (and a bit of gut feeling) . -Dan

 

[williamhelton]

Thanks to all. Every thing is ok

Thanks to all. Every thing is ok

thank you all for you help. what i asked for was no probelm.

 

[jerseysue]

Reply to Bill -Valve Selection

Reply to Bill -Valve Selection

Bill, I don't see how being in the military etc. should have anything to do with what type of valve you select or can have. And at your age you could well live into your 80's or 90's and a tissue valve isn't expected to last that long. So I would go with the valve you want. As been mentioned, every Dr. has their opinion on this, but it's up to you: it's your body and your paying for it, so get what you want. All my best in getting your preferred treatment.
Sue Sommer
Aortic valve replacement 8/1993, St. Jude Mechanical