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TBurg18

Hi, I have just learned that I will need to replace my mitral and aortic valves due to raditaion treatment damage. I live in Midwest and want the best possible care. Right now I am leaning towards Univ. of Iowa due to HMO restrictions. Any opinions for my care? Mayo, Chicago, Milwaukee, U of Minn., St. Louis?? Thanks, Ted
 
Hi Ted - Welcome to the site; glad you found it.

There's also the Cleveland Clinic in Ohio. Some of the members here have even been able to correspond with some of the Cleveland doctors via email and such, for more specific info in regard to their personal valve issues.

There are other members here who are also dealing with radiation damaged valves and no doubt they will post a welcome to you soon and have more specific experiences to share.
 
Hi Ted, Welcome to the vr fourm. Sorry to hear your up dated news on a double valve replacement. I had a double valve replacement on the same valves you need done. I drove 800 miles to go to Stanford because it was recommended by my surgeon here in Az.
But I had PH also and needed the extra care to get over the OHS. What ever hospital you choose just make sure you check it out making sure it what you need. I too had radiation treatments when I was younger which they think lead to alot of my problems(like OHS and Lung.)Wishing you the best! Keep us up dated on what you decide. God Bless.
 
Welcome to MY World Ted!

We have close to 20 members who have had to have Valve Replacement due to Radiation Treatment Damage, mostly for Hodgkins Disease. You can find many of their posts by going to the Blue Line at the top of the page, clicking on "Search" and typing in "Radiation" or "Hodgkins".

Be sure to ask the surgeons you interview about their experience dealing with Radiation Damaged Hearts. Radiation leaves a LOT of Scar Tissue. Surgeons who do re-do's will be more familiar with dealing with scar tissue issues.

Most surgeons recommend Mechanical Valves for Radiation Damaged Heart Patients in the hope that they will not need to be replaced. Replacement of artificial heart valves in Radiation Damaged Hearts carries added RISKS to the point where some surgeons believe the risk outweighs the benefit (i.e. high risk of mortality the second time around).

MY favorite Mechanical Valves are the ones from On-X (introduced in 1996) which offer several improvements over the older designs from 20 to 30 years ago. See www.heartvalvechoice.com and www.onxvalves.com for the details.

Bottom Line: You will want to find a very experienced surgeon who does over 100 valve replacements per year along with many re-do's. These kinds of surgeons are usually found at the Major Heart Hospitals such as Cleveland Clinic, Mayo Clinic, Northwestern, etc.

One of the Down Sides of Major Hospitals is that they limit their Valve Selection (usually due to competitive bid, i.e. the Valve Suppliers who give them the best prices). Dr. Gosta Pettersson at CC is a top rated surgeon who uses On-X valves. (GOOGLE for links to his background). Dr. Dearani at Mayo Clinic also uses On-X. Dr. Bove at the Univ. of Michigan just put in his first On-X valve in a Radiation Damaged patient.

To narrow your search, you could simply call the Office of Surgeons of Interest, ask to speak with his office manager or a Nurse, tell them you have a Radition Damaged Heart and need AVR and MVR. Then ask if their surgeon has much experience with those issues.

'AL Capshaw'
 
Welcome, I just wanted to add along with Al's advice is most of the surgeons with the most experience with multiple redos are surgeons that operate on Children and adluts with Congenital heart defects, since many of the CHDs need 2,3 stage surgeries right from the beginning and more as time goes on. I would get a couple of opinions, the centers people have listed are good places to start, I know you mentioned Chicago and North western, besides Mccarthy has Mavroudis who has alot of experience with adults with CHD and multiple redos ect, aloth I heard he will be leaving for CC.
the Adult with CHD org has a listing of ACHD centers so you can check to see what hospitals have ACHD specialists but you have to register (free to see it) http://achaheart.org/for_members/clinicdirectory/index.php
 
Thanks for Info.

Thanks for Info.

Thank you all for the information. A bit mind boggling to sort it all out.

Regards, Ted
 
Hi Ted,

My husband recently had surgery for heeart problems caused by radiation/chemo treatments fifteen years ago. Let me know if you would like to talk to him about his experiences and I will give you his email address.

Sorry you have to go through this - on the other hand, my husband's health has improved so much since the surgery, it's amazing.
 
ALCapshaw2 said:
One of the Down Sides of Major Hospitals is that they limit their Valve Selection (usually due to competitive bid, i.e. the Valve Suppliers who give them the best prices). Dr. Gosta Pettersson at CC is a top rated surgeon who uses On-X valves. (GOOGLE for links to his background). Dr. Dearani at Mayo Clinic also uses On-X. Dr. Bove at the Univ. of Michigan just put in his first On-X valve in a Radiation Damaged patient.

To narrow your search, you could simply call the Office of Surgeons of Interest, ask to speak with his office manager or a Nurse, tell them you have a Radition Damaged Heart and need AVR and MVR. Then ask if their surgeon has much experience with those issues.

'AL Capshaw'
Click to expand...

I put a bug in Dr. D3eb's ear (also from UofM) about the On-x valve. I was quickly rebuffed. He reasoned that St Jude's valves also had promise to not require anticoagulation... seems like most surgeons are pretty firm about their choice of valve they want to work with. I personally feel like I should be able to choose whatever valve I want.
 
AaronJ said:
I put a bug in Dr. D3eb's ear (also from UofM) about the On-x valve. I was quickly rebuffed. He reasoned that St Jude's valves also had promise to not require anticoagulation... seems like most surgeons are pretty firm about their choice of valve they want to work with. I personally feel like I should be able to choose whatever valve I want.
Click to expand...

In an Ideal World, Every Surgeon would know Everything about Every Valve and give you your choice.

We DO NOT live in such a world.

Most surgeons comfortable with only a few specific valves as I found from interviewing several over the past several years.

The Local Surgeon who did my Bypass Surgery offered a St. Jude Mechanical and CE Bovine Pericardial Tissue Valve as his only options. One of his more recent partners likes the Carbomedics Mechanical Valve.

Another Surgeon who has made a name for himself performing an alternative type of surgery made it pretty clear that if he did my surgery, I would get a St. Jude Valve.

I would guess that only a relatively few Surgeons offer the Ross Procedure or even Homografts.

Several Surgeons seem to dismiss the newer valves (such as the On-X Mechanical and the latest improvements in Tissue Valves) as "too new and unknown". (Note that On-X has sold close to 70,000 valves since their introduction to the World Market in 1996 with U.S. FDA approval following in 2001).

I guess some surgeons want to wait until the 20 year statistics are in before changing valves. One "industry person" stated that Heart Surgeons Change WIVES more often than they change the Valves they use / offer.

Bottom Line: If you have a particular Valve you would like to receive, you may have to Search for a Surgeon who uses that valve or convince him to change. The Valve company representatives may be a good source of information in finding surgeons who use their valves. I'm sure that Valve Manufacturer Representatives would be more than happy to meet with Surgeons to introduce their products.

'AL Capshaw'
 
Hi, Update from the Heartland (no pun intended). I'll be visiting surgeons at the U of Iowa tomorrow to learn of their recommendations, game plan, experience etc. They claim their most experinced surgeon for double valve has done 27 in the last 2 years with 100% success rate. Enough experience? Thanks for your feedback and support. Ted
 
TBurg18 said:
Hi, Update from the Heartland (no pun intended). I'll be visiting surgeons at the U of Iowa tomorrow to learn of their recommendations, game plan, experience etc. They claim their most experinced surgeon for double valve has done 27 in the last 2 years with 100% success rate. Enough experience? Thanks for your feedback and support. Ted
Click to expand...

Be sure to ask him about how much experience he has with Radiation Damaged Hearts and Multiple Surgeries (a.k.a. re-do's), both of which result in Scar Tissue.

Then ask him about his experience with Post Op issues from Radiation such as Cardiomyopathy, Slow Drainage and Healing, and the usual Arrhythmias.

Also ask how many Valve Replacement Surgeries he does per year. The TOP Valve Surgeons do 100 to 200 per year.

I'm guessing that Cleveland Clinic (#1), Mayo Clinic (#2),
and Northwestern would have more experienced surgeons.

'AL Capshaw'
 
Well I made my decision to have my surgery at the University of Iowa on 8/21. Surgeon is Chief of staff, Dr. Jim Davis, and had a good grasp on my risks due to rad/chemo. He typically handles the difficult cases and does a lot of work with children. He will use the St Jude valve on the Aorta and is still pondering what to do with the Mitral. He talked about possible repair but is concern that radition exposure will have more effect down the road. I'm guessing we'll be replacing the mitral as well. I also learned that I have 60% blockage of the left main so that will be double by-passed. I'm ready to go next week and ready for a successful procedure. Thanks to everyone for your input and support and I can't wait to be a positive influence to others down the road. Best wishes and God bless. Ted
 
Hi Ted ~ I just wanted to welcome you to the site and wish you the best in the future with your valve replacements. Good luck in finding an excellent doctor.
 
I just put your surgery on our calendar, Ted, so we're ready if you are!
Kidding aside, we're here to offer support through surgery and beyond. Let us know if you need anything.
 
Wish you the very best, Ted.
We're here to help you over the mountain and through your recovery.
Hope all goes smoothly for you.
 
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