Hi I am John. My head is swimming trying to digest all I have found out in the last couple of weeks. I am 61. I have always been active; football in highschool and college. 30 years in the military. At 40 I was told I had a aortic click. At 50 I was dignosed with mild aortic stenosis and a bi aortic valve. I am needing hip surgery for hip replacement. Was getting ready for that and discovered that I now have sever arotic stenosis .88 and a root aortic aneurysm of 4.3. I am basically asymtomatic. Occasional night palataions. I discovered this because I have a cousin that works at the VA. They never bothered to tell me. I ordered Adam Pick's book and read it. Met with the cardiologist at the local VA ( total waste of time he spent the whole time telling me what I should have done 40 years ago) I plan to go see a real cardiologist soon. I am trying find information on hospitals and surgeons to make informed decisions. According to the US News and World report ratings Clevelan clintic is number 1. However, Barnes Jewish Hospital in St Louis is number 9. It is also only 3 hours away. CC has a higher volume over 5K a year and a .52 mortality rate. BJH has a volume of a little over 3k and a mortality of .069 compared to the national average. My questions are these. 1. How do I find the success rate of a surgeon (their mortality rate)? Has anyone on the board used BJH ? Although I am basically asymptomatic would you consider surgery now if it is recommended? Thanks for any advice. John
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WayneGM
Well-known member
Welcome to VR. Sorry for the circumstances but glad you found us. I can't help with the questions about doctors in the U.S. as I'm in Canada. However, I was asymptomatic when I had my mitral valve repaired. While I was feeling fine, internal there was stuff going on and there's a risk of permanent damage if you wait for sympotoms to materialize. I had my OHS despite feeling fine and have no regrets. Best wishes and good luck to you.
Thanks Wayne. That is my thinking also. The surgery scares the hell out of me but I am afraid if I put it off until there are symtoms there will be more damage. I am glad I found the forum I need the support and the information. Thanks John
Hi, I can't offer advice, but just wanted to add, most of the top hospitals are good, BUT the ratings and stats given like number of surgeries, usually reflect more on people having CABGs (bypass) and not valve replacement surgeries, or even more specific valve (say aortic) replacement specialist, . So you want to look at the surgeon's (not necessarily whole hospital) stats on what YOU need and not heart surgery in general.
Thanks Lyn. I am also trying to find that information. I understand that the valve and root surgeries are very specialized. I don't understand why you have to search so hard for this information. Seems reasonable to me that this should be available so one can make an informed choice. Do you know of any way other than asking the surgeon what their stats on these surgeries are? How many they perform a year and what the results are? Seems kind of like a shot in the dark
Hi John,
First, welcome to this site. People here are quite supportive. I cannot answer your questions regarding surgeons or hospitals in your local, since I'm in California. But I would agree that getting your heart mended before you do damage is a good idea. I'm almost at 1 year post-op from aortic valve surgery (bi-cuspid valve) and I didn't have symptoms per se. I thought my shortness of breath and general fatigue was due to age. Ah well so much for that. Anyway, I sure someone will pipe in with suggestions for doctors and hospitals, so read as much as you can and be prepared with Plans A, B, and even C. Good Luck to you.
First, welcome to this site. People here are quite supportive. I cannot answer your questions regarding surgeons or hospitals in your local, since I'm in California. But I would agree that getting your heart mended before you do damage is a good idea. I'm almost at 1 year post-op from aortic valve surgery (bi-cuspid valve) and I didn't have symptoms per se. I thought my shortness of breath and general fatigue was due to age. Ah well so much for that. Anyway, I sure someone will pipe in with suggestions for doctors and hospitals, so read as much as you can and be prepared with Plans A, B, and even C. Good Luck to you.
Tom F.
Well-known member
First, as a fellow vet, thank you for your many years of service.
Now your questions. if you poke around the internet there are a few services that will give you info on doctors for a fee, and the US News is a good general source. But keep in mind that anything they give you can be misleading. A doc may have a higher mortality rate than the next guy, but it could be because he takes on more high risk surgeries that others run from. I would suggest that your best bet is to find a large teaching hospital or Cleveland and go from there. Do not get too far into the numbers, just find out what your surgeon recommends and explore with them options, and the number of procedures that they have done. In Chicago there are three fine teaching hospitals, Rush, U of C, and Northwestern, and there are talented surgeons at each. I have family in St Louis, and while I have no direct experience with Barnes, it seems to have a great reputation in the area. Maybe talk to them first, see if any of the docs feels right to you, take it from there.
Good luck.
Now your questions. if you poke around the internet there are a few services that will give you info on doctors for a fee, and the US News is a good general source. But keep in mind that anything they give you can be misleading. A doc may have a higher mortality rate than the next guy, but it could be because he takes on more high risk surgeries that others run from. I would suggest that your best bet is to find a large teaching hospital or Cleveland and go from there. Do not get too far into the numbers, just find out what your surgeon recommends and explore with them options, and the number of procedures that they have done. In Chicago there are three fine teaching hospitals, Rush, U of C, and Northwestern, and there are talented surgeons at each. I have family in St Louis, and while I have no direct experience with Barnes, it seems to have a great reputation in the area. Maybe talk to them first, see if any of the docs feels right to you, take it from there.
Good luck.
Honestly I find the best way is word of mouth, like start a thread here, looking for aortic valve in (darn you are missouri right? )as the title and people post what they know also There is an Org for BAVD that has a site with alot of info http://www.bicuspidfoundation.com/
I'm sorry I'm not more help, my son was born with heart issues and had his first surgery at 10 days, so I mainly know the top CHD surgeons/centers.
You ARE right it should be easier, some centers like CC put alot of there stats for each year on there site, but even then you have to search EACH hospital there is not clearninghouse type thing with all that data for valves as far as I know. The Adult CHD org has a great clinic listing for all the Adult chd centers that breaks down how many patient, surgeries ect http://achaheart.org/for_members/clinic_directory.php that they put together by sending out surverys to every center to fill out, that was a Blessing for me to have all in one place but it was alot of work,
Tbone
Well-known member
Whoever you go with, or when you go I wish nothing but the best for you. Also, thank you for your many years of service to this country. Good Luck & God Bless.
palmaceae
Well-known member
The 2 hospitals you mentioned have great credibility so you can not go wrong with either. I just had my surgery at Alexian Bros in Elk Grove near Chicago, and there are several others in the Chicago area that are good. I pray all works out for you and like the others have said, thank you for your service to this great nation!
God bless,
God bless,
M
Mary
John,
You need to see Dr. Nicolas Kouchoukos at Missouri Baptist. Dr. K was associated with Barnes for many years, but moved his practice to Missouri Baptist back in 2004 (I believe). He is well known throughout the United States and several VR members have had him perform their replacements--mine included.
If you need more information, including phone numbers, send me a pm. I'm not sure where you're located, but I'm in Cape Girardeau.
You need to see Dr. Nicolas Kouchoukos at Missouri Baptist. Dr. K was associated with Barnes for many years, but moved his practice to Missouri Baptist back in 2004 (I believe). He is well known throughout the United States and several VR members have had him perform their replacements--mine included.
If you need more information, including phone numbers, send me a pm. I'm not sure where you're located, but I'm in Cape Girardeau.
Philip B
Well-known member
Advice?
Advice?
Hi John,
Opinions will vary and others are certainly free to disagree with my perspective...
The overall success rate for people who have AVR surgery is high. The rate is even better for people who are in decent physical shape. Any kind of OHS is a big deal and as you are aware involves an element of risk.
AVR surgeries are performed successfully at hospitals through the world. There are members here who undoubtedly feel having the surgery done at a well-known facility like the Cleveland Clinic is the only way to go. For me, the choice boils down to choosing a hospital you have confidence in. The same goes for choice of a surgeon.
My AVR surgery was done at Porter Adventist Hopital in Denver by an extremely competitent surgeon. Despite the seriousness of the surgery, my experience was extremely positive. There are several other hospitals in Denver that do more AVR surgeries per year than Porter.
Like you, I did not present any noticable symptoms of my heart issues. The presence of a 5.8 cm aortic aneurysm required immediate attention when discovered. I was aware of my defective valve for over 40 years, but never really worried about it because it did not seem to be causing any problems.
If you have the option of getting your valve fixed before it begins to present problems and before you encounter any other health issues, why not get it fixed? I have always engaged in a very active lifestyle and that has not changed.
For what it is worth, I purchased Adam Pick's book in an effort to get my head around the whole idea of needing surgery. Adam and I even did the e-mail thing before and immediately after my surgery. The information in the book was helpful, but it was probably more helpful for me to visit with the folks in the ICCU and step down units at the hospital I choose for my surgery. Advice, comments, and support from members of this forum helped too.
The odds of you having a good outcome if you opt for surgery are extremely high. Good luck with those decisions you need to make about a surgeon and surgical facility. Wait until you get around to asking for advice regarding valve choice...
-Philip
Advice?
Hi John,
Opinions will vary and others are certainly free to disagree with my perspective...
The overall success rate for people who have AVR surgery is high. The rate is even better for people who are in decent physical shape. Any kind of OHS is a big deal and as you are aware involves an element of risk.
AVR surgeries are performed successfully at hospitals through the world. There are members here who undoubtedly feel having the surgery done at a well-known facility like the Cleveland Clinic is the only way to go. For me, the choice boils down to choosing a hospital you have confidence in. The same goes for choice of a surgeon.
My AVR surgery was done at Porter Adventist Hopital in Denver by an extremely competitent surgeon. Despite the seriousness of the surgery, my experience was extremely positive. There are several other hospitals in Denver that do more AVR surgeries per year than Porter.
Like you, I did not present any noticable symptoms of my heart issues. The presence of a 5.8 cm aortic aneurysm required immediate attention when discovered. I was aware of my defective valve for over 40 years, but never really worried about it because it did not seem to be causing any problems.
If you have the option of getting your valve fixed before it begins to present problems and before you encounter any other health issues, why not get it fixed? I have always engaged in a very active lifestyle and that has not changed.
For what it is worth, I purchased Adam Pick's book in an effort to get my head around the whole idea of needing surgery. Adam and I even did the e-mail thing before and immediately after my surgery. The information in the book was helpful, but it was probably more helpful for me to visit with the folks in the ICCU and step down units at the hospital I choose for my surgery. Advice, comments, and support from members of this forum helped too.
The odds of you having a good outcome if you opt for surgery are extremely high. Good luck with those decisions you need to make about a surgeon and surgical facility. Wait until you get around to asking for advice regarding valve choice...
-Philip
ALCapshaw2
Well-known member
I second the recommendation of Dr. Kouchoukos.
He is one of the TOP Rated Surgeons in the Country if not the World for Surgery of the Aorta which IS another step above and beyond 'simple Valve Replacement'.
Since you have BAV and a (relatively) small aortic aneurism, I recommend that you read through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to learn more about those related issues and their treatment.
IMO, you *definitely* need to see a surgeon with LOTS of experience repairing the Aorta, especially in BAV patients with a Connective Tissue Disorder.
'AL Capshaw'
Staff knowledge is ONE of the reasons I prefer Hospitals with dedicated CICU units and not just ICU units where the staff takes care all all pateints from heart to brain to trauma patients. I figure IF all you work with and take care of is heart surgery patients, it helps.
briansmom
Well-known member
Welcome to the forum and thank you for your service.
My only comment is to suggest that you get your valve AND your aortic root done at the same time even though the root does not seem very dilated at this time. It seems silly to have the possibility of another OHS because they don't always address both at the same time.
please keep us posted.
My only comment is to suggest that you get your valve AND your aortic root done at the same time even though the root does not seem very dilated at this time. It seems silly to have the possibility of another OHS because they don't always address both at the same time.
please keep us posted.
Thanks to all. I have seen Dr. K's name and his credentials looked good. I will look at him and his staff more closely with the reccommendations. I am being refered by the VA to St Louis. I discovered that one of the primary Cardia surgeons at BJH also see in the one I will see at the VA. If I need surgery soon they will send me to BJH. However, I will check out Baptist and Dr K also. I do have the option to use my Tri-care nd pay the copay. That is not an issue for me with this surgery I want a great surgeon who knows valve and the root and has great results.
I really can not express how much every post, advice and support means to me. Thanks to all.
I really can not express how much every post, advice and support means to me. Thanks to all.
WayneGM
Well-known member
Me, too. However, now that I'm on this side of the mountain I can honestly say it wasn't nearly as bad as I thought it would be. In fact, I've told many about how "pleasantly surprised" I was at how "not bad" it was compared to what I thought it would be.
Thanks Wayne.
I am leanint toward a tissue valve. I also need a hip replacement some time after they fix my heart. (Trying to think possitive) I think more surgery could be complicated by the blood thinners. I am now eating a healthy diet and losing weight. I hope with life style changes I can help a tissue valve last.
We plan to take a daay trip to St Louis soon and check out both BJH ad MB hospitals. At this point I think either could be a good choice. There are at least 2 surgeons at BJH that were trained by Dr. Nick K. Thanks to those on this site ad some research I am feeling better about ST. Louis.
I do have a good support group. We live on a 90 acre place and all 3 of our children have homes on this little farm. I have 9 grand children and 1 great grand child. We all live on the same 90 acres. I have a son who is an xray tech and a daughter who is a surgical RN. ( She said I will have an extra RN watching over me)
Thanks John
I am leanint toward a tissue valve. I also need a hip replacement some time after they fix my heart. (Trying to think possitive) I think more surgery could be complicated by the blood thinners. I am now eating a healthy diet and losing weight. I hope with life style changes I can help a tissue valve last.
We plan to take a daay trip to St Louis soon and check out both BJH ad MB hospitals. At this point I think either could be a good choice. There are at least 2 surgeons at BJH that were trained by Dr. Nick K. Thanks to those on this site ad some research I am feeling better about ST. Louis.
I do have a good support group. We live on a 90 acre place and all 3 of our children have homes on this little farm. I have 9 grand children and 1 great grand child. We all live on the same 90 acres. I have a son who is an xray tech and a daughter who is a surgical RN. ( She said I will have an extra RN watching over me)
Thanks John
