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alpha 1

Well-known member
Joined
Feb 14, 2008
Messages
184
Location
Pa.
Hi everybody,
Finally I have learned how to use this site. Typing in all the wrong places at all the wrong times. Story of my life. I'm looking for a surgeon who specializes in aortic valve repair that is very good, and is from a really good hospital. Any suggestions. Getting really worn out here in Pa. Thanks.
alpha 1
 
Just about anyone at the Cleveland Clinic. My personal favorite, Dr. McCarthy, Northwestern. I suppose you want local too. Best thing to do there is talk to nurses that work in the facility and are around your Doctors. They'll be very honest and forthcoming in most cases and give you a better report then paying for one.

I don't know where you are in Pennsylvania, but you have some great facilities in Pittsbugh.

By the way, welcome and don't worry about past posts. I'll move them if it should be moved. Judging from reading them, you don't already have a Cardio's referral to a surgeon or you do and your having troubles getting an appointment to see one?
 
Hi,

I see you are in the Pa area, but I don't know where. I am in NJ. There are many very good ones in NY Presbyterian, also a Dr. Acker in University of Penn. I am sorry I can't help you with more. Also there is a great article in Newsweek that rates the top 20 heart hospitals.

I hope this is of some help to you.


xoxo
KathyM
 
I had my aortic valve repair done at Rush University Hospital in Chicago by Dr. Robert March. Five years later all is going very well.
 
I understand there are good facilities in Pittsburgh and Philly and NJ. But if you are in the part of PA close to DC area, I can wholeheartedly (no pun intended :) ) recommend Inova Fairfax Hospital in Northern Virginia and my surgeon, Dr. Alan Speir. Others have spoken highly of Washington Hospital Center, as well.

Of course, some of the consistently top-rated ones are Cleveland Clinic, Johns Hopkins in Baltimore, Duke, Mayo and others.

I think usually folks want to be fairly near home, so family/friends can be there for support, but some do travel long distances, depending on preferences and circumstances. Good luck with your search. As Ross indicated, having a good cardio who can give you a referral is usually a good start.
 
Aortic REPAIR is not something that is done by many (most?) surgeons so you will need to find someone who specializes in that procedure, probably at one of the Major Heart Hospitals.

The University of Pennsylvania Hospital is mentioned frequently here, along with the others already mentioned above.

'AL Capshaw'
 
doctor search

doctor search

Alpha 1
Thank you so much everyone for responding to my question. I finally found where they were tonight. (your answers) Im learning to manouver my way around.
We had an appt. yesterday with a doctor, but we have yet to reach that comfort zone that you feel with someone that will be operating on you, or your family member. My son is the one with the aortic valve regurgitation. severe. We didnt know it until he had chest pain in Dec. One day he was healthy or so we thought, the next day he wasn't. I am devistated. He is only 28 years old. bicuspid valve. where did it come from? I wish it were me instead of him, I could handle it a whole lot better that way. I am getting to the breaking point we have to make a decision soon. The hardest decision anyone ever had to make around here. You guys are wonderful. Thanks again for responding to my questions. I hope someday that I could be of help to someone too. Thank you.
Janice-alpha 1-my horses name.
 
alpha 1

alpha 1

francie 12,
your son is only 12 and has the bicuspid valve same as my son, with the regurgitaion which is severe. I wish that we had known that he had it so that we could have been watching it, then we could have been looking for a surgeon, instead it had to be found out all at once when it was already bad so that we have to make a decision soon. It just doesn't give you the time that you need. Did your son have any surgery yet? I feel so sorry for our children. They shouldn't have to suffer with this. It is very hard. Well I wish you luck with your son. I will pray for us both, along with praying for everyone on this site. Thank you very much for responding to me.
Janice
 
alpha 1

alpha 1

al capshaw2,
It is really hard to find someone who does the repairs for the aortic valve, even at most of the bigger heart hospitals, there may only be one or two that specialize in it and even then, they haven't done very many. They say the repairs haven't been out for more that 10 years, but some people that I talk to say that some pediatric surgeons have done them on their children as far back as 16 years ago (repair on the aortic valve) so, I wander when it really did come about. Who knows?
Thank you so much, I think you are the first person I tried to get back to even though I don't know where my message went to, you probibly didn't get it. Oh well, Thank you again.
Janice
 
alpha 1

alpha 1

To Superbob,
you are right to have a good cardiologist, maybe if we could ever reach ours, then we could have gotten some kind of referral. Sometimes all you get is the nurses and they just don't seem to communicate with the doctors. Ours did the testing on Dec. 11 and I just got an appt. with him for this coming Mon. not at the closest office to us but in Pittsburgh which is about an hour away for me. I just get very frustrated with not being able to get in to see your doctor. The office in Pgh was a lot more considerate than the closer one. So I don't know we just haven't had the right connections. I guess. I think that they should be more concerned about my sons health though. I feel like I have been searching for the right doctor alone, without the help of our medical providers. Im really glad to have all of you guys. Thanks
Janice
 
alpha 1

alpha 1

Ross,
I hear a lot about this doctor Patrick McCarthy, where is Northwestern, and does he specialize in aortic valve repair that you know of? Let me know and thank you so much for responding to my question, it has been really hard. I feel like I have aged 30 years in the last couple of months from all of the stress. Well thanks again.
Janice
 
Since your son has a Bicuspid Aortic Valve, you will want to find a surgeon with lots of BAV experience. He will want to check for 'connective tissue disorders', especially of the Aorta to assess the risk of future aneurisms.

I'm thinking that most surgeons would want to replace a BAV rather than repair (and that repairs may not last long in BAV patients...but I'm NOT sure of that...yet another reason to find an Aortic Specialist).

'AL Capshaw'
 
Janice :

Janice :

I had a bicuspid Aortic valve (BAV); had a murmur for many years, progressed to stenosis and was replaced with mechanical valve almost 6 months ago.

I have an idea how you feel as a mother - I am 52 years old, and when I told my mother that my cardio said it was time for surgery, she insisted we go to my next appointment together - she'll always be a mother ! Of all the people I know (including my husband) she is the one who took it the hardest, I think - her words to me at on e point were "this shouldn't be happening to my KID, my friends, maybe, but not my KID " !!!!

I appreciated her support, and that of my father, too. They also acknowledged that my husband and I came first for each other, especially at that time, and hung around in the background so he could be the first to see me in ICU and so on. The day they brought me home, they saw me into the house and left us to sort ourselves out as far as who was sleeping where and so on - but we both knew they were only a phone call away if we needed them.

So, Janice, from the other side of the coin, I am sure your son appreciates your concern and support, but he may also need some time to accept this. He will need your continued support, calm acceptance and the knowledge that you are there for him for quite some time yet. I am sure you will both make it through this, and good luck in finding a doctor/surgeon and facility that you both like.
 
Do a search of my posts. Bi-cusp valves most likely will need to be replaced. I also had the root replaced with dacron due to 3 anyerisms(sp). I was 17 when mine was found and 36 when replaced. Now on to the good part. I have been very active since my surgery and feel so much better. The surgery wasn't very bad at all and recovery was steady and fast (My thoughts anyway). Feel free to ask me any questions you may have. My Surgeon is VERY good and quick which means less time on the pump.:D
 
aortic valve repair

aortic valve repair

Dear Tom F,
I just wanted to know about your aortic valve repair, you said that you had it for 5 years. Did they tell you how long that it might last? Also, is that all that you had done? How long was your surgery, and how long was your recovery period? Did you really like the doctor and the hospital. Did you have regurgitation or something else, and how severe was the regurgitation if you had that. Boy am I snoopy huh. Well thank you for letting me know. Please respond back. Thanks.
alpha 1
 
HI Alpha I,

Just noticed that you were asking specific questions of specific members, like Tom F. The best way to do that is to send them a private message...that way Tom will be sure and respond to you. Otherwise, he may not check this specific thread and be able to get back to you. If you want me to walk you through how to do this just give me a call....you have my number.

Many people have brought up the fact that oftentimes a bicusipid valve cannot be "repaired" and instead must be replaced. The best way to determine that is to find a surgeon who does a lot of "repairs" and let him review your son's medical records. Ultimately, however, the decision to repair or replace cannot usually be made until they get in there. My surgeon gave me a 70% of a repair but I chose what type of artificial valve I wanted just in case mine couldn't be repaired. I did meet with a couple other surgeons here in the Seattle area and one told me there was no way he would repair my valve (by the way, he is the chief of cardiothoracic surgery at Univ of Wash and has a great reputation). Some surgeons won't do a procedure primarily because they just haven't done a lot of them and probably aren't comfortable...just like a lot of cardiothoracic surgeons don't do the Ross procedure...doesn't mean it wouldn't be a good option just isn't their specialty. So, if you have your heart set on a repair as an option at least, find a surgeon who does a lot of them, with the understanding that he will make the call once they get in there.

Just so you know, I had very mild aortic valve regurgitation and my valve wasn't the main problem...it was my aneurysm.....so if it hadn't been for my aneurysm my valve would have been fine for many years. They did the repair since they were already in there, so to speak.

Call me tomorrow ~ I'm feeling much better now. Sorry to hear that Cleveland Clinic consult wasn't all you had hoped it would be.
 
I am from the Pittsburgh area myself and have been followed with heart problems since I child. I was wondering if you have considered Chidlren's Hospital of Pittsburgh? I was followed by their cardiology department until I was 18. There is also Jefferson Regional Medical Center about 20 mintues south of Pittsburgh where I had my surgery done. However, I don't know if they see children.

I know many people who have had everything from valve replacements to full transplants and everything in between at Childrens in Pittsburgh.

Any questions feel free to PM me,

Cork
 
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