Aortic Valve regurgitation and ascending aortic aneurysm

[RickKiem]

I have been diagnosed with moderate Aortic regurgitation and an ascending Aortic aneurysm that has grow from 4.8cm when first discovered in 2001 to 5.0cm in July of 2003. I am currently seeing my Cardiologist three times a year and performing a Stress test during one visit, an Echo one visit, followed by a CT just prior to my third visit. I have been taking Norvasc and Toprol XL to control my blood pressure and heart rate to slow the progression of the aneurysm. I have a strong family history of Stroke(Father had Three debilitating strokes starting at 29, died of endocarditis related heart failure at 39: Sister had debilitating stroke at 38 related to prolapsed mitral valve and has had three mitral valve replacements since 1995: another sister had mild stroke during pregnancy in 1995).
My question is if anyone has an information they could share relating to how long I should wait before having my surgery done to replace my aortic valve and repair my aneurysm. My Cardiologist has stated that we continue to monitor both the valve and the aneurysm closely and most likely wait until the aneurysm grows to 5.5cm before we even consider surgery. If anyone out there has been in a similar situation, please shed some light as to what the risks are in waiting to do what seems to be an inevitable procedure. I am 39 years old with a Wife and two young Boys(4yrs. and 2yrs.) and I don't want to miss watching my wife grow old and my Boys growing up. Sorry to be so long winded.

Thanks,
Rick

 

[Ross]

Hi Rick and welcome aboard.

I'm more concerned with the size of your aneurysm then I am with your valve. Mine was 4.8 and they said they'd keep an eye on it and take action if and when necessary, 4 months later, it blew without warning. How often are they checking you now?

An aneurysm is a weakening of the wall of the vein or artery, so if it's present, I don't think I can tell you to be comfortable waiting since it nearly cost me my life. That thing can decide to grow very rapidly or rupture and believe me, you don't want to go through that.

Welcome again and if you need more info, just yell. Others will be around also to answer this too.

 

[bvdr]

Hi Rick,

Welcome to valvereplacements. You asked how long you should wait? I think you have waited long enough already. I don't see why you should wait for permanent damage to occur before repairing something that will need repairing anyway. This of course is my personal opinion but I do feel strongly about it. I don't want you to miss seeing your family grow and mature either!

 

[MelissaM]

Hi Rick,

Welcome to the boards! I am glad Ross posted his response. Your post alarmed me, but I don't have much experience in aortic aneurysms and didn't want to speak out of turn.

Your condition sounds serious and waiting doesn't seem prudent. You might want to get a second opinion.

Melissa

 

[Mara]

Hey Rick

I think a good rule is the sooner the better. Why risk a major event, as Ross suggests, and he knows!
Take a pro-active stance and get the answers you want and need, after all, it's your life and you on the operating table.

Welcome aboard! We all know you'll be around to grow old with your wife and to see the boys grow up and have a ton of grandkids!

 

[RickKiem]

Thanks to each of you for your quick responses. Ross, I am scheduled for a 2D echo in Early December. this will be the third check this year (second echo, plus a CT scan in late July). The curret plan is to check every 4-5 months and alternate between the Echo an CT. When first diagnosed, I used to worry about HAVING the surgery. You see, with my family history, I have spent an incredible amount of time ay the hospital. But it was always as a visitor..... Now, as I spend more time reading and researching, I am finding myself worrying about NOT having the surgery.... Thanks again for your comments and please feel free to share any other thought that you might have.

Thanks again,
Rick

 

[Granbonny]

Aneurysm

Aneurysm

Hi Rick. I am age 63 and had AV 18 months ago. I was very lucky..after looking for a minor problems..not relating to the heart. a very smart Cardiologist found mine..Thru Cath...It was a 5.0 and they said..do it now. 3 days later..Surgery and have been doing great..Mech. valve. take coumadin. No problem....Don't want to scare you..but my age 50 year old brother-in-law's burst when he was in bed reading. Died the next day.. Ross was one of the few who survived this..Did you know that is what John Ritter died from?

 

[Ross]

Rick the size of the thing worries me. If you so much as have a sudden chest pain or twinge that just doesn't feel right, get your tail to the ER and have them double check and do an echo and/or catscan. With the bit of regurg you have, it's putting more pressure on a already weakened area of the main line. Not a good thing.

Mine was first discovered after an echo in November of 94. That is when the Cardiologist said that we'd watch it and take corrective action if and when necessary. In March 95(I was 33 then), before I had a chance to get to the next appointment, the thing went and ruptured. It pretty much wiped out my valve when it went, so the surgeon did a Ross procedure on me and dacron grafted the bad spot. In July of last year(40 then), I needed the valve replaced altogether, as the Ross failed. I wish he'd of just put a mechanical valve in at the time, but he really didn't hold out much hope of me surviving as it was. He still can't believe I'm walking around after what happened. John Ritter was not as lucky. When his blew, he was done instantaneously. I'm sure you don't want to end up like either one of us.

The surgery itself isn't all that bad. We can get into that more if you'd like, but you can learn alot by simply reading threads of interest in the forums. Anything you need to know, just ask and one of us will try to answer you, if not all of us.

 

[fyrfytr]

Hi Rick,
Welcome to vr.com. I had an aortic aneurysm repaired and my aortic valve replaced in April, my aneurysm was 6cm. I am like the rest here and don't think you should wait any longer to it taken care of. I am getting better everyday and am thankful that I get to watch my grandkids grow up.
Have A Great Weekend!

Dave
____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[RickKiem]

Thanks again to everyone. This is a great site and I must say that I am impressed by the willingness of the members to share their thoughts. I am making a list of things to discuss with my Cardiologist and reading these threads has allowed me to expand it. Thanks again!

Rick

 

[Arlyss]

Hi Rick,
I too am very concerned about you. You need to be under the care of those with expertise in aortic disease - since your aortic valve is leaking at a relatively young age, it is very possibly bicuspid. The strong history of stroke in your family may also be related. It is reported in the medical literature that for those with bicuspid aortic valve disease, the blood vessels in the head and neck may also have abnormal, weak tissue. The aortic valve cusps, the aorta, and the vessels of the head and neck all begin from the same source tissue when the baby develops. If there is a genetic abnormality in that tissue, it may result in problems in any of those areas. Even if your valve is not bicuspid, the experience of yourself and your family certainly suggests some type of inherited connective tissue condition affecting the blood vessels and heart valves.
I want to share again a link that I have shared in the past. (There are some new FAQs that may be helpful to those who have visited the site previously.) There you will find information about aortic disease (aneurysm and dissection) including timing of elective surgery, etc. Here is the link
http://www.cedars-sinai.edu/aorta
Dr. Schievink, who has studied the relationship between bicuspid aortic valve disease and the vessels of the head and neck is also at this medical center. If anyone is interested in more details regarding his work, please contact me.
You can have many wonderful years ahead with your family, but it is important that you get under the care of aortic expertise as soon as possible. If you wish to seek that in Texas, I am aware of Dr. Joseph Coselli in Houston. I am sure if you are evaluated there, surgery will be recommended promptly. Please feel free to email or private message me if you would like.
Best Wishes,
Arlyss

 

[KathyH]

Hi Rick your thread has hit home with me. I also have mod- severe aortic regurg and a 4.7 ascending aneurysm. I don't have a family history like yours and I have low BP, especially now that I take zestril and atenolol. I am diabetic and 49. At my last Cardiologist visit I asked about my aneurysm and she said she was more worried about my valve and I didn't know what to say. I have a echo scheduled for Oct 16 and my next ct scan should be around march. Now with all these posts I am nervous. Please keep us posted, and good luck!

 

[Ross]

Taken from the Cleveland Clinic Heart Forum:

1) Repair of an ascending aortic aneurysm and valve replacement/repair is a very involved, complicated open heart surgery, subsequently it begs a highly skilled and experienced surgeon. Granted there are only a small number of centers in the U.S. that have such surgeons, the Cleveland Clinic certainly is one of them and we are in the midwest as well as the Mayo Clinic, so no the statement is not true, as our surgeons do this particular surgery on a regular basis, last year the Cleveland Clinic did nearly 5,000 open heart surgeries, many of which were valve surgeries as well as aortic repairs.
2) aneurysms are considered worrisome (at risk for rupture, which in most cases means death) at anything greater than 5.0cm, so the decision to go for it (surgery) at 5.0, 5.5, or 6.0 is an involved one made by the patient after a thorough discussion with his/her surgeon regarding risks and benefits of going now versus waiting.
3)Basically, the risk of rupture goes up with every incremental dilation above 5cm, so technically there is no "average", rather we know from "statistics" that the risk is high enough in the >5cm range that it is time to seriously consider surgery as the risk to life by surgery is outweighed by the risk of rupture without surgery.
4)I can only speak for the Cleveland Clinic, as the length of stay is generally 7 days barring complications. This type of surgery can be done within a day, or a week, depending on the decision of the surgeon and the patient. This is certainly not a "I'm on the waiting list" type of surgery.
5)You should have a lot of questions for the surgical team and the cardiologist when you meet them, and it is completely normal to be afraid of such a major surgery that has very small albeit definite risks to your life.
I hope this information is useful. Information provided in the heart forum is for
general purposes only. Only your physician can provided specific diagnoses and therapies.
Feel free to write back with further questions. Good luck!

If you would like to make an appointment at the Cleveland Clinic Heart Center, please
call 1-800-CCF-CARE or inquire online by using the Heart Center website at
www.ccf.org/heartcenter. The Heart Center website contains a directory of the
cardiology staff that can be used to select the physician best suited to address your
cardiac problem.

 

[cookie]

Hi Rick.
I agree whole heartedly with everyone. Sooner than later! My aneurysm was found accidently at 4.0cm and was monitored until it reached 5.0cm and surgery was scheduled after determining there were no other heart problems. I thank God for watching over me in the interim! Please do not wait!

 

[RickKiem]

Once again, I want to thank everyone for there concerns. I found the links that Arliss and Ross provided very informative and helpful. I am begining to think that I need to move up my appointment and discuss my concerns with my Cardiologist now and consider talking to my Surgeon (Hazim J. Safi, MD., Memorial Hermann Hospiatal in Houston: He is the surgeon who preformed two of the mitral valve replacements for my Sister) and get his thoughts on my condition. Hope everyone has a great weekend!

Rick

 

[Ross]

I certainly would Rick. Your in the surgical zone now. There isn't any need to take it any further. I whole heartedly promise you that you don't want that thing to rupture.

 

[RickKiem]

Arliss, You wondered if I had a bicuspid Aortic valve, well while not technically bicuspid it does have two of the leaflets that are partially fused together. That is the reason that I will be replacing the valve along with the repair of the anuerysm when I do have my surgery. Also, my anuerysm involves the aortic root. Does the location along the asending aorta have any bering on risk of rupture? I know that the location is what is causing the regugitation but do not have any knowledge of whether this increases the risk of rupture?

Thanks again,
Rick

 

[Ross]

Rick I don't know if there is anymore of a risk for rupture there or not. Mine was at the root. Logical thinking says that there should be an increased risk, but that may not be true. You'll have to check with the Surgeon on that one.

 

[Arlyss]

Regarding Your Valve

Regarding Your Valve

Hi Rick,
There is a medical paper that is quite readable and helpful. Here is the link to the full paper on the web
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
(You may want to share with your cardiologist.) Bicuspid aortic valves are not just two "normal" leaflets that fuse, they are valves whose leaflets consist of abnormal tissue. There are so many variations in this condition, but since your leaflets are "partly fused", it seems you have a variation of it, which is also being called bicuspid aortic disease, making it clearer that there is more involved than the valve.
The root and ascending aorta feel the full force of all the blood that the heart pumps with each beat (with the exception of the quite small amount that branches off the root into the coronary arteries to "feed" the heart itself). The ascending aorta does not have much support around it, and in conditions like bicuspid aortic disease, Marfan syndrome, etc. it is most likely that this part of the aorta gets into trouble first. (There are exceptions to everything - there are some people who dissect in the descending aorta first....even tho' by the time the blood gets to the descending aorta, the volume is less because blood has already branched off to go to the head and upper body.) Anyone with enlarged, weakened, thin aortic tissue in the ascending aorta/root is at risk of dissection (tearing) or rupture. Until you have surgery, it is important that your blood pressure be kept low to avoid spikes in pressure that may put a strain on that delicate aortic tissue. Dissection (tearing) of the root/ascending aorta is always a surgical emergency, and something that should always be avoided.....Ross speaks very eloquently to this....and dissection of the ascending aorta is reported as the cause of death of John Ritter. With a full blown rupture of the aorta, I doubt that one would make it to the hospital since the bleeding would no longer be contained within the aorta ....
Because of your family history of stroke, I want to also list this paper from Dr. Schievink, published while he was at Mayo. This paper is also fully available on the web at
http://stroke.ahajournals.org/cgi/content/full/26/10/1935#R43
Perhaps your doctors might wish to get in touch with Dr. Schievink.
For those who develop aneurysm fairly young, their tissue may be even more fragile - that is why generalizations about when to do surgery based on size alone are a concern. I have a friend who had her AVR and aneurysm surgery almost a year ago now - done by Dr. Coselli in Houston. She is in her mid 30's, and her aneurysm was 4.4 cm at the time of surgery. She had been told locally that it was not time for surgery yet.....but the post surgery pathology report stated that her tissue was very thin and at high risk for rupture! She is doing great today and very glad that she sought a second opinion beyond her local community!!
I hope some of this helps.....best wishes to you and your family.
Arlyss

 

[RickKiem]

Thought I would give an update on what I am going to do. I have moved my December appointment up and will see the Cardiologist next Tuesday(Oct. 12th) for a conference. We will also be doing 2d echo and a treadmill. I have a lot of questions to ask him. I am also in the process of selecting a surgeon and am curious if anyone has anyone they would recommend here in the Houston area? I will probably go with Dr. Safi who did two of my sisters surgeries but have also heard good things about Dr. Coselli with Baylor College of Medicine. Any advice would be appreciated. I will give an update next week after I see the doc.

Thanks,
Rick