Bicuspid Valve- Dilated Aorta

[momohio]

I am new on this board, and so glad that I found it. My son has congenital aortic stenosis. It was found at birth, and he is now 19 years old.
He has gone yearly for many tests, including stress tests, and also a catherization to measure the gradient. His mean gradient is 28-30mm, and all has been well. Last year's and this year's testings have shown a 44mm dilation of the ascending aorta. The cardiologist never said anything to us, but when I called the cardiologist's office to get a copy of the reports, I was stunned to see this in the report...with a notation to watch carefully. I am wondering first of all why the cardiologist never told us. This cardiologist he had for just 2 years, after his cardiologist of 17 years retired. Now I am definitely considering a new cardiologist. Anyone have any similar experiences?

 

[Susan BAV]

Welcome to the site; glad you found it. I'm sure many more members will post soon, some whose sons have recently and successfully gone through serious heart issues.

There are evidently a lot of cardiologists out there who really don't understand valve disorders. You can hopefully find a good one who does. You're taking a step in the right direction. You will learn a great deal on this site. Take care and post again.

 

[WayneGM]

I haven't hasd a similar experience but perhaps somebody will come along with some insights. I just wanted to welcome you to the VR community. This is an amazing place. All the best to you and your son.

 

[briansmom]

I am a bit paranoid about aortic aneurysms. I would talk to the cardiologist and see what his response is, but I would also start shopping for a new doc. My son's aortic dissection went undiagnosed until he almost died. He is being tested for a heart transplant now. IMHO patients (or their Moms) need to be responsible for their own health care. My son has wonderful docs now, but needless to say, I don't have a lot of respect for the first set of docs that told me there was nothing wrong with my son.

 

[momohio]

Thanks so much for the advice.

 

[Kate]

Hi!
I'm also from Ohio (Athens) and had my aortic aneurysm and aortic valve replaced about two years ago at the Cleveland Clinic. Regardless of where you live in Ohio, I'd encourage you to go there for your son's heart evaluations, if at all possible. At this point, aortic valve replacements (while still difficult for the patient) are fairly routine and can be done with very little risk by many facilities. However, aortic aneurysms are still not well understood, and the level of care your son receives can vary widely depending upon the experience of his Drs. Tricky issues related to this condition include getting an accurate measurement of the aneurysm, making a good determination about when to do surgery based upon your son's size, family history etc., and then doing the surgery itself. The Cleveland Clinic is currently recognized as one of the best heart hospitals in the country and can provide your son with the expert care he requires. Aortic aneurysms are now extremely treatable if handled appropriately (for example, I was told that my risk of not making it through surgery was under 2%), but for this condition, it really matters who you see. My cardiologist is Dr. Kalahasti and my surgeon was Lars Svennson, but there are many good people there. I'd also be happy to answer any questions you or your son have about my experience with this diagnosis and surgery. Best, Kate

 

[momohio]

Kate, thanks so much!
Hope you are doing well! I was definitely considering Cleveland Clinic.
So glad you helped make my decision.
How much dilation did you have in the ascending aorta? When did the aneurysm occur? Thanks for all you have to offer!

 

[momohio]

Thanks so much Rachel! I will definitely check out that link!
Thanks for the support!

 

[Kate]

Hello again!
Glad to hear you're thinking of going to Cleveland. I'll be honest with you, it is a very busy place, and it can sometimes feel impersonal, especially in the early stages. However, once it got closer to the time of my surgery, I was completely impressed with the care I received and while in the hospital, it felt like there was a nurse in my room every half hour - I seriously never waited more than a minute or two when I hit the call bell!

Like with your son, it is clear that my aneurysm existed for some time before I was told about it, despite going to a cardiologist each year. I'm not sure if this was because the cardiologist I was seeing didn't know to look for it or because they chose not to share the information with me (likely with the good intention of not alarming me, but it is my belief that one has a right to the honest truth about one's health, regardless of how disturbing that information might be.)

I eventually became disatisfied with my cardiologist for other reasons, ended up at the Clinic and was informed that my aneurysm was 4.8cm. Generally, most surgeons wait to do surgery until 5.0cm or larger, but I fought to have mine done immediately because of my short stature (normal aortic size is relative to body size, just like taller people tend to have larger feet.) Happily, my surgeon was receptive to this argument. I had surgery about 4 weeks later and bounced back relatively quickly (okay, it wasn't a walk in the park, but I was home in four days and back at work in about 6 weeks.) Although I'm a lot older than your son (38 at the time of surgery), that's still pretty young in heart world and, as a rule, surgery is earier if you are younger and otherwise healthy. I don't know your son's situation, but hopefully, this will be in his favor!

I'm not sure what else would be helpful to share with you, but feel free to ask additional questions as they come up - glad to help in whatever way I can! Kate

 

[momohio]

Kate you've been extremely helpful!! I know what you mean about the cardiologist not telling you right away. My son has been seeing a cardiologist since birth, at Rainbow Hospital. After 17 years he retired. The cardiologist that took over the last 2 years, is the one that noted this in his written report, but said nothing to us. I am wondering how long this was there, since it was never in any of the other cardiologist's written reports. I can't see it having developed so quickly. I agree that something should have been said sooner.
After hearing about your experience with Cleveland Clinic, I know that will be our choice in ongoing care and surgery. My son goes for a stress test in July, and I will be questioning his present cardiologist thoroughly to get all of the information I need for our next step.
Thanks for all of your help and information! It's much appreciated!

 

[momohio]

Thanks to all for the warm welcome!

 

[francie12]

Hi and welcome to this site. We just found out three years ago that our son has AV-related heart problems--see our signature below. We had the exact experience you had with our first cardiologist--I found out about the dilated aorta and the extent of the enlargement of the heart only after I requested and read the written records. The cardiologist was very reluctant to explain or share details of my son's condition, so we went doctor shopping and found an excellent cardio who is knowlegeable, forthcoming and up-to-date. I was very surprised to find how different cardiologists are from one another when it comes to knowledge about aortas and aortic valves. We at least wanted someone who was current with the latest research and willing to work with us--it's a long-term relationship. You are so lucky to live near the Cleveland Clinic! We have to drive a bit, but it is well worth it. Feel free to PM me if you'd like to talk.

 

[momohio]

Hi Francie,

I tried to instant message you, but your folder is full.

 

[MrP]

Welcome! The bicuspidfoundation website has a great deal of helpful information for you and your family. With respect to timing surgery and growth rates, you may also find the following url ling helpful.

http://72.14.203.104/search?q=cache...+valve+aneurysm+yale&hl=en&gl=us&ct=clnk&cd=9

Your son should avoid lifting heavy weights (more than 50 lbs), smoking, and negative lifestyle choices.
All my best,
MrP

 

[momohio]

Thanks so much MrP.
I will check out the links. Thanks for the info!

 

[Bad Mad]

I am new on this board, and so glad that I found it. My son has congenital aortic stenosis. It was found at birth, and he is now 19 years old.
He has gone yearly for many tests, including stress tests, and also a catherization to measure the gradient. His mean gradient is 28-30mm, and all has been well. Last year's and this year's testings have shown a 44mm dilation of the ascending aorta. The cardiologist never said anything to us, but when I called the cardiologist's office to get a copy of the reports, I was stunned to see this in the report...with a notation to watch carefully. I am wondering first of all why the cardiologist never told us. This cardiologist he had for just 2 years, after his cardiologist of 17 years retired. Now I am definitely considering a new cardiologist. Anyone have any similar experiences?

Everytime I read something like this it annoys me.
I had my BAV replaced in 2001 with a homograft (tissue) so that I could return to contact sport. It turns out that back then my Ascending aorta was 38mm. This was never mentioned until I was referred back to my original cardiologist in 2005, who idicated that my aorta was now 43mm, and it was unsafe for me to continue with my sport. This came as a complete shock to me, because not only had this never been mentioned before, I hadn't a clue what my aorta was, nor did I even envisage for one second that it would also need fixed in the future. I am now 29 years old and am supposed to exercise just recreationally.

I would also have some very stern questions for your cardiologist if I were you. Considering that your son is just 19 year olds, I assume that he may be quite active? This would be a reason on its own for you cardiologist to bring this condition to your attention. Whilst it is quite unlikely, It is not unheard of for a person to dissect/rupture their aorta at below 5cm.

I assume he must be happy with your son's BP measurements, both at rest and during the stress tests? When I was called for a stress test, (to I suppose rubber stamp that I shouldn't continue playing or be maxing out during exercise) my systolic BP got up to 240. Obviously the higher the BP the more stress/pressure on the aorta. I then went on to an ace inhibitor (4mg perindopril daily) to treat the BP. The next stress test my systolic BP only reached 220 at the 18 minute mark. This put my cardiologists mind at ease as regards me continuing to do a reasonable level of exercise.

In conclusion I would be asking:

1. Why he has never mentioned this? (perhaps he has assumed that your previous cardiologist had talked this through with you???)
2. For a list of the echo results for say this past 5/6 years to determine the growth of the ascending aorta.
3. BP measurements at rest and during exercise.
4. For a CT scan to confirm the echo reading(s) (sometimes echo's are not the best method).

Hope some of this helps and good luck for you and your son.

BM

 

[momohio]

Hi BM,

Thanks so much for the response. I know what you mean. It definitely upset me that he didn't see the need to tell me this. My son is very active. He was on the swim team at school for 4 years, coached swimming during the summer, and was told even recently that he can do unlimited aerobic exercising and light weights.
His stress tests came out very good,he said in the notes, that his blood pressure was good, and goes for another July 19th, at which I will be asking all the questions you posted.
I definitely know how you feel and do wonder what their reasoning is to withhold something so, so important! How often do you go for testing? My son never even had a CT scan. Just echocardiograms, a catherization 5 years ago, and stress tests. I am changing hospitals, and having him go to Cleveland Clinic to have more thorough testing, such as a CT scan done.
I do appreciate your advice, and for sharing your story. I wish you all the best!

 

[67walkon]

This is very scary stuff!

My ascending aorta was measured by local cardiologists in Oct, 05, at 4.3 cm. They were really watching my valve. No one even mentioned to me that the aorta was an issue.

In March, 07, my annual echo showed my valve to be down to 1.0 cm; no one mentioned the aorta, but recommended taking it a little easier on weights, etc., and to consider looking for a surgeon.

Luckily, I found someone at a University teaching hospital who is more attuned to these issues. He recommended an immediate CT to check the aorta. Sure enough, in May, 07, it had grown to 5 cm. My surgery is Friday of this week.

I think the local people frequently don't see enough of this in relatively otherwise healthy people, so they don't think to look at the aorta. If I had followed the local cardiologists advice, I would have returned for an echo in March, 2008, unless, of course, my aorta dissected and I died before then.

Websites like this one are invaluable. We have to be our own best advocates with the medical profession.

Be careful, do lots of research and ask questions.

 

[momohio]

Those are great questions AlanG. I would love the answers to those questions, also. There are so many different areas of the aorta, and perhaps a different procedure for each??? It is so very complicated and frustrating! I wish you the best with your CT scan! I agree 67walkon, it is scary and so, so common as we are seeing. So great you found out with the CT scan, and caught it!
This forum is great and opens your eyes to so much that we may not know!
Best wishes on your surgery! Hope all goes great for you!

 

[Bad Mad]

Hi BM,

Thanks so much for the response. I know what you mean. It definitely upset me that he didn't see the need to tell me this. My son is very active. He was on the swim team at school for 4 years, coached swimming during the summer, and was told even recently that he can do unlimited aerobic exercising and light weights.
His stress tests came out very good,he said in the notes, that his blood pressure was good, and goes for another July 19th, at which I will be asking all the questions you posted.
I definitely know how you feel and do wonder what their reasoning is to withhold something so, so important! How often do you go for testing? My son never even had a CT scan. Just echocardiograms, a catherization 5 years ago, and stress tests. I am changing hospitals, and having him go to Cleveland Clinic to have more thorough testing, such as a CT scan done.
I do appreciate your advice, and for sharing your story. I wish you all the best!

Momohio

At the time of my last echo (feb '07) my cardiologist (NEW) said that there was no change/deterioration in aorta or valve situation so he said he was happy to see me again in a years time. He did say however, that if I wanted to come back in 6 months he was happy enough to accomodate this. To be honest, I cannot remember what way it was left. I do intend to email him this week to ask if I now can be reviewed every 6 months. Looking at my last echo report the only mesurement given is that of the "Aortic Root" and it reads 3.5cm. As echo's don't always necessarily measure the entire aorta (or as it looked in this case, the ascending aorta) I really do not feel comfortable that there was a reading taken at all.

To be honest, I never had a CT scan either up until last year. And I would say, had I not of been pursuing the possibility of continuing my sport so aggressively, i may not have been given the option either! My cardiologist at the time (who is now semi-retired) was very good in this regard and did absolutely everything (e.g. 24 hr BP testing, CT Scan, Stress Tests, Print outs of all my echos and ecgs over the 6 years) to help me come to the best decision for me. He supported my quest to go seek other opinions, and even offered to speak to a top Cardiologist in Cleveland, to see if anything further could be done.

Her'es one for all the posters on this site, to highlight the complete naivety of some of the "so called" experts in this field. I went to the Olympic Medical Centre in Harrow in London, to get the opinions of some so called "Sports Cardiologists." I brought all my test results from home with me and took a stress test when I was there. This was the advice I got, word for word:
"I have advised against further participation in competitive sport because of his aortic root dilatation of greater than 40mms. I have recommended that he should have repeat evaluation with transthoracic echocardiography after periods of 6 and 12 months to seek the possibility of an improvement in his current dilatation. If this were to be achieved then it would be safe for him to return to competitive sport. I have told him that this possibility is not certain and have quoted a chance of perhaps less than 50%.

At the time this guy had given me hope, that was until I discovered that the chances of my Aorta dilatation regressing by at least 4mm was absolutely absurd!! Perhaps less thana 50/50 chance he said!!

Does anyone else think this was completely naive and inept of this "Sports Cardiologist"?? After I had discovered that this was complete nonsense I emailed him asking him what evidence he was basing this on. Guess what? No reply!!