Can you shed some light?

[Tammy]

My 10-year-old son has been diagnosed with Aortic Stenosis since he was 7 months old.  He had valvuplasty at Toronto's Hospital for Sick Children when he was 4.  He goes to Toronto for surgery, but his regular Cardiologist is in Hamilton at Mc Master. Last April he went for his routine Echo and ECG.  They noted that his valve would need repair again possibly this year.  T.J has always experienced some chest pain while doing some types of physical activity (i.e.: playing basketball) Lately it had become more often, and when he had a major episode of chest pain I called the Cardiologist on call, and rushed him into the hospital.  Through another ECG and Echo he discovered a ballooning artery.  Finding information on this has been difficult.  The closest thing I have been able to find is an Aneurysm of his Ascending Aorta.  I was told that it is 50% larger then the Aorta should be, and is due to his Aortic Stenosis.  If that wasn't bad enough, after reviewing his previous Echo's I found out that it was like this last year.  That means they either missed it last year or didn't tell me.   He called the Dr. in Toronto and he said that neither the valve or the ballooned aorta was bad enough to fix yet, and to have another Echo done in August.  
My questions are:
1. Why are Dr.'s so afraid to tell Mom's the whole truth, and not just part of it?  Dr.'s really need to give us more credit.  We are not lunatics ready to jump off a pier when we get bad news.
2.  Do they have to wait so long?  Do they not realize how difficult this is not only for the parents but also for the child that they have put so many restrictions on?  Tell me how I can keep a 10-year-old from wrestling with his buddies, jumping from tree's and just all in all being a boy?
3. What would they do?  They said that they might have done Ross' procedure on him when he was 16, but because he is so young what would happen now?  How might they replace the Aorta where the Aneurysm is on a 10-year-old?  I have come across lots of info on adults but haven't been able to find anything on children with this problem. I was told that in all likelihood they would do both procedures at the same time.  
4. Is this a common complication of Aortic Stenosis?  I can't help but think if they would have stretched the valve sooner the ballooned Aorta would never have happened.  
5. Would it be worth it to get a second opinion from a surgeon?
Sorry so many unanswered quetions and no one to ask.  Thanks very much for your time

Tammy

[Cleveland Clinic, MD]

Dear Tammy,

Thanks for your questions.  In regard to #1 I'm pretty sure your son's doctors were not trying to with hold information from you.  More than likely the results were noted and follow-up planned.  As far as #2 the timing of surgery is more of an art than a science.  In general it is better to wait as long as possible before going to surgery.  Until then your son's doctors can tell you about any specific physical limitations.  They may not be as strict as you think.
3. There are several surgical options (including homograft) and most likely the aorta would be fixed at the same time as the valve.
4. No, generally aortic aneurysm is unrelated to aortic stenosis.
5. If you are unhappy with your son's care it may be worth your peace of mind to get a second opinion.  We would be happy to see him here in our congenital heart disease clinic.  You can call the number below to make an appointment.  I would recommend Dr. Dan Murphy or Dr. Doug Moodie.

[Larry]

Tammy, Im approximately 12 months post op with assending 5.5 cm aneurysm and St Jude mechanical aorta valve.  All was accomplished at the Mayo Hospital.If I had one piece of advice to give to you,is to get another opinion from a qualified heart surgeon that accomplishes this type of operation on a regular basis.  This operation is done daily but should be accomplished by a hospital and surgeon that does it on a regular basis not the county hospital, its a very delicate surgery as my family doctor told me and not everyone is qualified. I'm 50 yrs old male and after 8 wks I was back at my original jobs.  Please get some additional advice.  When I was in the hospital seemed like I was in the middle age bracket for there were babies and the elderly having the same operation. The operation is not a piece of cake but but nor is having anuersym burst. The size of the anuersym will determine when they will operation what I was told anything over 5.0 cm should be corrected, and both the valve and anuersym will be done.  The use a Dacron Graft for the aneursym and the valve well there is a number of choices. If you would like to correspond or if I can be of any other help in my small way please email me larry.r.***@****

[Harvey]

Tammy, I also was diagnosed in Toronto when I was 3 years old. Aortic Stenosis. I had a bicuspid valve and they didnt want to do any thing with me because in 1957 the doctors didnt know much at all. I had the same procedure that your son had when I was 9 years old by the pioneer on the subject Dr. Mustard. I was told that they would have to keep an eye on me and that I would have to have a new valve put in by the the time I was 20, well here it is 35 years later , I just came out of the hospital from having a Homograft Aorta valve put in, plus 2 dacron tubes, 1 for the Anurysm of 6.5 cm, plus another dacron tube in the first Artery coming off the aortic arch of which the anurysm grew into. I am not trying to scare you but to the contrary. I want you to know that the treatment I received there and the treatment I received after, at TGH. Was nothing but exceptional. I waited a long time to have the work done that I did but they know when the best time is. I now live in Cleveland Ohio and would be more than happy to speak with you regarding any of the mixed up,feelings that you will get. I ve been told that the Ross procedure is one of the best procedures now for children and that they dont do it any more on older patience.. Also this procedure should be done only by a Physician that does it all the time and has good results to his credit.I have many answers to your questions due to going thru this all myself, if  you want to talk, feel free to call me at ***@****