Need perspective

[francie12]

Hi, everyone--I'm still in heavy research mode for my son, Matt (12 yrs, bicuspid AV, mod. insuff., LV at 5.4, up from 5.1 in June) I'm studying up on BAVD and talking to cardios and surgeons about pros and cons of the Ross Procedure, ACE inhibitors, etc. In the process of trying to find the best poss. surgeon (100+ RP's) to weigh in with a second opinion, I ended up having a lengthy conversation with a very experienced surgeon. I gave him Matt's statistics (all over the phone) and made an appointment to see him and the peds cardio that he works with in one month. When the nurse called me back to go over details of the appointment, I was surprised to learn that the surgeon thought Matt's LV dimension was "pretty large" and that she was assuming surgery would be happening soon ("hopefully we can hold off until summer"). I was shocked by this as our present cardio has a much more wait and see attitude, starts to think of surgery at around 7.0, ACE inhibitors around 5.8, (all depending on ratio to body size in a growing child of course). I know from here that in general surgeons tend to favor moving to surgery earlier than cardios, but there is a huge discrepency of opinion here. I may be jumping to conclusions--Matt has not even been seen there yet. I guess we'll keep the appointment and then seek a third opinion if we need it. But I would love to have the thoughts of all you experienced people.

 

[barry70]

I know your sons situation is different, but I have 4+ Severe Mitral Regurg and my regular cardio once mentioned to me a couple years ago that I "may" need surgery in about 20 years. He is very against surgery any time soon. My LV Systole is still normal at 3.0 (but, slowly getting bigger) and my Ejection Fraction is still normal. I do not have symptoms to date. A new cardio thinks I can have surgery now or wait a year or two. Surgeons generally want to sign me up today or think I can wait a little while (but not too long). End result is that I will likley get this done in the next 1-2 years. But, the point is that yes, cardios and surgeons do disagree on timing quite often. The literature is moving towards doing it before symptoms arise in a non-symptomatic, young guy like me - ie: sooner rather than later. See this thread from the Heart Forum from the Univ of Md that I started: http://www.medhelp.org/forums/cardio/messages/C35020-8.html

good luck to your family!!

 

[Oscar61]

Hi Jane,

Read through the post. I think we are both pretty familiar with each others situations to this point . Some new details here. One thing I was surprised about is that the nurse who you spoke with seemed to tell you what the doctor was thinking (supposedly), and you hadn't even been in to meet with this doctor yet. Breach of protocol I would think.

As I have mentioned to you in the past, my own cardiologist seemed to think 6.0 (again I have no other factors that would play in to this, ie: tissue, aortic root, etc. to the best of my knowledge) was a begining guideline for the thoughts of surgery. Obviously somewhat in contrast to what your card. would say. As I am sure all of us have read, we are going to get different opinions from different cardiologists/surgeons. I think we all would wish that their was an EXACT number, or an EXACT guideline that EVERY card./surg. used. That is the part that makes us unsure or hesitant. "How can the one card. say this, and the other say this". Again, as I've said to you before, I'm not sure how the numbers in regards to EF or LVEDD translate from a 12 year old to a fully developed adult, as you eluded to in your post. That would be my biggest question in regards to Matt directly. Beyond that, it seems that we just need to find a doctor we are comfortable with, educate ourselves and absorb as much as we can so we can make the best decision possible based on our cardiologist's/surgeon's advice and that self education.

Another piece of common sense advice (or so it seemed after getting it ) that I think relates to your situation. When mentioning to my cardiologist I would at some point be looking for a second opinion (again, I love my doc) she told me she completely agreed, and furthermore, if I recieved a different opinion in that second opinion, then to get a third and go with the two that coincided. It seems, initially atleast, that you are getting two very different opinions from two different doctors. We search for more opinions in the hope to clarify what we should do, and instead sometimes we get further away from that decision.

The one thing I will say is from your own words....Matt is running up and down that court and to look at him you would never know. THAT to me is a big factor. Alot larger than I think some people give weight to.

It's hard to be completely comfortable with a doctor you haven't even met yet, although it seems he was highly recommended. That is always a good feeling. Let us all know how Matt's first echo and appointment with this cardiologist goes. I'm sure you will know whether you are comfortable or not after meeting your new doctor. You know we are all wishing for the best.

Jay

 

[tobagotwo]

There is a lot of back and forth about when to do things. Mine was 5.8 when I had surgery - still at the edge of normal.

While it should only be one part of many considerations that go into timing of surgery, 7.0 sounds enormous to me. The main idea should be to allow the patient to keep his own equipment as long as reasonably possibly, but make absolutely sure that surgery is done in time to ensure no permanent changes to the heart.

It's a tall order, and cardiologists tend to want to wait longer than surgeons. It's as if they want to protect their patients from the surgery as long as possible, while the surgeons want to operate on a healthier heart to get a better result. I lean toward the latter, but both sides have their supporters.

Best wishes,

 

[gijanet]

I fully endorse..........

I fully endorse..........

seeking out additional opinions if you feel the need. After Katie's first surgery, we sought out a total of five surgical opinions from the larger pediatric heart institutions. Fortunately, for us, pediatric institutions do not usually charge for additional opinions.

While Katie does not have an aortic valve problem, I do know that her surgeon does not want her ventricles enlarging significantly. Since our valve repair went south last May, we have had almost monthly echoes to ensure that Katie's ventricles are not showing signs of enlarging (since Katie has a common AV valve - mitral and tricuspid merged - both ventricles would be affected). We are simply trying to wait until the one year anniversary from last year's surgery before we go in again (like I am the one doing the surgery here! ). Her surgeon did stress, though, that if her ventricles were to enlarge, that we would be going in sooner. Given time, most hearts will reduce back down to normal size, but not all - just ask Ross! Just reading the posts here, it does sound like surgeons are more anxious to get patients on the table sooner as opposed to later, but that could be because they see the damage done up close and personal like.

HOpe you can come to some decisions that provide you peace, and please remember that there is absolutely nothing wrong with an additional opinion.

Hugs. J.