Appointment Outcome

Well, I'm not sure what to report. These appointments are very strange experiences at which things seem to happen, but when David and I leave we walk out and say, "Now what was that? Did anything happen?"

This time the doctor was very open to answering questions, but we're not entirely comfortable with the answers. We feel like we are still where we were before we went in.

The point of the appointment was to go over the recent MRI results, which we didn't really do. He pretty much gave us a recap of where we stand and reminded us that nothing can be done for David's heart until 3 or 4 months after the stroke anyway. I then jumped in and said, "At this point it has been 3 months." David asked if we should expect surgery within the next 2 months or so, and the doctor replied, "yes."

Apparently he is having a hard time getting the doctor in Sacramento to respond to him. This was the case last time we went in as well - that he had sent information and made a call but had had no response. This time, as last time, he called the Sacramento doctor while we were in the room and got his voice mail again.

So, basically we have no new information from the extensive MRI David had two weeks ago. In reading the report ourselves we saw that the MRI (3-D with dye and the works) showed no dilation of any chambers of the heart - no enlargement - yet the tests David had here: catheterization and trans-esophageal echocardiogram DID show significant enlargement. David and I brought this up and asked about it, and the doctor just brushed it aside and said that there IS absolutely enlargement. As I said in the last post, he reminded me again that I had SEEN it. He didn't seem concerned that it did not show up on the MRI.

Maybe that's a normal, typical thing, but I don't know. I didn't push the questions and dig further and ask why one test would show one thing and one another and why he was so confident there was enlargement when this extensive MRI showed none.

He repeated to us, as he has in the past, that David's case is complicated.

Every doctor I know personally (friend or relative) that I have made this statement to has said, "Well, I'm not sure what's so complicated about it. He has an ASD (hole between the atria), and that explains the stroke. This is not unusual." We did ask the doctor today why he says David's case is complicated.

Here's the deal. It has to do with oxygen saturation in the lower part of the heart and "communication" that is happening down there that shouldn't be (I don't know what that means). He had 3 cardiologists look at David's tests back in November, and one of them postulated that David may have a hole between the bottom chambers as well. This we had not been told before. Apparently that is why David had more testing (the recent MRI). Apparently the MRI was inconclusive on that. Apparently it would be bad to patch just the hole on the top if there is one top and bottom, so we need to find out if there is a hole in the bottom too. (Notice I'm using the word "apparently" a lot, because I'm making my best guess here.)

I fail to understand how the 7 or so tests he has had (trans-esophageal echocardiogram, MRI/MRA, catheterization, etc.) have not shown this if it is there. His doctor today said if he did not hear back from the doctor in Sacramento that he would just rerun the tests.

Oh goodie - those are some pretty invasive things to go through. What will rerunning them show? I suppose if they are now specifically looking for a hole in the bottom that may cause them to approach it a bit differently - I don't know.

SO, what we know is that this doctor is having no luck getting in touch with the doctor he wants David to go to in Sacramento (and has been having basically no luck with this for nearly 3 months), that the reason he keeps calling David's situation "complicated" is because of what he is seeing in terms of oxygen levels and "communication" in the lower chambers of the heart which might indicate a hole there as well, that regardless of the recent extensive test he remains certain that there is enlargement in David's heart (right side), that HE does not think that there is an additional hole in the heart but since that is a possibility we must check, and that his preference is to close the hole up top and continue to monitor David for ongoing enlargment and "communication" after his surgery and that if there remains a problem they can always "open him up" later to take care of any additional problems.

The doctor's vision for right now is to get David up to Sacramento for the closure procedure (via catheterization) and to have them do another trans-esophageal echocardiogram while he's on the table to double-check for a hole in the bottom chambers, and if there is one to take care of it at the same time - rather than running the same tests here in town again that have been done already here and continuing to try to communicate between these two doctors . . .

That's probably a jumble of information - if so, that's about how we felt upon leaving the office. I'm not sure how I feel about all that and am waiting for it to settle in. I keep hoping we're going to get somewhere when we have one of these visits, and then nothing much seems to happen at all.

I did feel better about this appointment than about our first one. Although he was clearly in a hurry again, he didn't seem defensive or evasive. I think this doctor kind of operates with an assumption that you already know what he knows, so he leaves gaps; unfortunately we don't know what questions to ask to fill in the gaps for ourselves. He seems genuinely concerned about David's case. I'm getting the impression that he is getting grief from insurance for what he is requesting for David. I'm glad we finally got the question answered about what is so "complicated" about David's case. That at least was something new we gained.

I'm still trying to process all this, so I'm going to stop there for now.