Echoes, Swedish Doctors, and Open Heart Surgery

Finally: I Get into The Echo Lab

Up to the end of October I had never met anyone at Stanford that focused on bridges. The cardiologists I was working with Dr. Mahaffey, Dr. Rodriguez, and Dr. Yeung (all excellent and fantastic) were not bridge experts. But, I had heard "whispers" of a "bridge team" and their leader.

Specifically, I had heard mention one or two times of a Dr. Schnittger. But, did not know much beyond the fact she studied bridges and was the head of the echo lab. So I was pretty happy when I managed to schedule the Stress Echo and an appointment with Dr. Schnittger less than 24 hours after the test. 

The test day, October 29th, rolled around and at 8:45 in the morning I was checking in at the cardiac clinic desk to get registered. 

Aside: I have always been totally supportive of gathering as much data about my bridges as possible. Both, because more data is good for choosing the best treatment for me; but, also I hope that with a better understanding of severe bridges they will be recognized as a real source of problems by the general medical community. I really am convinced that not all bridges are benign. So although this test was redundant for me at this point I would have volunteered for it anyway. However, I have do admit that I was really kinda psyched that the stress echo lab is part of Stanford's non-invasive (and non glow in the dark) imaging capability.

All of the other tests I had been given involved probes inserted into my heart and/or a really big dose of x-rays or other radiation. I was tracking my exposure using the great free exposure calculator located at this link and it was really starting to add up. I will have been exposed to to about 54 mSv of radiation, which is roughly equal to 1,080 chest x-rays, over the course of this journey. (For comparison: Fukushima towns where exposure is rated at  >50 mSv/yr are "difficulty of return" and require remediation.)  

Anyway, shortly after being registered I was lead back to the lab. This room was not freezing cold (hurray) nor did it have that "hospital organized" look. It reminded me very much of a working lab. Not saying it was messy, it was not, it just looked efficient, used, and highly functional. Upon walking in I met the awesome tech whom clearly was expecting me. She told me that Dr. Schnittger was pretty pissed that this was the earliest that I could have gotten into lab. And, apologized several times, for how busy they were. (I later found out that the usual bridge diagnosis flow at Stanford starts with the stress echo and then might include some of the other tests. But, because of schedule issues and just how my case presented I sort of did the whole thing in reverse. I did the most invasive and riskier tests first rather than waiting to see if they were really necessary. Oh well, I have never been great at doing things "the right way" anyway.) 

As she was getting set up I asked the tech what the purpose of this test was and why everyone had been so eager for me to have it. I told her that from everything I had read online this test did not have anything to do with bridges. She informed me that Dr. Schnittger (and team) had developed a new method of reading the results of the stress echo and could very accurately predict the presence of Myocardial Bridges. So it was important initially to help understand if I had bridges. But, now it was still valuable as it could further prove the validity of their screening algorithm.

I was glad to be of help even if the outcome was not really going to be directly relevant to me (after all I already knew I had bridges). But, it would be great if this test that anyone can take, involves no radiation, and no surgical procedures was universally accepted.

The test itself is very simple. 

1. Set up a 12 lead ECG. Lie still for a bit. 
2. Get ultrasound pictures of the heart while lying on my side. 
3. Run on treadmill (I pushed as hard as I could and was proud that I maxed the machine out).
4. Literally jump off treadmill and hop on table on my side for another ultrasound.

Done. Simple. Non-invasive with no risk of superpowers. 

Afterward I stopped in the cafeteria, which is on the first floor right under the lab, and had a banana and black coffee to celebrate finally getting into the bridge clinic and the opportunity to speak with a world class expert on my condition.

Meeting Dr. Schnittger:

The next morning I was at the clinic (which is really just a block of schedule carved out for bridge patients in the regular cardiac clinic) 20 mins early. I really did not want to be late because I wanted as much time as I could get with Dr. Schnittger.

Unexpectedly, 10 mins before my appointment was even scheduled Dr. Schnittger's nurse coordinator came out to get me and presently I was perched on butcher paper. And, after going over a bunch of questions with the coordinator Dr. Schnittger showed up. 

Now I was really hoping to get 20 mins of her time to go over my case. I figured 20 mins was going to be pushing it given what I expected her schedule to be. So I have to admit I was totally floored when she spent well over an hour with me. She started by covering my condition. But, since I had been studying it so much already we were able to jump right into the details rather than do the whole overview – which left even more time for questions. 

But, before specific questions about my condition I had a different objective. My priority was to ask if she would take over my case and thankfully she agreed. (Dr.  Mahaffey whom was my primary cardiologist up to this point had already intimated that he thought this would be a really good thing so no worries there.)

Here is what I learned from that initial appointment:

1. The conference of Stanford cardiologists could not really agree on a clear path for me. My plaque was serious but not severe enough to require addressing. (Mine was measured by angiogram at ~60% and ~70% is the threshold). And, of course, since there is no universal agreement on bridges even being a problem there was no agreement in conference about them either. 
2. Dr. Schnittger believes there is good evidence to show that plaques caused / influenced by bridges are more brittle than normal. Brittle is bad because a brittle plaque can break or crack and then form a clot. And, plaque + clot in the LAD is the reason that the LAD is called "The Widow Maker" it's a Very Bad Thing™
3. The bridge on my LAD is one of the most severe Dr. Schnittger has seen. Oh…Yay.
4. The bridge on my left circumflex is also "bad" but not as significant as the LAD. First, because the circumflex is not as critical as the LAD and second it does not fully close the artery. So it probably is not as much of an issue.

When I asked the $1,000,000 question: "What should I do?"  I was not exactly hoping for the answer I got. It basically bolis down to this I think: It turns out there is a sorta a rating scale for bridges and only those in the highest category are clearly recommended for surgery. I am still very functional with my bridges. The people that are in the highest category experience Sedona like attacks just walking from the car to the house. That is not me. Basically, neither my symptoms nor my plaque were severe enough to mandate surgery. (Update 2/5/16: After my 2nd Cath Lab trip this changed and I become a clear candidate for surgery based on new findings – 4 bridges rather than 2. And, a second bad plaque)

However, after that bombshell, things got a little better (or more nebulous depending on your point of view.) She told me that if I wanted to have unroofing surgery she would absolutely be with me every step of the way and would completely support my decision.

But - I was going to have to be the one to push for it.

I told her that I needed to think about the surgery a bit. I wanted to weigh all the data before making such a massive decision and at that moment was just "too close" to do so rationally. So we made a follow up appointment for a month later and I thanked her for taking the extra time with me and for the open and direct conversation.

That first meeting proved to me that Dr. Schnittger is kind and supportive but also direct and candid in her presentation of the medical facts and very clear about what is "known" and what is not. A super skilled, no nonsense, personable doctor and I am very lucky she is my primary cardiologist.

Open Heart Surgery:

I had a month but it only took me two weeks. 

We have come a long way from this!

Open heart surgery is a big deal but it is not as big of a deal as it used to be. Stanford is one of the best places in the world for getting it done. I am young (ish) and healthy but as time passes the first is guaranteed to be less true and the latter is unlikely to stay the same either. So, if you assume I must have the surgery at some point in my life now is better than later.

But, for me, the biggest reason to consider the surgery is the plaque. I really do think that mine is, at the very least, accelerated by the bridge on my LAD. With such a severe bridge it is only going to continue to grow but because of the bridge it can't be treated. That makes it effectively a ticking time-bomb. I firmly believe that at some point it is going to cause a very large problem – a problem that I probably would not survive.

And, I am just not ready to check out anytime soon. 

So two weeks later I contacted Dr. Schnittger and said I wanted the surgery and was ready to do what it took to make sure it happened. 

As promised she was very supportive and we got the next required test set up. A CT scan of my heart. This would help give the surgeon a good map of where the bridge was. A map he needs to know what part of the heart to uncover and where to find the affected section of the LAD.

Bad news was this scanner (even Stanford only has a single scanner that can do such a complicated scan) was booked until December 17th which was just about a month away.

More waiting. (But, no complaining.)