Mini-Sternotomy for Ascending Aortic Aneurysm and Bicuspid Aortic Valve ...

This is exactly the procedure that I need, with the exception that I need a replacement aortic valve rather than a repair. I would think that replacing the aortic valve would be even easier than repairing the native valve.

Surgical Consultation No. 1

On Monday, January 5, I met with a cardio-thoracic surgeon at Penn Presbyterian Hospital, a branch of the Penn Medicine health care system in Philadelphia. Unfortunately, my husband and I were forced to wait over two hours past our appointment time before we finally got a chance to talk to the doctor himself. While the consultation was valuable in terms of adding to the information we need to make decisions about my surgery, we both felt that this particular surgeon would not be the best choice for me, and we were disappointed in the way we were treated at the facility. Unlike my meeting with another surgeon back in 2009 at a different branch of Penn Medicine, this doctor was at least personable, honest and sincere. He was also willing to listen to our concerns and to try to accommodate my wishes in terms of how I view the procedure I need. In particular, while he initially indicated that his conservative approach would be to not address my 4.6 cm aortic aneurysm at the time of AVR, he agreed to replace it after I indicated that I wanted it addressed. At first he told me "I don't think it will give you any problems." Perhaps not, but who wants to have open heart surgery and not see the surgeon correct an aneurysm that could potentially dissect in the future or require another operation? This captures the difference between the approach of this surgeon and the approach that I need. I don't want a conservative approach. I want a surgeon with a proactive approach willing to fix as much as possible as long as he is in there. So Wednesday we meet with another surgeon at a different facility. Hopefully, the experience will be better and the surgeon will prove to be more in line with my needs and expectations.

Tomorrow It Starts

Photo: Holiday greeting from my friend Wolfgang in Leipzig.

Tomorrow Dan and I meet with the first of two surgeons that we will see this week. We'll see how it goes.

Two Surgical Consultations Next Week

Photo: Philadelphia's Newly Re-designed Dilworth Park at City Hall

I'm meeting with two different surgeons next week. One is associated with the University of Pennsylvania hospital and the other with Temple University hospital, where my cardiologist works. I'm compiling a list of questions to ask. But first I will give each physician a chance to propose a course of treatment. I think I have to listen closely first before peppering them with a lot of questions. I've sent my records to both so they should have a pretty good idea of what they would do before I get there. I'm taking my husband Dan with me so we'll have four ears and two heads to process the information. The obvious questions are about AVR, (prosthesis type, etc.) and what to do about my aneurysm. Also, how quickly can surgery be scheduled? Other questions have to do with the surgery itself, but I don't want to get too far out ahead of things, like I was six years ago when I first met with a surgeon. It wasn't time then I was told, but I think it is time now. How many more heart attacks and strokes do I have to have?

The Risk Of "Smaller" Aortic Aneurysms

CT scan of my aortic aneurysm

Aortic dissection is a medical emergency. Those of us with BAV have to be concerned if we have an accompanying aortic aneurysm, even if the aneurysm is relatively small. Consider the results of this research:

IRAD (International Registry of Acute Aortic Dissection) produced a paper entitled: “Aortic Diameter > 5.5 cm Is Not a Good Predictor of Aortic Dissection” in the journal Circulation in 2008...investigators found that an astounding 60% of acute aortic dissections occurred in aneurysms that measured less than 5.5 cm at the time of diagnosis, 40 % in those that measured less than 5 cm, and approximately 25% at sizes less than 4.5 cm... investigators do not give us guidance on why thoracic aneurysms can and do rupture or dissect at these 'smaller' sizes, but it is important to recognize that they can and that we take them seriously in terms of risk stratification and counseling.

The new 2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Disease acknowledges the risk. Here is the recommendation for patients with BAV undergoing AVR:

Class IIa2.Replacement of the ascending aorta is reasonable in patients with a bicuspid aortic valve who are undergoing aortic valve surgery because of severe AS or AR (4.2.3and5.3.3) if the diameter of the ascending aorta is greater than 4.5 cm. (Level of Evidence: C)

TEE Bicuspid Valve

The images from a TEE (trans-esophageal echocardiogram) are rich in detail. I can see why the TEE is the gold standard for evaluating heart valve disease. This is a video that I made from my TEE and it shows my stenotic bicuspid aortic valve.

In the Interim: Waiting For Surgery

There is the tendency to spend too much time looking up medical terms, watching medical videos, etc. When I was in the hospital I watched videos of each procedure I was to have prior to getting it. My husband Dan thought I was crazy and that I was making myself into a basket case. But I feel that it helps to be in the know. For example, I think it helped me to warn physicians that I would have a problem tolerating a closed MRI and that my swallowing difficulty meant that I would likewise have problems with the TEE. Bottom line is that they knocked me out for both and I did fine. OTOH, watching a video of the new through-the-wrist cath technique lessened my apprehension about that procedure as soon as I found out that they would do it that way for me.

I don't spend all of my time doing research. I am back to taking my two one-hour walks each day, and I spend time with my trains and doing holiday things too. But I also have to be an informed patient and come prepared when I meet with my surgeon candidates. Therefore I do some amount of research every day. The other day I watched a video of what I believe will be very similar to my surgery: minimally invasive isolated aortic valve replacement. Here is the link to page with the video:

http://my.clevelandclinic.org/services/heart/patient-education/videos/valve-surgery-faq-videos

Now, a lot of things have to fall into place in order for me to get this minimally-invasive AVR option, but it's what I am hoping for. This is because minimally invasive surgery is less stressful and recovery times are shorter. On Tuesday I get a CT chest scan to assess the size of my ascending aorta. If the aneurysm is too large and needs surgical attention, then I suspect that a minimally invasive approach will be ruled out for me. However, last time it was measured it was dilated but stable. 4.5 cm is the cutoff...mine was at 4.2 cm. So we'll have to see.

The other issue is the surgeon...does he do mini-sternotomies....if so has he done a lot of them? This brings me to the whole issue of preferred surgeon and hospital. If I had my wish I would have my procedure at the Cleveland Clinic. That is the platinum standard in the US for heart surgery. Sure, I will probably get excellent care and an excellent outcome in Philadelphia, but Cleveland sets the standard for the nation. It is their website that I go to for information, videos and explanations. I have been following their renowned surgeons for years. I even have a favorite surgeon there. Dr. Roselli. I would go with him in a heartbeat (mine! :) But I live in Philadelphia so I'll try to be satisfied with someone here. Hopefully I'll find someone...either the surgeon my cardiologist recommended, or someone else. Luckily, I have time, although the clock is ticking and I definitely don't want another heart attack or stroke.

I just spent a week in the hospital. The curious thing is that nothing was done to correct my problems. Just a lot of testing but at the end of it all, I was discharged with no therapy having been done. They figured I had coronary artery blockages. I was pretty sure I didn't. I was right. You could almost feel the disappointment of the lead doctor responsible for my care when he told me I was being discharged. There was nothing he could do for me. I needed AVR, not CABG or a stent. So that's where we are!

I am really enjoying being home and playing with my "son" Loki. As a dog person, I never thought I would be so close to a cat. He's on my desk all day, we take naps together, we sleep together...we're hardly ever separated when I'm in the house. Dan has been just wonderful and our friends have been very supportive. Life is good. We'll make it all happen.