My husband is having surgery in July

[Kevin's wife]

Hi everyone.

My husband ,Kevin, will be registering soon but I couldn't wait. We have both been visiting this site for awhile and have found it very helpful. As a concerned s.o.I have a few questions for you all.

Kevin has known he had a bicuspid valve for 15 years---he is 48 now---, but was told at the time it was diagnosed that it was no big deal, but he should take antibiotics before going to the dentist. He had almost forgotten about it, but decided to mention it to our internist last November. An echo was done the next day, and a CAT scan the day after. His valve is not that bad, but he has a dilated aorta. The doctors in Seattle said it was "only" about 4.7 centimeters. They said we should monitor it and do elective surgery when it got to about 5.5 cm. Meantime, another CAT scan was scheduled for February. We had consults with two surgeons in Seattle, who agreed there was no immediate concern. We were told that there was no growth after the second CAT scan. It concerned us ,however, that the radiologist's written report said that it had grown as much as .5 cm. We never got a good explanation of the discrepancy. By the way, both surgeons in Seattle said that when the surgery was done, they "might as well go ahead and replace the valve" with an artificial valve.

I thought these doctors' attitudes was very cavalier, and our research on the internet made me think we weren't getting the full scoop. They didn't even seem that concerned about Kevin's blood pressure, which varied, but could reach as high as 130.

We found the aortic surgery center site for Cedars-Sinai very informative, so decided to go for a third surgical opinion from Dr. Raissi. We sent all medical records and CDs of CAT scans to Dr. Raissi and scheduled a consult for June 9. We haven't even met doctor Raissi yet, but after reviewing Kevin's records, he thinks Kevin should have surgery soon. He read the CAT scan as 4.95. He also has Kevin monitoring his blood pressure every day. He said Kevin's valve isn't that bad, and might not have to be replaced. He put Kevin on alpha inhibitors as well as the beta blockers to control his bp.

Boy, what a differenc in level of care. I feel so much better, now that we have a surgeon who is taking this seriously. I love my husband, and we have two teenage boys. I don't want him to be at risk for a dissection. I want him around for old age.

The plan now is to go ahead and travel to LA on the 9th for a last MRI at Cedars, and to meet and Dr. Raissi and get all of our questions answered. If he makes us as confident in person as he does over the phone we will travel back to LA and do the surgery on July 6 or 7.

I have some questions for the experienced.

1. Our boys know about the surgery. The 16 year old is scheduled to be at camp for almost the whole summer. The 14 year old has no particular plans. They both know about the surgery, but not the gory details. What has worked with you in dealing with children? What has not worked?

2. I noticed that since Kevin has started taking the alpha inhibitors (he'll have to tell you the exact rx) his face is very red and blotchy. Has anyone noticed this as a side effect?

3. Does anyone know of a good cardiologist in Seattle who has worked well with Dr. Raissi in the past?\

4. Since we are travelling to LA for the surgery, I'm wondering if you have any tips about where to stay, what to bring, etc.

5. I'm sure I'll have more questions, but that's it for now.

Thank you all,
Julie

 

[tobagotwo]

My son was 15 when I was diagnosed, but he was brought in as fully as he seemed interested to know. I basically gauged it on his response. I didn't have the surgery until he was 19, though. He had time to adjust.

I did make sure that I told him about things that he might see in the hospital, and which scary-seeming or scary-looking things weren't really things to worry about.

5.0 cm is definitely surgery time for aneurisms per most of us on this site, so your new surgeon is right on. The variation between readings, even with good equipment is unfortunately normal. If it's close enough to the prior reading, they will often declare it as unchanged, based on those variations.

The thought of replacing the valve is not cavalier, as the big deal is to get into the chest with the heart. Their thought is to avoid a second surgery later for the valve, which is reasonable. Their bedside manner could certainly use some attention though, if that's the impression they made on you.

Best wishes,

 

[hensylee]

welcome, Julie, We look forward to meeting your Kevin. We have several members who have traveled distances to have surgery. He won't need to carry a whole lot with him, but you might want to take some books for yourself. Be sure to stick as close to him as possible while he is in the hospital to be sure he's getting all the care he needs. My nurse cousin came to me from Houston, stayed in a motel room at night, and with me during the day. When a family member is close, I think the staff is more on their toes. Other members will be along (after this busy weekend) and you will have tons of information and 'what should we take' answers.