Aortic-root aneurysm

[Judy12205]

Thanks for those links. I believe I've seen those before...but, to be honest, I'm a bit overwhelmed with links right now, so I hadn't gone back to them...which I'm doing now. I also think this is rather interesting: http://kaiserhealthnews.org/news/me...ls-with-highest-rates-of-infections-injuries/ . Cleveland Clinic, supposedly the #1 hospital, is on this list...but not the two Albany hospitals I would consider.

 

[Garserin]

Hi Judy, I was in a similar situation as you. Aneurysm involving the root but also the ascending aorta. It measured 4.7 cm when it was discovered,( my GP heard a murmur during a regular check up and I had an echocardiogram). Since the Mayo Clinic is less than an hour's drive away I was referred there and followed with 6 month and/or 12 month echoes or CT scans.

At that time I was told i could wait until the size increased to over 5 cm before even considering surgery. Since I am a 5'3" woman they would suggest surgery at an earlier date than if I were a 6' man. To make a long story short, my aneurysm went from 4.6 cm to just under 6 cm in five years, growing slowly to 4.9 cm where it stayed fairly stabe for a few years and in the year before surgery really ballooned rather fast.

To answer some of the questions you raised I never slept in anything other than a bed, the first week on my back and after that on my side also. One week after surgery I felt pretty good. I felt very little pain from my insicion, in fact my shoulders and back bothered me a lot more. Since I live alone, I went to a rehabilitation facility for 6 days right after surgery.

Are you considering valve repair? If so, you might want to consider traveling to a top notch heart center like Cleveland or Mayo. I believe Mayo is now the #1 hospital in the Nation and ranked #2 in cardiac surgery, just a tiny bit behind Cleveland.

I would be happy to answer any particular questions you have if I am able to do so.

 

[Judy12205]

Thanks for your input. Where do you live relative to Rochester, MN? My anxiety-producing issue is traveling for surgery. Very few locations are a nonstop flight from Albany, NY, and I can't imagine having layovers after heart surgery! I'm sure people do it, but they must be more laid back than I am. <sigh> And riding in a car for that long a time doesn't sound like a lot of fun, especially because we would have to stop every hour so I can walk around. It's interesting that they allowed your aneurysm to grow to nearly 6 cm! After telling you (as they've told me) that based on your height, you should have had surgery sooner than a taller person, why did they wait? It appears that I am going to need valve replacement also. I'll know more probably tomorrow since I had a CT scan yesterday. More testing is on the horizon also.

I'm interested in how you felt after the surgery. That's reassuring (although shoulder and back pain isn't fun either!).

Thanks again for your message.

 

[Garserin]

Judy, I live about 40 miles from Rochester. Everyone is different of course, but I would have travelled quite a distance to have my surgery done at Mayo or other Center of Excellence as far as heart surgery was concerned. Usually people who fly to Rochester to have surgery stay at least a few days in a hotel close to the Mayo Clinic before flying home again. Could be pretty stressful I imagine.

My aneurysm was really stabe for a number of years at about 48/49 mm. My husband passed away towards the end of 2009 and shortly after that I had my annual Echo which was ok and showed no increase in size. A little more than a year later, April 2011, I had another echo which then showed the dramatic increase and of course severe regurgitation. Possibly the passing of my husband had something to do with that because that was a very stressful time for me. Also, my left ventricle had started to enlarge even though I still had no symptoms doing everyday stuff, just when I really pushed myself with hiking steep hills, etc.

The doctors at Mayo were not too concerned as long as the size stayed under 5 cm, especially since I have a tricuspid aortic valve. As soon as they discovered the dramatic increase in size I was scheduled for surgery, valve sparing if the valve was in good shape.

I was surprised that I felt as well as I did right after surgery. I expected it to be so much worse. I realize I was lucky that my recovery went so smoothly. Other then a little a-fib right after surgery I did not hit any of the speed bumps that some members of this forum have had to deal with. Did not have much of an appetite the first week and also tired real easily. I probably took 2 or 3 short walks daily the first week post op (starting a few days after surgery).

 

[river-wear]

FWIW, I traveled from California to Philadelphia for surgery. I planned to stay in the area for two weeks following surgery, which turned out to be a good thing since I got re-admitted a day and a half after getting out - and then stayed another 3 days (a-fib complication - it's pretty common). Flying home was a little scary for me, but it was really in my head rather than a medical issue. I did arrange wheelchairs for moving around the airports. I felt a little silly, but it was a great help. Also, since I was in a hotel post-op, I never used a recliner. Frankly, I find them rather uncomfortable too so I probably wouldn't have tried one anyway. I did use two pillows to raise my shoulders slightly when sleeping. You'll get used to sleeping on your back - there's really no alternative for awhile!

Good luck.

 

[Judy12205]

I appreciate everyone's input. I'll be interested in learning the results of yesterday's CT scan. The period during which there was a fair-size increase in the size of my aneurysm included two trips to Jacksonville from Albany. Then when we were in Florida at the end of January, I realized that my blood pressure had spiked and may have been high for a week! That leads me to believe (with no proof, of course!) that the same thing may have happened during the prior two trips and could have affected my aneurysm. If (and I emphasize the "if"!) that's the case, I think perhaps traveling two and from a hospital could be more detrimental than the differences in hospital rankings. First I have to learn what the CT shows. As of my last CT, the aneurysm was 4.7 (and a later Echo showed 4.8), so it will be interesting to see whether I've reached 5...or not!

 

[Dan Zulu]

I have a healthy tricuspid aortic valve and am healing well from a David procedure. My travel time from hospital to home was about an hour but I felt pretty good. I was mainly bored in the hospital but couldn't concentrate on a movie or book. I resumed working day 7 and was back to work full time on day 10.

 

[Judy12205]

Wow, Dan Zulu, that's great! My most recent CT scan (without contrast due to lowering kidney numbers) was 4.4 cm, as opposed to the 4.7 cm last August...also without contrast. So both the evaluations were "suboptimal." I have an appointment Thursday with the local surgeon I'm seeing; I suspect he may order an MRA next. We'll see....

 

[Judy12205]

Yesterday was my second appointment with Cardiovascular Surgeon Dr. Niloo Edwards, Chief of Cardiac and Vascular Services at Albany's St. Peter's Hospital. We reviewed my recent CT scan, which showed my aortic-root aneurysm to be smaller than in the previous scan! No, they don't shrink...but Dr. Edwards has confidence in the radiologist that read the scan (which is why he wanted me to have the scan at St. Peter's Hospital), and he doesn't want to see me for a year. To my way of thinking, at least the aneurysm hasn't grown! Meanwhile, of course, I will continue to be followed by my cardiologist, who I am sure will send me back to Dr. Edwards if he feels it's necessary. We do have to continue to watch my aortic-valve regurgitation, but my heart continues to function well, and I don't seem to be having any symptoms (e.g., shortness of breath), thank goodness. Dr. Edwards again very patiently answered my questions, and I didn't for one minute feel rushed.

I doubt that the story is over yet. Thanks everyone for your input...and I expect to be back in the not-too distant future.