Ascending Aortic Aneurysm

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LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 5/31/2013 1:12 AM (GMT -6)   
Guess I'll start a new thread on this, since it's so popular here.

In April I found out through a "Keep the Beat Screening" at the Arkansas Heart Hospital that I have a thoracic ascending aortic aneurysm measuring 4.6 cm. My doctor got me on bp medication, HCTZ, which has had a profound effect. My systolic has dropped from around 140-160, sometimes up to 200, down into the 110-125 range in a month. He also referred me to a thoracic surgeon who sent me for an echo cardiogram and stress test to rule out valve problems or heart failure. The tests were fine, no problems except the aneurysm. He then sent me for a pulmonary study because I had experienced a couple of episodes of shortness of breath. I get the results of that tomorrow, but just from what the technician said I don't expect any problems there either. I think my shortness of breath may have stemmed from an upper respiratory infection I had just gotten over. Now I get to start the waiting game. Three months and a ct scan to see if the time bomb in my chest has grown. My surgeon wants me to avoid lifting, sudden physical stresses and generally anything that might cause a sudden increase in bp. It's hard to treat myself as fragile when I have no symptoms.
I can keep my mind off of it for the most part during the daytime hours, but at night it gets to me. I got a prescription for Xanax a couple of weeks ago and had only taken two. Tonight I had to take another.

LuciJ
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/6/2013 10:12 AM (GMT -6)   
Dear Last Banana, I am a new member today and also have the same condtion @ 4.2. I have had mine for 2 years and size has not changed. I can relate to the uncertainty and anxious feelings you are having. I also had them. But after some time and no enlargement I finally have some peace. Also a great thoracic surgeon told me to relax and just live my life. Best advice I received!!! 

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/7/2013 11:53 PM (GMT -6)   
The waiting is probably the worst part, but the restrictions really only preclude intense activities. There is a series of Pulitzer Prize winning articles by a journalist living with an aneurysm. In one of the articles he talks about completing a race (triathlon) and accomplishing his goal of doing so SLOWER than he has in the past. A different take on competition.
http://www.mhsec.com/downloads/KahleWSJarticle.pdf

I was lucky in that I didn't have to live with it too long. Went from diagnosis to surgery in under 2 months, now recovering.

There was a lot of good info in the prior thread now closed, so I'll add a link to it here:
http://www.healingwell.com/community/default.aspx?f=42&m=1906319

LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 6/8/2013 4:33 AM (GMT -6)   
LuciJ said...
Dear Last Banana, I am a new member today and also have the same condtion @ 4.2. I have had mine for 2 years and size has not changed. I can relate to the uncertainty and anxious feelings you are having. I also had them. But after some time and no enlargement I finally have some peace. Also a great thoracic surgeon told me to relax and just live my life. Best advice I received!!!


That's good advice, and that's what I intend to do. I don't want to stop living just to stay alive. For me the hardest part is cutting back on physical activities that have become integral to my life. Things that I took for granted for many years are now off the table.

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/8/2013 11:34 AM (GMT -6)   
The article that I was thinking of was not included with the other articles above, it is here:
http://online.wsj.com/article/SB10001424052970204047504574384973660445730.html
Titled Older, Slower, Wiser, it's specifically about slowing down ... but not stopping!

LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 6/8/2013 8:43 PM (GMT -6)   
AZ Don said...
The article that I was thinking of was not included with the other articles above, it is here:
http://online.wsj.com/article/SB10001424052970204047504574384973660445730.html
Titled Older, Slower, Wiser, it's specifically about slowing down ... but not stopping!


Those are some great articles! Thanks for posting the links.
I was thinking about you the last couple of weeks. I trust that your surgery went well.

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/8/2013 10:33 PM (GMT -6)   
Yes, my surgery went well, thanks. Been home almost 2 weeks now and walking about a mile a day and otherwise taking it easy.

LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 6/9/2013 4:16 AM (GMT -6)   
AZ Don said...
Yes, my surgery went well, thanks. Been home almost 2 weeks now and walking about a mile a day and otherwise taking it easy.


That's great! It still amazes me how quickly our body can recover from the trauma of major surgery! When I was young it seems doctors wouldn't allow a patient to exercise for several weeks after surgery. How soon before you can resume other activities such as driving?

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/9/2013 1:43 PM (GMT -6)   
I can start driving at 3.5 weeks. I'm not real clear on the path from where I am now to where I used to be. For now I am not pushing myself. I am to start cardiac rehab in a few weeks so that should help clarify. I was told that swimming for exercise would have to wait until about 3 months.

Ralele
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 6/11/2013 5:17 PM (GMT -6)   
I'm glad to find this site. I made my way through the first thread and I'll join this new one. I'm a newbie (age64). A chest CT done to check out some lung issues showed a 4.9 Ascending Aortic Aneurysm--out of the blue. The good news...your lungs are fine, the not so good news...you have an AAA.

I am meeting with cardiologist tomorrow to evaluate what further testing, etc and whether to 'watch and wait' or have surgical evaluation. Meanwhile I received the cautions about lifting etc. I don't have high blood pressure but I have had Rheumatoid Arthritis for many years and I have scoliosis. I'm wondering if either has contributed to the condition? My primary doc and the pulmonary doc have been great and the cardiologist is concerned and moving quickly. I feel good about the medical care.

I have read a couple of people talking about restrictions on air travel. I'm supposed to fly cross country to visit daughter and family. What are the air travel concerns?

I think for me the balancing between watching and surgery is going to be impacted by the impact of the RA on healing and infection. I take some pretty powerful immune suppressants to control the RA. Otherwise I'm in pretty good health and average weight. Has anyone had the surgery with an auto immune disease?

Thank you for your sharing. The honesty about the psychological impact of the time bomb feeling and the new restrictions on activity were very helpful to me in coping with this news. Knowing that my reactions (which feel over the top) are in the normal range always helps me to calm down and move on.
Xanax does sound good right now!

Ralele
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 6/11/2013 5:19 PM (GMT -6)   
To AZ Don:
Glad you are doing so well and thanks for the links. Normalization really helps.

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/11/2013 5:54 PM (GMT -6)   
"I have read a couple of people talking about restrictions on air travel. I'm supposed to fly cross country to visit daughter and family. What are the air travel concerns?"

Welcome to the chat. The Cleveland Clinic often suggests that aneurysm patients can fly there for surgery and fly home after. Here is one such comment in one of their webchats:

http://my.clevelandclinic.org/heart/webchat/1145_thoracic-aortic-aneurysm.aspx

JenniferC: Hello. My brother lives in Germany (job related) and is being followed for aortic aneurysm, also bicuspid valve. He had a MRT done this week and his aortic measurement was 5.3 ?? They want to do surgery very, very soon. He is 41 y.o. and is also a smoker. His EKG was not normal. He has noticed more palpitations within the past few months. I am his sister and have been researching where to have the procedure done (aortic resection?). Would he be safe to travel? Would he be able to get an appointment quite soon for evaluation and possibly surgical intervention? Per the research online - your facility seems the place to go for experience and outcome both very, very, very important to me. Thank you for your time! Regards, Jennifer Also, I believe his insurance is Blue Shield Federal Plan - hope you are a participating hospital

Dr__Svensson: At 5.3 cm your brother certainly needs the aorta to be replaced and depending if the bicuspid valve has a leak or narrowing it may require repair or replacement. Based on our experience with over 5,000 patients with bicuspid valves, we quote a 1% risk of death with surgery. We do over 950 thoracic aorta operations a year and dealing with patients with bicuspid valves and ascending aortic aneurysms is one of the more common operations we do.

It should be safe for him to travel as long as he is not having chest pain.

Timo
New Member


Date Joined Jun 2013
Total Posts : 2
   Posted 6/12/2013 1:31 AM (GMT -6)   
Hello all! I am a new member here. I'm glad I found this forum after googling a long time.
I am a 49 year-old male and I have a bicuspid aortic valve that was successfully repaired 4 years ago here in Finland.
A month ago I had my yearly ultrasound check done and the results showed that the valve is working well.
But they also told me that I have an ascending aortic aneurysm. The size is now 45 mm (it was about 40-41 mm during my operation 4 years ago). I will have next ultrasound check next year.
My blood pressure is at good level and I exercise regularly (walking, skiing, cycling, gym).
I was just wondering, if there is a chance that the aneurysm would not enlarge any more. Or should I mentally start preparing myself for an operation to come ...

Post Edited (Timo) : 6/12/2013 2:27:49 AM (GMT-6)


AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/12/2013 10:36 AM (GMT -6)   
I've read that once an aneurysm reaches 47mm that it tends to keep growing. This implies that some smaller aneuryms can remain stable, but the fact that yours has grown at 1mm/yr is not a good sign. That is the average growth rate for aneurysms. By the way, downhill skiing is generally not recommended for those with aneurysm because of the risk of falling and the danger that poses to someone with an anuerysm. Not sure about cross country skiing.

Timo
New Member


Date Joined Jun 2013
Total Posts : 2
   Posted 6/12/2013 1:17 PM (GMT -6)   
Thank you for your reply. Although I'm not a fatalist, I kind of thought the same. :-)
Nevertheless, I'll keep on living a normal life while waiting the result to come.

Lex Luther
New Member


Date Joined Oct 2012
Total Posts : 11
   Posted 6/12/2013 9:13 PM (GMT -6)   
AZ Don - glad your surgery went well. Did you require valve replacement? To the others out there, my cardio grounded me from bicycling when an MRI identified a 4.7 x 4.8 ascending aortic aneurysm with mild AI. My surgeon evaluated me after being grounded for 2 weeks and weight already up 10 pounds, and told me I could continue cycling, just warm up slowly and cool down in the same manner to avoid spike in blood pressure, explaining that the heart rate is less material as compared to sudden changes in blood pressure. I have continued cycling even though I am on Coumadin for afib and it has really helped the anxiety. I am due for my follow up MRI next month, and am really becoming ambivalent as to whether surgery will be recommended or not. I am 61 and do not know if I will be any better after surgery then I am now, being rather symptom free other than some shortness of breath. I know I will really freak out when the time for surgery comes, having seen my sister through it last year. AZ Don, hope you are able to share how your recovery goes. Thoughts have been with you and just discovered a new thread has been opened to learn about your recovery..

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/12/2013 11:13 PM (GMT -6)   
Lex, Although my valve is bicuspid it has been functioning well so I had valve sparing surgery. Except for a bout of afib which sent me back to the hospital for a few hours, my recovery is progressing well. I am getting around well enough and starting cardiac rehab next week. I was told it would be 3 months before I could swim for exercise so it will be awhile before I get to try any serious exercise. There is a thread on my recovery here:
http://www.valvereplacement.org/forums/showthread.php?41644-Good-to-be-back-home

Although it is difficult to go in for serious surgery without symptoms (I had none), you do what you have to do. I don't feel particularly lucky in having had an aortic aneurysm, but I certainly wanted to take advantage of the fact that I was lucky enough to find out about it.

LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 6/13/2013 4:58 AM (GMT -6)   
I understand what you mean AZ Don. It feels like rotten luck to be stuck with an aneurysm, but a stroke of great luck to know it's there. Most people who have this never find out. Sometimes their loved ones find out afterwards, with an autopsy.
The hardest part for me is still the lifestyle changes. I was going to do some work along my driveway the other day and I picked up my pole saw, nope, too heavy. Next I reached for my chain saw, same problem. The next week I went caving with friends and found myself limiting myself to easy climbs and no tight squeezes. For years my job included a very physical aspect that I have had to give up, at least until such time as I can get my aorta repaired.
On the plus side my doctor put me on bp meds. I knew for years, especially the last couple of years that my pressures were creeping up. Within two weeks of the first dose it was dropping. Now, six weeks after starting, it's down to a normal range and I feel better than I have in a long time. The real surprise for me has been that I don't get angry as easily now. I thought my bp was up because I was mad, now I think having high bp made me more inclined toward anger. Or perhaps it's just knowing what I have in my chest that makes the things that use to anger me much less important.

stkitt
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   Posted 6/13/2013 11:16 AM (GMT -6)   
Last Banana,

Thank you so much for starting this thread; awesome info being shared here with each other.

A warm welcome to the new members posting In this forum. I have been away for a few days and trying to catch up.

I am Kitt, the Moderator for this forum. We love new members so pull your chair up and stay awhile.

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"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

Ralele
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 6/14/2013 9:21 AM (GMT -6)   
Last Banana- Thanks for starting up the new thread. I had just discovered the site and now have the resource of the longer older thread as well as the smaller community here. It is 'heartening' (pun intended) to read these informative, thoughtful and practical posts. I just learned about my aneurysm (and how to spell it) 5 days ago and these posts have been invaluable to my peace of mind and also my ability to take in what I am being told.


AZDon-I read your surgery thread in the valve replacement forum and sure appreciate all of the detail you give. I having echo next week which will give greater clarity about aortic valve status and I suspect that will be a major factor in the 'watch and wait' or go now with surgery recommendations and decision. Do you (or anyone else) have recommendations about up to date books on heart valve replacement or heart surgery in general. The one mentioned on your surgery thread isn't in stock right now on Amazon. I did check out the WSJ articles on Aneurysms from 2003 and I am really struck by how much has already changed. An Aortic scan for aneurysm is now covered by Medicare as a preventative exam. Good luck with your continuing recovery.

AZ Don
New Member


Date Joined Apr 2013
Total Posts : 15
   Posted 6/14/2013 9:39 AM (GMT -6)   
Ralele,
Much of the key info (to me at least) about aneurysms from the book is also contained in this article:
http://content.onlinejacc.org/article.aspx?articleid=1140497

There is also a lot of good information on valvereplacement.org and the Cleveland Clinic webchats:
http://my.clevelandclinic.org/heart/webchat/default.aspx
There is a section on Aorta disease and another for valve disease.

nightingale57
Regular Member


Date Joined Jun 2013
Total Posts : 42
   Posted 6/24/2013 12:47 PM (GMT -6)   
LastBanana,
I also thank you for starting this thread. I had an aortic valve replacement 6 years ago. I chose to have a St. Jude's valve so I would never have to go through that kind of trauma again. Just recently found out I have an 4.5 ascending aortic aneurysm. As my aorta was normal sized at the time of my surgery, I am told I most certainly will need surgery. Its very hard to accept, but I know I am lucky they found it. I Have an appt. with a surgeon in 2 days. The hardest part is waiting until they think the time is right to do the surgery. I feel like I am in limbo.

LastBanana
Regular Member


Date Joined May 2013
Total Posts : 36
   Posted 6/24/2013 1:51 PM (GMT -6)   
I understand. At times I feel that way too. I am trying to let it take a back seat though, at least as much as I can. Right now we're on vacation, on the road to the Painted Desert. I've decided I am less likely to die from this now than I was a year ago because I'm informed and I have a plan. I also have decided I cannot stop living just to stay alive. Hang in there. It gets better if you let it.

nightingale57
Regular Member


Date Joined Jun 2013
Total Posts : 42
   Posted 6/24/2013 5:12 PM (GMT -6)   
LastBanana,
Thank you for your kind words. Enjoy your vacation!

Ralele
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 6/25/2013 2:37 PM (GMT -6)   
I am meeting with cardiologist tomorrow, but have heard echo results from my primary doc. I'm confused now and thought some of you with more experience with this situation might provide me with focus for my questions (and a frame for my anxiety). Thanks to the great suggestions by members, I feel like I have a pretty good understanding of the surgery and the issues of measurement and comparisions of risk of rupture to the surgery, including an appreciation that it is hard to get a clear measurement.
I have no symptoms, I am female, normal weight, have Rheumatoid Arthritis and I am 64 years old. The Chest CT which originally showed the Ascending AA measured it at 4.8x4.9. I was referred to a cardiologist. He immediately put me on lisinopril to lower blood pressure to a 100-110 range. He indicated he would also want work to drop my LDLs to below 70. He ordered an echo to check out the valves and the echo measured the aneurysm at 4.6 and indicated that the Aortic Valve is normal and in good shape. When I last saw him, he said he would want me to see the surgeon, even if surgery wasn't immediately warranted, to get his evaluation.
I have read that the CT measurement (if made correctly) is a better measurement than the echo, but I don't know exactly what to ask. I certainly would like to safely postpone the surgery, I guess one question is does delay put my aortic valve or heart function in jeopardy? When I try to think it through I get really anxious!

Nightinggale57: Good luck with your surgical consult. It must be very hard to rev up to go through it again. I'm sitting here anxious about 'not knowing how to evaluate' and I can see that 'knowing' doesn't necessarily help at all!

Last Banana: I just reread your first post and I feel like I could have written it---even to the part about lung problems during the last year from a rash of colds turing into bronchitis, sinusitis and pneumonia. I admire your attitude and spirit. Hang in there.

AZ Don: Great references, thanks. I hope you are doing well and feeling better and better.
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