Ascending Aortic Aneurysm

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cKAYS
New Member


Date Joined Jul 2015
Total Posts : 3
   Posted 7/16/2015 3:46 PM (GMT -6)   
My fiancé discovered he had a ascending aortic aneurysm in May of this year. At first they had him in the 'Watching and Waiting' period since they thought it was only 4.5cm. A CAT scan a month later revealed it to be 5.1cm in the arch of the valve. Much much larger than they thought.

Needless to say, we were pretty scared. We're both under 40 and neither of us ever thought we'd have to deal with heart related problems this early in the game! He's fit and takes care of himself, but had issue with high blood pressure. We were all set to go on a scuba diving vacation on a liveaboard when his GP found a heart murmur, which led to the discovery of the aneurysm. So yeah, no diving for him until he gets that sucker fixed. At least they caught it before we were out of the country, scuba diving 4 times a day for a week, on a boat in the middle of the ocean. Who knows what kind of damage that could have done. His GP could have very well saved his life since he barely goes to the doctor at all.

His cardiologist sent him to see a surgeon 2 1/2 hours away. We have a very good Sacred Heart hospital here, so we were really confused why he sent to a different hospital so far away. The surgeon there suggested that he would need surgery in a few months. Due to the size and location on the valve he'll have to have a graft or an option of a mechanical valve. He didn't really like the guy and surgeron seemed rather 'Eh' about the whole thing. They only talked for 15 minutes before he sent him on his way. He's currently waiting 3 weeks to see a local surgeon at the Sacred Heart, since he's on vacation, which is driving him nuts. Hopefully they'll do another scan of his arteries when he does finally see him. At 5.1 he feels like a ticking time bomb and the thought of having a huge scar down his chest gives him the chills. He's glad once he finally has the surgery, he'll be fixed for good and go back to diving again. He was currently enrolled in college, so he'll have to take the fall semester off and perhaps even the spring if has too, which really bummed him out.

Luckily everyone is sending him lots of positivity and good thoughts. His poor mother is nervous wreck and very gloom and doom, telling him how aneurysms can burst at any time. (Jeez, thanks mom)

Right now we're researching what his recovery will be like. I know it won't be easy, but any suggestions on what I can do to make him comfortable at home, I'm all ears! I hate not being to do anything for him at this point.

Tjennings
New Member


Date Joined Feb 2015
Total Posts : 13
   Posted 8/2/2015 7:17 PM (GMT -6)   
Hello cKAYS. I have a 4.6cm aneurysm and we are just watching it right now! Not sure about after surgery care but from what I've heard the recovery seems to not be so bad! But it is scary having this bomb inside you! Good luck to him and please let me know back about how the surgery goes! Prayers to you both.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1148
   Posted 8/4/2015 9:26 AM (GMT -6)   
I haven't had my AA repaired yet, but I had open heart surgery to replace my aortic valve replaced 3 years ago at 36. I had endocarditis at the time, so we couldn't repair the AA. I went with a tissue valve.

Recovery wasn't to bad. I went home 4 days post-op. My hugest suggestion is to stay on a pain management schedule. even if you think you don't need it. And even set alarms at night so you can stay on schedule. This allows you to be up and around. The more you move around, the faster you heal.

I climbed steps at 2-3 weeks unassisted, went back to work at 5 weeks, ran a mile at 7 weeks. Was back on a bicycle at 4 months (have to wait for the sternum to completely heal).

My scar isn't super noticeable 3 years later. You get so use to it. No one has noticed and asked me about it since that first year when it was red and fresh.

I'm super active and sometimes at the gym I'm proud of my scar sticking out. I'm like yeah, I just freaking did that AND I have a prosthetic valve, what's your excuse.... :)

Post Edited (jdiane) : 8/4/2015 9:32:01 AM (GMT-6)


cKAYS
New Member


Date Joined Jul 2015
Total Posts : 3
   Posted 8/18/2015 2:56 PM (GMT -6)   
jdiane - That's awesome! Congrats for you! Pain wise, I've heard a different things. Some say they expected more pain after the surgery. I imagine you need to be careful to not use your arms a lot when getting in and out bed since that puts a lot of pressure on your sternum. Did you get a mechanical valve? He's opting for an artificial one.

He's getting geared up for the surgery sometime in early September. His cath lab results looked great and they wanted to schedule the surgery 10 days afterwards. It felt a little too soon for him, so he declined and he's now awaiting a different date. Just getting an IV sends his nerves through the roof. He's been getting a lot of lectures from friends and family that he'll never be ready and he just needs to do it.

cKAYS
New Member


Date Joined Jul 2015
Total Posts : 3
   Posted 8/19/2015 9:23 AM (GMT -6)   
He decided to go for it and do next week on the 26th.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1148
   Posted 8/26/2015 9:04 AM (GMT -6)   
Best of luck today!!!!!!!!!!

I went artificial as well, bovine.

mikec1952
New Member


Date Joined Sep 2015
Total Posts : 1
   Posted 9/8/2015 9:51 AM (GMT -6)   
Last month I was diagnosed with a 4.2cm ascending thoracic ectasia, and significant heart disease with extended sections of 60% blockage. I also have had episodes of AFIB, recurring deep vein thrombosis (DVT) and TIA's. Nuclear stress test shows exercise induced hypertension, systolic of 228. I take xarelto for the AFIB. I'm an active biker, resting heart rate of 39 and blood pressure of 110/85. My cardiologist has me taking imdur for the blockage, since the nuclear test showed insufficient blood flow to some parts of the heart, and no other action other than to wait for a future follow up to see the rate of change of the ectasia. I have read that imdur should not be taken when extasia or aneurysm are present. Has anyone heard similar?

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19769
   Posted 9/8/2015 7:21 PM (GMT -6)   
I haven't. keep strong. to those having surgery, all the best with your recovery.
THE HAPPY TURTLE.

A QUOTE FROM THE HAPPY TURTLE THAT REFLECTS ME.

"COMPLEXITY IS MY WAY OF EXPRESSING MY NEEDS IN A MANNER THAT IS NEITHER DESTRUCTIVE, NOR NEGATIVE"
'

yiamon
New Member


Date Joined Oct 2015
Total Posts : 2
   Posted 10/28/2015 2:54 PM (GMT -6)   
Hello I am new to forum. Two years ago at age 63 I was having some frequent PVCs (which have subsequently resolved) and went to see a cardiologist. On the echo. he found a 4.2 cm 'aortic dilatation' at the base of the aortic - a ascending thoracic aneurysm which has subsequently been confirmed by MRA. I was told to avoid strenuous exercise and little else that I can remember. I was told that we would evaluate situation retrospectively. which meant wait. they wanted me to wait a year for another echo. At about 6 months I freaked out enough to get another one. For the last two years the dilatation has been stable thank G-d. I was also put on metoprolol to avoid the 'shearing effect' and another doc suggested baby aspirin as an anti-inflammatory- since aneurysm formation is a type of inflammation. I would like to share advise with others in this boat. It is a little scary and there seems to be a lack of hard core good advice. Also I would love to hear from anyone that had the surgery and see how they did!!

gcw
New Member


Date Joined Dec 2015
Total Posts : 18
   Posted 12/22/2015 4:39 AM (GMT -6)   
Yiamom: I read your story, I am 63 and been told same thing, AAA. I am still looking for feed back from pre/post on this surgery, looking for information before surgery, and after surgery recovery, also. Thank you for your insight. I just joined today, Dec/22/15 at 5 am, going through the internet and seeking forums and chat rooms to widen my vision on this operation. Again thank you Geoffrey Watson

joe f
New Member


Date Joined Jan 2016
Total Posts : 5
   Posted 1/6/2016 8:56 AM (GMT -6)   
hi everyone -
I've just signed up here - 59 years old and found out just before Christmas I have an ascending aortic aneurysm - measuring 4.4cm. I had a routine annual physical before Thanksgiving, which luckily included a chest x-ray, the results of which revealed an enlarged aorta - which then brought a referral to a cardiologist. He ordered both an ultrasound and a CT scan - which showed the 4.4 cm AAA. I'm currently on a "wait and watch" period until the end of April/early May - which at that time I should be getting another CT scan. Should I ask for an MRI and see my insurance will cover it? These past 2 weeks have been a bit tough - I'm 6'3" tall, and about 238# - relatively good shape and moderately active - mostly walking and yard work. I was a casual smoker - about a carton/month, but quit as soon as I found out. I'm looking for advice as to how to keep myself from stressing out - my blood pressure and cholesterol are ok, no real symptoms other than when I feel a weird little something, and then mind starts to freak out a bit.
Any suggestions on how to cope these next 4 months as I wait for the next test? I have a couple vacations planned in Feb + May where I'm planning on hiking a bit - in elevations from 4000' in Feb to 9000' in May - should I be worried? My cardiologist says not to worry - but from what I have read in 2 weeks - I see I'm not alone with my concerns. Thanks for reading this far - and for any suggestions - especially for Cardio surgeons in the Phoenix area.

Post Edited (joe f) : 1/6/2016 11:28:28 AM (GMT-7)


stevellen
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 1/7/2016 8:40 AM (GMT -6)   
My husband is going thru the same thing, We went for Mri in June and then again in December. His aorta measure 4.5 both times. We are seeing a Dr in New York City that is where we are from. Our dr doesn't specify in aorta. We are Stressing also. He is 54, he sometimes is out Of breath when he is speaking,he been coughing. I read that you shouldn't be jogging,lifting anything heavy no shoveling snow. Well keep us posted. God bless! They tell you not to STRESS finding it very hard.

joe f
New Member


Date Joined Jan 2016
Total Posts : 5
   Posted 1/28/2016 4:15 PM (GMT -6)   
I wanted to post an update - after about 4 weeks of a lot of wondering about myself and my 4.4cm AAA - I decided to do more research on line finding what I could. Nothing new really, but I have decided to not just wait until April/May for another CT scan - and I have an appointment with a different cardiologist at Mayo Clinic here in Phoenix. I'm looking forward to meeting with him, and bringing my ultrasound images as well as the CT scan from the end of December. The doctor has residence experience at Stanford and John Hopkins - so I feel good about his credentials. I'll post back after my app't in 2 weeks.
We all need to relax is what I keep hearing :-)
thanks for listening.

stevellen
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 1/29/2016 3:28 PM (GMT -6)   
Hi joe f we went to a cardio thoracic surgeon in NY Presbyterian hospital last week. He told us that they don't do surgery in till it the size reaches 5.5. My husband is 4.5 we went for Mri in June and then in December. He told us we can go for another mri in a year. I told him I feel better if we can do it in 6 months . He said okay. He also told my husband exercise (not crazy) eat right . And if we go for another opinion and if they want to do surgery that is malpractices. Good luck to you!
.

joe f
New Member


Date Joined Jan 2016
Total Posts : 5
   Posted 2/1/2016 1:53 PM (GMT -6)   
stevellen -
thanks for the post/reply. The more I read about this AAA - the more I think it may have come from a bad car accident I was in back in 1973 when I was 17. I had multiple fractured bones and lots of other injuries - it's possible that an injury to my chest was missed at that time I think. I'm looking forward to seeing what this second cardiologist says - and if all goes as I hope - I think I may want to make this new Doc my primary cardiologist. As to size of 5.5cm - that what what I was told also - or an increase in size of 0.5cm in 12 months. I'm feeling better knowing I have a second opinion coming next week.

joe f
New Member


Date Joined Jan 2016
Total Posts : 5
   Posted 2/16/2016 8:34 AM (GMT -6)   
went to Mayo Clinic here in Phoenix yesterday - saw a great surgeon who reviewed my CT scan and assured me I have little to worry about. He suggested an echo-cardiogram in a few months, and to continue with my CT scan follow-up at 6 months. My aneurysm has no bulges, and with my body size of 6'3", 240#, he said my aorta normal size is more like 3.8cm, not 3.0 to 3.2 as an average person may have. He measured my aorta at 4.3cm, and he showed me where a 4.4 cm diameter would be reaching into the arch - and that's not an accurate place to measure. the 3D modeling of my aorta shows a slight widening of the ascending portion of the aorta, but no bulges or dissections. All in all, surgeon said that he sees these everyday, and I'm in no danger, and for me to relax. Keep an eye on my blood pressure (it's ok now), and normal activity for everything I should be fine. He'll review my future echo-cardiogram and CT scan also - which I feel very food about. People at Mayo clinic VERY professional and I feel much better as a result of this second opinion - first Doctor did not show me CT results/pictures on computer, or explain in such detail my condition. I strongly recommend second opinions for anyone with an AAA.

stevellen
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 2/16/2016 7:48 PM (GMT -6)   
That is wonderful news! I bet you feel so much better!

Shasari
New Member


Date Joined Oct 2014
Total Posts : 8
   Posted 3/10/2016 5:07 PM (GMT -6)   
The stories here sound so familiar to me.

I have two aneurysms, one of 4.7cm on the ascending aorta, with root dilation, and one of 4.4cm (interpreted by Stanford as moderate to severe) on my pulmonary artery which is the rarer of the two.

I've been down the whole gambit between panic, anger, denial worry and so forth.

Best thing to do is find a doctor/surgeon you feel you can trust; do your own homework on reputable sites like Mayo Clinic, Cleveland Clinic, Stanford, UC Davis, UCSF, Cedars Sinai to name a few, and inform/educate yourself as much as you can about your condition.

I am in the watchful waiting stage, and even though I've known about this for about 4/5 years now, and there's been slow advancement of the aneurysms, I am still in a waiting phase. However it seems now the approach is becoming more of a "if it's progressing, perform the surgery without waiting for the 'magic' number of 5.0/5.5 or above).

I still have my moments of depression, anxiety, not so much panic anymore, and that's OK. My advice to you is allow yourself to go through what anyone with a serious illness goes through, and don't turn away from your friends or spouse who will always be there by your side to see you through.

~Dave

AZ Terry
New Member


Date Joined May 2016
Total Posts : 1
   Posted 5/12/2016 3:26 PM (GMT -6)   
joe f - thank you for all your info. Can you give me the name of the surgeon you saw at Mayo. I too live in the Phoenix area - and have just been diagnosed with a 4.6x4.9 AAA. Has me very worried/anxious about the wait and watch process. I was also told 5.5 is the magic surgery number.

Any words of encouragement to ease my mind would be welcome. Haven't even told my kids yet, spouse doesn't seem concerned. Trying not to be too down about it!! Thanks so much

stevellen
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 5/18/2016 9:43 AM (GMT -6)   
Az terry sorry to hear about your aaa. My husband also has aaa his is 4.5. We live in New York we went to top surgeon, he said they don't touch it until 5.0. He said go on with your life. Easy said then done. We didn't tell our children either. My husband went for Mri in June and in dec. it stayed the same size. We are going back in June to see what going on. If it the same size we go once a year..don't lift anything heavy. No lifting weights. I tell my husband we have to try to put it behind us. Live our lives because no one ever knows. God bless

drop shot
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/6/2016 1:59 PM (GMT -6)   
Hi all. Just signed up. I am 83 and just found out in Dec. that I have an ascending aortic aneurysm 4.5. I just had another ct scan 6 months later and good news, no change. My Dr. said I would not need another for a year. I asked him what I could do as far as activity and he said what do you want to do. I said I want to have sex, play tennis, and go dancing. He said have at it. I did not ask him about weight. I do like to lift some weights so I will ask him about that. Some one asked if person's size had anything to do with size of aneurysm as far as surgery goes. The answer is no. 4.5 is 4.5 regardless of one's body size. My Dr. told me that he does surgery when it gets to 5.5. Thanks for listening

KevinW
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/28/2016 12:18 PM (GMT -6)   
I am 52 and have been diagnosed with a 4.3cm TAA. I also have high blood pressure, now on meds, and a family history (dad died at 56 with this). I find out "accidently" while having a calcium score test done on CT. I talked with nurse at Cleveland Clinic who said with my history, no lifting over 10# and no golf. I am a runner and they told me no more marathons, but that half marathons were OK. I am scheduled to have another CT in December. Today, I met and talked to a man who had a 5.0 cm TAA and had surgery to fix it. He is 74 and had the surgery at 71. He is doing great and is glad he had it fixed. He lives in Dallas, Tx and had it at Baylor Plano Heart Hospital. This whole thing can be consuming mainly because it's pretty serious stuff and there's not a lot of good consistent information. It seems even the medical community has differing opinions about when to have surgery, what precautions to take, how often to have follow up scans done. Whew.... thoughts??

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14966
   Posted 10/29/2016 10:08 AM (GMT -6)   
Hi KevinW & welcome to Healing Well. Sorry to read what you are dealing with. The good news is your problem was caught before something bad could have happened. When you say you have high BP was this a recent diagnosis too? Very important to keep the BP under control, high BP can take toll on the heart valves over time.

Yes, you are right about the drs all having various opinions about when to do surgery. You can get a 2nd opinion to see what another dr thinks of the situation. When looking for medical info on the net I stay with reputable places like the Mayo Clinic as an example. At least I know the info is reliable because there is so much garbage out there. about all it will do is scare a person to death. Dr. Google is never right, lol.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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