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New -- with 4.8 cm. aortic aneurysm

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Posted 1/14/2015 2:27 AM (GMT 0)
I joined healingwell.com four years ago...but haven't visited in quite some time. My cardiologist is particularly concerned with my 4.8 cm. aortic aneurysm since in the last year it "grew" by .5 cm. My aortic regurgitation went from 2+ to 3+ (but I don't know what that means -- I have an appointment in a few weeks and will learn more). I'm really just introducing myself because I'm scared...not so much about surgery but regarding the possibility of complications. It has also been suggested by my internist that I not have my surgery here in Albany, NY, but at a major heart hospital (Cleveland Clinic, NY, or Boston, he mentioned). I hate to lose the support of family and friends locally but certainly want to feel that I'm not short-changing myself!

If my valve needs replacing, I would prefer a tissue valve (unless there's some reason why I shouldn't opt for that) so that I don't have to take blood thinners. I'm 71 and would like to think I will outlive a tissue valve, so I'll be interested in learning more about the possibility of a second replacement if that's necessary "someday."

Anyhow...I'm looking forward to hearing the experiences of others. Thanks for being here.

Judy
Albany, NY
Posted 1/29/2015 4:57 PM (GMT 0)
Hi Judy,

I'm new here, diagnosed 2 years ago with AAA of 4.24 which was last measured 6 months ago at 4.37. So far my cardio says I'm not having regurgitation but my recent shortness of breath leads me to believe that might have changed. I see my regular cardio doc Feb 20 and have a second opinion from a cardio/thoracic surgeon Feb 28 so I'll soon know more.

Best of luck to you finding the appropriate surgeon and facility. I understand your dilemma, hard choice to make. I'm fortunate in that there is a top quality cardio center here in Tampa.

Keep in touch and I look forward to sharing some of our experiences as we move forward.
Posted 1/29/2015 9:05 PM (GMT 0)
Hello,

I am also new here. Was diagnosed in Nov of 2013 Was changing our 2 week old baby when chest pain hit. Went to the ER and they found the BAV with ascending aortic aneurysm measuring 4.7. The surgeon said it was no big deal for a man my size get some exercise but keep your heart rate to 120bpm (hard to do) And follow up in a year with a Cat scan. And make an appt with cardiologist. Any Fast forward, had the new CT and a new surgeon (the others partner) said his measurements show me at 5cm and coupled with chest pain and dizziness he is suggesting i have surgery Sooner rather than later and not wait another year. So I will meet with my cardiologist on Feb 4th and will see what he thinks. I honestly thought i had years before I would have to face surgery. (I am 41)

I wish you both the best of luck and will keep you in prayers.
Posted 1/29/2015 10:06 PM (GMT 0)
Hi Dwayne,

Thanks form the kind words and prayers, same back to you. Sounds like your getting very close to the surgical stage. What part of the country are you in?

Frank
Posted 1/30/2015 2:22 PM (GMT 0)
Hi Judy and all. I received my tissue valve almost 3 years ago. I'm currently 39 (female). I'm very active, traveling, hiking, exercising and just couldn't see how blood thinners would fit into my lifestyle.

I have BAV disease w/ AA but was unable to have my aneurysm repaired with valve replacement as I had endocarditis at the time. That wasn't fun.

I will say, open heart surgery was a lot "easier" than I had anticipated. Now it wasn't easy, it was hard work to recover, but "easier" that I had thought it was going to be. I am young and otherwise healthy, and had a great deal of support.... but it really wasn't so bad. And I've had a lot of other types of surgeries to compare to as I also have Crohn's disease. I ran/walked a mile 7 weeks post-op, and I couldn't have run prior to surgery.

I didn't really know I felt so bad, until the valve was replaced and all of a sudden I felt so great. it was life changing. I'm hoping for another 5 years on this valve before I get another and repair the AA. I'm not looking forward to it, but after experiencing it once, I know we can all do it and be better for it.

Good luck to all of you!
Posted 1/30/2015 5:03 PM (GMT 0)

Frankdp said...
Hi Dwayne,

Thanks form the kind words and prayers, same back to you. Sounds like your getting very close to the surgical stage. What part of the country are you in?

Frank

Frank,

I am in northern VA.
Posted 2/5/2015 5:11 PM (GMT 0)
Well I met with my cardiologist and he concurs with the surgeon that it is time to have the surgery. UGH So next step i get to have a cardiac cath and then will schedule the surgery. I am now starting to get a little freaked out as it is becoming more real. The doc says he can repair the Valve and replace the AAA with a graph. Whats scaring me most is the separating of the chest/breast bone. Can anyone say how they dealt with the recovery of that aspect of the surgery. The Surgery will be done at INOVA fairfax in Fairfax Va
Posted 2/6/2015 2:55 AM (GMT 0)
Thanks for all your comments! I have an appointment tomorrow with my cardiologist. On top of everything else, my blood pressure rose significantly during two weeks in Florida (I think that the "stress" of traveling, even for a vacation, affected me) and I'm now on a beta blocker.

I wish all I had was aortic regurgitation. It's the aneurysm that's particularly concerning me. And although there are good hospitals in the Albany area and certainly within three hours, I want to believe that I'm going to the very best hospital for the procedures I will be needing even if it means traveling a great distance.

More after my appointment tomorrow....

Judy
Posted 2/6/2015 4:50 AM (GMT 0)
Hello everyone. I was diagnosed in June of '05 at Mayo Clinic in Jacksonville, FL with an AAA..At the time, it was measured at 4.1 or so....I am now at 4.3 or 4.4 via an echo which can vary depending on where the tech took the measurement. Only those that live with these time bombs can understand what we go through. I am checked every 6 months via an echo. What I have learned over the years for those of you facing surgery real soon is to have a surgeon who has done these surgeries MANY MANY TIMES.....Preferably, in my mind, a surgeon who is Cleveland Clinic trained. But, I also have learned that there are great surgeons out there who were not Cleveland C. trained. BUT, please have one that is VERY VERY experienced. I now live in a small town in S. Central Oregon and the closest place for me to go would be to Portland, OR which is about 6 hours away. I hate that...but that is the way it is. Did at one time live South of Cleveland.....darn it. I would have the Cleve. Clinic at my disposal. Dr. Svensson (sp) is the top notch in Aneurysms there. I am frightened to death of the surgery.....frightened to death that this monster will burst before I have a chance to get anywhere. Or, if I make it to the surgery, complications worry me as well. Guess you could say I am a nervous Nelly. Have no history of this in my family...atleast that I am aware of. Still wonder how in the heck I got this. Will never know. Always took care of myself and was fit as a runner and cyclist....for years. I hate to ask people for help lifting heavy items...I have heard many different versions of what docs say are limitations. Even reading some on here. I finally ran into someone with my same diagnosis in this small town I live in. Imagine that. He is one of my VETS. His AAA is a bit larger than mine. I just found it ironic that I ran into him. We chat at times about our bombs....Go to the same Cardio doc as well. WELL, I hope each and everyone of you are doing fine at this point. Please keep us posted...those that have your appt. real soon......I am truly sorry that each and everyone of us have to go through this....Please stay safe.....Christine in Oregon......
Posted 2/6/2015 1:29 PM (GMT 0)
Christine,

Although I had been diagnosed earlier, (coincidentally) we lived in Jacksonville for six years, having returned to Albany, NY, in July 2013.

My mother had aortic regurgitation, but we were never told that she had an aneurysm, so I don't know where mine came from. My father had cerebral hemorrhages but not from aneurysms but "abnormal blood vessels" that caused slow bleeds.

I totally agree with your "frightened to death of the surgery.....frightened to death that this monster will burst before I have a chance to get anywhere. Or, if I make it to the surgery, complications worry me as well. Guess you could say I am a nervous Nelly." I'm older than you are, but I'm not ready to die.

Have you found a listing of doctors who are "great surgeons" in this field? I really hate to have to travel 7 1/2 hours for surgery! And I agree that there must be surgeons other than those at Cleveland Clinic who have successfully performed this surgery many, many times!

Thanks so much for your input. And good luck to you!!

Judy Madnick
Albany, NY
Posted 2/19/2015 5:23 PM (GMT 0)
Had my cardiac cath last Thursday. Said my arteries were clear but twisted and out of place, and that the valve was reclassified as sever regurgitation from mild to moderate (probably explains the dizziness). So now I am scheduled for the valve repair along with the repair of the aneurysm on March 10th. Fun Fun. The Cath wasn't to bad but it took them 3 times and a double dose of sedative (still a little pain)

How is everyone else doing?
Posted 2/19/2015 7:19 PM (GMT 0)
Where are you having your surgery?

Judy
Posted 2/19/2015 9:48 PM (GMT 0)
Its going to be at inova fairfax heart and vascular institute (Inova fairfax hospital) in Fairfax Virginia
Posted 2/19/2015 9:59 PM (GMT 0)
Best of luck to you!! I'm looking forward to reading a full report of your successful surgery and recovery!

I have an appointment next Thursday with a local cardiovascular surgeon. I don't know whether I will have my eventual surgery here in Albany or elsewhere, but my first step will be to hear what this surgeon (head of the cardiovascular department at St. Peter's Hospital) has to say.

Judy
Posted 2/25/2015 5:32 PM (GMT 0)
Hello everyone I'm new here and have been reading your post, I just found out 1 year ago that I have AAA of 4.5cm I also have Aortic valve stenosis which Drs are saying looks ok for now but are saying for my height and body frame that I should think about getting the AAA fixed now! Has anyone had this surgery done yet? And how did it go?
Posted 2/25/2015 8:19 PM (GMT 0)
Hey Tjennings

My situation is a bit different as I have regurgitation (the opposite of your valve) ie my valve is leaking back into my heart. My surgery is scheduled for March 10th to have the valve repaired and ascending aorta aneurysm will be replaced with a graft. I will let you know how it goes. My friend collapsed about 2 years ago from It turned out he had a bicuspid aortic valve as well but he an aortic dissection lucky he was close to a good hospital with a surgeon that could do the surgery But he said it was a 2 months before he started to feel normal enough to go back to work and have some energy to get through the day, but he said the first 2 weeks he just slept alot.

Don
Posted 2/25/2015 10:10 PM (GMT 0)
Sorry to hear that! Best of luck to you Don , I will pray for you to do well and recover quickly ! I also have a bicuspid ! Scary stuff! Please let me know how you do! I will be making a decision soon on my surgery, mine may be in April. Thank you for responding! It seems like a nightmare living with this and I don't know anyone else with this problem that's why I found this chat room to talk to someone who can relate.
Posted 2/26/2015 3:59 PM (GMT 0)
Hey Tjennings, if you read closer to the top, I shared my surgery experience. I also have bicuspid aortic valve disease, and at the time of surgery had a 3.9 AAA with severe stenosis of the valve and regurgitation. I had my valve replaced, but was unable to repair the aneurysm because or other complications (endocarditis).

I can try and answer any particular questions about the surgery and recovery, based on my experience.

My open heart surgery was almost 3 years ago and I was 37 (am female). I live a completely normal life, some might not agree as I am extremely active. I was able to climb/hike to close to 16,000 feet a year after surgery.... I ran a mile 7 weeks post-op. Both of which I couldn't do prior to surgery.

I have a bioprosthetic valve (cow) and had to go with a smaller valve than we wanted because of the infection I had. I'm hoping to get another 5 years out of this valve, before we go back in and repair the AA and replace the valve again with the right size.
Posted 2/27/2015 1:45 AM (GMT 0)
Wow that's amazing how well you are doing jdiane! Good to hear!
So far I have mild stenosis so we are on the fence about just having the AA fixed and waiting on the valve! How long did the surgery take? (Hours) and I was actually wondering how successful AA surgery is because I don't know of anyone that has had it before!
My Dad had stenosis also and received the Pigs valve. Are you on blood thinners?
Posted 2/27/2015 1:46 PM (GMT 0)
So, I think the surgery lasted 4-6 hours. I obviously don't remember, and my husband is not fond of me asking about that day :) My AA hasn't grown much over the years, which is fantastic. We were waiting for the AA to get large enough before replacing the valve, 4,5 was the number we were waiting for to go with surgery. I'm still at 3.9 (as of last June). Then when I got endocarditis and we had no choice after I failed treatment, it blew that idea.

I've always heard the repairs go really well. I do know a couple people that have had it done and it was successful. I'm seen an an Adult Congenital Heart Disease Clinic in Atlanta, which is a partnership with our pediatric hospitals, Children's Healthcare of Atlanta. That is my best advice, see someone that specializes in congenital disease. I have a pediatric surgeon.

I do not take blood thinners, just baby aspirin. That was why I chose bioprosthetic and not mechanical. I didn't feel that blood thinners would fit well in my lifestyle. I also have Crohn's disease.

Post Edited (jdiane) : 2/27/2015 6:52:28 AM (GMT-7)

Posted 3/10/2015 2:45 AM (GMT 0)
Well wish me luck all my surgery is tomorrow morning have to be there at 5AM
Posted 3/10/2015 3:01 PM (GMT 0)
Good luck, duanef1!!!!!!!!!!! I'll be looking forward to hearing from you after you're feeling well enough to get back to the forum. :)
Posted 3/10/2015 5:04 PM (GMT 0)
Praying for you duanef1!! Hope to hear from you soon!
Posted 3/11/2015 4:28 AM (GMT 0)
Hope to find someone who is taking "somthing" that is slowing down or stopping the increase in size of an aortic aneurysm...
Posted 3/11/2015 1:14 PM (GMT 0)
I take nadolol in hopes it will slow down or stop the growth. we don't know if it really works though. I haven't had any growth in the 3 years I've been taking it. I also received a new aortic valve which could also be the reason.....
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