Ascending Thoracic Aorta Aneurysm , Part 2 of 2

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stkitt
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   Posted Yesterday 7:43 AM (GMT -6)   
This is Part 2 of 2 on the topic of Ascending Thoracic Aorta Aneurysm.

Link to Part 1:

http://www.healingwell.com/community/default.aspx?f=42&p=1&m=1025346

Please continue posting in this thread. Part 1 has been locked.

Kitt

stkitt
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   Posted Yesterday 7:50 AM (GMT -6)   
Posted on 6/7/2010 by Trackermom
 
margiemm said...
I was diagnosed Dec. 09, with a 4.5 cm ascending aortic aneurysm. It was definitely the shock of my life. I do havd SVT and Afib, and have had ablation therapy for the SVT. I just cant imagine that someone didnt see the aneurysm on the many tests that I had in the past. I am now with a new specialist , so I hope that things go better now.


Shock, tell me about. the admitted me through the ER because of my prior cardiac history (peripartum cardiomyopathy and SVT) I had an ablation and the heart returned to normal, but since I was having chest pain they kept me.

Anyhow, next day up on the floor the regular doctor who was covering for my GP, said it so causally then said you can get changed we are going to send you home. nono Oh no you're not! Then the cardio came in and he explained it to me and that in a few months I'll get a follow up test, I said you can't send me home I'll go crazy can't you do another test to confirm. Okay so I get an echocardiogram and that comes back 3.8 and everything else is good.

I can't believe how unaffected they seemed when they told me. That is why that Monday I went to my GP and got Xanax.

stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted Yesterday 7:51 AM (GMT -6)   
Post on 6/7/2010 by margiemm:
 

I sometimes think that I should be on meds, of just start drinking! I dont do either, but I do drink coffee, and I know that will probably have to go. It never bothered me before( the caffeine), but the last few days, I have noticed a difference, so I am happy that I like green tea.

The reason that I have a new specialist is that when I finally got to see the cardio that did my ablation, he basically brushed it off, and then he started talking to me about dying, yes dying!  Can you believe it? I cant believe I let that man do a ablation on me. I wish someone was in the room when he started on that topic, but he probably wouldnt have said anything . I really could have taken something or drank after that visit.

Back to

stkitt
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   Posted Yesterday 7:53 AM (GMT -6)   
Posted on 6/15/2010 by margiemm:
 
I got my report from the radiologist that read the first ct scan. The aneurysm measures the same size as the first reading. Time to relax now!!!!  There is pericardial fluid though, and I am not sure if that is something to be concerned about or not. Any ideas?  

Trackermom
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Date Joined May 2010
Total Posts : 19
   Posted Yesterday 8:32 AM (GMT -6)   
Hello Margie~
That is good news. There is supposed to be some fluid in the pericardial cavity. Does it say there is a lot or is there any other description about the fluid?

Tracker

margiemm
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Date Joined May 2010
Total Posts : 33
   Posted Yesterday 4:04 PM (GMT -6)   
 
          It did say minimal, but the surgeons office wants me to have a echocardiogram to check on how well the heart is functioning. I need to schedule that tomorrow. Maybe I can take a diuretic and that will take care of it! 
 
 

MJW
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Date Joined Aug 2010
Total Posts : 1
   Posted 8/22/2010 2:18 PM (GMT -6)   
In Dec. '08 i was hospitalized with a viral infection and fortunately because of a very bright and alert x-ray technician an aortic aneurysm was discovered.
I went to the U of M cardiology center and it was decided surgery was my best option.
I had surgery for an ascending TAA in March of 2009. The first surgery lasted 10 hours, it was done on a Monday. Wednesday morning they were bringing me out of the induced sleep when I got 2 blood clots and the graft ruptured, I expired. I was resuscitated (within 8 seconds of being called brain dead). I immediately was rushed into another 6 hour surgery to replace the graft. I was then kept sedated until Saturday. My surgeon said that I have very weak connective tissue, possible Giant Cell Aortitis and my aorta was very inflamed from a viral infection when he did the surgery.
It's almost a year and a half and I am still having Afib on and off but I also have memory problems as a result of the two surgeries and having expired.
Sometimes I get dizzy and when I lay down it feels like my brain is jiggling like a bowl of Jello.
1 year later, to the month, I had kidney failure and was hospitalized for a week. My cardiologist was concerned because the afib (heart rate 140) occurred with very little exertion and I also have sleep apnea. A study is being done at U of M in relationship to the sleep apnea and open heart surgery. I am participating in the study. I want to exercise more but don't know what type of exercise, other than walking, to do. All in all I'm feeling good, but still don't have the amount of energy I used to have. Please advise of a good exercise program if you know of one. I will advise at a later date how the sleep apnea study is going.

margiemm
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Date Joined May 2010
Total Posts : 33
   Posted 8/22/2010 4:37 PM (GMT -6)   
Hi, MJW, Sorry to hear of the problems with the surgery. Do you mind stating your age? I also have the ascending thoracic aneurysm, but no surgery for now, and I have already decided that I would think long and hard before agreeing to it. That may sound crazy, but that is just me. 

stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 8/22/2010 5:04 PM (GMT -6)   
MJW, 

I suspect you were in cardiac arrest and not brain dead or you would not be talking with us today.  When someone is brain dead, it means there is no blood flow or oxygen to their brain and that their brain has ceased functioning in any capacity. It does not mean that other organs, such as the heart, kidneys, or liver are dead, although they may function for only a few days. Unless damaged by injury or disease, these organs may be donated to another individual for an organ transplant.  When you hear about patients who were brain dead and recovered, they were not actually brain dead. They were in a deep coma or vegetative state with slight brain activity.  The terms can be very confusing.
 
I am so sorry to hear you had such a rough time with your surgery and the complications during your recovery.
 
As far as exercise it may be best for you to discuss what would be OK for you with your Doctor considering your complicated history.   I would not want to suggest something improper for you. 
 
We are here to support you so do stick with us.  I would be interested to hear how the study your are enrolled in at the U fo M turns out.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

carl56
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Date Joined Mar 2010
Total Posts : 6
   Posted 9/5/2010 1:11 PM (GMT -6)   
I had surgery for an ascending thoracic aortic aneurysm on May 3rd at the Cleveland Clinic (Dr. Roselli). They were able to put in a graft and repair the bicuspid valve. I feel great! I was back to work on June 5th with some weight restrictions. I am now back to my normal routine and am able to do much more than prior to surgery. I exercise 60 minutes a day. I had my 3 month check last Friday and everything looks great. The first few days were a little rough, but not as bad as I expected. I am so glad it's behind me now! I wish all of you the best of luck in your treatment! 

margiemm
Regular Member


Date Joined May 2010
Total Posts : 33
   Posted 9/5/2010 2:14 PM (GMT -6)   
   I am so happy to hear your good news. I also have the ascending thoracic aneurysm,a nd I am concerned about recovery if I need to have the repair. I am told I will need to be put on the bypass , and it will be a long complicated surgery. I am not looking forward to that, so I am happy to hear that you had a good recovery. If need be, I may look at going to Cleveland Clinic also.  Again, happy to hear your good news.  Margie

margiemm
Regular Member


Date Joined May 2010
Total Posts : 33
   Posted 9/10/2010 5:22 PM (GMT -6)   
Does anyone see cardiologists on the east coast , near or in Pennsylvania?  Please let me know. Cleveland Clinic isnt too far to go, but if I could find someone in PA it would be much better for me and my family.

MaryAZ
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/16/2010 4:30 PM (GMT -6)   

My DHCA open-heart surgery is scheduled for 10/1/10, two weeks from tomorrow at Cleveland Clinic in Ohio with Dr. Bruce Lytle. As a proponent of not having ANY invasive procedure unless absolutely necessary), it feels truly surreal that I am walking into one of the most invasive surgeries possible for repair of my greater-than-5.0-cm thoracic ascending aortic aneurysm with bicuspid valve and possible valve replacement but……with no alternative……HERE I GO! I am an extremely healthy 66-year-old female who for the past year has walked 12 miles per week and I swim 3-4 times per week. In preparation for surgery, since November I also have lost thirty pounds and am now the same size I was in high school at 120 pounds. I have never had even one symptom from my aneurysm, finding it incidentally on chest x-ray and CT scan in 2006. I have never posted any comment to the internet in my life but today my brain is beginning to "summersault" as the surgery nears.........so thought I would post my appreciation of the comfort I have received from others in discussing their similar experiences in this forum. To Carl56 New Member, I can't believe you were back to work in four weeks after your similar experience and I am so happy for your good experience at Cleveland Clinic.

Happy trails to all of you, from Arizona.  yeah


margiemm
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Date Joined May 2010
Total Posts : 33
   Posted 9/16/2010 5:28 PM (GMT -6)   
 
    MaryAZ,   Welcome, and I am glad that you decided to post on this site. I am hoping for a great outcome for you when you have your surgery, and will be praying for you. It sounds like you are in great shape, and that is a plus for a speedy recovery. I have been going to the gym and eating healthy as best I can, so if I need to have the surgery, I too may have a good recovery. Keep in touch with us, and let us know how you are doing. You are another person who chose Cleveland Clinic, but do you live in AZ?  I am from PA, and would consider going there if need be.   Please let me know,  Margie

MaryAZ
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Date Joined Sep 2010
Total Posts : 3
   Posted 9/16/2010 5:41 PM (GMT -6)   
Yes, I live in Arizona but, after researching for almost one year regarding the best surgeon and hospital for this kind of surgery, there is none better than Cleveland Clinic. We went there in March 2010, went through some testing and met with Dr. Lytle.  I had gotten three separate cardiothoracic surgeon opinions before I decided on Cleveland Clinic and I wouldn't have it done anywhere else.
 
MaryAZ

margiemm
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Date Joined May 2010
Total Posts : 33
   Posted 9/16/2010 6:12 PM (GMT -6)   
 
 
   Mary, Thank You for the quick response, I will really look into Cleveland if I find that I need the surgery. I also had no idea that I had this, it was found on a ct scan. I sometimes wish that I didnt know, but it also has made me look at life alot differently, and has made me get my priorities straight, and not worry so much  about the small stuff.  Thanks again, margie

carl56
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Date Joined Mar 2010
Total Posts : 6
   Posted 9/20/2010 2:46 PM (GMT -6)   
Mary,
 
My thoughts are with you. I know what the weeks are like prior to surgery. I know I only thought of how bad it would be, not of how good I would feel afterward. I strongly recommend the use of the guided imagery cd that Cleveland Clinic provides. I also purchased some others. It gave me something positive to focus on when I needed to. You are going to a great facility, with not only great surgeons, but a great staff. You will have the best care. You will be surprised how fast you feel better. Listen to your physicians and, take good care of yourself! Hang in there, let us know how you are!
 
Carl 

MaryAZ
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/20/2010 6:15 PM (GMT -6)   
Thanks, Carl, for the kind and positive words. 
 
I too thought that guided imagery would help and I even bought a new iPod (never owned one in my life and didn't even know how to work one). I filled it with a BUNCH of the greatest medication, positive, uplifting music that I have researched and found over the past few months.  I am very excited about having it with me there and some of my family members are coming all the way from Colorado to be with me  s well. I have also met many, many super-wonderful, understanding and caring people through this whole experience (such as the ones on this blog) and I expect that this adventure will continue to be positive as I encounter, what I believe to be, the very competent people at Cleveland Clinic. So........I am looking at this as a brand new kind of adventure and one that just might hold the best things yet to come (that I never would have known about if this hadn't happened).
 
Thanks again for your kind thoughts.
 
Mary yeah

RJSonny
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/23/2010 9:11 AM (GMT -6)   
Hello,
 
My Dad and I were both born with Bicuspid Aortic Valves.  Mine was discovered when I was 4 years old...Interestling, my Dad's wasn't discovered until he was in his late 50's (probably because the technology wasn't available when he was born).  I am now 36 years old and my Dad is 70.  We both have had regular checkups every 5 years with out Cardiologists.  Approx 2 years ago (2008), an Aneurysm of my ascending thoracic aorta was discovered measuring 4.5.  I was told to come back every year instead of every 5 years, but other than that I was Not put on any blood pressure medication at that point.  The Dr did not seem to concerned about it and so neither was I.  I also had not done any research on it so knew very little about aneurysms at that point.  Sometime in 2009, my wife kept urging me to get a second opinion about the condition of my heart in general.  I finally did agreeing that it's not good to put all your eggs in one basket (i.e. trust in one doctor).  My Dad has been a long time patient of Mayo Clinic and my wife was urging me to go there, so I did in April of 2010 (and had all my records transferred down there)  They were extremely thorough with testing (echo, ekg, chest x-ray, and cat scan).  After after their analysis they stated my aneurysm was at 4.9 (which scared the living daylights out of me) since I assumed it had grown 0.4 in a year, but after careful comparison between the previous echos and the current one, the cardiologists determined there had been no growth.  Differences in how they measure was the explanation given for the discrepancy.  At my request, I went back again in July since I had a great deal of anxiety after my trip to Mayo in April.  They are very good, but put the fear in me as to the seriousness of it all.  There was no change in July either, so we are continuing to watch and wait at this point.  They did put me on a low dose of blood pressure medication, advised me to lose some weight and not lift anything over 40 lbs.  My father also had an aneurysm discovered in the past year or so measuring at 4.7.  I belive the consensus at this point is that if it rises to 5.0 we'll go ahead with the surgery since there would be no reason to wait any longer at that point.  Mayo takes a more conservative approch to intervention than some other places.  Now my next checkup will be in Feb (I am going every 6 months).
 
When I do have my surgery it will also involve replacing the valve.  I have been really torn between what type of valve I should eventually go with.  I hate the idea of blood thinners with the mechanical valve, but I also hate the idea of having to get a tissue valve replaced 10 years afterward too (possibly sooner).  I've also been researching the On-X Prosthetic Valve, which is supposed to be the best of both worlds...Strong durable carbon construction but also doesn't form blood clots.
 
I agree with others though that this weighs heavily on one's mind.  I pretty much think about it every day...I don't have the anxiety that I did back in May, but it is definitely on my mind a lot.  I feel it has made me more cranky with my family, which is unfortunate I know.  I keep telling myself that advances in technology have made this surgery so much safer now and that I have nothing to worry about.
 
One of the biggest concerns I've had though is regarding Kidney problems post surgery.  I have read in a few places that there is a higher risk of renal kidney failure after thoracic ascending aortic surgery.  Has anyone heard of this or have any thoughts/insight into that claim ?
 
Thanks
 

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/24/2010 6:03 PM (GMT -6)   
Hello RJ and welcome.
 
You seem to know this condition well and you are being monitored by a facility with a reknowned reputation for having the best available when it comes to cardiac care. 
 
The mortality rate in the past for this surgery was as high as 20 percent, but with an approach that was introduced in 1994, the  mortality dropped below 5 percent according to an article I have read.  Kidney failure, which had been a major concern after surgery, has been almost completely eliminated. Take a deep breath and please do write all your questions down so when you see the Dr. in February you can ask about these statistics. 
 
I am so glad you found us and I hope you and your Father do well so keep talking to us.
 
Kindly,
Kitt
 

 


~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

carl56
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 10/24/2010 1:59 PM (GMT -6)   
MaryAZ,

Just wondering how you are doing. You should be a few weeks post-surgery. I hope your recovery is going well! Let us know when you can.

Carl

margiemm
Regular Member


Date Joined May 2010
Total Posts : 33
   Posted 10/24/2010 2:32 PM (GMT -6)   
I was wondering the same thing, since I was just at the Clinic , and thinking of Mary, and her surgery. Hope that all is going well, I have been praying for a good outcome and speedy recovery.  Margie

gpo
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 11/23/2010 4:32 PM (GMT -6)   
Hi Kitt, I just posted in the general heart and cardiovascular disease forum, but I wanted to post in the ascending aortic aneurysm forum in response to nem member Beth regarding my recent surgery. Can you help me fix this?
gohnsman
 
Here is a copy of what you posted in the other thread:
 
Hi out there, especially Miss Helen whose posts I read 2 years ago when I first found this forum.  Beth, I am a retired ICU nurse, so I know how it feels to know, understand, and research until you drive yourself crazy!
My ascending and aortic arch anuerysm has been monitored by Dr. G. Michael Deeb at the University of Michigan Cardiovascular Center for the last 2 years, and this summer he recommended surgery in view of the gradually expanding size as well as strong family history.  My mother died suddenly at age 59 from a previously undiagnosed aneurysm of the exact same location as mine, and my younger brother has one in the same location, also.  I have been participating in a genetic study at the University of Texas directed by Dr. Dianne Milewicz since that time; she is now director of the John Ritter Foundation for Aortic Health as well.  At age 65, I had an 8 hour surgery on November 18th, and came home yesterday on day #4 after a graft placed in my ascending aorta into the arch, and another graft in the base of the inominate artery (the first vessel that leads off the arch to the brain)as well as a valvuloplasty.
On my first day home I was out walking in the neighborhood for almost 30 minutes, went to the grocery store with my husband, and helped with 3 loads of wash.  It is entirely too amazing!  Fortunately, when I knew that I might someday need this surgery, I got my weight down to my ideal weight, began exercising 6-7 days a week within my Dr.'s restrictions (including spin cycling, lower level weight training, pilates, and yoga).  I was 80 pounds over weight when I was first diagnosed, so you can imagine that it wasn't an easy journey to be ready.  It definitely made a huge difference in how well the surgery went, and how the recovery is going.
I know that the idea of open heart surgery is daunting, and that one doesn't always have much time to prepare, but do the best you can; find a center near you that has the best outcomes, and does the most aortic procedures possible.  I went 2.5 hours away, and the trips have been well worth it to have absolute conficence in my surgical team.  Good luck
 

Post Edited By Moderator (stkitt) : 12/1/2010 8:29:41 AM (GMT-7)


margiemm
Regular Member


Date Joined May 2010
Total Posts : 33
   Posted 11/23/2010 4:50 PM (GMT -6)   
Hi, Hope your surgery went well, and wishing you a speedy recovery.  Margie

pivan113
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/30/2010 9:48 PM (GMT -6)   
Hello
 
I am located in NJ/NYC area - any recommendations for a great dr. I have an TAA (I think that is thoracic ascending aortic aneurysm) - I am 39 and in decent shape. I am working out- any suggestions for work outs? things I can and cant do? I have been told by the cardiologist that I cant lift heavy weights.
 
I am very frustrated, due to my profession, I am used to having the requisite knowledge I need to solve problems - now I feel lost.
 
any advice - books, etc. - would be appreciated.
 
Thanks.
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