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jbsb93

Thoracic aortic aneurysm

Posted by @jbsb93 in Heart & Blood Health, Jul 28, 2011

'I was born with a hole in my heart and have had 2 surgeries. One to fix hole and the other a valve replacement. I've been recently told the I have a thoracic aneurysm and possibly will need more surgery.. Anyone gone th ru this before?'?

aldona

Posted by @aldona, Jan 23, 2012

I qwas diagnosed for a thoracic aorta aneurysm this month. Also had syrgery for a triple A Abdominal aorta aneurysm three years ago. I am looking for reassurance due to my magic magnifying mind...seems like I have a time bomb ready to go off. How did or how are you dealing with this aldona @jbsb93

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jbsb93

Posted by @jbsb93, Jan 23, 2012

Well, my body handled it real well with lots of prayers from people all over the country I made it through it. I had my surgery done at the Univ of WA Medical Center in Seattle but I've had 2 previous surgeries done at Mayo. If I had lived closer I would have gone to Mayo. However, they did a wonderful job at the UW. I had
Dr. Verrier as my surgeon and his team said that if they would have this surgery done, they would have him. I don't know how big your aneurysm is but I wouldn't wait. Mine turned out to be 6cm. I will pray for you. Please let me know how it turns out.

Sharice

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debintx

Posted by @debintx, Feb 23, 2012

Endovascular Surgery for thoracic aorta aneurysm

johnwburns

Posted by @johnwburns, Jun 1, 2015

I was diagnosed 4 months ago with an aneurysm on my ascending aorta, 4.3 cm. I'm 66 years old. My father died from a dissected (burst) aortic aneurysm when he was 60. The recommendations seem to vary as far as blood pressure control to prevent dissection. Some say keep the systolic pressure below 140 mm Hg. Others say to get it below 120 mm Hg. Who's right?

clevelandme

Posted by @clevelandme, Oct 5, 2015

Hi John, I was diagnosed a year and a half ago with the same thing. Mine is 4.6 cm and also dissected. They wanted to do emergency surgery. I told them I felt good and I wanted to get a
Second opinion. They took me to another hospital. I was there for about 4 days. They did all the test again and it ended up with us keeping an eye on it. No surgery, I did a 3 month, 6 month and a one year check up, and now the told me to come back in a year. I was glad to hear this. They told me not to lift over 100 pounds and do not exert myself. I just try to be careful and do what they tell me. I know I can live with this. Hope you do ok too. Good Luck!

clevelandme

Posted by @clevelandme, Oct 5, 2015

Was fled to hear that. I had follow ups at 3, 6 and 12 months. The told me to come back on a year now. I am limited to not lifting over 100 lbs. and do not exert myself. I can live with that. I hope that you do well too.
Good Luck!

michellr

Posted by @michellr, Jan 30, 2016

I am 54 yrs old. Diagnosed with thoracic aneurysm. In 8 mos it grew from 4.3 to 4.8. I am scared to death. Anyone out there had the surgery. I dont know which is worse, the bomb in my chest or the stroke i might have diring surgery!

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colleenyoung

Posted by @colleenyoung, Jan 30, 2016

Hi @michellr,
Welcome to Connect. I moved your message to this discussion to introduce you to other Connect members who are talking about thoracic aneurysm. Interestingly @aldona like you felt it was like having a time bomb inside her. @jbsb93 opted to have surgery while @clevelandme decided against it.

I'm also tagging Bruce (@ch246cf10) to bring him into the conversation.

There are many factors to consider when making such an important decision. I encourage you to continue to share your thoughts and ask questions here with people who have "been there". Sometimes it just helps to write it down.

Colleen
Connect Community Director

michellr

Posted by @michellr, Jan 31, 2016

Thank you. I am very aftraid of the surgery and to make matters worse I am a cardiac nurse! I am afraid of a stroke, PE, and death during surgery and sudden death if i dont. Do i just go to a local surgeon , i live in Chicago area, or do i go somewhere else. This is stressing out my life. I have humana hmo. Can i even go somewhere like mayo

johnwburns

Posted by @johnwburns, Jan 31, 2016

Settle down. You're going to be alright. Your blood pressure is under control right? Control as in systolic

lynnkay1956

Posted by @lynnkay1956, Feb 1, 2016

You would have a hard time going to Mayo since you have an HMO ...You have the University of Chicago near and they would probably send you there...http://www.uchospitals.edu/specialties/heart/services/genetics/conditions.html

johnwburns

Posted by @johnwburns, Feb 1, 2016

UC isn't chopped liver. Neither is Rush. If you can find a way to go to Mayo a big plus is the social worker arm of their organization to grease the wheels for your trip and recovery. But maybe UC or Rush has something like that too. Rush is in a wicked neighborhood as is UC. This is a big deal. You want things to go smoothly, and they will.

colleenyoung

Posted by @colleenyoung, Feb 2, 2016

Hi @michellr
I'm so sorry to hear how stressful this is for you and hope you are taking measures to manage the stress.

As for getting treatment at the Mayo Clinic, Dr. Pochettino, an aortic surgery expert at Mayo would be happy to review your records to understand your situation and determine what type of cardiac surgery needs to be performed. To begin this process, please call Dr. Pochettino's patient appointment secretary, Hope Nesbit at 507-255-2000. After determining what type of surgery is needed, Ms Nesbit will connect you to our business office to speak about insurance options.

Here's a video Dr. Pochettino made explaining what patients need to know about aortic surgery https://www.youtube.com/watch?v=s3plTqJ9E4s

Here's a quick read about the The 4 A's when you find yourself stressing - Avoid, Alter, Accept and Adapt - http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044476?pg=1

I hope this helps. Keep talking with us. You're not alone.

crhp194

Posted by @crhp194, Jul 13, 2016

Had a large thoracic aorta aneurysm (6+) repaired at Mayo in May 2016 plus a total arch replacement plus one bypass by Dr Pochettino. Wonderful Doctor and by my result, a real expert. I am 72, had no complications and felt like the old me after 6 weeks. I cannot recommend Dr Pochettino enough and thankful to him for saving my life. At home in an area of about 100,000 population, there wasn't a doctor who could do an arch replacement. Mayo and its doctors are the best.

ch246cf10

Posted by @ch246cf10, Jul 13, 2016

Good to hear. When my aneurysm was discovered there weren't any local Doctors experienced with my unique condition, and I had to travel to where the experience practiced. All we can do as patients is our homework. You did yours and it paid off. All the best to you.

Bruce
Texas

colleenyoung

Posted by @colleenyoung, Jul 13, 2016

Welcome to Connect @crhp194. Thanks for the ringing endorsement of Mayo and its professional care team. As Bruce said, we have to our homework and find the experienced and the best.

How is your recovery going? You said you felt like the old you after 6 weeks, but are there changes that you've introduced to the old you, like diet or activity, perhaps attitude?

crhp194

Posted by @crhp194, Jul 13, 2016

THank you, Bruce! Mayo did their part bu seeing the need for almost immediate surgery and scheduled it quickly.

crhp194

Posted by @crhp194, Jul 13, 2016

I have dealt with some depression but my solution toward depression which I have had for a good share of my life is to keep busy. I have had some trouble sleeping and that's where depression crops up for me. As for positive things, I am working very hard to walk every day at least 30 minutes.

ch246cf10

Posted by @ch246cf10, Jul 13, 2016

My Aneurysm surgery was in 2005. It was very invasive at that time (lots of cutting), and my first operation was in 1978, so my 2005 recovery was slow due to the scar tissue removal of ~24 years delta between the procedures. You feel kind of helpless and out of control the way your body failed, and now depend on others who a few days before were total strangers. I worked on my hobbies for a few months while on the mend. There has to be something you enjoy where you can focus on it while you heal. That will give you something positive to look forward too. Maybe this will help with your depression . Old coins, stamps, etc. Go to a show related to your hobby, like a Coin or Stamp show. Mingle a bit. Keep your chin up!

Bruce
Texas

shakuni11

Posted by @shakuni11, Oct 25, 2016

Glad to see your post. I am 67 yrs old and underwent a bypass surgery with Aortic Valve replacement 14 yrs ago. Now I have been recommended to have surgery for an enlarged Aortic Aneurysm (5.7CM) and replacement of Aortic Valve with a mechanical valve. They may also redo some bypasses. Have visited Dr. Nishimura and Dr Pochettino recently. Concerned about length of surgery and the post op care and the risk associated. I am generally in good health and have no other health issues. Any comments and opinions welcome.

ch246cf10

Posted by @ch246cf10, Oct 26, 2016

Hello,
Your situation is similar to mine, a good amount of time between procedures. Your body has probably formed some scar tissue that has manifested itself on your chest cavity around the areas cut on. They will have to deal with this to get to the items needing repair. For instance my Aorta had fused itself to my Esophagus(sp). I was confused when they couldn't give me a definitive time of how long the surgery would take. The variable was scar tissue, and each persons body responds differently. In-fact they knew at the time my Aortic Valve was leaking and only had 2 leaflets, where normal is 3. Just fixing the Aneurysm was all they had time to do. So today, I have a perfect Aorta, and will some day have to contend with the valve. If your left lung gets collapsed during the procedure for additional room for the Dr. to work, do all the treatments and rehab to rejuvenate the lung. Try your hardest. If you don't it may not fully return. I'm dealing with a 50%+ reduction in lung capacity due to my two surgeries. I'm not sure I did all I could do to prevent this.

All the best.
Bruce

shakuni11

Posted by @shakuni11, Oct 30, 2016

Thanks for your detailed response. Very helpful Couple of quick questions , if u don't mind.
Where did u have your surgery and how long was it? How was the Post Op and how long was your total stay in hospital? Thanks again for your very helpful response. Will keep my fingers crossed re my surgery.

ch246cf10

Posted by @ch246cf10, Oct 30, 2016

Hello,
My first surgery was 1978 Montefura(sp) in New York City(We lived upstate New York, why I ended up there. I was 13 years old. Have no idea the procedure time, I was in the hospital for about 1.5 weeks.
My 2nd surgery was 2005, Memorial Herman, Houston Texas. Live ~200 miles away and the Cardiac Center has lots of recognition. I was lucky to be near well qualified help. My age was 49 years old. Surgery was about 5 hours, in Cardiac ICU for 2 days, and Cardiac Recovery for 18 days. First two days was like learning how to live again. I was cut radially following the rib-line, and one rib was removed permanently to allow the dr. sufficient room for doing the aneurysm repair. When they opened me up it was one big matted mess of scar tissue and organs. This was probably the major time consumer. The delta between the first surgery in 1978 and then allowed my body to grow lots of scar tissue. The extended stay at the hospital was due to my chest drainage not letting up. I had lots of incisions inside of me and they were all draining. This was not normal. I would think this would be different for you.
Couldn't eat or swallow for 7 days after the surgery. Had me on TPN(Total Parental Nutrition) IV and I was never hungry. Wish I had an IV of that stuff at home for long movies like Dances With Wolves!
This surgery was the single most difficult task I have accomplished in my life.

Keep your chin up.

Sincerely,
Bruce

shakuni11

Posted by @shakuni11, Oct 30, 2016

Thanks. Looks like you went thru a lot. I am keeping my fingers crossed.

crhp194

Posted by @crhp194, Oct 30, 2016

I had surgery at Mayo in May, 2016. Had aneurysm repair and total arch replacement. All in all it was much less bad than I imagined. Surgery lasted for 6 hours, in ICU, I am told for 2 days-don't remember much about that. Then in hospital for a total of 8 nights. Recovery went very well. Mayo gives pain meds if you need them and great care from kind and caring nurses. Looking back on the surgery, I never doubted it would be successful. From Mayo, I went directly home, about 500 miles away and haven't looked back. No problems at home and then went to rehab. Good luck to you and hope you will have an easy recovery. I have such great faith in Mayo which gave me lots of confidence in the outcome.

crhp194

Posted by @crhp194, Oct 30, 2016

With your overall good health, I would think your experience would be similar to mine. I was 72 years old at the time and had fairly good health.

shakuni11

Posted by @shakuni11, Oct 30, 2016

Thanks. Very reassuring.

colleenyoung

Posted by @colleenyoung, Feb 8, 2016

Hi @michellr,
I just wanted to check in and see how you are doing?

michellr

Posted by @michellr, Feb 9, 2016

Thx. Surgery 2/15. 

johnwburns

Posted by @johnwburns, Feb 9, 2016

Best of luck Michelle. You're going to sail through it. 

grandmajan

Posted by @grandmajan, Oct 25, 2016

Hi Colleen: Do we know what makes the Aortic Aneurysm expand? or stretch ? Mine is 4.3 and has been that since 2006.

colleenyoung

Posted by @colleenyoung, Oct 27, 2016

Good question @grandmajan.
This article from Mayo Clinic http://mayocl.in/2eL520R states "Many start small and stay small, although many expand over time. How quickly an aortic aneurysm may grow is difficult to predict." Understanding the cause of the aneurysm can be a clue as to what causes it to grow, ie high blood pressure. It sounds like there is no single answer that applies to everyone, and explains why active monitoring is important.

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grandmajan

Posted by @grandmajan, Oct 28, 2016

Colleen: Thank You for the information. That helps.

colleenyoung

Posted by @colleenyoung, Feb 9, 2016

That's great Michelle. Where did you end up booking your surgery? How are you feeling about it?

michellr

Posted by @michellr, Feb 9, 2016

I am really freaked about it. I am having it where I work at Edward Hospital with a really good surgeon. Just wish It was over with.

michellr

Posted by @michellr, Feb 9, 2016

Every one says that. I wish I was so sure. Thanks though

morgan44

Posted by @morgan44, Feb 19, 2016

Want to know about thoracic aortic aneurysm risks of surgery.

colleenyoung

Posted by @colleenyoung, Feb 19, 2016

Hi @morgan44, welcome to Connect. I moved your message to this discussion thread to introduce you to other Connect members talking about the pros and cons of surgery. In fact @michellr just had surgery this week. Once she's feeling able, I hope she'll return to tell us how she is doing.

I'm also tagging @johnwburns @lynnkay1956 and @HeartPatches.

In the article, there are sections about treatment and self-management http://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/home/ovc-20122021

Are you considering surgery?

grandmajan

Posted by @grandmajan, May 10, 2016

Talk about the success of "stint" to support "aneurysm of thoraci aorta" . Long term?

colleenyoung

Posted by @colleenyoung, May 10, 2016

Welcome to Connect @grandmajan. I moved your message to this discussion thread so that you can meet other members talking about thoracic aortic aneurysms.

@johnwburns @lynnkay1956 @michellr I wonder if you have any input about long-term use of a stent?

@grandmajan - have you had surgery? Do you have a stent?

ch246cf10

Posted by @ch246cf10, May 10, 2016

We all will respond differently to surgery, for my first surgery to repair a coarctation of the aorta, my body responded with lots of scar tissue. I wish a stint was available in 1978 for my first surgery. The repair formed an aneurysm in 2005 and again, another opening of the chest and one rib lost in the procedure as well. Would have been less invasive (stint) and today, 38 years later scar tissue is making my chest so tight and uncomfortable. If you can avoid opening the chest I would. Just my experience first hand.

Bruce

grandmajan

Posted by @grandmajan, May 11, 2016

Thanks for your response.The Aneurysm was just discovered. I've been asking my Dr if my heart is ok for about 4 years while he's been treating my shortness of breath as Asthma.  Still have to see the specialist. (Thoracic Surgeon)  Since it's less than 5cm , he thinks maybe wait and watch. That makes me nervous. I'm on Xerelto now for a DVT,  Armor Thyroid, Mine was removed in the 70's, and Prednisone.
My BP is good tho very erratic. Pretty healthy and active.  I want to be informed before the Specialist visit to know what questions to ask. 

ch246cf10

Posted by @ch246cf10, May 11, 2016

Let us know what the treatment is in the long run. I am at risk for additional aneurysm's. Nice to hear treatment options that are less invasive. I didn't mention the 2 chest openings(surgeries) were also hard on left lung. They have to collapse the lung for room to work. After the last surgery, the lower lobe never reflated. And with additional scar tissue 10 years after the surgery, lung capacity is below 50% what I should have for my age bracket. In your position if you have time, new less invasive methods will be/are being developed. All the best to you.
Bruce

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