Mayo Clinic Connect
‘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?’?
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.
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Dr. Pochettino is the BEST!!! Relax, follow his instructions and you will be feeling much better sooner than you think. Had my surgery last July and am 78 years into this life. If I can do it so can you. We are all much tougher than we think we are……..be positive!. Life is most interesting, I love old Mom Nature so much and that alone helped me. We are so fortunate to be here. How else can we get our country back on track? We need you!! Get it done and start writing petitions like the rest of us. You will belong to a club. Anytime someone catches a glimpse of your scar they will welcome you to “the club”. Do relax, all will be fine. Ask me anything you wish about the Dr. or the surgery or both.
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
By the way, was only in ICU 2days and left hospital in 4 days. Live alone so had something they call “swing bed” at my local hospital and was home in 5days. If you live alone make sure you sign up for the in home health care for a couple of weeks. Didn’t really need it but for once I gave in to commonsense and had that service for about 3 weeks. Going back to heavy duty weight lifting soon should have been there months ago but broke ankle during my recovery time. That broken ankle was WORSE than my heart surgery!! Can’t find my first answer to you, hope it didn’t get lost somewhere is digital world. Just want to make sure that you know Dr. Pochettino is the BEST!!!
Liked by Kanaaz Pereira, Connect Moderator
I can’t thank you enough for your reply. I am starting to gain a little confidence about the surgery. I had the first surgery in 2013, an 18″ incision down my back. There were a lot of complications and pain. After 6 months I was ready to leave this world. Obviously, I made it but don’t want a repeat. Mayos sounds like right choice this time. Thanks again.
Thank you so much for your reply. I didn’t know a total arch replacement is a possibility. I am beginning to have hope and feel like I have a good chance. Thanks again.
Welcome to Connect; we’re so glad to have you join us. I’d also like to thank @crhp194 and @morningglory for their valuable responses.
Here’s another discussion that you may wish to view:
I am 50. At 13 I had a coarctation of the aorta repaired http://mayocl.in/2sCgKTC
I’m tagging members @ch246cf10 @jend @michellr who can share their experiences and provide some guidance and thoughts.
And, while we wait for others to join this discussion, here’s a video that Dr. Pochettino made explaining what patients need to know about aortic surgery:
Keep talking with us. You’re not alone.
You can’t imagine how much I appreciate Connect and what it has done to alleviate the fear and uncertainty of facing this surgery in August.
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
My mother passed away at the age of 37 of a sudden Thoracic aortic aneurysm. Otherwise I’m good health. My question is ‘Has anyone else had anything like this happen in their family and what, if any warning signs are, and how to catch one early.
Welcome to Connect, Rev.PBR @pbr420,
I realize you must be quite worried, and moved your message to this discussion thread about thoracic aortic aneurysms, so that you can meet fellow members @grandmajan @ch246cf10 @michellr @HeartPatches @jimmorris900 @janean @morningglory. I encourage you to read through the messages in this discussion forum to see some of the experiences and tips they’ve shared.
Here’s some information from Mayo Clinic as well: http://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/home/ovc-20122021
@pbr420, It is natural to feel afraid, but as you will read throughout the discussion, it is a condition that many people live well with. What is your main fear or concern at the moment? Have you spoken with your doctor about this?
It would be best if you saw a cardiologist and be confident that your situation can be handled safely. I have had a aortic aneurysm and the surgery for repair. I felt so confident of my thoracic surgeons ability I never even considered there would be any problems. And there were not! That was a year ago and I’m doing just fine at 79 years old. You will be fine also and you have youth on your side, so it will be even a faster recovery for you. So make your appointment and go forward with experts. I had mine at Mayo in Rochester, Mn by Dr. A. Pochettino, he is Mr. Wonderful!
My ascending TAA was diagnosed at the end of 11/2016 measuring at a 4.2 cm. In June 2017 it was a 4.6 cm. Today 9/7/17 I have been hurting pretty bad with sharp pains between my shoulder blades. I have been to the ER where they tell me-“if you had dissected you wouldn’t be sitting here”. I think it has grown more and I know my body- that something is wrong. This sharp pain is not normal. I don’t know who to turn to. I’ve put a call in to my cardiologist and surgeon. I feel like to them I am a liability- like they are waiting until it’s as close to 5 as possible to avoid a lawsuit if something goes wrong. I am raising my 4 yr old grand daughter. I’m trying to be proactive and positive but this can be so frustrating. Can anyone tell me where I can go that does is much more knowledgeable about aneurysms?
If you can get to a Mayo Cline, please go. I had an aneurysm that was over 5 in 2016 and still had no symptoms. I did have surgery at Mayo and all went well. If you cannot get to Mayo, go to your cardiologist and insist that he or she see you. It’s your life, not theirs and you only have one life. I would not worry what a doctor thinks about you. They are there to help so please go asap.
Demand you be seen for a cta or 2d echo. They work for you & it’s your body & life! Like you said, you know your body. Don’t be afraid to demand an appt. I’m a nurse & people demand we get them all kinds of things. Lol. Your concerns are legit. Don’t take no for an answer. My aneurysm grew from 4.3 to 4.8 in 6 mos. my Dr said I could wait. NOPE. I had surgery 2 wks later. I couldn’t live with the bomb in my chest
Hello: I just saw your message. I totally agree with crhp194. I had surgery for aortic aneurism as well as replacing my aortic valve. My aneurism was well over 5 and I had NO symptom. My cardiologist in Chicago referred me to Dr. Nishimora at Mayo who advised me to have the surgery done by Dr. Pochetino at Mayo. Surgery was done in early Feb of this year and I am absolutely fine. It is a major surgery but Mayo does a fabulous job and Dr. Pochetino is great. I hope this helps.
based on this diagnosis am I at risk of doing more damage, if I take a testosterone supplement?
I apologize for not responding earlier, but somehow I missed getting a notification about your post! I’m quite sure it’s a tech glitch because I see that Connect Mentors, whose fluency in responding to new members is beyond helpful, probably did not get notified either.
Thanks for the followup, @colleenyoung.
You may also notice that I moved your discussion and combined it with this existing discussion on thoracic aortic aneurysm, because I thought it might be beneficial for you to be introduced to the many members who have discussed the same.
If you are replying by email, you could click on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones’ experiences.
Here’s a great article from Mayo Clinic that might help your search for answers:
– What are the heart risks associated with testosterone therapy? https://www.mayoclinic.org/healthy-lifestyle/mens-health/expert-answers/testosterone-therapy-side-effects/faq-20090015
I also encourage you to view these discussions on Connect:
– https://connect.mayoclinic.org/discussion/low-testosterone/ (although this is an older discussion, @roush writes about Androgen and heart issues, and I’m hoping he will return with more insight).
While we wait for others to join in, I’d like to invite Mentors @predictable and @hopeful33250 to see if they have any thoughts or suggestions as well.
@redskin39, we look forward to getting to know you; may I ask if you could share a few more details? When were you diagnosed with thoracic aortic aneurysm? Have you asked your doctor about taking testosterone supplements?
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