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 was jusr diagnosed with a 5.9 cm therasic arterial aneurysm. I am finding information that states its only a medium sise aneurysm. It still scares me. The VA found it last week but the cannot do the surgery.
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@smithjss It natural to be scared. I was diagnosed with enlarged aneurysm I was dilated to 5.5 cm I had valve sparing aortic root replacement done in September 2012 at Mayo Clinic Rochester . There always risk with surgery but I wouldn’t be to scared about. surgery just go some were Like Mayo Clinic that well knowing for it. The worse for me was the first 24 hours after surgery the only thing that happened to me was that about two weeks out from surgery I went in to a-fib ended haven ablation for atrial fibrillation other than that it just time only other thing would say is if can wait would wait until fall when the weather is cooler so more comfortable for recovery anything want to know just ask will answer if I can
Liked by Colleen Young, Connect Director
Welcome to Connect @smithjss. I moved your message to this existing discussion thread (https://connect.mayoclinic.org/discussion/thorcic-aneurysm/) about thoracic aortic aneurysms so that you can meet fellow members @grandmajan @ch246cf10 @michellr @johnwburns @lynnkay1956 and @HeartPatches. @jimmorris900 and @jend may also join us here on this discussion thread.
It is natural to feel afraid, but as you can read throughout the discussion, it is a condition that many people live well with. You may also wish to read this discussion https://connect.mayoclinic.org/discussion/large-ascending-aorta-in-young-healthy-45-year-old-woman/
@smithjss what is your main fear or concern at the moment?
@colleenyoung my biggest fear is the unknown. Having to deal with the VA for referals seems to be taking to long, even though there has only been 2 business days since my diagnosis. How long will i expect to be out of work? How likely is it that the aortic valve will need to be replaced? What side effects will there be after the surgery? I know these are some questions ill need to ask my surgeon. There is so much going through my head its hard to relax enough to sleep.
You can expect to be out of work safe to say about 90 Days, You wont be able to drive for about Eight weeks. You will have lifting restrictions for a few months The aortic valve being replaced depends if already leaking. but would say that should probably be able to replace you natural valve. You can look up what they call a valve sparing aortic root replacement it might give you some info also Some of the side effects I had after surgery was body temperature changes would have night sweats etc. for couple weeks after surgery,fluid retention. sometimes I became really emotional after surgery . Don’t let you self get so worried about it will be all good
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.
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.
Liked by Colleen Young, Connect Director, morninglory, rhiannonmb
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.
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?
THank you, Bruce! Mayo did their part bu seeing the need for almost immediate surgery and scheduled it quickly.
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.
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!
@smithjss we haven’t heard from you in a while. How are you doing? Any updates on getting surgery?
Your aneurysm usually needs to be repaired at that size. I would see if you can get to Mayo’s or somewhere that does lots of these surgeries. Many tests are done before surgery so you should know beforehand the operating plan before you have the surgery. If you are worried about afterward, Mayo’s has excellent pain control and excellent nurses who are readily available. In particular, nurses Emily, Callie, Amy, aKevin, Dot, Patti-these are very caring and knowledgable. My surgery was May 10, 2016 and all is well. @smithjss
I had surgery 2/15. The pain was no.big deal. I was kayaking 8 wks after. I am still.having opthalmic migraines, something new since surgery. Besides that , feel great
Diagnosed with this 6 months ago. Just now starting to have minor chest pains. Have CT scan with contrast on Thursday …anyone else have this. What comes next? A little concerned. Thanks.
Hi @srlove, I moved your message to this existing discussion about Thoracic Aortic Aneurysm so you can meet other members who have “been there” and can help answer your questions about what comes next. I encourage you to read the messages in this discussion forum to see the experiences and tips @michellr @johnwburns @crhp194 @ch246cf10 @jimmorris900 and others have shared.
What concerns you the most? What questions do you have?
What comes next depends on the size of the aneurysm. Above 5 cm doctored seem to,want to operate to avoid rupture. Having gone through open chest surgery in May, I am amazed at how great I feel. Was sore (incision soreness) for about four weeks but could do rehab walk and live a normal life. After 6 weeks I was quite well. If you work, doctors say you can go back after about 6 weeks as long as you don’t lift much for 3 months. I had no complications or infections so I felt very lucky. Mayo Clinic seems to do everything possible to,avoid infections. The staff was so kind, knowledgeable, and careful that rather than the horror the surgery could be, it was not bad at all. The first two days are spent in ICU and then to intermediate care. I must admit I really don’t remember the day of surgery or much on the second day. The pain control at Mayo was excellent. If you have more specific questions, please ask. Good luck!
Liked by Colleen Young, Connect Director, JohnWBurns, srlove, morninglory
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