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 first diagnosed with a 4.4 thoracic aneurysm in 2009. It has grown slowly and reached 4.6 in 2016. I am told this could be due to differences in measurement and it may not have changed at all. I currently travel once a year to the Cleveland Clinic in Ohio. I am considering switching to Marshfield Clinic as it is much closer. When I was first diagnosed, I asked my doctor right out if the aneurysm could remain stable and I would never need surgery. He shook his head no. He said I would definitely need surgery at some point. Years have passed since then and now I am not sure what he thinks. I am also unclear when he plans to operate. Sometimes he says probably 5.0 but has also mentioned 5.5. Cleveland is over 8 hours from where I live so I only connect once a year. The remainder of the year I am on my own. I have actually begun to relax and accept my condition until recently. This month my oldest brother was diagnosed with the same type of aneurysm. We are awaiting further testing. A few days ago my closest friend underwent surgery for the same aneurysm at 4.6. He made it through the surgery but died the day he was moved from ICU. Once again I find myself feeling very alone and stressed. Seems like I am always getting pains in my chest and have a deep hoarse cough most of the time. Is this normal or just because I am stressing? So thrilled to find this thread.
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@I went thru this surgery at the very end of July at Mayo in Rochester and all went very well. I am a very Senior citizen and if I can make it thru the operation so successfully so can you. You must have confidence in your surgeon, that is very important. I cannot praise the Mayo surgeon and assistants and nurses enough. They were wonderful, I never doubted I would be up and back on my feet in no time. Just follow their directions and be patient with yourself. That’s a lesson I’m still learning.
Liked by Colleen Young, Connect Director
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, too was diagnosed with aortic giant cell arteritis as a possible cause of my aneurysm, I am on prednisone as treatment for that. Were you also put on prednisone and if so did it resolve the problem? I have found that being on it causes me to have a ferocious appetite and have put on several unwanted pounds. Any info appreciated.
Apparently it takes a year to find out if the prednisone treatment works. I started in August of 2016 so I have some time to finish the treatment. I was also put on methotrexate to combat the immune system. Started prednisone at 40 mg. Now I am down to 9mg, decreasing each month by 1mg now. I was absolutely starving when I was on 40mg but now I find that has ended. I gained unwanted pounds too but find now I am beginning to lose since I am not starving anymore. Wish I could give you a better answer but I won’t know for a while if the treatment has worked. I do return to Mayo in February for an MRA. I have been switched from cardiac surgery to,rheumatology for the giant cell arteritis.
Your aneurysm seems to be slow growing. i have a another aneurysm that the doctors knew about before my first surgery. That one is about 4.5. Mayo has elected not to operate on that one unless it grows a lot. Doctors say I may never need surgery on that one. So I think and (I am no doctor) that your doctor is doing the correct thing. I still have some pains but not long lasting. Sorry I cannot be more help but your doctor seems to be correct. Good luck to you!
Thanks for your replies. Being in a small town there is no support for such a diagnosis. Nice to find this place and others who understand.
Welcome to Connect, @noram. I see you’ve had some great feedback from @morninglory and @crhp194 so far.
This article from Mayo Clinic http://mayocl.in/2hag0w8 states that the decision on how to best treat an aneurysm depends on its size and rate of its growth, location and your overall health and that 5.0-5.5 cm is typically the size when surgery is considered.
Have you talked to your doctors about the pain in your chest? Have you talked to someone about managing the anxiety and stress you are feeling? Hopefully talking with us on this forum will help ease the stress.
I only see my cardiac doctor once a year and most of the problems seem to have started after my last visit. I don’t have another appointment till spring. My regular general doctor says she would do surgery ASAP but she is not a cardiac specialist. Would love to talk to someone about the stress but really no one in this area to talk to. So glad I stumbled on this place. Thank you for responding to my message.
Once you have the surgery are we more at risk for more aneurysms? Is there any info on how long the replacement lasts?
My dr said my replacement will last forever. I hope so, I am 55. If your at risk for more depends on the cause. Was it genetic or HTN induced?? Although i have been assured mine is not genetic, I scheduled an appt for an ultrasound to rule out a AAA and I got rid of the cause of my HTN, my ex.
It is natural to feel afraid; there are so many factors to consider! Stress can induce certain conditions, but please don’t ignore your symptoms; do have them checked out to rule out any other factors.
I’m also like tagging @DiannaTV, @lynnkay1956, @HeartPatches, @laverne, who may return with some more insight.
I would encourage you to view this webinar where Mayo Clinic’s Dr. Juan M. Bowen, Dr David R. Deyle, Dr Alberto Pochettino, cardiovascular surgeon, discuss optimal timing for thoracic aorta repair: http://mayocl.in/2j2H7uV
@noram, the Connect community is here for you to lean on, so I hope you continue to share your thoughts and ask questions with people who share similar life situations.
I was started on 40mg prednisone this past August also and now am on 10mg but still eating as if there is a food ration law coming. Thank you for your reply. Here’s hoping we both can demolish giant cell arteritis once and for all.
Liked by crhp194
Do you have other siblings besides your brother. My mother and 5 of us children have had abdominal aortic aneurysm’s so it is hereditary just like they say. I am the youngest and was able to have mine followed for about 10 years before they put a stent in. The others all had to be opened up. What I’m getting at is to get any other brothers or sisters to get checked. We are encouraging all the nieces and nephews to get checked too. I am 78 and all of my children and nieces and nephews are in their 50’s and 60’s. Today I am having surgery to reline about 10 inches of my thoracic aorta starting just below the arch. I am lucky again and the repair will be through the groin. Did not expect to be having another problem with my aorta but I guess this is not unusual. I hope others can answer your questions about your chest pain and cough.
No other siblings but have warned my two children about this. Good luck to you. I think you will find the surgery to be easier than you think. I dreaded the open heart surgery but it was easier than I imagined. Very little pain and the pain there was was from the incision. All the best!
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.
I am so glad to connect with you. I have a 5.5. Ascending aneurysm and a 7.2 descending. I had a descending aneurysm repair done at Loyola 4 years ago. It was 6 months of hell and complications. It sounds like I will need a total arch replacement. My appts are in August and surgery is scheduled with Dr. pochettino. Still not sure if I want the surgery or let Mother Nature take her course. I am 66 and not nearly as tough as I thought I was.
I had a total arch replacement with Dr Pochettino in May 2016. Really I found it no big deal. Dr Pochettino is one of the best. Nurses told me if they had to have this, then Dr. Pochettino is the one they would choose. I was in the hospital eight nights. I was so well cared for-after leaving ICU (standard procedure), I went to the cardiac floor. There is a nurse for every 2 people. I cannot recommend any doctor more nor any hospital better than Mayo. Yes I was sore but it was easily manageable. Your aneurysm is large so if I were you, I would have the surgery. Good luck to you. If you have more questions about my experience, please feel free to contact me.
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
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