TAA and bicuspid valve--I'm worried by the Drs aren't!

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Hi Everyone! I'm 50 years old and three years ago, during a CT scan for something else, they discovered that I had an Ascending Aortic Aneurysm (4.4 cm). They also discovered thyroid tumors and so the aneurysm wasn't really addressed. About 8 months ago my regular doctor mentioned that my bp was on the high side, I reminded her that I had an aneurysm. You do?? She says! Realizing that it had been two years and not rechecked, she sent me for another CT. Luckily there was no growth! I asked her for a referral to a cardiologist. She didn't think it was necessary, but she finally agreed. That doctor sent me for an echo, which showed a bicuspid valve. I've seen the cardiologist since for my 6 month check (no CT, just an office visit). But I'm concerned that he isn't taking this seriously. He told me no restrictions on exercise (just don't take up weight lifting LOL!) but everything else is normal. Just live your life.  I'm  a woman, 5' tall (and weigh too much).  From all I've read, I think I should see a surgeon. Oh, there is a strong family history--both of my parents had aneurysms. My father's ruptured but they caught it and he survived. My mother had an abdominal that was caught and repaired. My older brother had an abdominal aneurysm at 43. So, I'm worried! I don't want to have surgery but I'm scared of the alternative. Has anyone else had doctors who don't seem to think this is a big deal? Maybe I'm just paranoid? I'd love to hear that I am! Thanks (and sorry this was so long!). 

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  • Posted

    Hello Shannon,

    I'm 63 and had AAA open surgery in May. At the time of my surgery my aneurysm was 6.3 cm. I was given the same advice, no weight lifting, but no other restrictions.

    From what my surgeon told me in general terms, any aneurysm under 5cm is usually just monitored on a regular basis. At 5cm it's time to start thinking about surgery, 5.5cm it's time to get it done. There are other factors that may determine when and what type of surgery.

    My family doctor first detected my aneurysm. Once it was confirmed (by a sonogram) I had one, he sent me to a vascular surgeon to plan next steps.

    In my opinion and based on your family history, I would go see a vascular surgeon who specializes in treating aneurysms.

     

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    • Posted

      Hello, facing this surgery I am 73 4.8 aortic aneurysm, I've leaning to watch and wait... my question is how did your recovrey go? Are you "back to normal"? Pain, etc.. thank you for anything you care to share

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  • Posted

    Hello Shannon, I was diagnosed with a bicuspid valve which created my 5.7cm aortic root aneurysm. My diagnosis was in March, saw a surgeon the next week. Here they like to do surgery when the aneurysm is 4.7 to 5.2 cm. However, my surgeon does not consider me an emergency because my heart function is good, and my oxygen level is also good.

    I did not know I had a bicuspid valve until I was almost 62 Yrs. old. My blood pressure was up and my heart sated racing, and the racing heart was continuous for over an hour. My heart rate would slow down and spike again. Originally they diagnosed me with Afib. It took a third trip to a hospital ER in a larger city before the doctor recognising a heart murmur (that I did not know I had). That's when I was sent to a cardiologist.

    You have to be your own advocate. True, you might not need surgery yet, but I think that should be the decision of the surgeon. My cardiologist sent me to a surgeon as an emergency..and when I saw the surgeon and went back to the cardiologist he told me that the surgeon's have a better grasp of what needs to be done immediately and what can wait, because the surgeon's work with the cardiovascular system so intricately. The surgeon sent me for a couple of extra tests, and he said I would have surgery in the next 4 months or so. That was the first of April. I am still waiting for a date for surgery.

    Honestly, once I had the diagnosis, I didn't think I would live for another 4 months without the surgery. I am VERY pleased to tell you...I was wrong. Here I am.

    The waiting is the hard part. I was told no heavy lifting, and if I feel myself getting short of breath or tired, I am to stop what I am doing and rest. I just went on a family vacation and I know I did more than I should have. My legs and feet were so swollen my skin hurt...but I am home and keeping my feet elevated more, and I actually had to tighten the straps on my shoes this morning because the swelling in my feet has reduces so much. I am so grateful, for so many things. Take each day as a blessing...and remember to just BREATHE. Wishing you all the best in finding a great surgeon for when you need to take that step. Deb

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    Everyone feels EXACTLY the same way when a aneurysm is discovered. They are almost always found during routine testing. Mine was discovered May 2007 4.6cm and followed until my surgical repair May 2016. Yes, the thought is frightening but it's always better to know than not. You never get used to it but you learn to live with it. I prayed that it wouldn't grow and I would never need surgery but although delayed for 9 yrs, I had to face the surgeon. I had surgery at 56yrs old in good health. No valve issues, no high blood pressure or cholesterol or anything else. I could afford to lose about 15 lbs but otherwise good health. I was terrified in the beginning, then I sought all the info I could while praying surgery never became a necessity. My doctor said the same thing. No heavy lifting and slow down on the cardio. Anything that raises the bp should be avoided, at least so I was told. I was monitored every 6 months with no growth until around Jan/Feb 2016. I was then referred to a surgeon. We got to know each other very well prior to the surgery. I was afforded the opportunity to ask a million questions and express my anxiety. May 2016 at 5.8cm, I had surgery. I am glad the surgery is behind me. That's another story..!

    Soooo...it's not you, it's the process! Hope this helps.

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    • Posted

      Hi there. I just got diagnosed with an ascending aortic aneurysm and a bicuspid valve. Aneurysm measures 4.7. Did you make it through the surgery without any new lifelong problems.  I'm scared. 

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    • Posted

      Hello, facing this surgery I am 73 4.8 aortic aneurysm, I've leaning to watch and wait... my question is how did your recovrey go? Are you "back to normal"? Pain, etc.. thank you for anything you care to share

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    • Posted

      My aneurysm was followed from May 2007-May 2016. 56yrs old at surgery. My surgery lasted approx 7hrs, the repair area was large ascending also.. I try not to call them problems so I call them glitches..lol. Post surgery, I've had physical therapy for my chest & arms. The right side of my chest still hurts deep inside. Dr says it's possibly muscular, scar tissue or sternum issue. Any of these would require additional surgery so..no thank you, I'll endure, hopefully it will get better with time. My arms suddenly start to ache and feel weak seemingly out of nowhere, therapy...hmmm, can't say it helped but I guess it didn't hurt. I was told this is common problem because of the position your arms are in during the surgery and how long your surgery last. Also, I have sudden onset of dizziness and my incision still hurts.. None of my "glitches" are life threatening and HOPEFULLY will go away with time. It's a nuisance at best but scary most of the time because I've gotten dizzy while driving or had my arm start hurting and had to get off the road asap! Usually its sudden, no warning. So pain and I have a love-hate relationship. I've been told that men seem to do better with pain level and healing because breasts makes healing different..hope this helps!

      Happy to answer any questions you have...

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    • Posted

      Post surgery, I've had physical therapy to alleviate chest and arm pain. Can't say it helped but it didn't add to the problems. My incision still hurts and deep inside the right side of my chest. Docs theory is scar tissue, strenum issue (fratured or wires) or slow healing muscle..hmmm. My arms suddenly feel weak and ache. It stops whatever I'm doing at the time. I'm told this is (common) because of how the arms are positioned during surgery. I also suffer from sudden onset dizziness. I didn't have any of these issues prior to surgery. Happy to report, docs say they are not life threatening and "should" go away with time. I'm hopeful because of my fear of these things occurring, it makes me a little more dependent on having someone with me when I go in public.. I hope this helps. I'll answer any questions that I can so feel free to ask..

      All the best to you!!

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    • Posted

      Oh my goodness...YES!

      I expressed my fears of waking up with a respirator prior to surgery. It was explained that it can not be removed until the patient is awake and can breathe on their own. Mine was removed immediately upon me waking up. I had to attempt to say my name and then they removed it!!

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      I think if you express how you feel about it to your doctors and the entire surgical team, they will take special care to take it out immediately if there's no complications. I made sure my family was aware as well. They said before my eyes opened, I was trying to remove it..lol!

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    • Posted

      Thank you for your response. So still have some "issues" a year later... What was the size? Did you have valve replacement as well? I will need that done. I did not know about the respiratory issue, why are some concerned. 

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    • Posted

      Hi Larry this is Ron. I have a bicuspid valve but they said it is functioning well. I don't know if they will replace it anyway since they will be in there. I haven't discussed it yet. I'm at 4.7 and they want to wait. I have an appointment with genetics to get the results of my DNA test to see if I have some syndrome that made the bicuspid valve on September 11th. I am afraid of waking up on a respirator. 

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    • Posted

      I was still on the anesthesia, groggy and pain lessen so not really. But, you feel it being pulled out and I was just thankful to have it removed immediately. It was quick.
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    • Posted

      I did not need a valve replacement. Although, it was discussed just incase, once the doctors were inside and discovered I needed one. You are placed on a respirator for the surgery and they can't remove it until you are awake and can breathe on your own. When you wake up with it down your throat, you immediately panic because its hard to swallow or breathe. You gey an automatic "gag" sensation. My aneurysm was 5.8 cm when I had surgery May 2016.

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