Diagnosed with Aortic Root Aneurysm

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Hello everyone, I have been recently diagnosed with an aortic root aneurysm that is 5.7 cm - I'm feeling like a ticking time bomb sad

I am grateful that I was able to read the comments in this section where some of you indicated that your aneurysm was larger, and you seem to be doing well. Thank you for that.

I was told that they like to do surgery when the aneurysm is 4.7 to 5.1 cm so when they told me mine was 5.7 cm I was terrified it would rupture any moment. That was March 31st. 

I have seen a surgeon and have been advised I will require open heart surgery - minimal invasive surgery is not an option for me. He is having a CT scan and an angiogram done which will be in the next 2 months. He indicated surgery would be 4 - 5 months after that. 

All this started from a trip to the emergency care due to racing heart. It took 3 trips and 3 different doctors before one hear a murmur and connected me to a cardiologist.

I am 61 years young wink and am pretty healthy. I am obese, have always struggled with my weight, and I have high blood pressure which has probably saved my life (I think my blood pressure had been peaking and that may have been what made my heart race - the doctor has added meds to what I was taking).

My question - is there anyone with an aortic root aneurysm that is 5.7 cm or larger. Currently, or that has already repaired?

I look forward to joining in some discussions.

Have an amazing day, everyone!

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  • Posted

    I had a type a dissection 11months ago i had a aneurysm at my heart 5cm it dissected to my legs i now have a mechanical valve and new arch.Do not lift anything heavy or get stressed cause it can dissect.
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    • Posted

      Thanks Dustinthewind, There are so many terms I am not familiar with. I am not sure what a type a dissection is, but is sounds scary.

      I am avoiding heavy lifting, and try to keep as calm and collected as I can. I am still working (a desk job) and so far I don't seem to be getting overly stressed at work (it just isn't worth it).

      I hope you are feeling much better now, and wish you all the best.

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  • Posted

    Have aortic root at 4.6. I am small so that seems to be am indicator for earlier surgery. I am currently looking at my suitability for the relatively new but very successful PEARS procedure. Personalised existent for aortic repair is what it stands for. It's carried out in the Royal Brompton hospital and is for ascending and root aneurysms. It's still open chest but not open heart. You might like to check it out Debi.

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    • Posted

      Thank you Noreen. I will check it out. I didn't know there was a difference between open chest and open heart. Now I have more research to do. 

      I am in Canada, so procedures her may be a little different. I am just glad I was able to join this group. There aren't many support groups out there - and I haven't found any in Canada at all. 

      So, all the information you have given me is a blessing. Thank you! Deb

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    • Posted

      Sorry so late to reply to your question Deb W. No I don't have Martins, I have a bicuspid valve and a small vsd (hole in ventricle wall). The valve is working well so I will keep that. The vsd will hopefully be repaired in the cat lab before Pears surgery. It's a stent on the outside of the aorta so there is no need to open the heart or slow down circulation to brain. It takes about 2 to 3.5 hours as opposed to 6 or 8. Recovery is much quicker. About 95 have had the procedure now and all doing well.

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  • Posted

    Deb-

    Did they tell you why so long a wait? 4-5 months seems like a long time. In terms of dissection risk, yours is elevated but not drastically so. Surprisingly, there's actually not a ton of difference in dissection rates between those with >4.0 cm and >5.0 cm....6.0 cm is really when the risk factors increases dramatically.

    In the meantime as others have stated, follow your doctor's instructions: Keep your BP controlled, take your meds, no heavy lifting or very strenuous excercise. I would educate yourself on the possible symptoms of a dissection, and have "game plan" for yourself and those around you if you start to present with these symptoms. If God Forbid your aorta dissects, time will be of the essence to get to the nearest ER. An alert bracelet may not be a bad idea (so ppl don't think you're having a heart attack). Maybe avoid any unneccesary travel...

    Also since the surgery is still awhile away, try to eat a measured diet and follow a moderate intensity exercise routine. Losing weight b4 the suregery will help reduce risk factors during the surgery, and lessen your recovery time.

    One other thing...this article helped me a lot in explaining the various risk factors. Aneurysm size is important, but by far the only factor. Valve issues; symptomatic vs asympotmatic; aneurysm rate of growth; relative size; lifestyle; prolonged elevated bp; etc. are all factor into when/how to do the surgery.

    http://www.valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx

    Anyway, I will be praying for you, and praying for a sucessful outcome. Good luck!

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    • Posted

      Thank you mide14661! I will check out the link you provided.

      The surgeon told me that I am not an emergency. I did tell him that although he didn't think I was an emergency, I sure did smile

      I haven't really told many people about what is going on with me. I work on contract and am worried that my employer will be worried I can't do the work. One employer I have told. The other I have not, but I am already training my replacement in that job (and it's ok, things happen for a reason, right?). She'll do well once she's trained a little more.

      Now that you made that comment though, maybe I'll spread the word. I just didn't want my friends worrying about me when there is really nothing they can do. 

      I have a bicuspid valve, and that will be replaced when they replace my aorta. I am hoping a bypass won't be necessary.

      I am actually gaining weight. I had lost 62 lbs. and have kept it of (within about 12lbs up and down) for more than 5 years. I still needed to lose more, but now I don't think that will happen until I can get moving a little more. I get out of breath very easily and at this point can't even make it to the corner and back without being breathless, so exercise is a little difficult.

      Thank you for the tips. I will keep trying to improve my diet, and walk very short distances more times a day.

      I really apreciate your feedback. Thank you. Deb

       

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  • Posted

    My mom had an thoracic aortic aneurysm that was 6.3cm when she had her surgery.
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    • Posted

      Thanks for that, Timothy40679. How was her recovery? How long ago was it? Can you tell me how old she was?

      There have been very few people I have connected with that has had an aneurysm that large. I hope she is doing well.

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    • Posted

      She was around 75 I think. She recovered in 3-4 months from the surgery and is doing well ~5 years later.

      I had a 5.3cm aneurysm in my aortic root that we didn't know about until it dissected. I had emergency open heart surgery to fix the worst part of the dissection. This was about six months ago. My recovery went well and I had no pain at all after surgery. I was 58 when i had my dissection.

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    • Posted

      I think you have been very fortunate. Do you know what caused the aneurysm to dissect? I was under the understanding that unless you were basically at the hosptial, a dissection would be fatal.

      I am so glad your mom has done so well. 

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    • Posted

      I don't know what caused my aneursym to dissect. My mom's thoracic aortic aneursym was larger than mine when she had surgery and her's didn't dissect. They knew about her aneursysm and were watching it. We didn't know about mine until it dissected. Maybe that's why I dissected and she did not?

      My blood pressure had been creeping up over the past ten years. It had been up to 140/100 and my doctor put me on a bp medicine to help keep it more normal. Maybe the bp med helped keep me alive?

      I'm a thin guy and have always worked out at the gym with heavy weights, trying to gain muscle (if I had only been satisfied with the body I had). I didn't gain much muscle but I lifted hard at the gym. Maybe decades of lifting heavy weights at the gym contributed to my aneursysm/dissection? I have read that heavy weight lifting can contribute to the development of aneursyms.

      It was also suggested that I could have a genetic disease of some sort that could make me more likely to develop an aneursysm (I have read that they can run in families) but I have not had any genetic testing done (not much point now, after the fact).

      I don't really know why I'm alive. One thing is that my aorta didn't rupture. John RItter and Alan Thicke both had a dissection and then the aorta ruptured. Ritter was misdiagnosed and they sent him home where he got worse. If he had been diagnosed correctly he might still be here today. 

      To quote from "Star Trek":

      Spock: Random chance seems to have operated in our favor.

      Dr. McCoy: In plain non-Vulcan English, we've been lucky.

      Spock: I believe I said that, Doctor.

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    • Posted

      ...a Trekkie, too! smile

      The cardiologist told me my bicuspid valve was devloped while still in the womb. My siblings and my kids are getting checked. 

      I have been told no stress, no lifting more than a few pounds, and no exercise that makes me breathless.

      I have been obese since highschool. Always a struggle, so that is certainly making my heart work harder. I have managed to put on 14 of the 60 lbs I had lost. Part of that is fluid, the other part is stress eating I'm sure.

      Do you have children? It might be worth investigating  whether or not it is a genetic problem. 

      Enjoy your evening. 

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    • Posted

      I have a cousin who had open heart surgery for (I believe) a bicuspid valve probably four decades ago. My mom and two of my aunts on her side of the family had to have heart valve replacements and I have a sister with a heart murmur. Botg aunts died from heart-related issues. Great genetics, huh? sad

      My cardiothoracic surgeon has given me pretty much the same advice you got: no more weight lifting, no exercise that makes me breathless.

      I have no.children but my siblings have had CT scans to check for aneurysms. Their children, I'm told, are going to have it done too.

      I may have genetic testing done if it could help my sibs/nieces/nephews.

      I read your comment about exercise to mide14661. After my surgery, after I was able to go home, I was supposed to walk daily. The first month or two i could barely walk a couple of blocks before my right leg hurt and that foot went numb (the dissection affected the circulation to my right leg). I kept at it over the months and improved to the point where i can walk a mile or more without leg pain or my foot going numb, so if your doctors approve, keep walking as far as you feel comfortable going and try to add a little more distance every so often. I added really short distance - to the next driveway after our usual stopping point, halfway into the next block, etc. Eventually you're walking further than you ever thought you would. Don't let yourself get out of breath, though (unless your doctors approve). If you feel out of breath, rest a bit, then push on a bit more.

      Live long and prosper! smile

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