Aneurysms, should wait for surgery?

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So my dad has 2 aneurysms, one on each iliac bifucation. I've done research on dissection, and different approaches for aneurysms at this location. His are approximately at 4.5mm (actually extends into the aorta slightly) and 3.5mm. He was referred to USC, where the surgeon stated that he would like to wait several months to see if they aneurysms have grown.

Now I understand that there is a measurement of around 5mm of more, that elects the patient for surgery.

But seeing as they are almost 5mm, isn't it slightly counterproductive to wait for them to GROW? And if they haven't grown within the next several months, what do you suspect his next move is, watchful waiting? Surgery??

I understand possible complications of the surgery can be serious, but isn't the mortality rate of hemmorhage worse?

Wouldn't it be best (in a sense) to get them while they are smaller? MaKing an already tedious surgery less difficult?

Any and all thoughts and advice are much appreciated!

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  • Posted

    That size is not that large, when it comes to aneurysms. I am at 4.8cm root and a 4.6 ascending and was diagnosed last summer. I am on the watch and wait protocol, I got scanned at six months with no change, now I get scanned once a year. It will not be operated on until it grows to over 5cm. The risk of surgery is higher that risk of rupture until it grows to that point. I have had my aneurysms for seven years, with a typical growth of about 1mm per year. That is fairly normal. It does depend on the heredity, and the reason for the aneurysm. I would strongly suggest genetic testing, to rule out connective tissue disorders. 

    I was told the risk of my anuerysm rupturing is probably less than 1%. The risk of a serious surgical complication is 3 to 5%. Until the math evens out, they do not like to operate. Many times surgeons wait until closer to 5.5cm. Each case is very unique though.

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    • Posted

      Thank you SO MUCH for your input James! When you stated "The risk of surgery is higher that risk of rupture until it grows to that point (5.5cm)" it was relieving to hear, but I also know each case is unique like you said!

      I am sorry to hear you have this diagnosis too though, it really stresses my father, he rarely gets upset and this diagnosis really seems scares him, so I understand it may be hard for you too, and I think it's really great you are so well informed on your situation and keep up on your disease progression!

      My grandfather actually had a AAA too, which was actually something like 12 or 13.5 cm (something close to that)! So yeah, I really like that idea about genetic testing, I will look into what sort of tests are available.

      I hope the very best for you and thanks again for the great input! smile

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  • Posted

    Oh yeah, if you have a family history, not only should he get genetic testing, but it is recommended that first degree relatives (which would include you) also do so, as well as get a scan to make sure nothing untoward is going on. With your family history, I would definitely get yourself checked as well.

    Not to add fuel to the fire, but given genetic connective tissue disorders, they operate sooner, sometimes much sooner depending on the disorder. The big one every doctor seems to know about is Marfan Syndrome, but there are a good many others which seem less studied. Mine is not, apparently, genetic. My test was negative for any known genetic markers for aorta disease, and I have no familial history at all. I seem to be a fluke, based on my bad Bicuspid aortic valve. 

    As to the anxiety of the diagnosis, I can relate. But the truth is, after the first month or two, which was hellish, I got used to it. My anxiety is more or less gone now, and I have learned to really live in the moment. In some ways, I am a happier person now, living with this, than I was before diagnosis. 

    If you use Facebook, I can point you in the direction of a phenomenal support group there for patients and their families. It has helped me immeasurably, and is a supremely positive place with people on both sides of this diagnosis, from the newly diagnosed, to those like me watching and waiting, those who are about to have surgery, and those who had their surgery, in some cases, decades ago and all are very helpful and willing to share.

    This is not a death sentence, especially when caught before dissection, which your father has had the good fortune to have done. It is scary, to be sure, but medically speaking, it is definitely not the worst thing one can face.  

    Let me know if you want a link to the facebook group and I will pass it along.They have a lot more information than I would be able to provide, and some solid experience, probably someone with your father's exact kind of anuerysm.

    Also, do you happen to be in the United States? If so, I would recommend a consult with the Cleveland Clinic. Even if your father's insurance does not cover there, you can get a second opinion from them for $500. They are, bar none, the best in the world at dealing with this problem. They do it thousands of times a year there, and have the foremost cardio-thoracic surgeons in this field. 

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  • Posted

    Oh yeah, if you have a family history, not only should he get genetic testing, but it is recommended that first degree relatives (which would include you) also do so, as well as get a scan to make sure nothing untoward is going on. With your family history, I would definitely get yourself checked as well.

    Not to add fuel to the fire, but given genetic connective tissue disorders, they operate sooner, sometimes much sooner depending on the disorder. The big one every doctor seems to know about is Marfan Syndrome, but there are a good many others which seem less studied. Mine is not, apparently, genetic. My test was negative for any known genetic markers for aorta disease, and I have no familial history at all. I seem to be a fluke, based on my bad Bicuspid aortic valve. 

    As to the anxiety of the diagnosis, I can relate. But the truth is, after the first month or two, which was hellish, I got used to it. My anxiety is more or less gone now, and I have learned to really live in the moment. In some ways, I am a happier person now, living with this, than I was before diagnosis. 

    If you use Facebook, I can point you in the direction of a phenomenal support group there for patients and their families. It has helped me immeasurably, and is a supremely positive place with people on both sides of this diagnosis, from the newly diagnosed, to those like me watching and waiting, those who are about to have surgery, and those who had their surgery, in some cases, decades ago and all are very helpful and willing to share.

    This is not a death sentence, especially when caught before dissection, which your father has had the good fortune to have done. It is scary, to be sure, but medically speaking, it is definitely not the worst thing one can face.  

    Let me know if you want a link to the facebook group and I will pass it along.They have a lot more information than I would be able to provide, and some solid experience, probably someone with your father's exact kind of anuerysm.

    Also, do you happen to be in the United States? If so, I would recommend a consult with the Cleveland Clinic. Even if your father's insurance does not cover there, you can get a second opinion from them for $500. They are, bar none, the best in the world at dealing with this problem. They do it thousands of times a year there, and have the foremost cardio-thoracic surgeons in this field. 

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    • Posted

      Hi James--just sent you a message but posting here as well--could you please provide the info on the FB group you mentioned? My husband is dealing with this now and it would be very helpful to find a forum. Thanks! C
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    • Posted

      Oh noway, thank you for that information, that facebook page does sound interesting and helpful. I am really glad to hear any anxiety it might have caused you has decreased, not only because anxiety is horrible, but because of hypertension sad

      I think it's interesting that they might concider surgery earlier if it's a conective tissue disorder, definitely something I will ask the surgeon!

      Where is the cleavland clinic?? We are in California, I will look into that as well! I do have a Facebook I can message you, thank you for all your help! smile

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  • Posted

    Hi Tori - I was diagnosed in November last year with an AA at 5.1 - it depends who you talk to regarding when to have surgery - my advice is to wait 6 months to see if it is growing and the research that I have done supports this advice - keeping a monitor on it a sounds advice and also they should be looking for reduce blood pressure if its higher than normal - there are people who have been diagnosed at over 5 and never had surgery and went on to live for decades - once you get your head around it, its OK - it is however like walking around with a time bomb in your chest - Kevin Helliker is a good source of information if you want to research further

    Good luck to you and your Dad

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    • Posted

      Oh man sad I am sorry to hear you have a AAA too, was blood pressure a contributing factor for you? Did you end up having a surgery yet or are you guys monitoring it as well? It's good to hear your research support the advice the doctor gave my father, I tried looking into it and the prognosis for his type and waiting instead of surgery, and had no luck, so thanks! smile

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    • Posted

      No worries - yes I am just waiting now to have my next scan in a couple of weeks and then I see my cardio at the end of May - we are still scuba diving and I am still walking 7 km every day - had a few chest pains from time to time and checked in a few times but no evidence of any dissection - if you want to get an idea of what your Dad is going through - read this - your Dad may care to read it also

      http://online.wsj.com/public/resources/documents/hb3.htm

       

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  • Posted

    Anyone have an update on KEVIN HELLIKER? I know he had an Aortic Aneurysm 15 years ago, but did he end up getting surgery or is he still in the watch and wait stage? I've check online and even his Facebook page but no mention on the status on his Aneurysm. 

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