Ive been diagnosed with a 4 9cm decending aneurysm right next to my heart after suffering alot of pa

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Since they say you shouldn't feel your aneurysm further test found i have many clots in my lungs and to top it if ive now been diagnosed with a type of leukemia! Oh and hve suffered crohns disease for many years. My concern is that last appointment my surgeon ( who didnt have my cat scan report with him) stated they won't operate unless it reaches 5 5cm unless i deteriorate more but every scan has a different size from 4 .9 to 4.5 then last one 4.3. I should mention i had an angiogram to check my heart but suffered a cardiac arrest ( which uve been told can happen as the cable blocked the blood flow to my heart ) considering i was awake and it was horrendous they cant pay me enough TO EVA get another one! My question is can they shrink and also last months app the surgeon said he wouldnt see me for 6 months then do another cat scan to check on it but just today i got another app to see then this month ! So its only been 4 weeks so now im terribly worried why?? Apparently the surgery is major ( i thought it was just stint surgery like the other aneurysms but my type is alot rearer and alot more serious. Can they shrink and should i be worried that he wants to see me in 1 month instead of 6 months like he originally told me? Specifically since last report said it was 4.3 when first report said 4.9??

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  • Posted

    Dear linni42275 - that is a lot to bear! Where are you being treated? It is hard to work out how significatn the monthly call is when the treatment you have been getting has not been very consistent. I have to keep on at my hospital (UK) as they cancel and forget and communication between departments is bad. Let us know more.
  • Posted

    I’m so sorry for your health problems! 

    I was diagnosed at 5.3 cm and told to come back in four months. I did a lot of research and made appointments with two more surgeons. The third agreed to do my surgery right away. Here is one article I showed him, which he was aware of. 

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

    And: 

    Volume 116, Issue 10, September 2007, Pages 1120-1127

    Aortic diameter =5.5 cm is not a good predictor of type A aortic dissection: Observations from the International Registry of Acute Aortic Dissection (IRAD)(Article)

    Pape, L.A., Tsai, T.T., Isselbacher, E.M., Oh, J.K., O'Gara, P.T., Evangelista, A., Fattori, R., Meinhardt, G., Trimarchi, S., Bossone, E., Suzuki, T., Cooper, J.V., Froehlich, J.B., Nienaber, C.A., Eagle, K.A. View Correspondence (jump link)

    aUniversity of Massachusetts Medical School, Worcester, MA, United States

    bUniversity of Michigan, Ann Arbor, MI, United States

    cMassachusetts General Hospital, Boston, MA, United States

    View additional affiliations  

    Abstract

    BACKGROUND - Studies of aortic aneurysm patients have shown that the risk of rupture increases with aortic size. However, few studies of acute aortic dissection patients and aortic size exist. We used data from our registry of acute aortic dissection patients to better understand the relationship between aortic diameter and type A dissection. METHODS AND RESULTS - We examined 591 type A dissection patients enrolled in the International Registry of Acute Aortic Dissection between 1996 and 2005 (mean age, 60.8 years). Maximum aortic diameters averaged 5.3 cm; 349 (59%) patients had aortic diameters <5.5 cm and 229 (40%) patients had aortic diameters <5.0 cm. Independent predictors of dissection at smaller diameters (<5.5 cm) included a history of hypertension (odds ratio, 2.17; 95% confidence interval, 1.03 to 4.57; P=0.04), radiating pain (odds ratio, 2.08; 95% confidence interval, 1.08 to 4.0; P=0.03), and increasing age (odds ratio, 1.03; 95% confidence interval, 1.00 to 1.05; P=0.03). Marfan syndrome patients were more likely to dissect at larger diameters (odds ratio, 14.3; 95% confidence interval, 2.7 to 100; P=0.002). Mortality (27% of patients) was not related to aortic size. CONCLUSIONS - The majority of patients with acute type A acute aortic dissection present with aortic diameters <5.5 cm and thus do not fall within current guidelines for elective aneurysm surgery. Methods other than size measurement of the ascending aorta are needed to identify patients at risk for dissection. © 2007 American Heart Association, Inc.

    I also found another study on what triggers aneurysm rupture, and the two major causes were exercise and emotional stress. The surgeons must know that the diagnosis alone causes some pretty extreme stress. I was having some twinges of pain where my aneurysm was, so while doctors may believe they cannot be felt, I know I felt mine. The pain never occurred again after my surgery. 

    My advice is to schedule consults with a couple of aneurysm experts. You need a surgeon who operates on them frequently...not a jack of all trades surgeon. Take the above article with you and explain the stress you are under. However, you are still under 5.0, so you may not find a surgeon willing to operate at this point, not quite yet. I was told my risk of rupture was low, but emotionally I just couldn’t deal with the knowledge that I could die at any time. I’m driving across the California and Arizona deserts frequently, and a rupture on the road meant death.  The surgery itself carries some risk and the general thought is that they want the risk of rupture to outweigh the risk of the surgery.  Unfortunately, no one really knows when that is. My faith in God is really what gave me the strength to elect to have my surgery.  It was a huge relief once it was done. 

    What can be done about the clots, and are you in treatment for the leukemia?

  • Posted

    Sorry for all the issues. As it stands, my aneurysm is the only thing, at least I am aware of, and it is plenty to have to bear. I hope you get some peace.

    Aneurysms cannot, by definition, shrink. They can show up differently on different imaging types, and even different imaging machines of the same type. Also, they can be read an interpreted differently by different radiologists and specialists. While the surgery is major, it had a huge success rate these days, so try not to worry about it too much.

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