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Enlarged Thoracic Aorta -

Posted , 6 users are following.

dresc0
dresc0

Hi Everyone,

2 months ago I was tested to see if I had any issues with my aorta due to a family history or Abdominal Aortic Aneurysms and Aortic Dissection.  I had the general testing and screening for this, an ultrasound of the thoracic aorta.  After this screening I was advised that I have an enlarged aorta.  This was diagnosed by my cardiologist.  So my life was turned upside down at this point.  I am a healthy 31year old male. 

I was awaiting to see a vascular consultant as I have varicose veins in my right leg in which I am getting checked to have removed due to complications with these.  The Vascular surgeon was asked to check the rest of my Aorta to ensure there were no other underlying issues.  I am currently waiting on this scan to be completed.  1 week later I got a call from the Vascular surgeon who now wants to send me for an MRI scan as he is confident that I do not have an enlarged aorta, but they are willing to perform an MRI to confirm this.  

I am all over the place now confused and unsure on who to believe or what tests to believe.  Does anyone know how accurate an Ultrasound is as this is the preferred way of screening for aneurysms, if they are not accurate why are they being used.  How accurate is an MRI scan?  I have tried searching the internet and I have found some medical reports and to be honest I am not a medical examiner so very difficult to understand.  

I don't know what to do now, what to believe, who to trust.  The family history shows a destinctive history, Grandfather and Uncle died from Abdominal Aortic Aneurysms, given they had high blood pressure there is still a history, my dad survived an Aortic Dissection that ruptured, he is a fit and healthy man no history of high blood pressure.  So with this history I had to be checked, but the vascular surgeon says I am very low risk or any indication this is all linked or any family genetic link.

Thanks for taking the time to read my post and any answers or help would be greatly appreciated. 

1 like, 24 replies

24 Replies

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  • Gate_Keeper
    Gate_Keeper dresc0

    Posted

    Welcome to the group. It's quite a shock to get the news and it is going to take you a while to get your head around it and accept it for what it is. If you do get a confirmed diagnosis, monitoring and treatment is the way ahead. It's a second chance. If your given the all clear, you'll be happy. The full duplex scan is great for seeing the blood flow live and a skilled technician can look at your vascular system 360 degrees. The MRI/MRA is just as accurate looking at the blood vessels and surrounding tissues in 3D and in colour. I am in the UK and recently had both. I have 3 aneurysms. One was successfully repaired in December 2015. The others: A knee one is small at 1.3cm and a triple AAA is 4.8cm. I keep fit, go walking and swimming,  but avoid risky sports like rugby and scuba over 20 meters deep. In essence life goes on. I take a low dose of BP tablet to take the pressure off the aneurysms. I don't smoke or take recreational drugs.

    • dresc0
      dresc0 Gate_Keeper

      Posted

      Thank you for your reply.  Yeah it is a lot to get your head round.  I hope to have answers soon, and hopefully it is good news.  
  • 68survivor
    68survivor dresc0

    Posted

    Hello there. Firstly you are on the right track getting everything checked out and enquiring about your individual risks. Ultrasound is good to within 1mm on diameters for AAA. I have been monitored since discovery in 1997 (3.5cm) and currently (marvellously) it is on hold for the last two years at 6.1cm. (At 6.5 cm and over you are not allowed to drive). My Vascuar Surgeon turned me down for intervention surgically in 2014 owing to a very poor risk profile. An MRI scan will give a clearer, wider view including the blood supply to your Kidneys, which can sometimes be a complicating factor. Best wishes for a good outcome.
    • dresc0
      dresc0 68survivor

      Posted

      Thank you for the reply.  That is good it has been on hold for the last 2 years.  What do they mean very poor risk profile?  With the size of the aneurysm would it not be best to operate?  Suppose we all put our trust in our consultants.  
    • 68survivor
      68survivor dresc0

      Posted

      We have to trust in their experience. My poor risk profile is the resultant of a Cardiovascular 'history' going back many years, that includes a couple of previous MIs and subsequent CABG. Now also on my second ICD, so I really have had excellent NHS support. One outcome of all this previous 'history' is the inevitability of Heart Failure, which I have had since 2009, hence the lide saving ICD, which is an implant that coordinates my heart rhythmn and rate. Who knows, it might even be down to the hydrodynamic tailoff in Heart Failure that my AAA no longer has the 'pressure' required to expand further. Funny old world!

  • DebW
    DebW dresc0

    Posted

    Most of us understand the anxiety you are experiencing. At 61, I had no symptoms until early this year. I have an aortic root aneurysm and a bicuspid valve. I understand my bicuspid valve runs in families. My father was 61 when he passed away, his mom was 61, his brother was 62, and his sister was 58. He had only one sister that lived into her 70's. My children will be checked for the same problem, and my siblings have already been checked. I am the only one of 4 children to have the bicuspid valve. Hopefully my children are clear, too.

    I am waiting for a surgery date as my aneurysm was 5.7cm when it was finally was diagnosed.

    I have had an Echocardiograph, an MRI, a CT (CAT) scan, an angiogram, wore heart monitors, and have had my pre-op done, which includes blood tests. I did not have to do any exercise (walking on treadmill, etc).

    The Echo is what identified my bicuspid valve and the aneurysm. I undertand the CT scan was to ensure there wasn't any further aneurysms in my heart, or other problems that may occur during surgery, the angiogram was done to see if bypass surgery was also required when they replace my valve and my aorta (it was clear - no bypass needed smile . The MRI - I am participating in a couple of different research projects, so the MRI was to see my brain function before surgery, and to see what impact the surgery has on my brain activity after the surgery.

    Everyone is different, and you may just be monitored for a while. Just remember, the more tests they do request, the better they are able to see exactly what is going on in your heart, valves, and arteries.

    Until surgery, I have been advised - no lifting - no stress (right...the waiting is so stressful) - and not to get too tired or breathless. If I get breathless at all I am to stop what I am doing and rest.

    I am getting ready to take a family vacation (life still goes on, thankfully). We will be in a remote area, and all of my kids, grandkids, and in-laws will be with us. We will be celebrating life - a 60th Wedding Anniversary, a 50th Birthday, a 40th Birthday, and a 5 Wedding Anniversary. I am excited and apprehensive, but there will be so much joy and love to be shared over this vacation that I am sure it will help to keep my apprehension down.

    I hope this helps reduce your anxiety.

     

    • dresc0
      dresc0 DebW

      Posted

      Hi, 

      That is good you are waiting for the surgery, I hope you get this done soon.   My grandfather died at the age of 62 my uncle 42, both with a AAA.  My dads dissection ruptured at the age of 55, December last year.  He luckily survived, they managed to operate and save his life.  

      Tests that I have had so far are an ultrasound, BP Monitor and ECG monitor, both monitors came back fine.  I did have the stress test on the treadmill, my heart rate went from 70 bpm to 170bpm in 10mins on the treadmill which they said was okay but needs to be brought down.  No medication has been given to control any BP issues.  I was advised not to get stressed and only light exercising also.  I played regular football and enjoyed it, this certainly reduced any stress that I had, it was my time away from everything.  So I have been looking for something to fill that void now to keep my stress levels down.  

      However, if my latest results come back all clear, I can go back to football, but I will always have this uncertainty now.  Even though you are given the all clear, how can they be sure. I suppose I won't fully know until I have the MRI. 

      Enjoy your vacation and congratulations on all the milestones.

  • xtine
    xtine dresc0

    Posted

    Dear dresco - just joined, just seen this. And that is so confusing that the cardiologist said that echocardiogram? showed enlarged aorta and vascular consultant disagreed. I hope the vascular one was right.
    • dresc0
      dresc0 xtine

      Posted

      Hi Xtine, 

      I hope that the vascular surgeon suspicions are right also.  smile thank you

  • dresc0
    dresc0

    Posted

    Hello All, 

    I have now been properly diagnosed, with just a few genetic tests needing done.  They have confirmed that I have an Ascending Aortic Aneurysm measuring at 4cm.  I am 32 years old, scared is an understatement as this is so close to my heart.  

    I have to now discuss what my treatment plan is going to be.  Has anyone ever heard or chosen to have elective surgery?  Can we ask to have the surgery early?  I don't know how I will live knowing there is a ticking time bomb in me.  I am young enough that I feel would recover very well.  

    Anyone know of any reading material, live stories of people life after surgery? 

    Thank you in advance.

    • xtine
      xtine dresc0

      Posted

      Are you in the UK? If you are they have a protocol of no surgery till 5.5cms unless it is symptomatic or growing fast - even then don't think likely intil 5cm. I am in the dark too. NICE and BUPA say this. I'd like more information

    • dresc0
      dresc0 xtine

      Posted

      Hi, 

      Yeah I am in the UK.  I thought this would be the case, but it is a bit mental that they wait for it to grow larger, more complications could arise while waiting.  I will being going to my cardiologist and asking many questions, do not want to leave the appointment with any doubt in what my outlook is. 

      Thanks xtine

    • dresc0
      dresc0 xtine

      Posted

      Hi, 

      Currently I am being treated in Greenock, Scotland.  I am hoping to be transferred to one of the more advanced hopsitals in Glasgow.  I have heard a lot of good things about the Liverpool hopsital, there is one of the best cardiac surgeons based there.  Because of where my aneurysm is, my vascular surgeon is unable to continue monitoring me it has to be passed to a cardiologist.   There are a couple of excellent cardiac surgeons based at Jubilee Hospital in Clydebank and also and the Queen Elizabeth, so I hope to be transferred to either of these. 

      Thank you for the link I will take a read at this.  There is just so much uncertainty and questions that need answered.  But hopefully on the right road now.  Hope you are getting the time and treatment that is required to ensure you are properly examined. 

    • xtine
      xtine dresc0

      Posted

      Hi mine is just before the arch...apparently quite unusual - usually near the root. where is yours?
    • dresc0
      dresc0 xtine

      Posted

      Hi mine is the same root and valve are fine and before the aortic arch.  
    • dresc0
      dresc0

      Posted

      Have they discussed any medication, treatment, or anything with you?  How is your blood pressure normally? 
    • xtine
      xtine dresc0

      Posted

      I bought my own blood pressure monitor which links to my iphone it also has a very compfortable cuff by Omron - about £60 fantastic. I take my BP most days - it averages at 119/76 so hypertension is not the cause. I have a very good summary of the condition from Stanford - will send. My GP acted on that. I have had better treatment from GP than hospital. It was he that instigated the genetic testing at the hospital..I'll send this then the Stanford thing - it is very interesting on the difference of causes depending where the anurysm (dilation, swelling) is. High BP not as relevant in ascending...

    • dresc0
      dresc0 xtine

      Posted

      Thank you for the information.  My blood pressure is stable also, so have no signs of hypertension.  A blood pressure monitor is something that I need to invest in so I can keep a diary of this and share with my cardiologist.  It was my vascular surgeon that has pushed everything for me, I am currently waiting on the genetics testing also.  The clinical genetics department will also help me on how to live with this before and after surgery if required.  
    • xtine
      xtine dresc0

      Posted

      The geneticist I saw was great - it was she that gave me a copy of my MRI ...she interviewed me for about an hour...then It was agreed that I should have a full genetic testing done - sent to have the blood taken signed loads of forms giving persmissionsand have been told it will be four months before the results of the test will be known - looking for about 25 genes. Still might not find anything. It was my GP who got the gene testing organised - not the cardiologists at the genetic heart conditions unit!  My GP also had me tested for syphilis - he said he would if it were him - it was clear. There is a form of syphilis which lies dormant no symptoms and then shows up as an ascending anuerysm. 

      My BP monitor is an Omron Intellisense and its great. It makes you feel in control and assures you that your heart is functioning well - or not. I'll send the link to it. it records everything on your smartphone and the app is easy to use.

    • xtine
      xtine

      Posted

      Omron M7 Intelli IT 360 Degree Accuracy Connected Upper Arm Blood Pressure Monitorby Omron

      4.5 out of 5 stars 197 customer reviews

      | 24 answered questionsPrice: £69.14 & FREE Delivery in the UK. Delivery Details

       

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