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Diagnosed with 5cm Aneurysm near heart

Posted , 21 users are following.

kristi18883
kristi18883

Hello everyone, I'm new here and just want some advice.

Two day before Christmas, I was diagnosed with a 5cm aneursym near my heart and told, "If it's not repaired, it will burst and you will die". The NHS cardiologist had only just seen my file and met me, 5 minute before that.  He also stated that if my valve is bicuspid, they need to replace it and repair the aneursysm now. So I've been waiting for either a tube down my throat, or an MRI to get a clearer picture. So far, I've only received a phone call, from that Cardilogist, on New Years eve, saying the Tube test should be end of Jan, beginng of March, but the MRI will be sceduled in the interum. 

I'm originally from America, where my possible bicuspid valve was monitored yearly with echos. I've been here in the UK just over 4 years and only ONCE did a Dr. so much as listen to my heart, until they thought I had a TIA. 

Is this typical of the NHS? Give you bad news, then make you wait?? Some say I need to go to my GP and see if they can refer me to another place to get the tests done...others say, play up your symptoms. I am somewhat symptomatc, but so far, I still walk a mile to the bus every morning, and work a 40 hour work week. 

Any advise, words of wisdom, words of caution...any thing...I just don't want to feel alone in this anymore. 

1 like, 105 replies

105 Replies

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  • BillyFriend
    BillyFriend kristi18883

    Posted

    I'm 5ft11, slim build. I guess hospitals have differing policies on what size requires surgery, but it most likely comes down to a lot of factors for each person. I know there were some attending the patient help groups with smaller aneurysms desperate to get surgery, but were below the size threshold.

    In a perfect world if the NHS had the resources, it would probably be different, but sadly I think they are up against it. I count myself very lucky indeed.

    • mary-rose15619
      mary-rose15619 BillyFriend

      Posted

      You are right, it probably varies from one cardiologist/hospital to another plus individual considerations. As Kristi said, a valve complication may also sway towards earlier surgery. I still can't get over you living with such a large aneurysm. It must have been fast growing. Us in 'watchful waiting' can at least hope that if ours start to grow as quickly, we would be dealt with earlier. All the best to you.
  • BillyFriend
    BillyFriend kristi18883

    Posted

    Mary, that waiting must be really tough. As I didn't know what I had until it was at the point of disaster, I didn't have those problems to deal with. If it's any consolation, the surgeon said mine could have been growing for a decade. One of the reasons for it not bursting was a long time build up of calcification in the bulge. The body can be amazing in how it deals with things.
    • derek76
      derek76 BillyFriend

      Posted

      You were just too young for the NHS screening programme.

      My small one (3.1 cm then) was found about twelve years ago when I was 68 prior to the screening programme when I had a scan for gall stones. Since then with annual scans and it has only grown to 3.7cm.

      I asked a consultant at the time what could be done to slow down future growth and he suggested statins. I did not take up his suggestion but was prescribed statins about four years ago when I was found to have aortic stenosi and was waitng for valve replacement.   With the side effects from statins I stopped/started on them for a couple of years. I think that calcium build up may as you say provide protection.

      A friend who was a policeman told me that a large proportion of sudden deaths in middle aged, elderly men found dead is from burst aneurysms.

      Some research programmes have found that statins are of benefit but the main conclusion is: 

      We found no association between statin prescription or LDL concentration with AAA expansion. The results do not support the findings of smaller studies and suggest that statins may have no benefit in reducing AAA progression.

  • joylee1952
    joylee1952 kristi18883

    Posted

    I have been diagnosed with a 4.2 aneurysm in the ascending aorta. It was found while in the hospital for a suspected heart attack. I do know that aneurysms run in my fathers side....one brother died of a ruptured abdominal aneurysm, one died with a brain aneurysm, grandfather died of a ruptured ascending aneurysm and my dad had the same. Of course, they won't do surgery till it reaches 5, but the stress of this is hard on me and my husband. We do know that I did not have the aneurysm two years ago, because I had all the tests done because of my heart rate rate drops into the thirties at times. I do have this sensation in my chest that I had mentioned to my doctor several months ago and I am now wondering if it is related to the growth of this thing. Periodically, I get this stretching sensation in the upper part of my chest...doesn't hurt, but it makes me feel like something is pulling. It lasts a few minutes and then stops...a few times a day. 
  • kristi18883
    kristi18883

    Posted

    UPDATE: Saw the surgeon today, after having another ECG and a chest X-ray. He has orderd 2 further tests, and an angiogram and a breathing test, because he wants to make sure I don't need bypass as well. He further stated that after these tests, my surgery will be scheduled within 3 months, to replace my valve with a mechanical valve (too young for biological valve) and replace the part of the aorta where the aneurysm is. I saw it today on the MRI...it looks HUGE compaired to the part that is normal. 

    I think the Dr. thought I was in denial, as he kept pausing for a long time when he told me stuff. I explained that I already knew I was going to have the surgery, and I'm not overly stessed about it, because the odds of it bursting, are FAR greater than the 1/10 chance of dying on the table.

    I firmly believe that it does no good to worry about things such as this, and in fact, with this condition, it would be detrimental to my health, as worry raises blood pressure. 

    So to those of you that are going though similar issues, please, try not to stress. I know it's hard. But just make sure you are doing everything in your power to keep yourself healthy (no drinking, no smoking, eating right and getting some exercise) and seeing your Doctor regularly, and inform him/her of ANY changes in your health, even if you think they are minor, or irrelavent. 

     

    • mary-rose15619
      mary-rose15619 kristi18883

      Posted

      Hi Kristi, things seem to be moving in the right direction. It is hard not to stress but you seem to have the right attitude. One thing I remember my sister saying was that when the ink reached her heart during the aniogram, she felt a real sense of sadness. As they say, the heart is the seat of our emotions so not surprising really. I thought I would share that with you so that you are prepared. Stay strong and healthy.
    • denshep
      denshep kristi18883

      Posted

      Hi i have also been diagnosed with a thoracic anerysm near my heart. It is 4.7 at the moment. And wondered wether you have had the op. And how you are. Now im like you and in llmbo as to what to expect. My consultant. As had an mdt meeting dos this mean. My op is lmminenent. There is no one to ask only on this forum. Thanks
    • kristi18883
      kristi18883 denshep

      Posted

      Yep, I had my op on 30th June. I had a BAV replaced with ATS mechanical valve and a 5.1 cm TAA repaired. I had some issues with Tachacardia a few weeks after the op and had to be hospitalized 3 times, but I have been tach free since 30th July. I am on Beta blockers and warfarin for life and doing well. My advice for you is, don't let yourself get lost in the system. If the surgeon says you need tests before surgery, keep bugging them to get them scheduled. My surgery was just over 6 months after my diagnosis and I am feeling better than I have in decades. I definatly have more energy and am far more physically active than I once was. Hang in there and stay in touch with you Dr's and surgeons. 
    • pablo123
      pablo123 denshep

      Posted

      Hi denshep Following a lot of the threads here as I have the same condition which mine was at 4.5 last year, but I am managed on drugs to stabilize me being as I have also fully dissected as well which complicates the matter, due to go in again around Feb to see if it has grown? For other Forums which are less moderated to which have sent you a private message regarding these FB sites which are interactive in support of the John Richter foundation research into aneurysms and dissections in the Uk, USA plus other country’s to get a broader picture of where we all are regarding this illness, these sites have been my life line to getting up to date info from survivors direct you may wish to check out yourself which I am sure will help as it has many others.
  • joylee1952
    joylee1952 kristi18883

    Posted

    Sounds like everything is working out for you. Had the aneurysm grown any?

    i don't smoke or drink..I do line dancing four hours a week, pretty good at keeping stress down, but I still have questions and fears from this thing! It's not that I want or look forward to surgery either, but a planned procedure sounds better to me than a dissection or rupture! I feel like I'm in between a hawk and a buzzard!!!

    • kristi18883
      kristi18883 joylee1952

      Posted

      Hi Joylee...only just saw your post.

         Yes, my aneurysm grew, from 5cm to 5.1.  I am still waiting for my appointments for my angiogram and breathing test. Then my surgery will be scheduled "within 3 months" of those tests.

         I agree that a planned procedure is way better than the alternative. In fact, when the cardiac surgeon told me that I had a 10% chance of dying on the table, and I didn't have a strong reaction, he asked if I realized that was 1/10, and I answered, "what are my odds if I don't have it fixed?" He didn't answer.

         Besides (and this might sound morbid) dying on the table doesn't seem a bad way to go. They put you to sleep, and you just don't wake up..

         We all still have questions by the way, and I would encourage you to write these down and take them with you next time you see your doctor. 

         Take care. 

           

    • Grimspite
      Grimspite kristi18883

      Posted

      Hi Kristi -

      I'm right behind you on the elective surgery. They've been doing these operations for nearly fifty years, and I know I'm fortunate to be saying this post-op, but the relief once it's done is overwhelming and the resultant reduction in stress is beneficiial all round. Do let us know how you get on.

  • kristi18883
    kristi18883

    Posted

    UPDATE: Had an angiogram today and my arteries are clear, so I don't need bypass, as well. I see the Surgeon again tomorow, so fingers crossed, I will get a surgery date then.

    My Groin is sore, as they had a hard time getting the wire into the right spot and had to change wires twice. I'm off work until Thursday, and my hubby is being very helpful.

    So to all of you that are having tests and waiting, take the small victories, such as mine today. 

    • mary-rose15619
      mary-rose15619 kristi18883

      Posted

      Hey Kristi, that is good news smile Surgery will be less complicated and you will bounce back in no time.
    • derek76
      derek76 kristi18883

      Posted

      With my last angiogram they put the catheter in from my wrist It made recovery easier as they just put a band round my writst for the pressure.
    • casey78892
      casey78892 kristi18883

      Posted

      Thats good news Kristi everything is going in the right direction for you. I went to see my GP last week and he has referred me to see a cardiothoracic consultant surgeon in a special heart centre so Im happy with this i think!
    • kristi18883
      kristi18883 derek76

      Posted

      Derek, I'm happy that you had that option. Unfortunatly, do to congential deformities in my elbows, that option was not available to me. Feeling nearly normal today, just a slight twindge in the groin. 
    • kristi18883
      kristi18883 casey78892

      Posted

      Casey, you should be happy. It means things are moving forward for you. I would advise you to write down ANY questions and take someone else with you, as I find that I am often overwhelmed at these appointments and don't retain the information very well. Best of luck to you. 
    • derek76
      derek76 kristi18883

      Posted

      That angiogram by a registrar took fifty minutes and he had a lot of difficulties doing it. When I later complained to the cardiologist I was told that it was part of his learninfg process,

      A previous one I had was over so quickly that I had not realised that he had got beyond inserting the catheter. When I asked when he was going to start he turned the screen towards me and said here is the action replay.

    • casey78892
      casey78892 kristi18883

      Posted

      Thanks Kristi going private will cost a small fortune but hopefully wont have to wait too long will let you no how i get on. 
    • kristi18883
      kristi18883 casey78892

      Posted

      Casey, there are people on this site who have gone private and it seems to me, it didn't really speed things up. But I hope it works out for you. I think the Doctors decide your treatment, based on your medical need, and as much as we want our issues delt with NOW, there are always others in worse shape than us. Keep us posted. 
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