Diagnosed with 5cm Aneurysm near heart

Posted , 21 users are following.

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

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  • Posted

    UPDATE: Angiogram showed clear arteries, so no by pass needed. I then had a follow up with the surgeon who did the angiogram the next day, and he didn't understand why that appointment was sceduled? He actually stated it was a waste of time, but he did do a wond check and it looked just fine. He also was surprised to hear that I had not received the appointment for my lung function test, nor a date for my surgery, so he got that scehduled and it is 22nd April.

       Then, a week later, I got a letter in the post for a follow up appointment with that same surgeon at the OUTPATIENT department (have seen him in Cardiology) on 6th July???? WHAT IS GOING ON? Since this letter came on the Saturday before Easter Holidays, I won't be able to call until Tueday.

       I am getting so frustrated...I feel like I am falling though the cracks. 

       Why would I be seen at the outpatient department, when I haven't even had my surgery, nor any other proceedures scheduled????

     

    • Posted

      If your surgery is scheduled for 22nd April, maybe the July date is a follow-up to that?
    • Posted

      Sorry Grimspite, I was flustered when I wrote that. My Lung Function test is 22nd April. 
    • Posted

      No surgery date scheduled yet.
  • Posted

    Sorry I repeated some info...the format of this site makes it hard to see things sometimes. 
  • Posted

    I had a route replacement 7yrs ago( 5cm)but only 3yrs after i was diagnosed, I also had an aortic mechanical valve replaced at the same time . I have to take Anticoagulant every day but I have been having TIA's since my op they don't know why, but they try to keep my inr over 4 ,if it drops i get a tia . I'm having a MRI tues 14th april to see wwhats going on . they haven't been able to give me one before as it was too dangerous with the valve ,but now they say it's ok ,will let you know after tues. I lived in South Africa and saw my cardioligist every year for my valve , if I was still there it would have been sorted really fast same day .
    • Posted

      Only animals get such treatment here nowadays and it costs a lot. If vets can do it why not the NHS?
  • Posted

    UPDATE: Had my lung function test today. Was expecting to be there for AT LEAST 2 hours, as the leaflat explained it would take up to 4. It was tough to breath through my mouth only, and breath deeply, in/out, on command. I got a little light headed a few times...it was fun. lol

    In the end,half an hour later, my lungs are completly clear and functioning normaly, it's just they are not holding as much Oxygen as they should, which is most likely due to the leaking heart valve.  Good to know my years of smoking tobacco and canibus (shh...lol) haven't ruined my lungs. I'm off the bacci by the way. Been on the e-cig only and my cardioligist are OK with that.

    Now, I'm just waiting for my surgery date. I'm feeling pretty good about it, as all the tests are saying that I am healthy, appart from the mild to moderatly leaking aortic valve, and the 5.1cn aortic anuerysm. lol I think I'd even bet on those odds.lol  

    I will let you all know, when I know.....hope you are all doing well. And thanks for your encouragment and support. If any of you are at Castle Hill the same time I will be, we'll have to meet up for a coffe in the hospital cafe. lol 

    • Posted

      Hi Kristi and all,

      Went to see the cardiothoracic surgeon last week who thinks that I have a bicuspid valve my last ct scan did not confirm this so have to wait until my repeat scan in July for this to be confirmed. He said if I have bicuspid then they get very worried when it reaches 4.5 and would do surgery then so I'm not too far from it. In a way im kind of hoping that it is bicuspid so that something can be done - at least I think I am then I could move on with my life. He told me no competitive sports and pretty much no running the cardiologist and doc told me to continue to run makes you wonder! Hope everyone is keeping well :-)

  • Posted

    Good luck Kristi. I can almost feel the relief in your message and I am so pleased that you are having surgery (so that the worry will be over). Best wishes, Lindsay
  • Posted

    Hi Kirsti

    Sorry to hear about that. Have you considered getting treatment from a cardiac specialist abroad? I had a similar issue in my family regarding various disagreements in treatment among 3 doctors in Russia. Luckily we were directed to a german doctor in a private clinic who seemlessly treated my aunts condition.  I still have contact with them if you would like. 

    • Posted

      whoops! i didnt read the update, i wish you te best of luck!
  • Posted

    to all who may have had this issue, Post operative hubby still in hospital since 24/4/15

    Desperately looking for post operative issues with Aortic Abdominal anneurysm (AAA).  Hubby 56 still in hospital from 24th of April 2015, operation was done he had a thrombus in it too, open surgery had to clamp kidney, four days after oepration temps, 37-38.6, CRP 270, now 77 (6?5/15),temps now in 37 range, high cretanine so got a specialist to look at kidneys now alrigh, he was given oral contrast in afternoon he drank one sachet and vomited, could not drink the other two oral ontrast sachets,in the morning he vomited bile same day, so they gave him another oral contrast to drink prior to  ct, and he managed to keep it down, they aso gave IV contrast. they did a ct on chest and abdomen to find out why the temps CRP and nausea symptoms ,thats when they noticed the slight damage on the kidney detected. Vein specialist said if there is an issue later will do laproscopy and fix it as kidney was slightly dmaged during the procedure but said nothing to worry also noted gas near chest area and said that it is normal during operation and nothing to worry as the body will absorb it.  Lukolytes was normal, Gct (not sure but it is a liver funtion test ) was a little bit high,  but now said it is alright, it looked ok,  Nausea since last friday, but he was on saline and ice till last friday, They started him on antibiotics for the skin as they waited for blood test and cultures to come when that came said that it is nothing to do with that so then they gave a general antibiotic all through IV.  then,started introducting broth as he started having slight stomach rumbles on 1st May 15, Friday night,, and gradually has got to a normal diet first few days were able to tolerate diet cheese sandwich, soups, ice cream fruit salad,(even though had the nauseated feeling they were giving him tablets to stop nausea but it did not seem to do much). this was similar lunch and dinner even though some nausea, and churning in stomach,Temps are in the mid to low 37 range today 6/5/19 temps Started using bowels only on SAturday, 2/5/15 since oeprtion on 24th March 15, as he did not eat much, Nausea and stomach cchurning are getting worse, last 2 days havent been able to eat much at all, he is fussy but he could not even eat 2 slices of cheese sandwich,  he had started havig diarrohea  motion since 2/5/15, then it started to get slightly solid until, monday 4th may 15, he had not opened his bowels at all. They did an X ray due to  the nausea and sick feelig in stomach on tuesday,5.5.15,  found a lot of feaceal matter,  as the nausea feeling is getting worse they dd another ct scan abdo today, again vomited the first satcht of oral contrast so they had to give contrast through IV and they had to wait a while before doing the test, tey also did an echo,  the Gastrointrologist who has been involved with the previous ct too,  said he cant see anything to do with the bowels they look fine from ct, but today he noticed a clot where the operation was done not sure if it s near the stent, or where they said the damage was near the kidneys, he said that he is happy with the bowels but I cannot understand then why is he feeling nauseated and churning, Hubby says he feels worse that what he was after the AAA 1st week,, I asked if they will have to do another procedure for te clot He said the vein specialist and the kidney specialist might have to put him on a high does of atibiotics for the clot, has anyone ever o or had come accross this issue, after the contrast my hubby is going to the toilet he said that it felt like he unloaded 6 trucks, for the first lot it was diarrohea,but after that it was just dribs and drabs with mainly liqid feaces.  He hardly had any lunch just one slice of cheese sandwhich there was no breakfast as he had to do the contrast for the  ct, he is hardly having any drinks, he did not even sit on the chair, yesterday he went for a bit of a walk  not much  later in the afternoon as he was feeling too sick due to the nausea, churning in stomach  feeling but even though the nurse listened to the stomach said there was hardly any sound, so not sure what he ment when he says it was churning maybe a sickly feelig in stomach.  Today he did not even sit on the chair at all, hardly drank any water, did not go for a walk as he was going to the toilet for no 2s and laid in bed sleeping hardly spoke to me saying this is worst than immediatedly after the 1st week of operation. His wound is healing very well, thank you God, Just need to know if any of you are able to shed any light the drs said they have not  had an issue like this before and are not sure, could it be the clots in the area causing this, please anyone  out there if you have any idea please let me know or  could he have caught the h pylori bug during the oepration Looking for answers , they also did a stool test and negative for what ever they were lookig for

    Please any ansers are appreciated. God Bless you all

    PSs his uncle 78 yrs old underwent the same operation and was out in 14 days, ( about 2 months ago) and back to normal.  Never thought hubby  would have to undergo all this, he smoked until one month prior to operation and consumed some alcohol about 3 weeks prior to surgery he was at a funtion. Has anyone had this stomach churning nausea, and a clot near the site after the operation and stayed so long in hospital.

    Kristi18883 I hope you have got ome answers if not go for a second opinion please, and My hubby waited 2 years,it ws an incidental finding too, when he did his oepration it was 5.2, but the dr said that the area there was quite weak after the operation so t was good that he had it done. Just need him to recover and come home quickly, an annurysm can go upto 5.5, they might scan you every 3 months to monitor you, because I went private it was quick, his uncle had to wait for quite a while his was almost 6 but he had it for more that 7 years,   my hubbys mum had one too so it is more heriditary, she died before she went for the operation but I think it was due to her pressure, as her presurre ws quite haigh and they could not try and get it under control.  They said that if you have more than one person within the family with this you need to get all your sibling and children checked once they hit 40  Everything will be fine, but should you have any sudden pains go and get your sef checked my hubby had no pulsating feelings either, and did not even know until he went to get a kidney san done as his albumine was so high due to not drinking enough water it is still high but the kidney specialist he was seeing was not too concerned as the scans have been good.

     

    • Posted

      Before my own AAA repair I took several sachets of Movicol, as I suspected I'd get constipated. They worked very well, but I should have carried on taking them as I became constipated again on the 4th day. It did get sorted, and I'm now in my 9th post-op year and perfectly fit. Someone else I know who had the operation had similar symptoms to your husband - his bowel had become twisted during the op, and he had to go under again and have it sorted out. Might be worth a query.My father had a AAA as well, so heredity does play a big part. Hope it all gets solved soon.
    • Posted

      Hi thanks for your replies, appreciated , just visited him today, temp was 38, 3, gbut came down wihout panadol, later on he said he felt flushin in his face near eyes, I really dont know what it ment, they checked pulse it was low and said like it is skipping a beat, so they did an ecg waiting for results, he was dehydratedas urine was dark,  back on saline and that changed the colour, did not eat much at all, yougurt,less than 3/4, smll tub,, 1/2 a banana, 2 scotch fingers, 2 small serves of mash potato, quarter cheesecake, about 6 pieces of fruit from the fruit salad, he had a couple of apple drinks, and 1/3 of sprite, from  small can about a cup of water that is it for the whole day,he had blood stools watery with mucas about 4 times since last night till early morning, did not open bowels today, vomited last night and in the morning, before breakfast,docor did more blood test he also had a urine test he did it at 5:32pm I left at 6:15pm and no one had come to pick the sample up they said they will be there 5 mt after he finished.spoke to the dr who did his operation, he said he was getting another gastro doctor to see him might have to do a colonoscopy, they did blood test for calcium phosphate fbc crp u+scor e maybe urea, and msc for stools, if an when he opens it today, which he hadnt until I left. just to make sure nothing else is wrong, when the doctor did his opertion mentiioned that his bowels looked scared and wanted t know if he had any other operations, I said no, I thought it might be due to the weight he put on, but the kidney docor said it could be due to the anneurysm.  The gastrointrologist cae and had a chat, mentioned about the flushin on he face this is the first time he had expeienced the flushing on face,, doctor said maybe due t the tep, I forgot to mention that even when he had temp he did not have the flushing, I asked him if he noticed anythig inthe ct with IV contrast he said nothing noted, and even if here was a leak he said he migt have seen i, he pressed tummy said it was soft, scar healing well, 

      said will wait for stool test and then  put him on some other medication antibiotics, after dinner a bit of churning in stomach.  I just dont know what is going on the nurse came in wearing aprons ad gloves so I dot know what sot of bug in tummy they are talking about without any test. I am wrting this hoping that there migt be someone out there who migh have undergone a simlar issue, There was no obstruction in the bowel from ct, I think if here was a  twisted bowel they might have seen it on ct, how was your friends dicovered. How is your faher and friend going.  It is good to be able to talk to someone who has had some experience with it and thank you. I will be  keeping you updated Thank you and Kristi for your replies.  God Bless you all.

       

    • Posted

      Colonoscopy sounds very useful. Fingeres crossed!

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