Newly diagnosed - scared and looking for advice

Posted , 6 users are following.

Hello -

I was diagnosed with pneumonia in at the end of June, after a chest x-ray and a CT scan.  This week, I had a follow-up scan to make sure the pneumonia had cleared (it had).    

This time, the scan revealed "Aneurysmal dilatation of the ascending thoracic aorta measuring 3.6 cm"   I think this is a TAA

I am 51 years old and lost my husband to cancer just a few months ago.  We have two college-aged children.  I am absolutely terrified.   My children have been through so much and I want to do everything within my control to stay health.

My scan was seen by a thoracic surgeon.  His office told me "not to panic" and I have an appointment with a cardiologist in mid-September.   My father had an aortic aneurysm repaired at age 68, so I'm thinking this is a genetic condition. 

I am 5'4", 140 pounds.  Recent BP is 120/80  (not sure about my cholesterol)

Can anyone offer tips or advice?    I know I need to lose some weight and I will switch to a very heart-healthy diet.   I also read that daily aspirin may slow the growth so I will add that to my daily routine. 

My biggest concern is that this wasn't noticed 6 weeks ago when I had the first scan (& on two chest X-rays)   Does that mean it's growing like a weed?

Thanks so much for any help you can offer.  I am thrilled to have found this site.  

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  • Posted

    3.6 is quite small as your surgeon will tell you and they don't grow quickly and you are many years away from when they will want to do anything about it.  Don't do anything until you have seen him. He will probably prescribe a beta blocker and a statin rather than an aspirin.

    You can put words into the top right search box and lists and answers will come up.

     

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    • Posted

      Thank you.  Should I limit my activities?   I feel like a ticking bomb.  I run, spin, swim & do yoga.  I've aged about 40 years in the last three days.  

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    • Posted

      Carry on as you are doing but perhaps avoid weightlifting although some people still do that. Remember it is small. Mine is an abdominal one and it has only grown 1.1 cm in 14 years from 3.1 to 4.2cm.

      Once a an osteopath did not want to treat me but the surgeon did a letter saying it was quite safe.

      When I go for a scan they still say , Here comes the man with the small one.

      The only problem it will give you now is a getting travel insurance as they put them all in the same category.  

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    • Posted

      That's pretty funny!  Thanks for the laugh.  I've had a tough year, after losing my husband.  He was sick for only 8 months.   I assume the worst with every ache, realizing now how precious life it.  This came out of the blue and has rattled me to my core.  I appreciate your responses.  

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  • Posted

    More macabre humour. When I told the girl doing my scan one time of the travel insurance difficulties                  she said it would not cost them much just the cost of taking your body to the mortuary if your aneurysm burst

    I was quoted £2000 for a months holiday in America from England. I asked how much it would be if I went to Cuba instead and she said just £1000.  .  

     

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  • Posted

    I agree with Derek.... I stopped taking aspirin but do take beta blockersand statins. My hospital in the UK - quite a designated heart treatment centre doesn't use the term anuerysm until it measures 5cm, just dilation of the aorta. mine is ascending just before the arch 4.9cms. And I'm ridiculously calm but vigilant - that wasn't the case for the first few months of knowing however. Your blood pressure is excellent. And stress will cause more damage than exercise, so mindfulness and meditation is highly recommended. Doctor didn't say don't panic for no reason. Sorry about your recent loss. Now is the time to buckle up and show how strong you really are. big hug.

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    • Posted

      As the old war time saying here was, Stay Calm and Carry On. How long since your one was discovered and how much has it grown since ? 
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    • Posted

      It was discovered  - or rather I was informed in July last year. I was being checked for tachycardia and was given an echocardiogram. The consultant told me that although I didn't have what they suspected I did have a dilated ascending aorta of 4.9cms and that he would refer me to a colleague. I thanked him very much knowing nothing and grateful I hadn't wasted their time! He also told me that when I had been hospitalised for acute vertigo in 2013 (not happened before or since and stroke was suspected) they had noted that said aorta measured 4cms. but this was not reported to me or my doctor. So what we then knew was that it had grown 0.9cm in 4 years. When I did myresearch I went into massive shock and self concern. 

      I had a follow up MRI in October 2017 - still 4.9. and another in July 2018 still 4.9cm. In the follow up consultation in a few weeks ago the cardiologist said that 'the professor' had noted it had not grown since 2014 and I would not need another MRI scan for a year. This was complete tosh as it hadn't been measured in 2014.And  I insisted that with the size being critical as I see it and the growth in the past it should be checked again by MRI in January. He agreed.  He checked and admitted I was right. Whether it is just to cut down costs to the NHS by checking less often? Main point being they are only human and make mistakes so check everything.

      I feel fine. I live alone which is a bit of a worry...but you cant control anything in the future. I will get myself a medicalID bracelet and try and remember to take my phone to bed at night. Other than that I'm happy.

      Basically it was by chance I was diagnosed and the only benefit I can see for knowing is that if it did dissect or rupture, and was able to get quickly to hospital, they would know what it was....and would act fast.

      I think there is a lot of misinformation about it is a condition. The NHS seem resigned to sweep it under the carpet. It is grossly undiagnosed and it suits them to be so as there is little they can medically do and open heart elective surgery is very expensive. (as is constant monitoring). Only males are scanned at 65 for abdominal aneurysms - the sex difference in aortic aneurysms are equal but it would be far more expensive to scan everyone, females more likely to take them up and more likely to be alive at 65. Better than no scanning at all.

      Also the hospital I am under doesn't call aortic dilations aneurysms until they reach 5cm. Even though 40% dissections and ruptures occur under that measurement. . I don't think I am being cynical here Derek just realistic. If mine grows I am going to ask to be referred to the Liverpool Heart and chest hospital as they are the most experienced in elective surgery. I am with Leeds General Infirmary at present. as I live in Leeds and it is very convenient. How about you Derek?

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    • Posted

      My AAA was discovered by chance as they mostly are when I had my gall bladder scanned (ultra sound) . That was OK and that as well s the AAA I had 37 cysts on my liver and several on each kidney. The aneurysm causes concern until you realise that it will not affect you until years down the line and  with regular screenings they will know when it is less dangerous to operate than leave it.  

      I had a CT scan on my spine three years ago and they mentioned it in their report and with a more exact size than the ultra sound. Though strangely when I had a whole spine MRI scan two years ago the did not mention it. I had my routine ultra sound scan last week and she gave me a slightly smaller result than in February saying that every machine  varies.

      When we were house hunting in Brighton and Eastbourne I did think that one in Brighton would be ideal in such an emergency as it was very near the Royal Sussex Hospital.

       

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  • Posted

    Don't panic and see the cardiologist. I do know keeping blood pressure down is important. Eat healthy and do what Dr says. Mine is at 4.8 cm and will be checked again on Oct. Biggest thing I have learned is be thankful that you know it is there cause a lot of folk never know until it's too late.Wish you the very best.

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  • Posted

    Which antibiotic were you on for pneumonia?

    Fluoroquinolones can sometimes cause aneurysms.

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    • Posted

      The reports I've read say they patients with aneurysms should not be prescribed Fluoroquinolones not that they cause them. The fear is that during treatment with them and for 90 days after they can cause them to weaken and burst. I mentioned this to my vascular surgeon and he had not heard of that. It was later brought up in the public inquiry into  Fluoroquinolones by the European Medicines Agency in London in June. The inquiry is available to watch on Youtube if you search under EMA inquiry.

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    • Posted

      I've been on 4 antibiotics since June.  Cipro, Levaquin, Augmentin and now Bactrim.   Pnemonia was followed by sinusitus that won't go away.  

      I think it's very odd that I had a CT scan on June 27, with no mention of the TAA.  Just 6 weeks later, there it is.  

      After learning more about this condition, I am a little grateful that it was found now.  It's really scary, but I can take proper steps to stay healthy and hope it grows slowly.  

       

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    • Posted

      Presumably the CT scan was on your chest, Ask your GP to check the scan if he has a copy of it or to ask them to look at it again.

      Obviously most people do not have a problem with Cipro or Levaquin but if you do the first noticeable problem is usually tendon pain other effects can stay hidden until triggered by other drugs such as steroids.much later.

       .

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    • Posted

      I took the Cipro in early June, before the 1st scan.  As soon as had the 1st scan (June 27th),  I was prescribed 750 mg Levaquin for the pneumonia.    Could the Levaquin actually have caused the TAA to grow that quickly?  Good grief.    My mind is blown. 
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    • Posted

      It is a terrible drug for many people to an extent depending on our DNA but although it can cause cardiac problems I do not believe it caused your TAA. That is something that you must have had for a considerable time. Have you noticed any other recent problems?
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    • Posted

      I just did a little research.  Lots of lawsuits exist, filed by people who have had dissections or ruptures within a year of taking one of the drugs.  I've been sick since June so everything seems problematic.  

      My doctor's notes indicate that the TAA wasn't present in the earlier scan.  My cardiologist appointment isn't scheduled until September 17.  I am going to try to be seen sooner, just to ease my mind. 

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    • Posted

      I didn't look for the outcomes; just the fact they exist.  The study I read linking the drugs to the aneurysms was done in Sweden.  

      My mind is playing crazy games with me.  All indications are that a 3.6 cm bulge isn't too much to worry about.  Learning that FQs could have caused this to some on suddenly makes me worry that it is growing rapidly.  Blood pressure is still low today.  I'll call that a win.

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    • Posted

      I've been reading about the drug for over four years and Google Alerts send me all the medical alerts and articles on it and the only reference has been on existing aneurysms during and up to 90 days after treatment.

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    • Posted

      I’m not looking for a case; I’m just in shock that this popped up so quickly.  I’ll have lots of questions for my cardiologist at my first appointment.  I also plan to get a second opinion. 
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    • Posted

      I still take it as a risk for those already with an aneurysm. There is very little chance of it being proved that an aneurysm suddenly occurred unless the participants had been very recently scanned for some reason.
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