I was diagnosed with a thoracic aortic aneurysm ( acending and dissected desce ding) 2 years ago. I have since declined surgery and am now finding it impossible to access any sort of advice about managing my condition as well as what to expect in the future. I have symptoms which could be due to my arthritis or my aneurysms. My GP is unhelpful, he says he has no knowledge of aneurysms and I am no longer under the cardiac and vascular consultants because I have declined surgery. Is there an organisation ( like Macmillan) who could give me - and my partner, an idea of what to expect in the future? It would be wonderful to have someone to address questions to on my condition other than Doctor Google!
Thoracic aortic aneurysm.: I was... - British Heart Fou...
Thoracic aortic aneurysm.
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Bananacar
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your doc has no information on aneurysms??? I am baffled.
The NHS website has clear concise information about it, but your best source of help would be the British heart foundation, who support this site. They have a helpline. I quote from the website : “Call 0808 802 1234 (freephone). Our Helpline is open weekdays 9am to 5pm”.
Thanks for your reply, I have been on the NHS website, it explains what aneurysms are etc but there is no info on what happens if you don't have surgery. I realise that everyone is different but I need to be able to differentiate between symptoms caused by the aneurysms and other conditions. I know that nothing is going to cure my condition without surgery and that it will kill me eventually but I would like to know what to expect for the future, both for myself and my family. So far I have just been referred from one doctor to another , my gp who I spoke to the day after my diagnosis said it was not his speciality. I had a 15 minute telephone conversation with him and since then have not had any contact with the practise either by phone or face to face about my condition, I have had the usual Covid and Flu jabs with the practise nurse but that is all in 2 years. Perhaps as you say I should contact the health unlocked people but at this point I feel the need to sit down with someone who has the knowledge to answer my questions along with my partner who has supported me through all this. Incidentally I am 76years old and my partner has health issues.
The health unlocked website is simply a platform where we can share tips and so on - we are not medical,people. As I said, the people who can advise you are the British Heart Foundation, who support this site. Have a read of their website and give them a ring on Monday.
For what it's worth, my mom had an aortic dissection a year ago. I thought she also had an aneurysm; they seem to overlap in people's minds, but she swears there was no aneurysm, just a ginormous dissection starting in the ascending aorta and ending where that artery splits off to carry blood into her legs. (Why it would dissect...but I live across states from her, can't ask her cardiologists myself, must content myself with info she provides.) She also refused surgery, and reluctantly, her team agreed, but has still seen her periodically throughout this last year.
They put her on BP medication (she previously had not had issues with blood pressure,) and told her not to get her heart rate up over 100 BPM. (I think she wasn't supposed to lift much, either.)
Apparently, parts of the dissection did begin to heal even before she got out of the hospital, and at this last visit, (in May,) a new cardiologist told her "This isn't going to kill you. Something will kill you, buy not this. Live your life." He also told her that if she does overdo it, she'll know it...that that artery would tell her. I guess that was a pain unlike any others she'd had, but when I was there, she also wasn't sure...is that twinge in her back the artery or just a strained muscle? (That's what she thought it was when it happened.)
That's not super helpful, I know. I think she didn't feel her doctors were very helpful either, and my best guess is--they don't know. She was 83, now 84 years old. They're probably surprised she survived this long, period.
But, that noted, my grandma also had an aortic dissection, apparently also no aneurysm, but this was all in her ascending aorta, when she was 96 years old. Doctors told us all she wouldn't last the weekend, and if she did, a week at the outside. (She was too old to even be offered surgery.) I was like...do you know this woman? But whatever, they got her on hospice and sent her home, also with BP medication and morphine for pain.
Two years later, she was "fired" from hospice and finally died in her sleep at age 104. I'm not going to say it didn't impact her life but she was pretty darn old--it's hard to tell, after a point, what's what. She was still getting out for a walk on her own steam though, past age 100, which terrified my mom, because she could barely see or hear and might have had a tiny bit of dementia.
All to say, if you've made it this long (two years?) your dissection/aneurysm is probably not going to kill you, either. I mean, it seems like "they" think if it's going to, it will do it pretty quickly.
But I'm not a doctor or medical professional of any sort, and everyone's experience is different. Like anything, I guess, try to use good sense? Don't try to aggravate it? But don't live in fear, either. ??
Thank you so much for your reply, I think that in the grand scheme of things the medical profession do not know alot about aneurysms and dissections. Sometimes I think that if I had not had the ct scan which diagnosed me I would have been none the wiser, ignorance is bliss if you like so I am carrying on as I'd I didn't know about it. It seems the only treatment is surgery , like your Mum I am careful about lifting things, I have low blood pressure anyway (120/70) . I really appreciate your comments, most people try to persuade me to have the surgery, but your comments have been extremely helpful. Thank you.
Wow, you only even know about yours because of a CT scan? Can I ask why you had that? Doesn't matter. Main point seems to be that "surgery" is something they--the docs--can DO, and I kind of get that. There really is so much they don't know, or if they know a little, there's still nothing they can DO, and you can imagine how frustrating that would be. But like you suggest, had you not known...would it even affect you? Maybe it will some day, but something IS going to affect all of us eventually.
After my mom's "event" (she definitely knew something was wrong, but maybe because she walked into the ER, they made her wait 12 hours before they did a CT scan for her, after which point they whisked her right into ICU,) I started researching aneurysms and dissection, because the chances are pretty good I'll be joining the ranks at some point too. My mom's cardiologist apparently said, "Tell your kids to get screened, for serious!" But after reading up, I was like, "Meh." Dissections do sound a bit gnarlier, but if you believe the internet, aneurysms are pretty common and...you can go a long time without ever knowing you have one. And maybe many never know.
Now, if I was going to get screened for something early, if I had it to do over again, I'd get screened for osteoporosis, because THAT has upended my life. But why don't they screen (before age 65)? Because, for 90% (I'm guessing) of people (most of whom are 75 and up?) it never is a big deal, or, in the scheme of "old age conditions", it barely registers. But if you get it young, while you're still very active, you're literally like a bull in a china shop, and it can change your life.
So I'm definitely not saying ignore signals, or don't insist on getting to the bottom of things that don't seem right.
But even when you know, there still might not be a lot they can do, and you still have to live your life, right?
Anyway. I am very long winded, but if telling my mom's story was helpful, I'm glad!
I was getting breathless when climbing stairs , felt dizzy and extremely tired then I got back pain intermittently ( now I have it constantly). I thought it was probably the polymyalgia coming back, I saw a locum doctor at my practice who gave me a thorough examination and sent me to the rapid access chest pain clinic they ordered the ct scan which I had at 3pm , at 5pm the gp practice receprtionist rang to tell me I had a major problem. A doctor from the hospital rang me on Monday morning to tell me to see the cardiac consultant at 2 pm that afternoon, I didn't need an appointment he would see me immediately. He explained about the aneurysm and that I would probably need surgery but it would have to be at a London hospital because quote, I would need a Supersurgeon, unquote. Incidently the visit to the gp practice 2 years ago was the last time I saw a gp face to face. I have had no advce or after care whatsoever from them and because I refused surgery I am dis charged from cardiology.
Incidently I have never been told the condition could be hereditary, I only found that out through this forum and subsequently the Internet.
Wow. So did those symptoms just resolve? Did they say they were related to the aneurysm?
No still got all those symptoms, back pain most of the time now. This is why I would like to speak to someone who knows about aneurysms but I am not having any luck. Reading the comments on the forum I am not the only one to be looking for on going care and ad vice. I have learnt more from this forum than from any medic.
Hi Bananacar , can I ask why you declined surgery ?
I declined surgery because of my age and the odds of coming through a very serious operation unscathed ( I've read the statistics on the Mayo Clinic website) and then finding out from the consultant that I would nèed a further operation on my descending aortic aneurysm . I am almost 77 so I would like to end my life in a natural way rather than spend my last years doing hospital appointments and swallowing dozens of pills. It may shorten my life by a few years but after seeing my mother , who had 2 major operations at age 78 (for bowel cancer) 'live' for the next 15 years sitting in front of the television day and getting no support from the medical profession, I would rather eat what I like and do what I like. I can see no benefit from going through major surgery at my age. I do not take the statins or the blood pressure tablets because the side effects make me feel worse than I do without and they're not going to cure me.
You could request your seen by a palliative care consultant usually based at your hospital. They would be able to discuss symptoms and what help you could have with them and focus on support for you and your partner.
I'm sure you know already (though some posting here may not) much information on-line about aortic aneurysms is about abdominal aneurysms, not thoracic. There is indeed precious little information about thoracic, including from the BHF.
The most direct recommendations are
(i) keep your blood pressure well under control (110/75 or lower) (see aorticdissectionawareness.o... )
(ii) you should be on a beta blocker, two reasons: a. there is evidence in Marfan that bbs slow the rate of growth of aneurysms and it is felt they may also help in non-Marfan cases and b. they will reduce the peak pumping pressure of your heart, also protective for aneurysms.
(iii) keep up gentle aerobic exercise to maintain cardiovascular fitness, but do *not* lift any 'heavy' weights - if you feel you are straining at all, then it's too heavy.
There are official guidelines and though they are quite big and technical documents, you should be able to find something relating to your condition, if you take your time and read through them (start with the latest-dated). If you do find something, and you need help from your GP, you can show them the relevant page(s). There's a list of these at aorticdissectionawareness.o...
Good luck
Cliff
Looking at the 2024 EACTS guidelines, even the section on "chronic" aortic disease (which is what your condition is) seems to be focused on intervention and not on living with it.
That you have declined surgery, which is your right, is not a reason for the consultant(s) to fully discharge you with no advice. I would think about writing a letter (letters can be very effective) to the consultant, cc your GP, asking for their specific recommendations in your case where you are unwilling to take the risk of a negative outcome from surgery. They should already have had such a conversation with you as part of the decision making process, but it would seem not.
JulianM do you know of any such guidelines for non-interventional care of chronic dissection/aneurysms?
I know what is supposed to happen, but it doesn't, you are either on the surgery train or if you declined that you're left at the station!
After I declined the surgery in 2023 the consultant at Oxford said I would have another CT scan in January 2024 and a followup appointment at his clinic in February neither of which happened. I can only assume he didn't think it was worth the time.
I thought I'd see what ChatGPT says, and whilst it's not always reliable, I feel its recommendations here are sound, and add a few things to my thoughts:
"Managing chronic aortic dissection and thoracic aneurysm without surgical treatment requires careful, ongoing medical supervision and lifestyle adjustments to mitigate risks and monitor the condition. Here are the key guidelines:
Medical Management
Blood Pressure Control: Strict control of blood pressure is critical. Aim for a systolic blood pressure of around 120 mm Hg or lower. Beta-blockers are commonly used as the first line of treatment. If beta-blockers are not tolerated, calcium channel blockers or ACE inhibitors/ARBs may be used.
Heart Rate Control: Keeping the heart rate under control is also important. Beta-blockers help in achieving this, which can reduce stress on the aorta.
Pain Management: Adequate pain control is essential to prevent additional stress on the cardiovascular system.
Monitoring and Follow-Up
Regular Imaging: Schedule regular imaging tests such as CT scans, MRIs, or echocardiograms to monitor the size and shape of the aneurysm and the dissection. Frequency may vary but typically ranges from every 6 months to annually.
Regular Check-ups: Regular visits to a cardiologist or vascular specialist for physical examinations and to review symptoms and medical history.
Lifestyle Modifications
Exercise: Engage in moderate, low-impact exercise like walking or swimming. Avoid high-intensity or contact sports that could increase blood pressure or risk of trauma.
Diet: Adopt a heart-healthy diet, low in sodium to help control blood pressure, and rich in fruits, vegetables, whole grains, and lean proteins.
Smoking Cessation: Stop smoking and avoid exposure to secondhand smoke, as smoking can exacerbate vascular issues.
Weight Management: Maintain a healthy weight to reduce the burden on the cardiovascular system.
Medication Adherence
Consistent Medication Use: Adhere strictly to prescribed medications and never miss doses. This includes antihypertensives and any other medications prescribed to manage the condition.
Emergency Plan
Recognize Symptoms: Be aware of the symptoms that indicate a worsening condition, such as sudden severe chest or back pain, difficulty breathing, or signs of a stroke.
Emergency Contact: Have an emergency plan in place, including quick access to medical care and informing family or friends about the condition and necessary actions in an emergency.
Psychological Support
Stress Management: Implement stress-reducing techniques such as mindfulness, meditation, or counseling to manage emotional and psychological stress.
By adhering to these guidelines, individuals with chronic aortic dissection and thoracic aneurysm can manage their condition more effectively and reduce the risk of complications. Regular communication with healthcare providers and adherence to medical advice are crucial in the long-term management of these conditions."
Finding the actual source of these recommendations is the usual problem with ChatGPT, though!
Finally, and on a personal note, your decision to decline surgery is exactly right, if that is what the entirety of your knowledge and understanding - of your own body and situation - is telling you. No-one else can contradict you on that, doctors or not.
You may know I had an emergency type A dissection 6 years ago (I'm 70 now) and had a fantastically good surgical outcome. However, the strain on me and my wife from other things (the dissection reactivated my bad Afib) has been constant and very draining, with virtually no quality of life, and I have frequently felt that I wish I had just faded away at the time. When I got home after hospital, one of the first things I did was to put in place an Advanced Medical Directive, the thrust of which is that if something happens again and the doctors can't pretty much guarantee me a good quality of living afterwards, then I decline treatment, and just make me comfortable and let me go. These things aren't talked about like they should be.
Very best wishes
you should be offered 6 monthly monitoring via ultrasound regardless of declining surgery or not. Surgery can be done via artery in groin now, still a night in ITU but under sedation and spinal. It could grow, it could stay the same. My father has too many co-morbidities for surgery and has a 7cm sub renal AAA. I doubt that will be the final thing to take him but the surgeons were happy to let him be. Take care 🦊x
My aneurysms are thoracic not abdominal. Surgery would be open chest surgery for each aneurysm, I.e. 2 major operations.
Oh I see. Can understand your concerns re surfery
Thank you for your reply, you can see why I have made the decision not to have surgery. It may be 'head in the sand' but quality of life is what matters. Also the toll on the rest of the family, my partner and my children deserve a bit of life, I have a DNR on my phone , all these things I have discussed with my partner and my family. I have filled in my organ donation card so hopefully I can help someone else when the time comes, in the meantime I'm spending my money on my kids and grandkids rather than saving it for a care home. I really wish you and your wife all the best, and thank you for your support.
When you get very poorly then there should be palliative care. Our local hospice offers it to any one who is in need. You could explore what is available locally to you.
Bananacar• in reply to
At this point all I need is someone who can tell me what to expect, I know that if the aneurysms rupture it will be a quick end but I the meantime I would like to differentiate between heart pain and arthritis. Just to complicate the issue i ihad polymyalgia rheumatic 6 years ago and some of my problems now are very similar to then. GPS just fob you off with painkillers,
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