Hi everyone In February 22 I had an emergency operation for aortic dissection. It was a huge shock to me and my family. All the teams that saved my life that night we're incredible. I was just wondering if there's anyone who's had this operation and how you're feeling. 17 months on and I still feel different in so many ways. Can this be normal for open heart surgery? I just wanted to hear some recovery stories from you all and definitely if there's any aortic dissection people recovering.
Many thanks 😊
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Farawaytree
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There's a growing number of aortic dissection survivors around, and hopefully you'll get replies from one or two of them on this forum soon, but ...
If you haven't already done so, check out Aortic Dissection Awareness UK and Ireland, a survivor-led charity which runs a buddy scheme, has Facebook pages, publishes helpful guides, and campaigns to ensure that emergency medicine doctors and paramedics recognise aortic dissection when they see it and take appropriate action.
Thank you so much for your response, this is so helpful,. When it happened to me I had a pain in my jaw then a huge rip in my chest, the paramedics called the on call Doctor who said it sounded like tooth ache and to make an appointment with my dentist. If it wasn't for my husband taking me to A&E I wouldn't be here now. In the hospital my heart stopped, they managedto revive me, I had a scan, then they realised my aortic dissection. I am so very lucky to be here and to help people in a small way how this condition can be missed. Thank you again, I will look that up today. Very grateful
I hope you receive this, I'm new to this group and there's just a reply and not a send. 🙂
Severe (immediately off the scale) pain in the chest or back, pain migrating from one part of the body to another ... these are actually 'red flags' for aortic dissection and I'm so glad someone did eventually do the right thing and order that (cardiac CT with contrast) scan!
Having met and listened to a number of survivors, it's getting to be a familiar story. Though the details vary, and they're not always as clear cut as yours ... But, of course, the challenge is that aortic dissection remains a rare event and there are other causes for sudden pain.
In relation to this forum, you'll get notifications of 'likes' and replies, don't worry!
Thank you so much for your reply, I've now joined Aortic dissection awareness which I'm very much looking forward to, a new chapter for me.Thank you again
Thank God for your husband. Good luck with your research, and I DO hope you find a “Buddy”.
A friend introduced me to someone who was diagnosed with my problems & who started on her “journey” a year before me… it has been so comforting to have her to talk to.
Hi Farawaytree - I'm sorry but I'm of no help with regard to Aortic Dissection but just wanted to send you a very warm welcome to the forum. What a shock you must have had! We have some very knowledgeable members here (including JulianM who has already replied) and I'm sure some others will be along soon to offer their own experiences as well. Carol
Hi Cee-Cee1Thank you so much for the warm welcome, this is all very new to me. I've already had great advice from JulianM and looking forward to being part of the community.
Hi Farawaytree, and welcome to a club no-one would be a voluntary member of.Yes, there are lots of survivors, and becoming more every year as diagnosis rates improve. Thanks to Julian's post, I see you've joined AD Awareness UK&I so you can now chat with over 860 members the last time I looked. Plenty of stories there and a fantastic bunch of people with all sorts of experiences. See you over there.
There are around 4000 dissections per year in the UK, and getting for half of these unfortunately don't even make it to hospital, but that means there are now pushing 2000 per year who are surviving, so you've already beaten the odds. More information at thinkaorta.net
Yes, it is normal to feel different, even after 17 months. As your heart had stopped my guess is you had a type A dissection which caused blood to collect round your heart, stopping it. This is a pretty serious event so all kudos to the hospital who spotted it, but after such a major open-chest operation your body has a lot to recover from. Some recover faster than others, it's a very personal thing and there's really no guide that says after X months you should be able to do xyz and after Y months zyx.
I'm over 5 years since my type A dissection and my aorta is now great. I had other cardiac history before and one of the drugs for that is causing me problems, but apart from that I would be back to a fairly normal life, advancing age (68) notwithstanding.
Hi Cliff_GYou sound as though you're doing very well after 5 years. I'm 55 and have to say it totally shook my world, I think at times I'm still in shock and not sure how to feel. It's so good to hear from a surviver of a type A aortic dissection. You're absolutely correct, I did have a type A which totally shocked me and my family, it all happened so fast. St Barts are organising talking therapy for me to try to come to terms with it. I am looking forward to exploring AD awareness, this has opened up a whole new World for me. Everything you're saying is filling me with positivity. Hearing your aorta is looking great after 5 years is incredible news. Thank you so much for taking the time to respond, you've all been so helpful
Yes, I eventually managed to get psychological help, and it really helped. You will manage. The Guide has a bit about looking after your mental health. Very important
I’m so glad you survived this,you probably realise how lucky you are.My husband died because it wasn’t recognised.It was only when they did a post mortem that they could see what had happened.Hope you find other people to talk to who have survived this and that you continue to recover well from your surgery.
I am so sorry to hear that your husband passed away with this condition. I very much realise how lucky I have been, especially as it was some time before doctors knew what was wrong. I think, that is part of my shock, that I was so close to not surviving. The medical team revived me and said to my husband, “we have no idea why she’s alive but whatever we’re doing is working “ now that I feel well enough to look back and research I am in total shock that so many people go undiagnosed. Thank you so much for responding, it must be so painful for you.
14 years ago at age 50 I had a dissection from the aortic root to the illiac. It was unexpected an emergency and required 14 hours of surgery that included a Bental procedure and 5 hours on the heart lung machine. Welcome to our club. Yes, I feel different. Stamina is perhaps 80% at best what it was, likely due to beta blockers and lisinoprol and statins. Many doctors say I need these to ease pressure on the aorta. Ive traveled many spots around the world, taken remote wilderness fishing trips. I’ve been slowed but the will keeps pushing on. Physical Constraints change but none preclude, only hinder abit. That’s the way it is.
goodness you are so inspirational. I would love to pluck up the courage to travel and do so many things, but something just holds me back, I think maybe, when I start talking therapy everything will start falling into place and I’ll feel more confident. My stamina, at the moment feels much less than 80% and can fall asleep during the day as soon as I sit on the sofa, but I can see slight improvements, I went back to work part time 6 months after the operation and am staying awake more. Bit by bit, small steps.
Thank you INTHEUSA so wonderful to hear 15 years on and things are good, that fills me with lots of hope
Hi, I haven't had an aortic dissection but I did have an out of hospital cardiac arrest prior to having my aortic valve replaced.The arrest brings it's own issues and can include fatigue and varying levels of hypoxic brain injury, I struggle with remembering words at times and can be more forgetful than previously. I also feel different but don't really know how. There's also a Facebook group and charity for cardiac arrest survivors. It's SCAUK and has lots of information about life after such an event.
Goodness me, you have been through a very tough time, I hope everything is improving for you. I also get so tired during the day and also forget words and especially names. I lose the thread of conversations and have to concentrate so much more to what is going on around me. I will definitely check out the Facebook group and SCAUK. Everyone’s been so helpful and welcoming. I think I said it before, probably repeating myself, but this has opened up a whole new world for me. Thank you
Hello Farawaytree, I am not a individual with this condition but my son does. This group is so supportive and there are some incredibly knowledgeable people here. I just wanted to say welcome and so glad you received the amazing care and continuing support. My son will be moving over to Barts in a few years so your post has really helped me feel a lot more confident.
I'm glad your going to get some talking therapy, sometimes we hold emotions and how we are feeling back from our family & friends because we don't want to worry or upset them. But you will have a safe space to talk♥️ welcome to the group and wishing you continued recovery 😊
St Barts were incredible, not only did they help to save my life along with the incredible staff at Ipswich hospital that revived me, then once they found out what had happened to me, kept me alive while transferring me to St Barts in London. St Barts aftercare has been wonderful, I can’t fault them at all and will be forever grateful. Everyone has been so helpful to me that I am thrilled I can help you in some small way. I had no idea that people were so knowledgable on here, I’ve had some wonderful advice. Thank you so much for your warm welcome and wish you and your son all the very best of health for the future.
Hi I had a type A in Feb 2016 I was 5 mtrs up a Eucalyptus tree at the time pruning it. Paramedics thought I had fell out of the tree and were treating me for back and neck ( I was drifting in and out of consciousness) so it was the scan that showed the problem. I had to have the valve replaced but they repaired the aorta. I'm 75 now and get out of breath easily and I've bever got back to how fit I was before 2016 I only mange to play tennis once a week now and not 3 but I feel good and haven't noticed any other changes in personality or anything, a bit calmer I suppose. I do have a dilated Sinus of Valsalva which may have been caused by the accident??? I never got any advice on getting my fitness back at the beginning. But yes follow the advice given here and good luck 🤞Best wishes
Good luck and best wishes to you too. I can't believe you were 5m up a tree. I was so lucky to be at home. I often think about if it had happened anywhere else. Thank you so much for responding. You are all helping so much with my recovery, hearing you stories are given me so much energy and inspiration. Thank you again, keep well
Hi I had a Type A aortic dissection on the 3rd April this year also ended up with a femoral to femoral bypass too as the false lumen had cut circulation to my left leg. It was completely out of the blue I had no symptoms at all and was just about to cycle home from work. I was taken to my local hospital (russells hall) and was then blue lighted to new cross and woke up 8 days later but thankfully woke up. I'm doing well back cycling albiet on an ebike, doing rehabilitation 3 days a week at action heart & back at work. There is a website aortic dissection awareness uk they have a good guide you can download, they also have a private Facebook group which is really good full of survivors and family members & offer good supportGood luck with your journey
Goodness Phil, good luck with your journey too. Sounds as though your doing so well after what you've been through since April and you're back to work already, that's incredible. There are so many knowledgeable people on here, I've learnt so much already. I think, when these events are totally unexpected we're so thankful to wake up, then the reality kicks in to how close we were to not waking up and with me, my mind plays tricks on me, remembering bizarre things in ICU which we're real and lots of memories that definitely weren't real. These memories are fading slowly thank goodness. I'm back at work part time and things are definitely getting easier. Just my mind that's holding me back at the moment. I'll get there. Like all of you, a day at a time 🙂
Hi farawaytreeI'm glad to hear thing are getting easier 🙂
I'd never heard of an aortic dissection till it happened to me. I am grateful for every day now (I know it sounds like a clichè) it's another day I shouldn't have 😉
I was sedated for 8 days I'm told every time they tried to bring me round I was distressed and was trying to pull pipes and wires out.
I have memories of being hdu which all felt like dreams I'm told some where real but many weren't, a nurse on hdu called these delirium
I've been lucky enough to get some 1 on 1 telephone counselling through action heart (my local rehab) which has helped me mentally I initially kept thinking about my mortality and how long will the femoral bypass & aorta repair last.
It may be worth asking you're Dr if there is any counselling available
HiYou're not on your own. I and I'm sure so many feel very similar to you. I also had no idea what an aorta was until this happened to me. It was such a massive shock and the hallucinations I still wonder what was real and what wasn't.
I'm waiting for my talking therapy from Barts which I'm hoping will unlock so much of my emotions, that have layed dormant since my aortic dissection. As so many say on here (I'm new to this community) we are all fighting every day, something new since our individual events. Every day is new and thank goodness we're here. Look after yourself
thanks. I should add getting to the point of living life as best I can takes effort and more humility. I was depressed after the AD, slow minded and foggy, and tentative. I went through physical therapy and started getting strength and confidence back and counseling. About 9 months after surgery I told my dr I didn’t feel right, physically or mentally, I was depressed. He said physically I can lots back and added “after what I had been through- I Should be depressed, it was as major a critical medical event as it gets. But I made it through”. He walked me to his office and gave me 3 names of shrinks who dealt with trauma. The first I met helped me lots. And opened my mind to accepting professional help for something I in essence knew nothing about. I highly recommend talking with a PTSD professional.
I had a planned surgery to replace my ascending aorta about 2 years ago. I heard stories of recovery within 6 months ... people swimming and dancing almost as soon as they were out of hospital... but it wasn't like that for me. The psychological shock for me was almost as dificult as the physical recovery. It dented my confidence a lot, I was anxious about dropping dead on the spot and had a really hard time coping with the image in my head of my body suffering a massive assault. I talked to a therapist about it, but it just took time. Two years after and I am physically OK almost as if it never happened and I am a lot less anxious. Although I still get emotional about it, this big shock came at a time when age (64) is showing me a little pain in the knees and back and my mobility is declining. It will get better and you will recover mentally and physically.... There aren't that many events and surgeries more hard core than open heart surgery... so it's to be expected that this will rock you to the foundation adn you will be changed. You got through it! .....It's a wonderful ife and we are lucky people ! !
We are so lucky, you're right, I'm definitely feeling better physically, it's just mentally I have to work through things. It has rocked my world but listening to you and others, today I'm gaining a stronger foundation to build on. Thank you all
Writing to you has prompted me to go over it again in my mind. It actually has brought it all back... you could say going through heavy surgery like this can lead to a type of PTSD and I felt a strange grief, last night as I was thinking baout it again what happened was I lost my aorta.... that'a a pretty crucial thing ot lose... I wanted PEARS and had my heart set on preserving my aorta but in the theatre it all changed and I came out losing my mind as well as a large part of my body. I think the feeling was a loss and an assault.... It's still there with me like a deep emotional hurt. I am alive and I can lead a regualr life so for now I'm good.. today is good.
Wow! I'm blown away by your words. I have no idea how to express how I feel, but what you have written I can definitely relate to. It's all been so traumatic. We are all so incredibly lucky to be alive and while physically we recover in time (our new normal) mentally seems to be a huge hurdle to scramble over for me. You're so right each day is better and better
Hi Farawaytree. I had a totally unexpected type A aortic dissection - mine was on the plane just landing in Bournemouth Airport, no previous symptoms, just a sharp tearing pain in my chest - this was at around 11pm on 24th April 2017. I don't know how long it was to be diagnosed by Bournemouth A&E, as I was more or less out of it, but by 5am 25th I was having emergency open heart surgery repairing the aorta and a replacement aortic valve, at Southampton Hospital that saved my life. I still have yearly CT scans with contrast to make sure the rest of my aorta is stable everywhere. I was 66 when this all happened and to be honest, it was more the mental side of things that took a long time to accept - the fact I almost died, facing my mortality! I was never given counselling but really wish I had been because even now it's still playing on my mind. I am so very happy I'm still here, but I'm definitely not the person I was before, hence I think we all need counselling after such a traumatic experience. I belong to the Aortic Dissection group on Facebook and it does help talking to people who've been through this too. I realize that I was extremely lucky as my journey was and still is a lot easier than a lot of people on there. Their moto is TIAGD - Today is a good day, and it definitely is. Your husband and family can also post on that site as it's hard for them as well and it does help them to share what they are feeling and going through too. Good luck and best wishes. TIAGD - we are all Warriors. Denise
Go get counselling, Petercat! You deserve it!! I had OHS & AVR in 2020 and counselling before & after helped a lot. Some heart clinics have specialist counsellors for heart people.
I can’t believe you were travelling at the time. I was so scared when it happened to me and I was lucky enough to be at home, my husband was here as well. I completely agree with the shock of facing your own mortality, maybe that’s something I still haven’t come to terms with. I like TIAGD, I shall use that each day, it’s brought a smile to my face and listening to all of you speaking so openly has helped me so much. I’m looking forward to my counselling, I’m on a waiting list which is fine, I feel very lucky that I have been offered counselling and will be able to just let go of all my feelings about what happened, at the moment I feel quite numb emotionally and not quite sure what to feel. Thank you for you story. Good luck and best wishes to you too. TIAGD worrier to worrier
Not sure that's quite right, either about the guidelines or about the proportion of dilated aortas linked to bicuspid valves.
One of the biggest case series, the paper by Kim et al from Massachusetts, published in 2016 as 'Risk of aortic dissection in the moderately dilated ascending aorta', found that in their population of more than 4,600 patients with aortas between 4.0 and 4.5cm, 12.6% of cases had bicuspid valves, so 87% did not. pubmed.ncbi.nlm.nih.gov/276...
In relation to size for operations, the latest guidelines from the American College of Cardiologists and American Heart Association, published in October 2022, recommend surgery at 5.5 cm but say it is reasonable for large aortic centres with multidisciplinary teams to offer surgery at 5.0 cm. So, in effect, 5.0 cm could/should be the point at which anyone is offered surgery regardless of whether their valve is bicuspid or not. acc.org/Guidelines/Hubs/Aor...
There has been a view that when a bicuspid valve needs to be replaced, then if the aorta is enlarged beyond 4.5 cm, that might be operated on at the same time. However, not all bicuspid valves need to be replaced.
There are other reasons - including family history of dissections, 'high risk' genetic markers, and the presence of symptoms such as chest pain when these have no other explanation - why surgery may be considered appropriate before 5.0 cm.
I agree that monitoring is needed; usually, a mix of echocardiograms, CT scans and MRI scans will be appropriate (I've had all three). Echos may be most relevant for bicuspid valves because they give the best information about valve function, though they're the least reliable when it comes to measuring the aorta.
Regardless of all the statistics, what matters most is that you look after yourself and stay well: all the best!
Thank you for the feedback, JulianM. I think we're in agreement on the most important points, monitoring and seeking information.
Regarding the relationship between BAV and dilation of the aorta, I had not seen the study stats you cited. I see that study concluded that 12.6% of a group with mildly dilated aorta had BAVs, but my statement was coming from the other side, suggesting that those with BAVs usually develop aortic aneurysm and increased risk of dissection. See ttps://ncbi.nlm.nih.gov/pmc/articl...
"There is an increased risk of thoracic aortic aneurysm and dissection (TAAD) in patients with BAV relative to those with three-leaflet aortic valves. As many as 75 % or more of patients with BAV will develop thoracic aortic aneurysm (TAA) (Tadros et al. 2009)."
i.e. Most people with BAVs will develop an aortic aneurysm, but most people with dilated aorta do not have BAVs.
On the subject of when surgery is indicated for an aneurysm, I found this to be a great explanation by a Cleveland Clinic surgeon: "Ascending Aortic Aneurysm Surgery: When To Have Surgery" youtu.be/oRu2DREcUeQ
These are sensitive topics for me too. I'm coming up on the 1 year anniversary of my SAVR. I was diagnosed with a BAV about 2 years ago and my cardio monitored it with echos and stepped them up to 6 month frequency. I crossed over into the severely stenotic category but was still asymptomatic. The echo also indicated that I had a dilated ascending aorta at 4.2 cm. I was then referred to a surgeon who let me know that, although I was still asymptomatic, I probably had a life expectancy of ~ 2 years if I did nothing. He had a cancelation the following week and offered the slot to me. I took it.
Totally agree with you on the limited accuracy of echo and CT for this measurement and they have to be taken with a grain of salt. Case in point, just prior to the surgery, the surgeon ordered a CT and it showed my aneurysm at 4.5 cm. He was then prepared to included that in his objectives for the surgery. When he got in there, he measured it "by hand" and got 4.0 cm. He decided not to do a repair but he did say that he "cinched" it up a bit...I guess that means he put in an extra stitch or two in the right place to tighten it. From his operative notes: "Preoperative CT scan reportedly showed that the ascending aorta was 4.5 cm; however, when I measured the aorta myself, it was only 4 cm."
I've had a couple of echos since the surgery and both indicated no change at ~4.1 cm. Keeping my fingers crossed!
It does sound like there was very good reason to get your valve seen to, when it was, and I do hope that your aorta is properly stable for years to come. But, as you say, monitoring will need to continue; hopefully, the frequency can be reduced over time.
My aorta is currently at 4.8 cm despite my very normal valve - and while it does seem to be stable for now, and it is just possible that medical treatment (irbesartan) might reduce the risks associated with it, there are no guarantees. Surgery, at 5.0, is the alternative strategy on offer, should it grow regardless.
Reading scans is definitely a specialist skill, the aorta is in constant motion, and it's remarkable that my own measurements - as done by the cardiologist and echo technicians - do show some consistency between echos and MRIs. But no surprise to hear that a surgeon found something different 'in the flesh', so to speak.
Hi there, Farawaytree. I had elective surgery for a dilated aorta in Sept 2020. I was 49 at the time. I've also a new aortic valve. I was so lucky to be symptomatic - I was wrecked tired all the time for no apparent reason and everything - standing at the bus stop! as I remember - felt like hard work. I was so lucky to get in to my cardiac clinic for an echo in autumn 2019, a few months before everything closed bc of covid!! Previous to this I was otherwise healthy but had an aortic heart murmur we were keeping an eye on. So anyway. Because of covid I didn't get to do post-op cardiac rehab. To be honest if you have the opportunity to do this, do it. I'm healthy thankfully but my fitness is not where it should be at my age (52). I've a friend who had multiple stents put in in 2021 I think - he did rehab and he finds he's in the best fitness of his life. He's 59. Can you do cardiac rehab? Also, I'm on a tiny amt of bisoprolol (1.25) for migraine so this may be a factor for me also... I might switch beta blockers at some point but it's been so awesome for me migraine-wise I'm loath to touch it! Very best wishes to you! You've been through it!!!
Also... I went for counselling, before and after the surgery. I was cocooning with my then 5yo (now 8yo) during lockdown, knowing this surgery was coming, so as you can imagine it was *stressful*. Counselling is apparently a big part of cardiac rehab - the thing of learning to trust your body again and that everything is ok. As I say I didn't do the rehab cos of lockdown but I'd still do it now if I was offered it.
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