Thoracic aortic aneurysm.

[Bananacar]

I have an aortic aneurysm and a dissected descending aortic aneurysm. I have declined surgery and wonder if there is anyone else in the same position . Everyone seems to have had or is awaiting surgery and I feel a bit on my own with this. Is it very unusual to decline surgery?

[Masters69]

I too have a dilated thoratic aortic root at 5.1cm I will be also refusing surgery as I have weak lungs and other heart issues which will make my recovery slim. I have scan in December and appointment with cardiologist in January see what consultant advices

[Bananacar in reply to Masters69]

I too have other issues which would make recovery difficult. I have read lots about the procedures and their outcomes. Everyone is different and providing you make the decision from a position of knowledge I think it is up to the individual. When I was first diagnosed I was afraid of being swept along but the Consultant told me that nothing would happen without my permission. Surgeons seem to take offence when you refuse their services . I don't know how old you are [ I am 76] but if you feel like me that you have had a fair crack of the whip then you can take what life deals out. I really hope all goes well for you in December. Enjoy your family and your life as I intend to do.

[Masters69 in reply to Bananacar]

I am 54 I was a very active spontaneous person but with all the health problems my life has become a standstill. Going through the open heart even if it all goes well and i recover does not mean all my other health issues will still be there. This is why as you have said let life deal with what ever time o have left.

[Bananacar in reply to Masters69]

I could not have put it better myself, quality of life is more important then length of life. I wish you all the best .

[Masters69 in reply to Bananacar]

Thanks. all the best you aswell

[Bananacar in reply to Masters69]

How are you getting along? I never seem to hear how anyone is progressing.

[Masters69 in reply to Bananacar]

In January I had 6 month echocardiogram in the community which gave under estimated results. I went abroad in February and reaktive recommended a reputable heart hospital and had a echocardiogram and results came up at 5:2cm and number other things I was unaware of. I came back to uk contacted my cardiologist and explained the results he agreed with under estimated results of echocardiogram from community dr. And said I will be sent appointment for a another echocardiogram and if it has reached 5.5cm then they will have refer my for OHS . So still waiting for scan.

[Bananacar in reply to Masters69]

Are you still of the opinion you will not have OHS? You said in your earlier post that you had other issues. I have not had any contact from either the cardiologist or the consultant surgeon since my decision to turn down surgery. The ct scan I was supposed to have in January never materialised so I have no idea if my aneurysms have got worse or not.

[Masters69 in reply to Bananacar]

Yes I will not be having the ohs. Recently I have been diagnosed with prostrate with above borderline antigen levels. As you mentioned before just gonna live quality of life rather become dependent on others . How are you coping with your health

[Bananacar in reply to Masters69]

Not too bad, finding walking gets harder and I am very tired all the time. I try to do a few jobs everyday but am exhausted by lunchtime. I do find if I wake in the night, which is most nights ! I am very conscious of my aches and pains and the old brain ticks over. When you have a serious illness it is a constant battle to try to live a normal life. Trying to be cheerful when sometimes you feel like giving up is hard. I feel very guilty that I can't do what I used to, but perhaps that's just getting old. Anyway I just try to keep calm and carry on, I hope you are coping with all your problems, you do seem to have cornered the market in medical issues ! You have helped me in that it is good to talk with someone who is in the same boat, I hope you are getting support from the medics, it is not very plentiful these days. Take care and good luck.

[Masters69 in reply to Bananacar]

I can understand back pain and breathlessness too. When I do some gardening I have rest every 5/10 minutes. It’s frustrating that you cannot do simple every task. We just have to be strong and carry on to best we can.

[Bananacar in reply to Masters69]

I also find bending down to pick things up makes me dizzy. I feel like a beached whale sometimes. It takes so long to do anything too, just unpacking shopping is a big deal.

[Masters69 in reply to Bananacar]

Ah dizzinesses. I get dizzy after getting from sitting after few minutes bending vertigo ruled by ent had a mri scan all clear but they never mentioned it could heart related. Do you think it’s due to dilated aorta?

[Bananacar in reply to Masters69]

Who knows, could be blood pressure, mine is low.

[Masters69 in reply to Bananacar]

Currently with taking spironoctal my bp seems to be under control fingers cross.

[Davey77]

Not sure about the surgery aspect, but some doctors forget to say that this condition can run in families and you need to be aware of this. Although her brother had the condition, my mother was being treated for digestive problems right up to the point where it burst and she was too old to survive the surgery. It was her surgeon that recommended the family get checked.

[Bananacar in reply to Davey77]

I have read about this on the Web, no one said a word about it to me . I have spoken to my daughters about it and to mention my conditions if they ever have any symptoms in the future. My father died from a heart condition but we never really knew the details, this was before ct scans and the like, so it's possible that I inherited it from him. All my family, grandparents and uncles had heart problems so it may indeed be the case.

[Rosie1066]

Personally, I would never decline surgery for aneurysms - I’ve see two members of our family die because of them and I have an aortic aneurysm myself of 3.8 which is being monitored plus I have other heart problems too.

[Maxyz3]

Don't put off Surgery ! My husband had a abdominal aortic aunrismthey are like garden hoses and and it was getting bigger and if left unfixed it would burst and kill him instantly, no time to even get medical help if that happened. They are silent but if left not fixed they are deadly.

[Bananacar in reply to Maxyz3]

My aneurysms are thoracic [ chest] not abdominal. Very different.

[annpavitt250448]

I personally wouldn't not have surgery. My husband had an abdominal aortic aneurysms which was found by chance. Had a graft and that was 15 years ago. If he had left it be probably wouldn't be here now. My daughter's father in law had one which was not detected, and burst. He was very lucky to survive, but spent months in hospital.

[Bananacar in reply to annpavitt250448]

My aneurysms are thoracic not abdominal, I also have valve problems.

[JulianM]

You are certainly not alone in living with a medically managed dissection. I would recommend you to get in touch with Aortic Dissection Awareness UK and Ireland: it's a patient-led support group and charity for dissection survivors, which has an active buddy group, publishes a survivors guide , and organises meetings where I have met and heard from people who are in your situation. Surgery has certainly saved many of the members' lives, but it's not everything, and not everyone needs it.

Everyone is individual: in general, it's definitely better to have surgery, if you are going to have it, at a time of your own and your doctors' choosing, rather than in emergency. However, the right decision for you is for you to make, and it's your values and priorities that matter. Wishing you the very best, regardless!

[Bananacar in reply to JulianM]

I would not have surgery even in an emergency. I have discussed this with my family at length and they respect my wishes.

[JulianM in reply to Bananacar]

Very glad you have had those discussions, they're important. Putting advance directives in place and carrying 'in case of emergency' contact details on your phone, in your wallet, whatever makes most sense for you (bracelets are still a step too far for me) can also be appropriate and helpful. In relation to your medical records, it's important to have your preferences noted; emergency services can and should be able to access those records if you are taken ill; your NHS number on an emergency card would help them. I'm a big believer in assessing risks with eyes open, preparing for the worst but then hoping for the best and getting on with things.

I'm certainly not trying to push you towards surgery, but I do know that many people who could have survived dissections fail to do so because their condition is misdiagnosed and not managed vigorously enough. That's why there's the emphasis on getting people to CT scans and specialist teams ... I have met some of the families/partners of people who could have survived but didn't; I understand their perspective too.

[Bananacar]

My descending aneurysm was already dissected when I was diagnosed although I have never had any trauma or pain.