Hello again

[themalteser]

Whilst here you have less choice, I.e a letter usually from the hospital saying you're having surgery. No interviewing surgeons or anaesthesiologists. Unless you are like me and plan to request specific surgeons etc, which you are allowed. However this approach is not embedded in the system and you usually get what you're given. (But have access to reviews etc and can request otherwise)

 

[Paleowoman]

Basically in UK they can't afford to do it earlier! That's a scary thought! Well hopefully you can prove me wrong.

Actually I believe they do it earlier in the UK ! I base that on my experience of having surgery way earlier than members here from the US, e.g. my valve area size was 0.9 when I was referred for surgery and I'm not a very big woman, whereas there's men on here (bigger body size, bigger hearts) from the US have valve area size of 0.7 and only being referred for surgery then ! Also in the US they seem to wait for symptoms to appear whereas in the UK they like to do surgery before symptoms show. When I complained to my GP that I thought I'd been referred for surgery too soon and told him about the US members here, he suggested that they wait longer in the US becasue there's more litigation in the US and once a doctor takes action, eg surgery, then they are open to litigation, hence waiting as long as possible. I don't know how true that is but it certainly seems like the US members here go for longer before surgery than the UK ones - only my observation, I might be wrong.

 

[themalteser]

Interesting Paleogirl - I do believe that surgeons in U.S are more up to date with recent techs etc. and some of them take real interest on BAV and aortopathology, like svensson, griepp etc. I know there are some advances in UK such as the aortic wrap developed by the Marfan engineer, but it takes a lot of time to get commissioned etc. it all depends on the quota. Example BAvs is not a high priority in UK and neighter aorta dilation, so they don't invest. Which I suppose makes economical sense in a way, but for people like us, who have the condition, is an issue. The waiting lists are ridiculous, I am over 4 months overdue for example. They have to see you in and out in x amount of time, to reach their targets, so usually, it's all quite rushed. Not much time to talk about concerns and you feel like you're taking their time. ... Sorry, I don't mean to sound negative, what I mean is that there is not much resources etc in UK for our condition. If it wasn't for me pushing to be reviewed a year, my GP would have left me with "oh, you got bicuspid aortic valve, nothing to worry about! ." By telephone!

 

[themalteser]

But also, in regards to my point, I was thinking that there are 2 reasons for someone to have their aorta replaced, 1. Could be the measurements location, as mentioned above, hence 46mm in root and 46mm in proximal ascendic might have different views and 2. The conservative approach by the system.

 

[AZ Don]

My valve is supposed to be repaired,no stenosis and only a small amount of leakage. Surgeon says the only cause for surgery is the aorta and he says it's not absolutely necessary and I'm on the cusp of needing it done. The ascending aneurysm is starting to stretch the proximal arch and I figure that the constant backflow of the leak is likely to further damage the leaflets so I decided to get it over with.

Well that is why the AHA Guidelines are only guidelines. Some situations require special consideration and it sounds like yours does. My view on this was that the risk from surgery was inevitable, but the risk of living with an aneurysm was something that could be mitigated by having surgery sooner. I met the guidelines at the time so the point was moot but there is no question that having earlier surgery lowers the combined risk from the aneurysm and surgery. The risk of dissection prior to the typical surgical criteria is not trivial. For reference see this article, starting at about figure 11: http://www.sciencedirect.com/science/article/pii/S0735109709040753

 

[cldlhd]

Thanks for the link, interesting points throughout. My surgeon says dissection or rupture is unlikely but not unheard of at my size. Combine that with the normalcy pattern people naturally have-never killed me before so why would it today?- and my desire to be able to do what I want made my decision.

 

[themalteser]

Cldlhd, are you having second thoughts about surgery or you're saying that you are ready to do the surgery?

 

[cldlhd]

I'm getting it done, I'm also having some 2nd thoughts which I imagine is normal. Especially since I have no symptoms and have been told I can wait but I'm going to go thru with it.

 

[valdab]

That's funny Valdab, that will definitely be a one heck of an aorta we do share exactly the same statistics. Interesting! What did doctors tell you? ... I am so anxious, can't get off the net searching now!

A year ago it appeared that my aorta had increased significantly so I was sent to see the (prospective) surgeon and have an MRI. The MRI came back with the same measurement I had shown since diagnosis (4.6cm) but when I met with the surgeon he asked me what I wanted to do. (private healthcare in the UK) I drew myself up to my full height, looked him squarely in the eyes (not easy as he is disarmingly handsome) and asked what he would advise if it was his wife/sister. He said he would wait. So that is what I have chosen to do. My measurement remains the same after 4 years and I have no stenosis or regurgitation. I go through periods of getting completely freaked and imagining all sorts of symptoms but then I manage to forget about it for a while and get on with living my life.

 

[Northernlights]

Dear themalteser
To be fair to the NHS, aortic surgery and valve surgery are actually at a very high level of expertise in the UK ( after all, the Bentall and Yacoub procedures were devised by UK surgeons) , though you need to go to a specialised hospital - as of course you would in the US. So really I wouldn't worry that you will get worse treatment - though I absolutely agree that waiting lists are a worsening problem at present with the coalition cuts. The European and American guidelines are very close, and the 2014 AHA/ACC guidelines have actually got more conservative in some aspects, as AZ Don notes! It's not to do with money but with the perception of risk to the patient, when many people who are operated on would never have had an aortic dissection, and surgery obviously carries its own problems. There was an interesting survey of American surgeons which showed they were more aggressive than their own guidelines!

In your own case , with a root of 46 mm which has stayed stable for 4 years and a functioning valve, it's unlikely that it will need repair for a long time, so I guess it's not unreasonable that your GP didn't think an annual echo was clinically necessary. When it came to surgery on my bicuspid valve, the coalition cuts did mean I had to wait longer than I would have wished, but my care at surgery in December was outstandingly good in every respect. The NHS as a whole could certainly do with more funding, but I'm not sure why you think BAV and aortic disease are not properly treated or enough of a priority here.
Anyway, very best wishes and I hope your news next week is reassuring - though I see by your earlier posts that even Magdi Yacoub couldn't reassure you! I'm so glad your anxiety levels have improved. Extreme anxiety is a very severe burden, much more so than the valve itself.

 

[themalteser]

Hi Northernlights, thank you for your great post, very helpful. I just want to be clear, I am not saying that the NHS are poor, I'm saying that they might not be as conservative as perhaps the U.S. As also with up to date tech stuff etc. it does depend on the hospital aswell, as you said, specialist centres which are not in every location.

I personally had a bad experience back in 09 when I found out about my condition, I don't feel that my GP was correct saying that I do not need any follow ups. I had to go through a lot of hassle, to learn that I actually need regular follow ups and so my kids as they all have larger aortas. I don't feel that was acceptable. I wonder how many people get the same review. But, then again, this is not a reflection of the NHS. I do feel that BAV is just widely, not understood very well with a lot of GPs etc, and hence why probably, my old GP thought it's okay if I never get followed up in my life. Since then, apart from the waiting lists, I found a great service and a great cardiologist and also a lot of help.

My anxiety itself makes me think a lot. My post about the NHS vs US etc, is more of a reassurance question. I am questioning whether, either the NHS is relaxed, because of economy issues, or the US are very conservative, for business related issues or neither.

Apologies, but this is just a peak period for my anxiety and a lot of different thoughts come to my mind.

About Mr Yacoub, he is a great professor and he definitely reassured me, but, I was still learning about my condition and was still in shock to find out that I have a condition at that time.

Thank you again.

 

[cldlhd]

If you don't mind me asking when you say tour kids have larger aortas do you know if they have BAV or not? The reason I'm interested is because I have an 8 yr old son. He had an echo a few yrs back and when I was diagnosed with my BAV we had it double checked and fortunately his valve is normal Although I've read that if the BAV gene is in the family even without a BAV aneurysms could be more likely than the general poplulation. I would imagine the fact that his valve is normal it would be less likely but any info you're inclined to share would be appreciated.

 

[themalteser]

Hi cldhld - happy to answer any question about this. All my 3 kids have larger aortas, but no BAV. Our cardiologist wants to check them every 3 years for the time being.

 

[Northernlights]

Hi themalteser
There is absolutely nothing to apologise for! You can have good and bad experiences within any system, but I can entirely understand how upsetting it must have been to have a GP who thought you didn't need ANY follow-up! That's extraordinary. I'm glad you've got better care now. I think it's best having a younger GP as they tend to be more up-to-date, but I know you sometimes have to push for a referral. It must have been a huge shock at first - I only found I had a BAV 10 years ago when I was 50, much easier to deal with. Probably the best solution from all aspects is diagnosis from early childhood, as children just take things for granted. I do think though that the BAV Foundation's website, though it means well, is needlessly scare-mongering.

 

[themalteser]

I am so glad that you think the same about the BAV website, Northernlights. I felt that it portrayed BAV as a hopeless case.
I have a young GP now, who also, a few months ago told me, that he has BAV! So I find talking to him really helpful. But cannot really see him regularly !

May I kindly ask you how you found out about your BAV? were you also in the waiting list or you had surgery straight away?

Very true that the best solution is childhood diagnosis, as it becomes a norm. When I found out, it was horrible. Still is, especially that I have to see a cardiologist every year, but I feel that I matured a bit more about managing it, I hope.

 

[cldlhd]

Hi cldhld - happy to answer any question about this. All my 3 kids have larger aortas, but no BAV. Our cardiologist wants to check them every 3 years for the time being.

Thanks for the response . I'm not entirely sure how much more likely an aneurysm is in children of BAV parents if the child doesn't have BAV but I guess we'll have my son checked out to be on the safe side. I was wondering how old your kids are and what age you discovered their aortas were larger. I don't mean to pry so feel free to not answer if you don't want to, thanks

 

[themalteser]

Hi Cldhld - I really don't mind answering any question about this subject, that's why I'm in this forum.

My kids were 2 years old (twins) and my eldest was 6 years. They are now 5 years and 9. So they should be due again a scan soon.

 

[cldlhd]

Thanks for the info

 

[Northernlights]

Hi themalteser
My murmur was noticed 20 years ago, but an echo didn't show anything. 10 years later echocardiography had advanced, and another echo showed a BAV and mild / moderate stenosis, and I so I knew from then on that I would need a replacement sometime, which turned out to be this year. It wasn't good timing in that the waiting- lists have worsened a lot this year, but on the plus side the wait gave me time to change my mind about the procedure I wanted, and change surgeons. It also meant that after all the delays and a cancellation, during which I had become quite symptomatic, I was so impatient to have my surgery that I was delighted to finally get into hospital!