Question.

[themalteser]

So I talked to a surgeon here in the UK, who specialises on the PEARS procedure. He reviewed my MRI scan from last February and he said that I may be a suitable PEARS candidate. However, as per NHS regulations, he asked me to talk to my cardiologist and get a referral for further consultations.

I talked to my cardiologist, however, he said that for the time being he won't refer me, as my aorta remained quite stable for the last 5 years. He said that I am no where near surgery with my dimensions and my aorta might remain stable for a very long time.

So I informed the surgeon and he said that its a wise decision from my cardiologist and that he entirely agrees.

I get confused, why at 4.5cm I am no where near intervention? I mean, 5mm is really, not that much. Also, it is frustrating that in 2015 there is still confusion about this condition. (Or maybe I am complicating things). I completely think that my surgeon is being very sensible and Very reassuring, especially when I am also on Irbesartan which is proving some great results on dilated aortas. However, part of me wanted to "fix" this so maybe I can relax!

 

[cldlhd]

Well to is the difference between 4.5 and 5.0 cm might not seem like much but we're not surgeons or cardiologists. I imagine some of the resistance could be due to guidelines and cost control. I know it's easy for me to say but if they seem to think you're ok at this point I'd try not to worry about it too much.

 

[themalteser]

I go through cycles cldlhd. I spend 2 months ok then I have a terrible week worrying. Then I forget again and continue in the same cycle. Probably you notice my activity in valvereplaceme. I spend time not asking anything, then suddenly I have all these questions.

How are you doing if you don't mind me asking?

 

[valdab]

I've just had my annual once over. Also in the UK, privately in London. An echo suggested an increase in my ascending aorta from 4.6 to 4.8. Follow up MRI confirmed this. Just received the report from the MRI technician who says 'no significant change since previous MRI in 2013'. As I edge ever closer to 5cm, I assumed 2mm would be classed as a significant change. As my valve appears to be fine I am very interested in the PEARS procedure. Like you I lurch from feeling reasonably sanguine to spells of acute anxiety. Have to wonder if I shouldn't just get it over and done with....

 

[themalteser]

Hi Valdab - I completely agree. Huge part of me, obviously, don't want surgery and at the same time I want to sort it out. But not sure what's giving me the most anxiety, an untoward event on my aorta or facing surgery and life after surgery or just the thought that I have this condition, makes me feel different than other healthy people around me!

Are you on Irbesartan medication? Ask your cardio if you're not. Apparently, the results are achieved if you take the highest dose, I.e 300mg pd. I have another MRI booked 2nd December, so I'll find out whether there are any changes and will update.

In regards to PEARS, I recommend you talking to Tal. If you send him an email he will reply, he is a real
Gentleman. He will probably ask you for a referral to one of the cardiac surgeons listed in the PEARS website.

I hate the word non significant change. I mean, is there a change or not or is it unclear.

 

[valdab]

I thought I was fairly robust til this came along and I go through periods of being utterly terrified. It's hard to explain to my husband the degree of fear that kicks in. I'm not on blood pressure medication because it generally hovers around 90/60 and it was thought that lowering it further might not be a smart move.
I'm now at the age (57) where a significant number of people I know or know of are having serious health issues. I do try to tell myself that it could be far worse.
Is Tal a patient? I found somebody of that name but he doesn't appear to have been very active recently. Dont want to contact the wrong chap!
Good luck with your MRI - I don't post very much but I always follow your progress with interest as we are in a similar situation I think (although I've now leapfrogged a bit further forward it seems)

 

[themalteser]

Thank you Valdab. As you say, it could be far worse I suppose. Tal Golsworthy is the person who invented the PEARS procedure. He has Marfams syndrome, he is engineer and didnt want to be on blood thinners, so invented a wrap for his aort la which is now being performed in London's hospitals and some in Belgium I believe. An incredible chap.

You can contact him using the extent form below and he will get back to you. I am sure he will ask you to get a referral to see one of the surgeons in Londom. The procedure, if referred, is also free under the NHS. I cannot be referred yet as my cardiologist thinks I should carry on as I am.

Extent contact: http://www.exstent.com/contact.php

 

[valdab]

What a fascinating man and an incredible story. Many thanks for the information. My cardiologist has inferred that I am to carry on as before with regular follow ups but he is going to speak with the surgeon to get his thoughts. I imagine I could push for a referral if I wanted one.
On the other hand..... 4.8 is still below the threshold so I guess that I should a) be prepared for 6 monthly checkups instead of annual and b) wait to see what the surgeon's advice is. If he recommends surgery then I will definitely look into this. I will send off an enquiry anyway and thanks again for your help

 

[ALLBETTERNOW!]

It'd fixable at least. And odds are in our favor!

 

[ALLBETTERNOW!]

I've just had my annual once over. Also in the UK, privately in London. An echo suggested an increase in my ascending aorta from 4.6 to 4.8. Follow up MRI confirmed this. Just received the report from the MRI technician who says 'no significant change since previous MRI in 2013'. As I edge ever closer to 5cm, I assumed 2mm would be classed as a significant change. As my valve appears to be fine I am very interested in the PEARS procedure. Like you I lurch from feeling reasonably sanguine to spells of acute anxiety. Have to wonder if I shouldn't just get it over and done with....

I really pushed to get my surgery I hated living with my 4.9 aneurysms. What's a mm between friends?

 

[cldlhd]

I go through cycles cldlhd. I spend 2 months ok then I have a terrible week worrying. Then I forget again and continue in the same cycle. Probably you notice my activity in valvereplaceme. I spend time not asking anything, then suddenly I have all these questions.

How are you doing if you don't mind me asking?

Thanks for asking , I'm doing great, 9 months post surgery yesterday. I can see the benefits of the PEARS procedure but even though my valve was considered good -trace leakage- when the surgeon was in there replacing my aneurysm he did a little "tuneup" on the valve and my post surgery echo showed zero leakage so I can also see the benefit of a highly trained and experienced surgeon getting his eyes in there . As a retired co worker of mine used to say "the proof is in the digging". He was referring to water mains and whether or not their traced locations ended up being accurate and not in reference to anything cardiac related but to my mind it's analogous.

 

[valdab]

I really pushed to get my surgery I hated living with my 4.9 aneurysms. What's a mm between friends?

I know this to be true but it's slightly easier to embrace when you're on the other side of surgery

 

[ALLBETTERNOW!]

I know this to be true but it's slightly easier to embrace when you're on the other side of surgery

Absolutely, it's a tough call no matter what. I thought living in 6 month intervals after being out of circulation for a year after the stroke was just too anxiety producing got to me.

 

[AmyBL]

Hi everyone! Themalteser, I believe I sent you an email a few years ago and our measurements were about the same. I will be having my surgery in mid January of 2016.

When I learned that the surgeon thought it was time for the aneurysm repair, my immediate emotional response was intense relief. That feeling has not changed much over the past month or so. A round the same time, I learned a dear friend of mine was diagnosed with lung cancer. She is going through so much with the chemo and radiation and her chance of survival is pretty low -- 20%. After hearing about her situation, I am grateful that I have something that can be repaired.

I am get frightened as it approaches, the surgery, but for now, I am steady.

Amy

 

[cldlhd]

I know this to be true but it's slightly easier to embrace when you're on the other side of surgery ; )

No doubt about that , before I had my surgery whenever I told anyone about my aneurysm and they gave me a version of " if it was me I'd just get the surgery over with" I would always think or say "that's advice that's easier to give than to take".

 

[tjay]

Is PEARS procedure only available in the UK? This procedure appears too good to be true. Why has it not become mainstream and available in the US, when it can be the answer to all our worries with dilated aortas e.g. 4.8cm etc?? Why not reinforce aorta to avoid any possibility of rapture or dissection? Cost? Expertise? Safety? Too new to have become a standard of care?

 

[valdab]

Is PEARS procedure only available in the UK? This procedure appears too good to be true. Why has it not become mainstream and available in the US, when it can be the answer to all our worries with dilated aortas e.g. 4.8cm etc?? Why not reinforce aorta to avoid any possibility of rapture or dissection? Cost? Expertise? Safety? Too new to have become a standard of care?

I believe it is done in the UK and Belgium at present. It does indeed seem like the answer to my prayers - currently waiting to find out more

 

[valdab]

No doubt about that , before I had my surgery whenever I told anyone about my aneurysm and they gave me a version of " if it was me I'd just get the surgery over with" I would always think or say "that's advice that's easier to give than to take".

Oddly enough, that's what all my friends tell me too. It's not them under the knife though is it?

 

[cldlhd]

Oddly enough, that's what all my friends tell me too. It's not them under the knife though is it?

It is much more difficult to go through with it, obviously, but now that I did it is a relief. That PEARS procedure does look interesting. I haven't read extensively on it but I figure the main advantages are no heart -lung machine needed, the endothelia is left intact ( although supposedly it recoats the dacron graft post surgery ) and there's no slicing and sewing on the native bits. The only disadvantage I see is the surgeon doesn't get eyes on the valve . I was told my bav was in great shape-no stenosis and only trace leakage-but once in there he gave it a few stitches and a decalcifying treatment. The echo I had a few days post surgery showed no leakage. I'm having another in January ,almost 1 yr later, so I guess I'll see how it's "settled in". If those advantages are worth having the 'traditional' surgery who knows? If what he did to my valve prevents the trace leakage from progressing down the road then I say yes but since there's no way to know how my valve would have turned out if untouched I'll never know for sure.
One thing for sure is that the technology will continue to improve so a case could be made for waiting but obviously if one waits too long then the perfect becomes the enemy of the good.

 

[themalteser]

The confusion is that certain data states that, it is not clear as to when surgery is recommended. It seems that the magic point is always described as 6cm for the ascending aorta, when there is a significant risk of rupture, dissection etc. and therefore, at 5-5cm, surgery is recommended, to be on the safe side (Unless valve is not working well, in which case, to avoid any hassle, if aorta is 4.5 cm than they will replace that at the same time they replace the valve). However 5 cm is also when the % of untoward events increases by approximately 1% a year and since surgery risk is less than 1%, the benefit of surgery is greater than the risk. On the other hand publication states that it is not clear as to when exactly should surgery be performed, because, there is not enough data to determine the size at which intervention should be considered. Some of the publications, do not differentiate between, sinus of valsalva and ascending aorta, and use "ascending aorta" interchangeably. The ascending part of the aorta is smaller than the sinus of valsalva and therefore, the ratio of dilation will be lower at the sinuses than the ascending.

If there is not enough data etc, then how do they know that my aorta is not at risk? or on the other hand, how do they know whether my aorta is just that size, its slightly enlarged than the norm and this is my norm. There is also so many differences in the way they measure the aorta, in addition, machines produces different results etc. Which all adds to the confusion factor.
In my mind, if an aorta is enlarged, valve is slightly leaking, I have an element of sinus effacement, cannot participate in high endurance sports and suffer from extreme anxiety, to the point that I cannot really live happy, then surgery must, in a way, be an answer to this and PEARS should be a no brainer.

The problem with PEARS is that, it has been tested more in 'Marfan' syndrome patients, who have no issues with the aortic valve. It has also been tested with some bicuspids as well, but probably not as much as bicuspids. So what will happen if the valve starts to leak significantly? Can they operate etc?. The good news is that, the professionals here in the UK, believe that bicuspids will benefit hugely from this procedure and should be the standard. Example, my cardiologist is not against it, he is just being sensible in that my aorta remained stable for 5 years and it could stay as is, so I guess his approach is more sensible than my anxiety that 5 mm is not too far away!

In terms of costs etc, I don't know how it compares, however, it probably, in the long run, carries less cost than the annual echos, MRIs, medical management, consultant fees, depression and anxiety counseling etc. So not sure why its not in the U.S. as yet. It will still carry monitoring costs, but will put the patient mind at rest. Expertise is an issue as well, but this could easily be solved, in terms of safety, they have investigated so many patient years and its considered a very safe procedure. There is no cutting of the aorta involved, no bypass machines etc. The only challenge is how they go around the coronary arteries, as Professor Tom Treasure describes in his video. There has been only 1 death since the procedure, but its believed that he had another inherited condition. He also had Marfans with extreme pectus excavatum.

I would, if I know it increased by another mm, try to convince my cardiologist that I want this procedure done, but, at the same time, I also hope somehow that the Irbesartan is doing something good with my aorta as research is promising. Again, Irbesartan has been tested with Marfans more than bicuspids.

There is another procedure in the U.S. named the florida sleeve, which I believe is very similar to the PEARS procedure. I'll try and have a look at this.