Upcoming annual.

[valdab]

Hi malteser - our situations are quite similar. My measurements vary between 46mm and 47mm. I see Prof Pepper in London who overseas PEARS. I have also communicated with Tal Goldsworthy who agreed with Prof Pepper's assessment.
The Prof's view is that as I have no other issues (regurgitation, stenosis) it is best to wait until the valve is definitely increasing in size. My previous consultant also didn't want to operate as the measurement remained steady. Just another opinion for you.

 

[pellicle]

Hi

Sorry - duplicate below. Couldn't delete!

indeed, this is a frustrating aspect of this "BB software", what you can do however is edit it down to a minimal and just leave "duplicate of post, unable to delete" ... if you happen to be so inclined ;-)

... on the valve, yes, I also share the view that its best to wait until it is actually threatening. There can be value in learning about yourself in that period of time.

Best Wishes

 

[valdab]

thanks Pellicle - those words resonate. Learning about yourself. Life is full of risk. I take a risk when getting on a plane, crossing the road etc. And it's not as if the alternative is immortality. It's taken me a long time to reach this philosophical state of affairs. If three experts are telling me to wait, then what profit is there in me obsessing over what may or may not happen and seeking out a specialist who will tell me otherwise.

It has probably helped my mindset that my photography now keeps me so ludicrously busy I don't have time for the obsessive research that used to occupy my time when first diagnosed.

A friend of mine (57) died suddenly on the ski slopes earlier this year. Not, as was originally thought, from careless off-piste activity. Turned out to be an undiagnosed brain aneurysm. At least we all know what we are dealing with and can make the appropriate lifestyle changes to lengthen our odds

 

[pellicle]

Hi

thanks Pellicle - those words resonate. Learning about yourself. Life is full of risk. I take a risk when getting on a plane, crossing the road etc. And it's not as if the alternative is immortality. It's taken me a long time to reach this philosophical state of affairs. If three experts are telling me to wait, then what profit is there in me obsessing over what may or may not happen and seeking out a specialist who will tell me otherwise.

exactly, and well phrased. And few do actually reach that epiphany ...

I learned early (like I grew up knowing) that I may die early. I was diagnosed at 5 and in 1969 this "valve surgery" was pretty new and risky stuff.

I had a good friend die of cancer at 20 and my wife die unexpectedly a few years back ... to be alive is to face the certainty of death. People call that morbid, I call it sensible. Sensible because I know that I've got this opportunity. I know it better than many because I've had the plate almost removed from my table a few times now.

Also, its prudent to wait to "see what else may crop up" that they can "fix while they are in there"

It has probably helped my mindset that my photography now keeps me so ludicrously busy I don't have time for the obsessive research that used to occupy my time when first diagnosed.

I don't know if you run a business, but (assuming you do) its being busy with photography that has seen me only do it as a business once and for a year ... I would hate to turn what I love into a grind.
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/5\/4039\/4345438331_9b51ea979b_o.jpg"}[/IMG2]


It was a very cold day and as you may imagine it takes some dedication to put naked hands onto alluminium knobs to adjust all the movements on an LF camera ... in -15C (also that image should be quite large, right click and open in new tab)

A friend of mine (57) died suddenly on the ski slopes earlier this year. Not, as was originally thought, from careless off-piste activity. Turned out to be an undiagnosed brain aneurysm. At least we all know what we are dealing with and can make the appropriate lifestyle changes to lengthen our odds

true, and also we can decide that what we do is so much who we are that while we take precautions and enact systems for safety : we still do it.

I was told by my surgeon that I should stop riding my motorbike because being on warfarin would make me more likely to die from an aneurysm in the case of a head trauma. I have not stopped riding, but I do follow the philosophy of :
There are old motorcylists
There are bold motorcyclists
But there are no old bold motorcyclists.

I leave "bold" to the young that I photograph ;-) [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/5\/4299\/36209385735_3a567ec84f_b.jpg"}[/IMG2]


Best Wishes

 

[valdab]

I don't know if you run a business, but (assuming you do) its being busy with photography that has seen me only do it as a business once and for a year ... I would hate to turn what I love into a grind.
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/5\/4039\/4345438331_9b51ea979b_o.jpg"}[/IMG2]


I teach and increasingly exhibit. I am far busier than I would like but when opportunities present themselves for solo exhibitions etc, a combination of ego and the fear that I might not be offered the opportunity again, results in me taking on far more than I can actually cope with

Love your photo - beautiful tranquility and gloriously soft light. I struggle in sub zero temperatures this days, much as I love the landscape. I do teach in Scotland in January however so the eternal quest for warm base layers continues

And keep on riding your bike. I am fortunate that my activity of choice is brisk dog walking and swimming. I went off skiing before my diagnosis when I took a tumble and lost confidence. It must be tough for those who really enjoy, say, weightlifting.

 

[user 16827]

It must be tough for those who really enjoy, say, weightlifting.

Dunno if anyone is familiar with CT Fletcher, he had his AV replaced , Multiple world record holder.

I love the guy But be 'warned' he can curse for fun....

Youtube is full of him.

I was a regional powerlifting champion in the 90s i still weight train but avoid maximal lifts these days

 

[themalteser]

Amazing photos, Pellicle!
Valdab, your situation is definitely similar to mine! It's exactly what I think as well, why rush into surgery when everything has remained stable? do you take any medication and are you on yearly follow-ups ? Maybe we should get in touch before I move abroad, perhaps by phone or something, if its okay with you?

Below is an email from 2015...

My email to the cardiologist.
"Dear Dr. S
I hope that you are well. May I kindly ask for your opinion, please. I recently got in touch with professor Pepper about the PEARS procedure, as I seen this on TED talks and wanted some more information. Professor Pepper has kindly reviewed my MRI report from March and he said that I could potentially be a suitable candidate for PEARS, but he wants me to have a special CT scan at the Royal Brompton and further assessment if you refer me.

I am happy to wait, since you started me on Irbesartan last February and continue with the current treatment plan, but if you think that it will be beneficial for me to get assessed by Professor Pepper for the PEARS procedure, then your opinion will be much appreciated and whether I need to talk to you or my GP for referral."

His response.
"Our last MRI and echo suggest that you are not nearly at the level where a PEARS ( or any other intervention is needed). Your aorta has been quite stable for several years and may not change for a long time. I wouldn't refer you at this stage although if your aorta was rapidly enlarging then this would be possible. I have had several patients who have undergone PEARS with success and it is certainly an option in the future. "


So this is why the news rocked my boat! I am confused.

I am dreaming about surgery, waking up worrying about little things like, stretching, going to the toilet, raising my voice, etc. That it will put pressure on my aorta. It is exhausting, and the propranolol plus the irbesartan do not help.

I am moving to the Netherlands. I am packing, etc. But the thought of starting a new job, in a new country, etc. is making me feel overwhelmed! I don't want to take more pills!

My worry is that, if I leave as is, then it will dissect and I will die. So what is the point in even trying to go abroad, start a new job, pick a hobby, etc. etc.

If I go to surgery, then I feel that I will also die. It's not just fear of dying, its almost knowing that I will die. Has anyone felt like this? I worry about waking up during anaesthesia, my heart will stop, I will have a stroke, have a heart attack after, go to a non-reversible a-fib, allergic reaction.

So, because of these thoughts, I am distancing from my family, friends etc. I try to wake up positive, but my mind is full of thoughts. I'm back to how I was a couple of years ago. I managed to sort this out, through the help of this forum (Pellicle, your posts! ) and through reading and educating my self.

Maybe I just need to give it some time. Man up, suck it up and move on.

 

[pellicle]

Hi

I teach and increasingly exhibit. I am far busier than I would like ...

Ahh, well at least that is good clean creative adrenaline

And keep on riding your bike.

I do.

This is the other day, riding back up to the mountain area wher I live now.

https://youtu.be/_Z52oL21W3o

Its an exhilarating ride climbing about 800 meters in 20km of road

Best Wishes

 

[pellicle]

So this is why the news rocked my boat! I am confused.

My worry is that, if I leave as is, then it will dissect and I will die. So what is the point in even trying to go abroad, start a new job, pick a hobby, etc. etc.

Well as it says irs stable, so if they arent worried then perhaps you shouldn't? As they say, it may remain enlarged without causing a problem for some time.

If you are concerned that they are mistaken, you should seek a second opinion.

When they identified my aneurysm it was already well into critical. So they operated in a couple of months.

Despite doing stupid **** around the house I remained ok...

https://youtu.be/mU412nELtdI

My wife had a few anxious moments worrying, but I reckoned that if they didn't need to do it that day, then I was ok to act as they had guide me

 

[themalteser]

Well as it says irs stable, so if they arent worried then perhaps you shouldn't? As they say, it may remain enlarged without causing a problem for some time.

If you are concerned that they are mistaken, you should seek a second opinion.

When they identified my aneurysm it was already well into critical. So they operated in a couple of months.

Despite doing stupid **** around the house I remained ok...

https://youtu.be/mU412nELtdI

My wife had a few anxious moments worrying, but I reckoned that if they didn't need to do it that day, then I was ok to act as they had guide me

That was a nice tree! Brilliant video.

Its difficult here in the UK to get second opinions, without having to go to a GP, get a referral, etc. I'm trying to get the images to the surgeon in Holland, so I'll get his opinion instead.

 

[valdab]

Amazing photos, Pellicle!
Valdab, your situation is definitely similar to mine! It's exactly what I think as well, why rush into surgery when everything has remained stable? do you take any medication and are you on yearly follow-ups ? Maybe we should get in touch before I move abroad, perhaps by phone or something, if its okay with you?

The trouble with anxiety is that once it takes a hold there is no rationalising the situation. I have found an approach that works for me but everyone of course is different. I am happy to chat by DM or email. Phone is a bit tricky as I am away teaching for much of the coming month. Moving abroad is stressful enough; I can quite see how anxiety might spiral out of control.

Perhaps another opinion? I left my first consultant because he was retiring and also I became uneasy about silly mistakes that crept into letters. My last scan with him before I left gave measurements of 4.8 - up from 4.6/7. So of course I was in a flat spin because he wanted to refer me to the surgeon fora chat. I decided to leave for reasons mentioned above and came across PEARS so I sought out Prof Pepper. I have had three MRIs with him in 18 months - they all say 4.6 or 4.7 (can't remember which). Pretty much the same as at diagnosis. He is emphatic that there has been no sudden growth so I should wait. I take no medication for it as I already have low-ish blood pressure.

I could seek out another opinion and I believe another operator might analyse the results slightly differently and pronounce me at 4.8 and ready for surgery. But Prof Pepper has told me ( and I have no reason not to trust him) that his analytical team are the best around. He works from a very busy hospital so that too backs up his assertion.

Do feel free to DM me - might be a few days before I respond

 

[pellicle]

That was a nice tree! Brilliant video.

thanks ... Anita took it while I was making my cuts. Bloody tree was planted too close to the house. And it (being a palm) attracted Currawongs which are bloody noisy in the early AM (and late PM) ... which woke my wife ... and so when you have a situation where your wife says "that bloody tree has to go" then (even if you liked the tree and I didn't) then the tree goes.

Happy Wife = Happy Life

some more background on that tree: http://cjeastwd.blogspot.com/2010/06/tree-ate-it.html

Its difficult here in the UK to get second opinions, without having to go to a GP, get a referral, etc. I'm trying to get the images to the surgeon in Holland, so I'll get his opinion instead.

interesting ... so you guys have created a situation where "second opinions" are now controlled access ... very tidy arrangement for the medical profession I must say.

I think its smart (and handy) to get a second opinion in an entirely different system, and from what I understand the Dutch have a good one.

My understanding of aneurysms is that they can start swelling (dilating) and then stop for some years ... perhaps indefinitely. If that is your case (that it stops) then avoiding surgery is a preferable situation.

I have found that as one ages its good to have something which prompts you to know you are not 25 anymore. Like 3 weeks ago I was bouncing on the trampoline at a friends place with his kids ... then my knee popped (ouch) ... it was a week before I could walk properly.

Aging is a continuous process, but we notice the effects in a discontinuous and stochastic manner. (like when you do your knee).

Happy elderly age is a blend of keeping up exersize and moderating it to what is prudent for that age.

Best Wishes

 

[Agian]

Dunno if anyone is familiar with CT Fletcher, he had his AV replaced , Multiple world record holder.

I love the guy But be 'warned' he can curse for fun....

Youtube is full of him.

I was a regional powerlifting champion in the 90s i still weight train but avoid maximal lifts these days

I got his DVD. The ticking seems to bug him.
They say 'no limits' but watching him go that hard made me cringe.

There's something that crosses my mind now and then. Silly as this may sound, I imagine the stitches coming loose if I lift too much.

 

[ClickityClack]

...There's something that crosses my mind now and then. Silly as this may sound, I imagine the stitches coming loose if I lift too much.

Me too. Knowing how they connect the coronary arteries to the graft and that the integrity depends on stitches into the old root tissue makes me nervous sometimes. No use dwelling on it though.

 

[Paleowoman]

There's something that crosses my mind now and then. Silly as this may sound, I imagine the stitches coming loose if I lift too much.

The body actually repairs the place where the stiches are, and this process starts right away during/after surgery. It's like magic how it happens - the stiches are no longer necessary after quite a short time. The sternum, on the other hand, being bone, does not repair quite so quickly as tissue which is why we have to be careful lifting for a few months after sternotomy.

 

[pellicle]

Me too. Knowing how they connect the coronary arteries to the graft and that the integrity depends on stitches into the old root tissue makes me nervous sometimes. No use dwelling on it though.

the word you seek is endothelialization ... its quite rapid tissue growth over stuff and binds it tight (and endo meaning inside ... the blood vessels

Think of what Ivy does on the side of a house only much faster
for instance...
https://www.ncbi.nlm.nih.gov/pubmed/6654966

After an initial recovery period of five days, endothelial cells started to migrate onto the inner surface of the prosthesis with a velocity of approximately 0.3 mm per day, resulting in a completely endothelialized prosthesis at day 21. A smooth continuous inner lining was achieved.

pretty soon you won't be able to rip it out ... without ripping all the tissue that surrounds it. It'll actually be stronger than before.

 

[themalteser]

pretty soon you won't be able to rip it out ... without ripping all the tissue that surrounds it. It'll actually be stronger than before.

That's impressive, and reassuring. I'm glad Agian and Clickityclack raised this.

I did not know that aneurysm can stop. My cardiologist said that the more I grow old, the more this will dilate, and hence why surgery is inevitable. I mean the chances of me having surgery are probably 70-80%, but I don't know what I'm basing this on. I don't have familiar issue either, my brother checked last week, and no problems with his aorta. Maybe, and this is wishful thinking, I'm at the end of bells curve and this is "normal" for me! ... (I know its not).


Thank you valdab for your message. Professor pepper is excellent in this field, so if he said to wait, then waiting is the most sensible option. Does he still operate? I heard that he stopped, but maybe I'm wrong.

 

[Agian]

I hope so. You do hear about stitches coming loose and causing 'paravalvular leak' though. Cloth can't bond to bodily tissue, can it?

 

[pellicle]

I hope so. You do hear about stitches coming loose and causing 'paravalvular leak' though.

well as far as I have read these issues are related to either improper work to begin with or the arterial wall (valve root) being quite unstable (similar to what an aneurysm is as I understand it). The paravalvular leaks occur when (soon after implantation) the tissue separates from the valve stitching ring. I myself would be very interested in a study which clarified if the surgeons may have some impact on this, but then you and I both know that surgeons don't like scrutiny or evidence based practice

Cloth can't bond to bodily tissue, can it?

you should change your undies more, but happily exfoliation should allow you to peel it all off in the spring