Brain haemorrhages

[Explosive Newt]

It depends 'how' bicuspid your valve is really, if that makes sense. Some function entirely normally and you never know the difference. But they are in general predisposed to thickening more rapidly and can become stenotic in the 6th - 7th decade of life.

[Jimmy Choo]

Can we get a forum group buy on heart scans?

[teacherboy]

This is turning out exactly the way i hoped it would and sparking conversation about self care and making sure medical issues are not ignored

Also what are the chances there would be 3 members with bicuspid valves when the incidence in general population is 0.5% - 1.4% although mine now looks like.....



https://www.corcym.com/devices/aortic/bi-carbon

[teacherboy]

Can we get a forum group buy on heart scans?

[Mito Man]

It’s a bit like the statistic of the birthday paradox.
https://betterexplained.com/articles/u ... ly%20true.
Link for those who have no clue what I’m on about

[mik]

It’s a bit like the statistic of the birthday paradox.

Hadn’t seen that before

[Sundayjumper]

Can we get a forum group buy on heart scans?

I think it's definitely sorted out the destination for the next meet.

[Jimmy Choo]

My middle son had an Atrial Septal Defect when he was born. We only found out while he was in hospital with a chest infection (that turned into meningitis). He got re-plumbed at 3 years old and has had no problems since.

[Explosive Newt]

This is turning out exactly the way i hoped it would and sparking conversation about self care and making sure medical issues are not ignored

Also what are the chances there would be 3 members with bicuspid valves when the incidence in general population is 0.5% - 1.4% although mine now looks like.....



https://www.corcym.com/devices/aortic/bi-carbon

Ah the tilting disc, a triumph of modern engineering.
Here’s one in action.


The old Starr Edwards valves (the first to come along in the 1960s) were ball in cage and looked like this

They worked by the ball sliding backwards and forwards.

[Jobbo]

It depends 'how' bicuspid your valve is really, if that makes sense. Some function entirely normally and you never know the difference. But they are in general predisposed to thickening more rapidly and can become stenotic in the 6th - 7th decade of life.

I’d better get on any pay my mortgage off at the expense of pension contributions then

[teacherboy]

Wires and valve can be seen in pic below

Chest X-Ray Edited.jpg (39.5 KiB) Viewed 5815 times

[teacherboy]

It’s a bit like the statistic of the birthday paradox.
https://betterexplained.com/articles/u ... ly%20true.
Link for those who have no clue what I’m on about

Thats cool

[KiwiDave]

I've just caught up on all of this - big I'm glad you're on the other side and on the mend bud!

[V8Granite]

This is turning out exactly the way i hoped it would and sparking conversation about self care and making sure medical issues are not ignored

Also what are the chances there would be 3 members with bicuspid valves when the incidence in general population is 0.5% - 1.4% although mine now looks like.....



https://www.corcym.com/devices/aortic/bi-carbon

Ah the tilting disc, a triumph of modern engineering.
Here’s one in action.


The old Starr Edwards valves (the first to come along in the 1960s) were ball in cage and looked like this

They worked by the ball sliding backwards and forwards.

Just as an observation, the butterfly valves at work always fail before the ball or float valves at the bottom.

Can you choose what you have fitted

Interesting stuff. When my Dad got rushed to Papworth it was great seeing how relaxed everyone was. He had a few stents fitted within 20 minutes despite having multiple heart attacks on the way in.

There is so much about health and diet we all get wrong that I think genetics play a much bigger part than anything else.

Dave!

[teacherboy]

Just as an observation, the butterfly valves at work always fail before the ball or float valves at the bottom.

Can you choose what you have fitted

Interesting stuff. When my Dad got rushed to Papworth it was great seeing how relaxed everyone was. He had a few stents fitted within 20 minutes despite having multiple heart attacks on the way in.

There is so much about health and diet we all get wrong that I think genetics play a much bigger part than anything else.

Dave!

As earlier comment from @Explosive Newt states, the tilting disc valves are tested to last 100yrs+/3.7 Billion plus opening/closing actions

I had no choice in the matter really and could have ended up with 2 mech valves easily had the damage been as bad as surgeon feared it could have been but luckily my mitral valve was salvagable by using a ring of bovine cartilage to keep the valve in shape - the valve itself is my own tissue and is working fine atm

As for valve choice - generally it seems to be whatever the surgeon is most comfortable will be the best long term solution for the individual patient;

Younger 20 - 60 yrs old = mech valves but lifetime of anti-coagulants - pretty sure younger than 20 is a regime of monitoring as physical growth needs to stop before anything can be replaced/repaired but i'm not a heart specialist, just have my own experiences and conversations with medical professionals to draw on.

Older 60+ yrs old would be porcine or bovine with no anti-coagulants but a 10 - 15 yr lifespan on valve before it goes stenotic and needs to be replaced again

As for the whole diet and exercise argument vs genetics - my opinion is that having good genetics wins everytime, yes you can do certain things to reduce risk but if you are pre-disposed to high cholesterol then no amount of dieting is going to stop that happening in time and your arteries will fur up - random selection of articles to that end.

https://pubmed.ncbi.nlm.nih.gov/32633265/

https://www.bhf.org.uk/informationsuppo ... terolaemia

https://www.sciencedaily.com/releases/2 ... 080306.htm

As for the medical staff at Papworth, Southmead, Bristol Heart Institute - they are calm, relaxed and just give an air of absolute confidence that tyhey know exactly what they are doing, i'd guess a lot of that is experience and good portion is not wanting to stress the patient anymore than they are already so they can listen, understand and give informed consent/next of kin can do so for them.

[teacherboy]

I've just caught up on all of this - big I'm glad you're on the other side and on the mend bud!

Indeed i am mending far faster than anyone would reasonably think possible

[JonMad]

if you are pre-disposed to high cholesterol then no amount of dieting is going to stop that happening in time and your arteries will fur up - random selection of articles to that end.

https://pubmed.ncbi.nlm.nih.gov/32633265/

https://www.bhf.org.uk/informationsuppo ... terolaemia

https://www.sciencedaily.com/releases/2 ... 080306.htm

I was diagnosed with familial hypercholesterolaemia when I was about 15 and have been taking statins (now statin + ezetimibe + aspirin) since then. All from my Mum's side of the family (she of the two heart bypasses). Have regular checkups at Harefield. The kids had a genetic swab test and they don't seem to have inherited it.

[teacherboy]

And........... more bad news

Saw neurologist yesterday.....

1. He wasn't aware I'd had a craniotomy and embolisation as he can't see those records as a different NHS trust did those
2. He thinks I had an unprovoked seizure that caused the haemorrhage after I cracked my head into kitchen floor during and as such I lose driving licence for min 6 months - max 12 months from time of seizure on 13th June (obviously I haven't driven since then anyway) - this diagnosis goes against what others at same hospital and Southmead have said, so I'm in limbo still as to what the actual truth is!
3. He saw lesions in my brain from original endocarditis that are circa 16 years old that multiple pairs of expert eyes either missed or discounted and wants to investigate those as original source of seizure via MRI but has to check if my heart valve is safe (I'm reasonably certain I had post heart op MRI scans, so it is OK)
4. The secondary seizures that triggered my transfer to Southmead and subsequent ops were provoked by haemorrhage and don't count as the start of the driving hiatus, and he'll make that clear in his letter, which I need to send to DVLA when it arrives.
5. I have to keep taking anti-seizure meds for at least the period of driving ban and probably longer to be on the safe side as there are no known negative interactions with any of the other meds I need to take.
6. He agrees I should be self-monitoring my INR to adjust warfarin but doesn't think Somerset CCG will authorise it - but thinks i have a very good reason to make them change minds as I have a very unstable INR meaning I need regular appointments to check it but am reliant on wife to take me which is interfering massively in her job and not sustainable long term.
7. I apparently now qualify for a year's bus pass, but the nearest stop is a mile from my house, no buses go anywhere I'd need to be in a timely or regular manner e.g. to take me to docs for INR or Bristol for follow-ups....
8. He didn't know if Southmead would actually call me back for follow-up scans etc. His words were, "They think you're fixed, and they're on to the next person and have forgotten about you"! But if they do, and I relay what he's said for point 2 above will they disagree, and where does that leave me?

I'm so confused, angry, disappointed and a hundred other things right now

[Holley]

And........... more bad news

Saw neurologist yesterday.....

1. He wasn't aware I'd had a craniotomy and embolisation as he can't see those records as a different NHS trust did those
2. He thinks I had an unprovoked seizure that caused the haemorrhage after I cracked my head into kitchen floor during and as such I lose driving licence for min 6 months - max 12 months from time of seizure on 13th June (obviously I haven't driven since then anyway) - this diagnosis goes against what others at same hospital and Southmead have said, so I'm in limbo still as to what the actual truth is!
3. He saw lesions in my brain from original endocarditis that are circa 16 years old that multiple pairs of expert eyes either missed or discounted and wants to investigate those as original source of seizure via MRI but has to check if my heart valve is safe (I'm reasonably certain I had post heart op MRI scans, so it is OK)
4. The secondary seizures that triggered my transfer to Southmead and subsequent ops were provoked by haemorrhage and don't count as the start of the driving hiatus, and he'll make that clear in his letter, which I need to send to DVLA when it arrives.
5. I have to keep taking anti-seizure meds for at least the period of driving ban and probably longer to be on the safe side as there are no known negative interactions with any of the other meds I need to take.
6. He agrees I should be self-monitoring my INR to adjust warfarin but doesn't think Somerset CCG will authorise it - but thinks i have a very good reason to make them change minds as I have a very unstable INR meaning I need regular appointments to check it but am reliant on wife to take me which is interfering massively in her job and not sustainable long term.
7. I apparently now qualify for a year's bus pass, but the nearest stop is a mile from my house, no buses go anywhere I'd need to be in a timely or regular manner e.g. to take me to docs for INR or Bristol for follow-ups....
8. He didn't know if Southmead would actually call me back for follow-up scans etc. His words were, "They think you're fixed, and they're on to the next person and have forgotten about you"! But if they do, and I relay what he's said for point 2 above will they disagree, and where does that leave me?

I'm so confused, angry, disappointed and a hundred other things right now

Do you have a good relationship with your GP?

Had a similar issue with trying to get a scan at St Barts, so went back to my GP and explained the situation. He was happy to get the scan done at our local hospital. Once he received the results, he called me to say I could pick them up to pass on to my Cardiologist.

[mik]

@teacherboy Sounds really frustrating. Although it may be positive that latest doc could be spotting issues that may have been discounted previously? Being unable to drive is intensely frustrating. (I wasn't allowed to drive for a month some years back and it was really impactful)