Brain haemorrhages

[teacherboy]

Bloody hell. Glad you're back home, still with us and on the road to recovery.

I had major heart surgery 11 years ago to get a mechanical aortic valve, replacement artificial aortic root and rebuilt mitral valve (bovine xenograft) and the meds to manage this are thought to have caused the haemorrhage (warfarin)

Interesting. My Mum takes that, I'm pretty sure, along with a whole load of stuff, some of which is probably to counter the effects of the warfarin. You may have the same. She had a triple bypass about 20 years ago and a double about 10 years ago.

God bless all our heart surgeons (and brain surgeons, clearly).

Best wishes to your mum, thats not a small amount of surgery!

[teacherboy]

Missed this. What a rollercoaster, hope your recovery isn't too long.

I'm remarkably well all things considered and can do pretty much everything i could before - medical clearance will take a while obviously as they have to be sure it's all fixed and i don't start driving again, have another haemorrhage and end up killing myself and other innocent people

[teacherboy]

Missed this. What a rollercoaster, hope your recovery isn't too long.

All is well so far...lots of outpatient stuff still to do however

[teacherboy]

Bloody hell Teacherboy! You don't get poorly by halves do you?

Good luck with the recovery.

It's a skill

Am doing my best to recovery steadily, hoovered whole house and mopped whole of downstairs today for balance and coordination rehab - stairs were a bit of a challenge!

[teacherboy]

> Point being - don't ignore a headache that lasts for several days and especially if it then suddenly becomes a weakness on the *opposite* side of your body from the headache - you could then hopefully avoid what happened to me....

Worth noting calling 111 is a very good triage service.

GWS stranger.

So if you catch this early can it be treated solely with blood thinners?

They make it worse, i had to have mine reversed so it could form a clot - idea is then your body has time to repair vessel that leaks and break down the clot but if the clot is too big you end up with pressure excess and seizures etc, as happened to me - or clot migrates and really causes problems - like blocking an artery somewhere .......

I'd forgotten to mention i had called 111 the morning i went back to hospital just to confirm that was what i needed to do and kinda bypass the A&E wait as much as possible by being on hospital system as someone who needed to be looked at asap - which luckily happened

[teacherboy]

Just caught up, and, well,



What have you done to your body to make it keep trying to kill you?

I hope the recovery continues as it's started - it's incredible you've posted so much so clearly so soon after

Congenital defect in aortic valve from birth (bicuspid instead of tricuspid) always missed as whenever a doc listened to chest i'd had bronchitis or pneumonia, that led to endocarditis infection (gram negative strep A i think it was) and the defect being finally identified, that left cardiac damage and some serious valve regurgitation which damaged the aortic root/aortic valve and mitral valve requiring the extensive mods -> meds from that have caused this issue

[teacherboy]

Bloody hell! GWS. Also, don't drink piss

Of course i won't drink piss but will do best to GWS - thats why i reply to each comment on here -> it's great practice at 2 hand typing and thus is rehab of the type i need as i'm using a wireless keyboard and my downstairs media/gaming PC

[teacherboy]

Good Lord, you've not done all that by half have ya. Get well soon!

My family/friends have told me this a billion times

Thanks for the good wishes

[Explosive Newt]

There was a pilot somewhere of giving the home INR testing machines on the NHS but I’m not aware of it being widely available sadly. I seem to recall that if you get one you can get the testing strips off your GP though.

Only a heart doctor but I would also suggest not to drink your own piss.

[Jobbo]

Congenital defect in aortic valve from birth (bicuspid instead of tricuspid)

Oo-er; I believe I have the same. It’s never affected me, though I was always told to take antibiotics before any general anaesthetic. After 50 years without any issues I’d pretty much forgotten about it.

Thank you for mentioning it; I clearly ought not to take it so lightly.

And all the best for your full recovery.

[Holley]

Congenital defect in aortic valve from birth (bicuspid instead of tricuspid)

Oo-er; I believe I have the same. It’s never affected me, though I was always told to take antibiotics before any general anaesthetic. After 50 years without any issues I’d pretty much forgotten about it.

Thank you for mentioning it; I clearly ought not to take it so lightly.

And all the best for your full recovery.

Me too, only found out I have a congenital bicuspid valve recently (I saw on the recent Netflix documentary that Arnold Schwarzeneggar has the same).

Was advised by a cardiologist at St Barts to have scans once every 2-3 years to check it's still okay.

Would perhaps be worth getting a scan.

[teacherboy]

There was a pilot somewhere of giving the home INR testing machines on the NHS but I’m not aware of it being widely available sadly. I seem to recall that if you get one you can get the testing strips off your GP though.

Only a heart doctor but I would also suggest not to drink your own piss.

Been doing some digging and it's in County Durham & Darlington and is ongoing following a successful trial, https://www.cddft.nhs.uk/news-and-media ... oring.aspx, also there are a few people in somerset that have bought their own machines and get the strips/lancets to manage their INR so will pursue that further

Definitely not planning on drinking my own piss

[teacherboy]

Congenital defect in aortic valve from birth (bicuspid instead of tricuspid)

Oo-er; I believe I have the same. It’s never affected me, though I was always told to take antibiotics before any general anaesthetic. After 50 years without any issues I’d pretty much forgotten about it.

Thank you for mentioning it; I clearly ought not to take it so lightly.

And all the best for your full recovery.

Me too, only found out I have a congenital bicuspid valve recently (I saw on the recent Netflix documentary that Arnold Schwarzeneggar has the same).

Was advised by a cardiologist at St Barts to have scans once every 2-3 years to check it's still okay.

Would perhaps be worth getting a scan.

Be careful brushing teeth, that is what caused my endocarditis, definitely get regular scans and any fever, nausea, pains in arms/legs (like a dead leg or pins + needles), headaches that are persistent - get your arse to the doc or dial 111 and go to hospital A & E.

I think i can state that from a position of authority and whilst the scars are cool and you quickly tune out the ticking of the mech valve, post sternotomy recovery sucks - especially the first time you sneeze and your breastbone torques around and the stainless wires bite into it, even 11 years on i still don't like it

Also the managing of INR level and the need to arrange docs appointments to do so is a pain in the arse - hence my determination to get a machine to test myself and be treated as a type 1 diabetic would be - saving time & money for the NHS and keeping myself in target range for a greater period of time

[Jobbo]

How did brushing teeth cause it?

[Explosive Newt]

If you have a bicuspid aortic valve I would get an echocardiogram every 2-3 years. Your GP would be able to refer you. Or I would happily do one for you if you fancy a trip to Cambridge!

Jury is still a bit out on antibiotics. In theory, an abnormal valve surface predisposes any bugs which circulate in the blood to colonise said valve and cause infective endocarditis. But bugs enter the blood when you brush your teeth! The guidelines would now recommend antibiotics prior to any dental work.

[Jobbo]

Interestingly I had antibiotics before teeth extractions as a child so there must have been some guidance to that effect 40-odd years ago.

I might drop you a line Will; I doubt I’d be popping to Cambridge but once every 3 years isn’t much of a chore so perhaps!

[teacherboy]

@Explosive Newt got it exactly right, bacteria on my toothbrush went in through gum and lodged behind my valve where there was low pressure and multiplied and multiplied into vegetations - parts of that breaking off caused the random dead legs etc and could so easily have gone into brain then and i wouldn't be writing about it now - i know i've been ludicrously lucky overall and should have serious issues or have died but neither have occured

As for regular ultrasounds - i was discharged from further scans a while back as my rebuild was a adjudged to have been more than successful but am now back on them, had a new one after the first "seizure" which turned out to be a haemorrhage that caused the seizure -> collapse -> head injury that was misinterpreted as having caused the haemorrhage.

That scan showed zero degradation of aortic valve/aortic root prostheses and a 0.5% increase in mitral stenosis but that is within the margin of error so may in fact be actually nothing, blood pressue is to all intents perfect - I do get bouts of tachycardia but reason is as yet undetermined as heart remains in sinus rhythmn but goes at 165 - 200 bpm for between a minute -> 13.5 hrs (that was caught whilst in Southmead after the craniotomy and the doc in charge at time wanted to give me digoxin to stop -> reset heartbeat )

I do actually have a copy of that new scan because i asked nicely and it was burnt to disc for me to use when i teach medical physics unit for A-Level - I could upload a snippet tomorrow I suppose...

[Explosive Newt]

Metallic valves are bench tested to last 100 years, it will probably outlive you.

[Holley]

If you have a bicuspid aortic valve I would get an echocardiogram every 2-3 years. Your GP would be able to refer you. Or I would happily do one for you if you fancy a trip to Cambridge!

Wish I'd known what you did several months ago!

Initially like Jobbo I wasn't particularly bothered. Only found out 2 years ago whilst being tested for potential genetic disorders (my youngest daughter has suspected Cardiomyopathy so they wanted to test me and my wife). Whilst seeing my daughters cardiologist late last year at Ormond Street he asked how I was getting on. Explained I hadn't heard anything since my diagnosis but was told not to worry. He then explained I wouldn't leave that if I were you and to push for another scan.

After multiple failed attempts to reach St Barts, it was my GP that managed to get an appointment for me 3 weeks ago at Hinchingbrooke Hospital. Results all look fine except for a thickened mitral valve (they said it's mild).

If I struggle to get a scan in a couple of years time I might message you

[Jobbo]

I’ve not been bothered for about 50 years - blissful ignorance it seems! It was diagnosed when I was born, pretty much. First thought to be a heart murmur but got quieter so assumed to be a bicuspid aortic valve when I was about two. I had regular checks at Birmingham Children’s Hospital until my late teens, from memory, but it was just the original doctor listening with a stethoscope. Perhaps time for a more modern scan…