Brain haemorrhages

[DeskJockey]

Can only offer my sympathy and virtual shoulder (for learning on or punching, whichever you need).

[Explosive Newt]

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

Sorry your ride is continuing to be so rough.

Accurately diagnosing the cause of seizures can be very challenging - it may well be it's impossible to know if the haemorrhage came first or the seizure... in which case one has to err on the side of caution. But I would definitely want to make sure this guy has all your notes next time you see him to make sure the decision making is done properly!

You are always entitled to a second opinion to adjudicate between conflicting diagnoses.

Re heart valve safety, you can look it up here if you have the name of the valve - https://www.mrisafety.com/TMDL_list.php - but I think all valves are safe or 'conditional' (meaning they can be scanned unless you are using a wacky research scan with high field or high gradients). What would be important would be to make sure anything in your head after the craniotomy/embolisation is MRI safe.

[teacherboy]

@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)

It is frustrating not being able to take myself places but good that everything is being investigated ultimately

[teacherboy]

Can only offer my sympathy and virtual shoulder (for learning on or punching, whichever you need).

Thanks - I've been stropping around like a pubescent teen to unload my angst, I'm sad my wife thinks it's directed at her when it's not, but, she is under a lot of pressure at work and having me to worry about also - I tell her to not worry about me.... but that is easier said than done!

[teacherboy]

Sorry your ride is continuing to be so rough.

Accurately diagnosing the cause of seizures can be very challenging - it may well be it's impossible to know if the haemorrhage came first or the seizure... in which case one has to err on the side of caution. But I would definitely want to make sure this guy has all your notes next time you see him to make sure the decision making is done properly!

You are always entitled to a second opinion to adjudicate between conflicting diagnoses.

Re heart valve safety, you can look it up here if you have the name of the valve - https://www.mrisafety.com/TMDL_list.php - but I think all valves are safe or 'conditional' (meaning they can be scanned unless you are using a wacky research scan with high field or high gradients). What would be important would be to make sure anything in your head after the craniotomy/embolisation is MRI safe.

Thanks for the reminder about diagnosing a source of the issue - I know it's akin to untangling a bag of snakes, especially when a patient like me is the one being diagnosed - I will ask for a second opinion at Southmead and if they haven't called me/messaged me/sent me an appointment in the next week or so I'll be chasing them for one asap - not least of all as I have no clue as to what they put in my head - it's not on my discharge summary and I don't have a copy of the operation notes (I do for my heart op, but only because I was sent for an x-ray a couple of days after and they were given to me to give to the doctor afterwards, so I took a couple of pics on my phone - this is how I know I have a 22mm sorin fitline bi-leaflet valve) and it strikes me as important to have that information now that you have mentioned it

[teacherboy]

MRI appointment has come in from local hospital for 6th November, so that was very quick - but still nothing from Southmead however......

Haematology are now in on me as well and want me to book an appointment at Musgrove Park in Taunton but everytime I try to book one it tells me there are no appointments

Have INR this afternoon and could receive some news regarding home INR testing on a much more regular basis as i've poked every medical professional i've been in contact with over the last month or so and every single one of them promised to investigate and ask so hopefully the local health authority/comissioning body or whatever title they go by now are sick and tired of hearing my name and have just given up and agreed to let test myself like they trust diabetics to

[teacherboy]

I did indeed meet the rules for being given an exception to Somersets general rule of having to get INR tests at surgery, have had to hand over £300 for testing machine but did get it VAT free - I do now get lifelong prescription for coaguchek strips and lancets and save hours in not having to go to docs everytime for a test

Screenshot_2023-10-16-12-05-33-68_eec0665bc7fc2141bb7843da3d434d96.jpg (316.62 KiB) Viewed 8462 times

That Dr is a legend! She handed me the prescription with the biggest smile on her face and was very happy she'd overruled the local authority beancounters

[jamcg]

Brilliant! That’s great news

[nuttinnew]

Top doc

[teacherboy]

Brilliant! That’s great news

Top doc

Thanks chaps - been trying to pay Williams medical for the machine but it keeps timing out on Sage Pay

[teacherboy]

https://www.bbc.co.uk/sport/boxing/67128782

Hope he's ok

[NGRhodes]

Glad to read progress is being made.
What medication have you been put on for your seizures ?

[teacherboy]

Glad to read progress is being made.
What medication have you been put on for your seizures ?

Levitiracetam (Keppra) 1000mg 2x per day but that will be temporary (hopefully) as I don't have epilepsy, I do however now know I have residual damage from the Endocarditis I had 16 years ago as lesions in my brain that will be investigated in 3 weeks - neurologist thinks they could be the source of the original seizure but i've never had issues since that infection so I dunno

[teacherboy]

Had my head in the big magnetic donut today, getting my hydrogen protons spun the same way - now I need to wait for an appointment to discuss whatever they've found/get some kinda all clear.

On the plus side, Somerset let you access scan images by filling in an online form - so I'll be doing that tomorrow as I can't be bothered to upload pictures of my mug as proof it's me asking for them - could take up to a month for the request to be okayed but whenever it is, I'll get some pics of my noggin on here

[Explosive Newt]

getting my electrons spun the same way

Protons, dear boy.

Glad progress is slowly happening!

[teacherboy]

getting my electrons spun the same way

Protons, dear boy.

Glad progress is slowly happening!

Had immediately realised and edited at same time you posted that

[Explosive Newt]

Spins align in the magnet
Then a nice bit of microwaves to flip them into the transverse plane

[mik]

Hows the recovery going @teacherboy ?

[mik]

It's approaching 3 months now since @teacherboy was active on the site

Hope that doesn't imply a deterioration.

[dinny_g]

Yeah hope all is well...

Kiinda puts my Earphone connector moan into perspective...