OV9

teacherboy wrote: ↑Tue Oct 10, 2023 1:50 pm 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

mik wrote: ↑Tue Oct 10, 2023 3:23 pm @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)

DeskJockey wrote: ↑Tue Oct 10, 2023 4:49 pm Can only offer my sympathy and virtual shoulder (for learning on or punching, whichever you need).

Explosive Newt wrote: ↑Tue Oct 10, 2023 6:56 pm 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.

jamcg wrote: ↑Mon Oct 16, 2023 8:14 pm Brilliant! That’s great news

nuttinnew wrote: ↑Mon Oct 16, 2023 8:21 pm Top doc

NGRhodes wrote: ↑Tue Oct 17, 2023 10:36 pm Glad to read progress is being made.
What medication have you been put on for your seizures ?

teacherboy wrote: ↑Mon Nov 06, 2023 9:59 pm getting my electrons spun the same way

Explosive Newt wrote: ↑Mon Nov 06, 2023 10:05 pm

teacherboy wrote: ↑Mon Nov 06, 2023 9:59 pm getting my electrons spun the same way

Protons, dear boy.

Glad progress is slowly happening!