Almost nowhere to go...!

Hey Mick,

I started my journey at Kettering general hospital and then went to JR within 3 days. This all went fine - it was the follow-ups which all went wrong. I had no idea what the difference was between a Neurologist, a Neurosurgeon and a Neuroscientist but they have them all at JR and more.

Only your GP, your Neurologist or another hospital can get you into JR for any type of neurosurgery.

Your GP is out of the picture for the moment - they just get updates probably and do med reviews from now. AVMs are too specialist for your GP, as are the meds used to control seizures. Your Neurologist is the place to get things chased up. Hope he/she is accessible. Just keep ringing or go there and wait to see them.

Sounds like you have a disgnosis already so next step is to get an appointment with JR - this could be with anyone really but it should result in further analysis (eg an angiogram). At that point they need to decide what to do. As far as my experience has taken me they are bi-weekly meetings where at least JR and Sheffield Hallum take part in. Plus there are also other people involved in those meetings like Stroke specialists etc. Your case will come up as will other cases. Then the decision comes to embolise or do stereotactic radiosurgery or whatever. Sounds like removal has been ruled out. Then the next step is treatment. The NHS is super careful and they do things in small steps and assess each step.

So, you need to get through a few administrative hurdles first. The first is to chase your neurologist tomorrow! Ask your GP to ring. And keep pestering. You have proof that they should be referring. Talk to assistants and secretaries - anyone who can put in a word for you - all the preparations and appointments are done by these fine people and they usually go into the NHS to help people like you - they don’t work there for the money!

I feel for you. Hope you get somewhere soon. Once it starts rolling in the NHS it gets there in the end. Buy a folder and keep all the correspondance in one place.

Let us know how you get on!

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Just another thing. I laugh now, but it wasn’t funny at the time.

I had a follow-up MRI at JR in March 2017. Didn’t hear anything.

Had seizures and stroke on Sept 11th (I remember that date). Stayed in hospital for three weeks. When I got home the results from JR’s MRI had arrived: result was “satisfactory progress”.

Hmm. 6 months wait to get a letter.

Thanks for the message Chris, I had a tonic clonic seizure in June. I’ve since had the angiogram at JR. I have an AVM with an Aneurysm. They have had there meeting and have decided, it is inoperable. I was referred to the Neurosurgeon at JR, to work out a management plan. With a tweaking of meds and general plan to help cope.
Well I have been chasing it up and have been given April 8th as my appointment date. Which is great, as I haven’t a clue what’s going on now until then. There are so many questions I need to ask, so much info I need. Get more confused by it all every day…
Mick

Mick,

That feels like a long time to wait but in Nov 2016, the best I got for a promise of an op was March/April 2017, so you’ve really much the same timetable that I followed. I know you’re just looking for a management plan but it makes sense that people in a more critical position get to see the neuro first.

I think they play too much golf. If they cut down on golf, they’d have more time for work! :smile:

It does come round. Sometimes it feels like a long way away but actually, it comes round ok.

Very best wishes

Richard

Does anyone know about flying, with an AVM and Aneurysm…??

Mick,

This is a common question and we have people here who have had to fly to their operation, so flying is definitely possible. Whether it’s ok for you is a question for your doc. Talk to his secretary or to one of the nurses in the neurosurgery department and they should be able to get an answer for you.

The other thing you need to think about is a pre-existing medical condition and how that is catered for / excluded from your travel insurance. You may well need to read the travel insurance policy fine print to see if you need to buy an additional policy if your aneurysm or AVM would be excluded. There are companies that offer cover for existing conditions, though it is often expensive.

If you need further help with that, just shout up.

Best,

Richard

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