Chiari Online Support Group

UK waiting time experiences

#1

Hello, just wondered what everyones experiences of waiting times from diagnosis of CM to neurosurgery appt in the UK? And for those who have had surgery, how long from the neurosurgery consultation to surgery did you wait? Also what was the deciding factor for you in going ahead with surgery?

Thank you, Amy xxx

#2

Hi Amy I was diagnosed on boxing Day today I went for my pre op just waiting on date to have surgery XX

#3

Hi SalX3, hope you don’t mind me asking… but what were your symptoms and herniation? And was your csf flow abnormal? Sorry hope you don’t mind me asking. Wishing you all the best with your surgery xxx

#4

Headache numbness in arms legs feeling sick CSF is ok as far as I’m aware XX

#5

And you can ask what ever you like I’m just really new to this it feels like I’ve been diagnosed and bam waiting surgery so quick and bloody scared xx

#6

It must be so scary for you! I’m so new to this too. I got diagnosed in Nov, had a neurology appt in jan where the neurologist stated i needed surgery, then a second mri to assess csf flow that im waiting for results, but my neurosurgery appt isn’t until april, so i’m guessing they mustnt be worried though i haven’t been told my csf flow mri findings yet. Theres just no real information out there, asides this group! I hope your surgery goes well!! So with your symptoms they suggested surgery straight away evenwith the csf flow ok? I know the herniation length means little but did that play a part in your decision? I’m just really confused about CM xxx

#7

Hi i am in ireland and the waiting time is terrible here. I had my surgery relatively quickly but found follow up appt are bad. Because ‘now i am fixed’ i wish it had been that easy.

#8

What were your symptoms? (If you don’t mind me asking!). And how have you been post surgery? I have my neurosurgeon appt tomorrow xxx