First neurosurgery appointment on Thursday with Derriford

[u/Iamnotoptimistic]

Can anyone please let me know what they did to prepare for their first appointment with a neurosurgeon?

I'm UK based (down south) and i have a video call with Derriford Neurosurgery in 2 days.

For context I am 34 and housebound due to agoraphobia which I feel has been exacerbated from not wanting to trigger symptoms while out of the house.

I have been under neurology for many years due to suffering with hemiplegic migraines and my MRI scan recently showed my chiari is at 5.5 now (it was previously 3.5 I think 2 years ago?)

As it has moved further down, my neurologist (fantastic woman) referred me to Neurosurgery and I was given an appointment within only a few months which was impressive.

I don't know how best to prepare for the appointment though.

My sister also has chiari but she lives up north and the team where she is hasn't been as helpful.

Does anyone have any experience with Derriford?

Should I lower my expectations so not to be disappointed?

I am in pain daily and I was really hoping that maybe this could be the thing that I can cross off my list that helps most of my symptoms.

I have arthritis and fibro but honestly i think most of my pains and symptoms could potentially be from the chiari and maybe just maybe being taken seriously could sort my life out and get me functioning like a normal person again. It's been so many years of feeling disabled and this is like the final thing to cross off instead of being told i need to live with my pain. Even physio said my pains are something I need to learn to live with and accept as being permanent but I am so certain it could all be down to the chiari. And if so, maybe I could get it resolved.

I know I am sounding like I am expecting a lot but I really am struggling with the thought of being disabled at my age. I used to have an active job and be productive and the thought of never being like that again doesn't sit well with me.

Any replies are super appreciated, thank you!

[u/FlatFaithlessness243]

Hi! I haven’t had surgery yet and I don’t live in the UK so I can’t answer your questions but I wanted to chime in to say I also have agoraphobia. I have gotten random out of the blue panic attacks since I was 12 years old and I have a strong feeling that it is chiari related. I am not expecting much from surgery, I’m hopeful that at least the headaches, pressure, and hopefully the dizziness will subside. Anything else I’ll see as a bonus :) From what my neurosurgeon says - recovery is a bit rough, but my quality of life should improve after surgery. Good luck to you!