frame this…”my neurosurgery appointment went well” 🙂
ETHICS and MEDICINE can and do mix.
and i LOVE when they do!
i LOVE the feeling that you are being seen as you are, not as you were, not as one organ, but as a composite of your symptoms.
THAT kinda well.
YES i sat last night and ( with wiki as a dictionary), I ticked nearly EVERY symptom on this sheet, but then i wrote down the most “limiting” and consistent ones:
and WHAT HAPPENS NOW?
WHAT HAPPENS FOR THE REST OF MY LIFE?
- He is sending me to pain management.
- Interested in my “meningitis” legs, so going to MRI spine and brain. as he wants to rule out syrinx..as i mentioned extra painful pins and needles and coldness…so is looking beyond what we have so far.
- Referring me to a “rehab” specialist who works with some spinabifida patients of his….and the issues he wants the man to look at are similar.
- Writing a letter to my GP – and stating my medical “condition”…and several of my main symptoms. A kinda baseline letter, and will copy me – and it will govern all knock on, incidental appointments.
- He checked that i AM on referral lists for eye motility, optometry and ophthalmology…they just haven’t appeared at the top yet.
- He will be henceforth in charge of me.
he describes “decompression” as tidying up the chiari for a while, but not removing it’s symptoms…they are well established!
he doesn’t NEGATE them, belittle my shitty life standard, or tell me i am over thinking, or too good on Google…
NO SMART ARSE pretence.
but he sees me as ME.
and worth as decent a life as i can have – that’s all.
NOT a jigsaw of composite symptoms.
THANK THE LORD!