Who do you see when you are too complex for the specialists? You see your doctors and yes some things may be too difficult for a general physician who do coughs and colds. So you are refered to a specialist. Then what happens when you are too complex for them? Bigger hospital? Different state? What then? Different country?! That's where I am at now.
All the specialists told me to see neurology. Neurology said I'm too complex go back to neurosurgery and move back to Sydney. Just spoke to my Sydney Neurosurgeon. Apparently it's all above "their pay grade". Almost beats my pain specialists say I'm in their "too complex basket" and my GP saying my neurologists sounds overwhelmed in his letter.
This is on the back of getter severe 8/10 headaches for days where I can't move for feeling like my brain is being ripped out. Trying to go to a craft even for people twice my age and crashing so hard I need a 20hr nap, losing feeling in my face and nystagmus. My physio earlier today suggested I get a tilt-in-space electric wheelchair. This does NOT sound like me getting better.
The good is likely more surgery to fuse my SIJ the next time the surgeon pops down to my state (I think he was delighted to cheekily suggest himself when I asked for a local suggestion). His other suggestions were wear my neck braces again cause they would brace lower in my spine and support more and see how I got. Also, to contact the international surgeons and if they had surgical ideas he would consider them. This sounds like expensive and time consuming. Good thing I'm sick and disabled.....wait....
Have a neuro-gastroenterologist coming up (did you know such a speciality existed?), hand OT, psychologists (gonna need that after today) and waiting with baited breath to talk to my general physician. If anyone has a chance with complex it's him I hope. I'm only like 20 tablets more than before and a year of antibtioics living in my bed for years. Please some break in all of this.