[frogga]

Hey peeps.....

Well. I saw the neurologist yesterday. An 8 hour round trip for 5 botox injections and a referral.

He believes my only chance of having some improvement is if I have the DBS inserted. However, when I explained about the RSD he thought I was talking about repetitive strain injury. err no. Then when I asked him to tell me what RSD was he was like "well, it's a severe chronic pain syndrome caused by the sympathetic nervous system". So, I suppose he's almost there..

(DBS is deep brain stimulation - it's used to treat dystonia and it works sort of like an SCS but for movement and it's in your brain and shoulder not your spine).

However, I have been in SO MUCH PAIN and am still in that much (fuzzy vision, unable to sit upright without passing out, shakes, blinding headache, can't stand noise or light, MEGA pain, colour changes, swelling, almost unable to move, dizzyness) etc.

But before I have it done I will have to see the neurosurgeon, have MRI's, CAT scans and all that lot as well as then having to return to the hospital every 6 -9 months for new batteries to be replaced. I just don't think I can survive the journey again.

I don't know what to do. I want it. But not if it will worsen the RSD. But then again. How much worse can my RSD get? It might improvne my quality of life? but I have spent the last 5 years clawing back my ability to study and tp be able to enjoy normal stuff. Basically, it's taken me 5 years to get to a point where I can sit in my wheelchair most of the day, be able to have conversations and hang out and occasionally go out with my mates and do well in uni. I just can't face having to do the whole climb again.

So I am stumped. It's impossible to make this decision. I just want the pain to GO.

Thanks for letting me rant!

FRxxxxxxxxxxxxxxxxx