Quote:
Originally Posted by piperlori
My RSD/CRPS is in my left hand, specifically centered in my index finger to the point where I cannot perform my normal occupation to its fullest productivity level (writer). And it's freakin' painful!
It happened as the result of a neck injury. That being the case, why can't a neurologist (not a hand doctor which is who I was sent to) do a test to find out what nerve is being affected and then do a sympathetic nerve block or some such thing? Why is this thing considered "incurable" when it seems to me that you can, potentially, find out what is causing it and then treat the root problem vs. just the symptoms?
Also, what has been other people's experiences here in terms of the most effective therapy? I have (hopefully) 3 months of private disability insurance payments that will buy me the time to get better.
So what will work? One specific type of treatment or a combination of different treatments? Any new breakthroughs? Has any one heard of Mirror Box therapy for this malady?
Thank you anyone who can answer some or all of my questions!
piper
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Hello Piper,
There are some doctors that do think this is possible when there is 'objective' evidence of nerve injury. Like say if they can confirm through MRI/Xrays and EMG/NCV studies that the nerve in your neck is causing your CRPS symptoms in your hand then yes it could help the symptoms of the CRPS. HOWEVER.. the surgical procedure to free up the nerve in your cervical spine could possibly cause spread of the CRPS to your neck. Have you been thoroughly evaluated to be sure you have CRPS/RSD? It is very normal to have nerve pain distal to the nerve injury (say from your neck to your hand) but just because you have nerve pain in your finger doesn't mean for certain that you do in fact have CRPS/RSD. (please forgive me if you know this already).
In my case I have a neuroma in my LFCN and Femoral Nerve of the hip/groin after they were damaged during surgery. My ortho didn't realize I had CRPS 2 and went back in a couple of months later to attempt to fix the damage.. long story short.. when I woke up in recovery the CRPS 2 had already begun to spread further down my leg. The area of pain and nerves involved had doubled in size within hours of me waking. Sadly, it wasn't until a neurologist looked at me 3-4wks later that they realized I had developed CRPS 2 after the initial nerve damage and the second op. made it worse. I've since spoken with 5 top neurologist across the country and only one was willing to consider operating but, he warned me that it could get worse. Frustrating I know..
My best advice is to make sure you have seen the top neurosurgeon and get at least 3-5 opinions before making any decisions.
Do you have long term disability that is available to you if your short term runs out?
I truly hope you get the help you need soon! I just got the spinal cord stim trial last week and it has made a huge difference in pain levels for me.
Take care,
Tessa
PS., I had laminectomy/foraminotomy on C3/4 and C5/6 just this past August for nerve pain after a head on collision and it worked very well for me.