Quote:
Originally Posted by Jennelle
Hi there,
I am new to the site and have been trying to find people with similar experiences. I am a Pediatric RN and hurt myself at work. My condition progressed into RSD and I have been out of work for 9 months. I was wondering if others have had issues finding good doctors. I have a case manager who hasn't been too helpful. I have had 3 doctors suggest a sympothectomy has anyone else had this done? Did you have a hard time finding doctors and resources in your community? Any suggestions from others would be helpful! I have done PT/OT/message and they all wanted me to come back after surgery, the problem is that my case manager said it was denied. Any ideas?
Thanks,
Jennelle
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Jenelle,
Welcome.
I was first injured in 83. I took me 7 long years to get a diagnoses of RSD/TOS.
Your case manager; what can I say, be kind to him/her always. Make him/her see your humanity.
Finding a good doctor is something you might need to take a hand in yourself. Look for a University Hospital, and find the Chief of Neurology. Get on the phone, and call neurologists and ask about RSD.
Back when I was diagnosed, Dr Schwartzmann and Knobler were the only doctors who even believed it existed! Now, I'm astounded at how many people I see who have it. What suffering.
Are you near a large city?
What kind of meds are you on? I take methadone 50-60mg/day, diazepam, cymbalta, (Imetrex, migraines)
(Aricept, TBI), Topomax, and some others prn.
The lidocaine patches are great for "local pain".
Sympathectomies are brutal. In every case it was spoken about to me, they tried it with an anesthesiologist first! To see if it "might" help. Never jump into an invasive operation! That only "might" help! That's Barbaric!
Nerve blocks may be helpful, but, an insurance company looks for something to be "final". Done. Over.
RSD, is never.
And, the sad thing is, you cannot tell them that. They'll shudder their ears fast than you can say rsd, if you try to "tell them".
You need a doctor with a CV at least thirty pages long, to write a report on you.
Find yourself a good one.
Ask doctors you know. "Who would you send your "family member" to, if they had RSD?"
Get active on this, the sooner, the better.
I wish you all the best, Jenelle.
PM me if you wish.
Pete
ASB
PS
I often quote this,, the triangle of care for RSD.
Your Meds / Your Doctor
Your Mood / Your pain management psych doctor
Your body / excercise, warm pools, walking. Use it, or Lose it.
This is where you will need to be, when it's all said and done. You won't need the psych doctor always, but, one you can stay in touch with occasionally, once you work through the beginnings.
(A Doctor wants to beware of "drug seeking behavior".
Don't mention drugs, just tell them of your pain.)
How's your sleep?
And, so on.