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DiscussionRegional complex pain syndrome
Chronic Pain | Last Active: May 29 6:22am | Replies (21)Comment receiving replies
Replies to "As I know of the CF leak was done right. Had to stay in the hospital..."
I don't know if I commented on your post before but doing random injections, according to Dr Getson, total US authority on CRPS. Injections can cause CRPS, even just having your blood drawn.
These kinds of random injections deep in the body with huge needles can easily cause a spread. Spinal cord stimulators cause lots of scar tissue. Pain drs seem to only do invasive things.
Please ask yourself for each injection where they have yet again offered false hope, if this injection spreads this to my ither leg, or arm, or further up my leg, am I willing to take that chance because the chance it will greatly help is 90-100%.
He says never ever let anyone do surgery saying it will cure your crps. There is no surgical cure for crps.
Please watch the long vids about CRPS by dr Getson and an Indian-American doctor on YouTube. They know and are very clear about the % of help each med can be and what NO to do based on what they gave seen. Experts in this field.
Random shots are so dangerous for us. But if pain guys only do shots and stimulators, that's what you get. Every single one of their patients get that. Regardless of your diagnosis.
These drs putting SCS in teens who have had crps for 3 months is malpractice. SCS is the last thing to try do once done, you can't undo the scar tissue formed.
I try to fo life without regrets. I know things can always get worse. So think aboit that with each mew invasive treatment. If this causes a spread and its now in bith legs, can I live with that. If it spreads to my hand, is the risk worth it because he says 100% it will help? Due diligence. Watch these Drs on youtube who are national specialists.
I admit bias against pain clinics. I won't go into it but even just being required to sign all these contracts before you even meet the guy is so wrong. I also dont do pain meds so I'm not signing iver all control of my life to someone who will only inject or cut when that is the worst thing for crps.
No regrets. Due diligence. Please don't just keep reaching gor the golden cure and end up worse and they have moved on to the next person to inject. And all that cortisone wrecks us more too. Liver. Kidneys.
Ok. Please watch these youtubes. They are 1 to 1.5 hours long. Good for family to watch, frirnds, if willing to see what you really have.
My best. No regrets. In my mind, the best thing I've seen help at the beginning is ketamine. Its expensive, insurance doesn't cover it of course (some have had some luck.)
With all thst said, the one thjng I would totally do, which sounds nuts, is to do the 5 days in a ketamine coma in icu. Its brought remission in many cases. Don't kniw if insurance pays for that which of course few could pay cash for. But that most extreme treatment is the one id most likely do. Except I'm 45 years. Nothing can help me now. Good treatment early on can be curative or at least make things livable.
Think carefully about random injections. False hope kills me a little more each time I'm let down. Id rather have no hope, and more acceptance, than dashed false hopes for years.
For some drs, and I see pain doctors who treat all pain the same this way, when you are a hammar, everything looks like a nail. I know most drs won't deal with pain patients and we get forced to give up all our power to these pain people.
Please jyst research and think 4 times about each "let me try injecting you here." Or lets create more scar tissue by moving the SCS here."
Sotty but no regrets ok. Due diligence. Everyone has access tk these two top specialists. Please watch them. Do your best decisions, follow your gut but do it informed. Thanks. Not sure this helped at all. Was more of a warning maybe. Some drs still sell snake oil. Sorry.