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RSD/CRPS

From: tolbertratliff - on 07/08/2010 12:46pm

I am a 45 y/o male, occupation is police officer. I broke my ankle in Nov. 2009, 3 avulsion fractures. I was diagnosed with RSD/CRPS in March of this year. Pain radiates from my left ankle all the way to my lower back to my right knee. Right knee and thigh numb and swollen most of the time, even when lying in bed. I have had 4 lumbar nerve blocks and only helped 10% overall. Pain mgmt doc said I would never work again as an officer and has recommended rhizotomy if comp will pay. Anyone else have RSD? I sincerley hope you don't.

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on 07/10/2010 1:57am

tolbertratliff

Sorry to hear that you are dealing with CRPS. It's nasty stuff and I hope that you have a good doc working with you to help get ahead of it. One thing that surprises me is that a PM doc would be willing to do a rhizotomy on someone diagnosed with CRPS. I ran into that exact same situation with a new PM doc recently, who was not concerned with causing the CRPS to spread. I left there and got another referral to see a different doc. My neurologist explained to me that with CRPS, serious consideration has to be given to the possibility of causing the disease to spread or get worse. Especially if doing anything to disrupt the nervous system. Now keep in mind I am not a physician, I'm just relating what my experience has been and what was explained to me.

One thing that is effective treating the pain of CRPS, is spinal cord stimulation. So if your doc hasn't mentioned that yet, it may be food for thought in the future.

Hope things get better for you,

Bacaumi

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on 07/10/2010 6:23pm

I have had RSD/CRPS in my R leg, and it has mirrored to my L leg, after at least 10 years. I was not diagnosed until I had it for over 10 yr. I must say that any surgery for pain is extremely risky! Especially anything like a rhizotomy! Surgical intervention of this nature frequently make the pain worse! I must say that the other respondant suggested the stimulator. I had one of those for over a year, and it worked well, in my R leg, but due to scar tissue, it was impossible to advance a lead for the left leg. I will be honest, I cried about this, as the next thing my doctor wanted to use, and did use, is pain pump. Mine uses Morphine, and it has restored a quality of life. I have much less pain than previously, I still take oral meds for breakthrough, though I can at least do a number of the things I want to do!!.

I will be honest the dorsal Column Stimulator or the Medication pump are NOT the first line items. The first things should be oral meds, then if those are not effective, injections (spinal blocks) should be done. Many times these help to break the pain cycle, together with oral meds.

I must close, and simply say, if a doctors initial reaction is to suggest surgery. Demand from Workman's Comp, that you are going to exercise your right to get the second opinion. Surgery without trying meds, injections or a combination of the two, is no longer the way proper pain management is practiced.

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on 07/10/2010 7:25pm

Thank you both for your suggestions. Good luck to you

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on 07/10/2010 11:11pm

Ah yes, Twikan makes a good point about the flow plan of recommended treatments. For some reason this morning I just automatically assumed that you had already had surgery (since RSD/CRPS can result from surgery) and did not think to ask. Good catch there Twikan. Sorry to hear that you had to resolve to getting a pain pump. I pray I can avoid that. My hat is off to you for getting back into the swing of your life. So may I be so bold as to ask you Twikan, that if the doc had been successful in getting another lead in for your other leg, (and program it successfully) would you consider that effective pain management for you in comparison to your pain pump?

tolbertratliff, just my opinion here, but I would definitely seek out a second opinion before you let any well intentioned physician do any type of surgical procedure.

So this doc did 4 nerve blocks and with only a 10% reduction in pain, he wants to proceed with a rhizotomy? Scary.

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on 07/11/2010 9:42am

I'm definitely seeking a second opinion. I've watched a 20 year career go down the tubes. Remarried last June, definitely not the life I had planned on. She is wonderful. I've been told I will never be able to work again. I have fought against these meds my whole life. The reason I say this is because it seems to take more for any kind of relief. I have advanced DDD and osteoarthritis also. I always just kept going, eating healthy, vitamins, very active. Now I just either sit on the couch, or lay in bed. You both have given great advice and I pray that you get some relief and peace of mind

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on 07/23/2010 7:48pm

what does RSD/CRPS stand for?

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on 07/24/2010 3:50pm

Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome...this happens when the sympathetic nerves are damaged in a body part or limb and pain signals are sent from the injured nerves to the brain using the sympathetic nerve chain and the cycle repeats constantly. There is no cure, and nerve blocks in the spinal column help if it is diagnosed in time. Such is not the case with me. I hope this helps.

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on 07/24/2010 3:51pm

Going for the rhizotomy on Aug 2nd. I'm already disabled, can't hurt any worse.

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on 01/04/2011 11:40pm

Hi. I was wondering.....did the Rhizotomy help???
I have had RSD/CRPS for over 18 yrs., now. The initial "bout" of it began after a difficult hand surgery on my rt. hand. I really just thought, at first, that I was just having deep post- op pain, until the surgeon took off the dressing for the first time, about 8 days after the surgey. I IMMED. YELLED, (unlike me!!) "Put it back on, I can't STAND the air- it's excruciating and is giving me the WORST case of the "Willies" that I have EVER had"!!! HE IMMED said, "Oh my God- we have to get you to P.T. FAST and do aversion/de-sensitising therapy immediatly!! I am SOOOO sorry!!" MOST of the time it's at bay, BUT- if I EVER cut myself deeply, or have surgery, it starts again, IMMEDIATELY!! It jumps to other areas almost as if it has a mind of it's own!! I DOES have a LIFE of it's own!!!
I SO feel for you!!! I now have severe Osteoporosis, due to Steroids, at age 50, (!!) and am sitting her w/ a broken rt. hip and back, and, for SOME unknown reason, it HAS NOT kicked in.....yet!! I am SO grateful!!!! And, I PRAY that I haven't just JINXED myself!!! Good Luck- I'd LOVE to know how you're doing!! Congrats, by the way, on your marriage!!! I hope that I am as lucky one day.......
:) Becky

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