Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-30-2015, 09:43 AM #11
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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Quote:
Originally Posted by Always_Believe View Post
My name is Paige and I'm in IL presently. I recently moved from TN.
My story goes like this:
Sept. 8,2013 I fell at a store. Landed on my knee and promptly went to the ER. They did an X-Ray ("nothing broken") and a referral to an ortho. I saw the ortho 2 days later who recommended an MRI. Well, my insurance was apparently sleeping at the time, so I was unable to get the MRI until Oct.,13,2013. In the meantime, I worked 250+ hours as a nurse in an assisted living facility...in hella pain mind you.
Oct. 14, 2013 I get a call from the ortho..."Go home and get off your leg. You have a fractured patella. We need to see you in the office tomorrow." Uhhh...okay.
Oct. 15,2013 I am put in a brace from hip to ankle & told no weight bearing. I asked if I would be allowed to hop to the bathroom instead of using the brace. Doc agreed but I was to keep my leg straight in the brace other than for showers (& I still needed to keep my leg straight, just without the brace)
A few days later, I called the doc because I was in more pain wearing the brace than before! So they had me come in for an adjustment. Seemed to help at first but didn't last. So I called again. They said the only thing they could do was put me in a different brace. So I stayed in bed with my leg straight. Period. (I did hop to the bathroom)
Come late Nov/early Dec I tell my doc I have this tingling whenever I put my right foot over my left (the fractured knee side). He blows it off.
Dec. 2013, he tells me I can bear weight & I start PT.
Jan. 2014, he puts a bend to the brace & I have a 2nd MRI. That MRI revealed a meniscus tear as well as a host of other things. Doc says "I can do an injection" HA! I was born in the dark but it wasn't last night fella. Off to a second opinion I go.
March 2014 (yup, that's how long it took to get my records & find another doc) This doc says "I think you definitely need a partial meniscectomy but I need to know more about this tingling. Let's do an EMG/NCS. I had those tests the next day (INTENSE pain, let me tell you!) EMG/NCS positive for peroneal nerve damage. Doc says it's on the border of whether or not he thinks neurosurg can do anything. So let's fix the tear and see how you do.
Apr. 2014 Partial meniscectomy done and PT started the next day. They like to kill me. Anyway, pain is not stopping, my left foot feels (and had for some time) cold to me. I'm thinking it's in my head, so I start wearing a fuzzy sock on that foot.
May 2014 Doc starts me on gabapentin and meloxicam
June 2014 I go on a cruise with my new HS graduate daughter & my youngest son. Flew 2 hours to port. 2 days into the trip, my left foot is swelling. The next day, it's so swollen I can barely walk. I was remanded to the cabin with my leg elevated on life jackets. We rented a scooter the next day.
Once we returned, I saw my doc. Told him I was having trouble with the meloxicam and we both didn't feel the gabapentin was doing much. He starts me on lidoderm patches & sets up appointments for euflexxa injections to start the following week. (1st injection went okay)
Second injection - OMG! Screaming, crying in pain! The office staff got a wheelchair for me to be able to leave because I could not put weight on that leg.
Cut the already long story short:
I haven't seen a doc since Aug. 2014 because of relocating & insurance issues. But the pain I have been experiencing & the nerve injury point to CRPS II. So I came here for advice on finding treatment and support through all of this.
(My sincerest apologies for such a long post)
Welcome Paige,
So sorry you had to find your way here, but there is great support and understanding. You are not alone. No apology is needed. Everyone is here because of some complicated mishap. I would encourage you not to give up on a fixable cause. Many cases of CRPS are caused by nerve entrapment that can be ameliorated. I know they say no surgery but that depends who you ask. If your problem is identified injury at the peroneal, find a peripheral nerve specialist to make the call if anything is be done. Ortho told me I had no options, they don't always know nerves so well. There is an interesting article by Susan Mackinnon MD et. al "Nerve re-section, crush and relocation relieve CRPS Type II: a case report" that says there are options in some cases.

In another stage of my journey I had my posterior tibial scarred down from a "minor" ortho procedure that also partially transected my calcaneal branch leaving me with a painful neuroma. Whoops. Ortho insisted my procedure had been successful LOL. In desperation I saw two plastic surgeons who did a peripheral nerve fellowhip at Washington University - one practicing in Dallas, one in Houston - both said the same thing. I had identifiable entrapment and they could do something about it. One did a "scratch-collapse"test to find the lesion exactly. 3.5 hours of microsurgery later the shooting pains and agonizing hypedermics jabbing me were gone and still are. Is it like it used to be? No, but I can sleep at night and don't whimper on the couch like a wounded animal all the time. I later developed more CRPS-y symptoms following a separate procedure to take an aggressive fibroma out of my sole where there are loads of sympathetic fibers. Still recovering from that one.

I say hang in there, don't take no for an answer till you've satisfied yourself and keep up the fight!
Sending Healing Love
Littlepaw
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