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 09-30-2008, 10:20 PM #1
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Default dr visit sends me in another direction again

Hi - just needed to vent and hoped someone here would understand. I have been doing acupuncture for rsd in my right knee (after tkr 12/26/07 did not go well). Ortho did manipulation of knee in March - but did not gain anything from it and he has not wanted to do any more visits - sent me to Pain doc. Pain Doc has me on methodone, oxycodone, lyrica, cymbalta and I'm still in pain - cannot get knee to bend or straighten. Has gotton so bad I can't drive which is really driving me nuts (so to speak). We finally made decision to file for disability - have appt next week. Well, I thought I should go see the ortho doc since I was applying for disability. He states that he now wants to do surgery on my knee (which he wouldn't talk about earlier) and open it up to clean out any scar tissue - he now thinks this is why it wont bend. He stated he would talk to the pain management doc to make sure the anesthisia would be taken care of - maybe a pain pump in the knee, in the hospital 2 extra days or so to maintain the pain. I am sooooo confused at this point! I will do anything to make this pain go away and be able to move - but not sure if this is the right thing to do. And now, how will this effect my disability petition? I don't want the RSD to flare up - cant imagine more pain - but yet - I can't imagine not being ever able to move more than what I can barely do now. Sorry to ramble - this has just gotten me more upset than what I am lately! Any input from anyone is appreciated!
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Old 10-01-2008, 02:19 PM #2
debbiehub debbiehub is offline
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Default Be careful!

I would suggest you do a lot of research before going thru with the surgery. I have RSD in my foot which spread to all extremities after a hip replacement. For me the surgery was a huge mistake. So you should talk this over as much as possible with as many doctors you can til you feel comfortable with the conclusion

Don't rush in to anything!!

Deb
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Old 10-01-2008, 06:09 PM #3
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I hope you get the information you need to make an informed decision on this. I wish I could help you but my RSD is in my arms and I havent faced the kind of choices you are having to make. Thats one of the hardest thing about RSD. It is so different for each of us it can be hard to get information. Take care & know at least you are not alone. And dont rush into anything.
hugs, Denny
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Old 10-01-2008, 07:01 PM #4
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Quote:
Originally Posted by lindkaye View Post
Hi - just needed to vent and hoped someone here would understand. I have been doing acupuncture for rsd in my right knee (after tkr 12/26/07 did not go well). Ortho did manipulation of knee in March - but did not gain anything from it and he has not wanted to do any more visits - sent me to Pain doc. Pain Doc has me on methodone, oxycodone, lyrica, cymbalta and I'm still in pain - cannot get knee to bend or straighten. Has gotton so bad I can't drive which is really driving me nuts (so to speak). We finally made decision to file for disability - have appt next week. Well, I thought I should go see the ortho doc since I was applying for disability. He states that he now wants to do surgery on my knee (which he wouldn't talk about earlier) and open it up to clean out any scar tissue - he now thinks this is why it wont bend. He stated he would talk to the pain management doc to make sure the anesthisia would be taken care of - maybe a pain pump in the knee, in the hospital 2 extra days or so to maintain the pain. I am sooooo confused at this point! I will do anything to make this pain go away and be able to move - but not sure if this is the right thing to do. And now, how will this effect my disability petition? I don't want the RSD to flare up - cant imagine more pain - but yet - I can't imagine not being ever able to move more than what I can barely do now. Sorry to ramble - this has just gotten me more upset than what I am lately! Any input from anyone is appreciated!
I agree with Deb, be very careful. I just had surgery done on my rsd foot, had 2 of 3 screws removed, necessary because they were lose and causing more pain and flaring up my rsd. Ya... I was the girl with a couple of loose screws or in other words, I wrote the book on "How I got screwed by an orthopedic surgeon!

I was given a peridural catheter for 1 week following the surgery, it was great while I had the peridural, but I'm really struggling right now. I just hope that my rsd does not spread any further . I will never have surgery again unless it is absolutely life threatening.

Have you thought about seeking a second opinion.

I wish you all the best.

MsL
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Old 10-02-2008, 08:14 AM #5
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I am so sorry that you are going through all of that

I agree with the others, please be very careful and do a lot of research before you decide to have any surgery on your limb that has RSD!! I had a nerve block in July 2007 when I was first diagnosed with RSD, My PM Doctor injected directly into my leg that has RSD and I ended up suffering from complications, I developed balance and co-ordination problems and was in a wheelchair for over a year. It was only when I had the nerve block that my mom found an article on the internet stating that you should NEVER inject directly into a limb that has RSD unless you absolutely have to. In April of this year, I developed an ingrown toenail on my RSD foot and had to have what was supposed to be a minor procedure. The procedure caused me to developed really bad muscle spasms. I don't want to scare you by any
means, I just wanted to warn you about what happened to me when I had those operations. I read an article that say's that to prevent the risk of RSD spreading during surgery, many doctor's give their patients a nerve block before and after and it can work well.

I also have difficulties moving my knee and foot. I have a condition called Dystonia as well as the RSD, some of the symptoms you are describing sound like the symptoms I experience. My foot is locked out to the side and I can't move it. Dystonia can occur in people that have RSD and the main symptoms are limbs locking into position and muscle spasms/tremors.

I wish I could help you more. Just know that I am here for you if you ever need to talk.

Love, Alison
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