I have a question and hope someone can point me to some studies on this. I couldn't find any in my own search.

With CRPS type 2 caused by nerve damage, does surgery still carry the same risks of making it worse as it does with CRPS type 1?

The hardware implants in his ankle may need to come out, but surgery is a big decision of course. Thanks all.

I have CRPS2 and spreading. Early on, wthin a year....I had hardware taken out. Update from my neurologist, surgery is a last option. I have compressed nerves in my neck and unless this is a health risk, his professional opinion is unless it's life threatening it's best to monitor.
I am also older. So I am sure that comes into play.
Hope this helps.

Hi Swimtime,

It seems intuitively that there would be risk either way. I'm sure that whether they are able to address the pain contributor and how delicately they handle the tissue makes a difference.

When I had my ortho surgery that caused the damage I had a lot of bruising and swelling, it was a 25 minute procedure. When I had my nerve repair of 3.5 hours I had no bruising at all and minimal swelling. The difference was the tissue handling. The plastics guys are careful and meticulous.

I haven't seen any specific literature on risk breakdown of surgery with CRPS 1 or 2. CRPS 2 is less likely to spread and some of the later studies have indicated that surgery is recommended for CRPS patients if the pain contributor can be addressed. Does the hardware have to come out eventually no matter what due to your son's growth? That may sway the decision.

Hardware doesn't necessarily have to come out. Ortho doctor recently said that she's willing to take it out, but she's giving a 50/50 chance of it helping or making it worse. It's hard to say for sure if the hardware is part of the problem, it's never been really clear cut in his case. The pain is only directly over the hardware recently as he's started using it more with the rollerblading. So we're just waiting it out and giving it more time in hopes that he will continue to improve without surgery.

I was told the same thing. Not necessary and 50/50. But I had an overload of hardware. When looking over my x rays it was like whydid you have that full bicycle chain put in.....
Good that you are monitoring.... Keep us updated...

i am not sure about the impact of surgery and implants for crps II. i have crps I so i know that surgery can cause spread in crps I. but i was also told having any kind of implant could cause spread in crps I as well. (that's why i have avoided dental implants for the teeth i had to have pulled.) if i were you i would get several opinions from your drs i.e. pm dr, neurologist and gp and then make the best informed decision you can. personally i've gotten spread from surgery and from just banging my hand accidentally on something. i don't think there is any sure answer to the question of crps/rsd spread but if i had implants that did not need to come out and i wasn't getting spread from them, i would probably avoid surgery if at all possible. but i am not a dr so please don't go by my opinion. it's just what i think i would do if i were in your situation. hope whatever you decide you feel better soon. hugs.

I have done a lot of searching about type 2, as they have given me that diagnoses more often than anything else. The only thing I have found was that any surgery should be above the affected part of the limb. I can't remember where I saw it, but the idea was that type 2 was less likely to spread if the affected part of the limb wasn't disturbed. I don't know how this would help for your hardware removal.

Well, here we go. Hardware is coming out Monday, November 9, by an ortho surgeon who is well versed in CRPS. The conclusion is that the hardware is likely why he finds it painful to raise his foot during the gait cycle. In any case, it adds to pain and makes his foot stiff and drives him crazy. He has wanted it out for a long time. We're hoping and praying that he will have much less pain walking without all that in there.

I've been doing some research on what precautions can be taken to make sure surgery doesn't cause CRPS flare. One interesting idea was to make sure the iv bags are warmed, so the limb doesn't get too cold. That makes sense to me, because his foot always feels better when it's warm.

Any other ideas or suggestions or research you could point me to would be great!

Hi Swimtime!

So funny you are here, I just checked your page to see when you were on last because I was wondering how your son was doing.

This surgery may be just the thing. I so hope he gets great relief! I am sure having half a hardware store in that ankle doesn't feel good at all.

Current recommendations out of my Stanford trained surgeon are for 900 mg gabapentin given just before surgery to reduce the chance of chronic pain. The antibiotic minocycline dosed as regularly used is recommended post op for a week to reduce activation of glia which are implicated in CRPS.

500mg Vit C daily for 4-6 weeks after. Ask that they use a regional block so pain control lasts a while and ask for coverage of EVERY nerve that may have a little tendril in the area. Anesthesiologists have different ideas about what they think is adequate coverage. You can also ask about liposomal bupivicaine (time release local anesthetic they place right in the surgical field) .

I am sending loads of hugs! Prayers are coming your way. I will put the date on my calendar too!
:hug

I'm looking for "official" recommendations to pass along to the surgeon / anesthesiologists. I asked about some of these things when I met with anesthesiologist, but not sure he thought it was necessary.
If I could take in some literature with the current recommendations, it would help.