I have had RSD for four years now and have been diagnosed with osteoarthritis in both hips; severe in right, which is side originated in on me. Am allergic to most pain meds, orthopedist recommends hip replacement, as rt hip is bone on bone, but pain dr says no due to risk of flare up from surgery. Pain dr says rsd doesn't spread without another trauma and just wants to pump me with meds and injectioins.. Anyone have any advice?

This is a classic situation. I am in the same boat.

I need a knee replacement, but am afraid to do so because of the risk of CRPS spread.

What it gets down to for me is this. When the pain from the joint is to a point I can't take it any longer, I'll get the surgery.

I have done quite a bit of research on surgery/spread and interviewed both surgeons and anesthesiologists.... there ARE things that the anesthesiologist in concert with the surgeon can do prior, during, and after the surgery that will help "calm" down the nervous system and give you the best shot at not having a spread.

There have been many people with CRPS that have had surgery with no spread. Do these preventive blocks, therapies, etc. completely eliminate risk? No. But we as human beings have to make "risk vs reward" decisions all the time. But you need to make educated decisions, especially on something as important as this.

Eventually, you are most likely going to reach a paint of joint degradation where you have to do it. "When" is the question that only you can answer. If you choose to go ahead with surgery, please do your homework and have some deep discussions with your surgical team long before that day arrives.

Good luck!

Welcome to Neuro Talk. Please get another opinion. I was told "NO" by an orthopedic surgeon for surgery to correct my ankle, including joint and ligament replacement. Don't do this surgery without the very best information. The doctor is wrong. RSD can spred by cutting of anykind. Infusions sometimes do work to prevent the spred. Not all doctors know enough about RSD to make the recommendation. I will keep my ankle, sore as it gets, as i don't want to take any chances of making this burning worse. I really wish you all the best. I also hope you find a compassionate doctor, who knows alot about RSD. ginnie

Thanks for the replies to this. I have been to several pain management drs, but only this one since the arthritis diagnosis. I tried to see a rheumatologist, but she wouldn't see me; said she couldn't do anything else for me. If you know of a good pain dr near Columbus, Ohio, I would appreciate the info. Thanks and soft hugs.

Tough spot to be in; I'm sure it weighs heavily on your mind. I personally have had several surgeries since diagnosis and no spread that I'm aware of. I wouldn't get anything done unless it really needed to be, but I also tend not to fret over everything.

There is a system which is being used by a couple of US doctors which they claim has been 100% succesfull in preventing flares or spreads. I am waiting for second appointment with a Professor over here to see if he is willing to use it on me.
They use a continous full sympathetic nevre block, for amputations it's from 48 hrs pre-op to 48 hrs post

Its a hard descion, but it has to be your descion to make. I had the option to have a surgery done for my left shoulder/arm/scapula and thats my worst side for RSD and I decided to not have the surgery because I didnt want the RSD to spread and then I knew if it would the surgery wouldnt be sucesful like I would want it to be. You also have to take factors into place, Like i was going to have to be braced for 2 months with no movement at all because the graft needed time to take, which is terribly bad for RSD paitents, and then I was going to have to go threw very intense PT, and I dont tolerate that. So yes i probley do live in more pain then I have to, but i didnt want to make the situation worse then it already is and that was a chance i was going to have to take and I didnt want to take it, and that was going to be on me, not my surgoen. So just go over all the factors that involve the surgery. And you decide what you think is best for yourself. I know its very hard!

I had a total hip replacement after being dx w rsd. Every day I wish I could go back and run from the surgery. I only had rsd in my foot. After the surgery I developed full body rsd. I also Have muscle wasting every where! It been about 10 years now and I don't know what I'm going to do when this one fails...so my advice is to run from surgery!

Deb

Thanks so much to everyone for your replies and advice. Until I get some good answers, I will be staying away from surgery. Not only do I have severe osteoarthritis in my hip, but a bad bunion on my left foot that causes me terrible pain. It is hard to know is the pain is intensified by the rsd or just foot pain. I was able to put up with it in my rt foot for many years before having the bunion removed, but that was b4 rsd, I am still youngish and am concerned about my mobility in the future. I move as badly, or worse, than my folks who are 35 years older than me and have had replacements. Oh well, sorry to vent. Hope you all have a good evening and a pain free weekend. Hugs.

Put it off as long as you can got appointment to see Professer om 19th Dec to see if he's willing to experiment on me