Hi rsdslade and welcome!
I have rsd also. I'm sorry you do too. I've had it for 12 years and it would be terrifiying to have surgery. If I absolutely had to have it, I would go to a Dr. and hospital experienced. I've head of CC and Hicks.
I had to have a hysterectomy due to polyps causing excessive bleeding. My Dr. did a vaginal hysterectomy. I couldn't believe re recovery time so different from my C-section.
Has your Dr. discussed Vaginal surgery versus incision surgery? There is a big difference as far as recovery. One would seem less invasive, I don't know. But is that an option?
Wish you the best whatever you decide. Your friend, Loretta

Hi There!

Sorry to hear you are having to contemplate surgery with your RSD - I have been in the same boat so to speak. I will be having surgery this coming Wednesday on my knee where I had my knee replaced last year. Unfortunately, this is also where my RSD is, besides my foot on the same leg. It was a very hard decision, but after meeting with several Ortho surgeons, my pain management dr, and the anesethia dept - I felt this was the only way I could progress with getting my knee to bend. I have arthrofibrosis in my knee replacement, which is not letting me straighten or bend my knee. I cannot work, drive, or do much of anything due to the knee and RSD. The Ortho doc now also feels that the disk in the artificial knee is too large for my knee, and wants to replace it with a smaller one. This should help eliminate some of my pain, and improve my mobility. My main concern was I didnt want any more pain from the RSD , or the RSD to spread. I feel that I have made the only decision I could, as there is nothing more at the moment the drs can do to help me improve my knee except for the surgery. RSD has taken so much from me and my family since I have come down with it. I feel I have made an educated decision in having the surgery by researching and talking to many physicians, and will not let RSD keep me from it, even though it scares me. I suggest you talk to as many drs as you can and weigh the facts. For me, they will be inserting a femoral nerve block for 5 days, besides a spinal block in hopes to keep the RSD from flaring up. I may be wanting to run from the hospital on Wednesday (hehe, as if I could run), but I am hoping this is a "new beginning" in a way to start improving my knee. Good luck to you in your decision and keep in touch!

Hi Islandgirl,

I have had RSD for I can't believe it will be 5 years this January. I have had 3 major and 1 minor surgery since being Diagnosed. Each time I had a surgery ketamine was used as part of the anestheisa(spelling) to keep the RSD at bay which was dictated by my Pain Mgn. Dr. I was lucky because my surgeon and PM Doc work in the same hospital. I am one who has done the 5 day awake version of ketamine w/boosters. At this point in my experience my RSD is calm and some what under control in the original area unfortunately I have had an additional fall and hurt my back the s1 and s2 area and right now that is giving me more trouble then the RSD. I have heard of have epidurals before surgery to keep the RSD at bay but I don't have any experience with it. I would bring it up with your surgeon and anestiologist(spelling) and talk about it in detail. I have seen post on this site where doctors don't take any precaution which I believe is not the correct way to handle it. To some up I don't believe any of my additional surgeries effected my RSD. Everyone is different but some intervention should be done prior to surgery when having RSD. My surgeon felt that my PM Dr was making a big deal his quote was that "is was like killing a fly with a hammer". But I am grateful he insisted because I was really fine after the surgeries.

Good Luck,

Gabbycakes

I am new so please bare with me. New to such a group and the posting too. I still can't figure out how to post a new question!

But to respond to your question, I had minor hip surgery after the dx of CRPS in the lower, right leg. I did not know of any of the pre-procedure techniques several of you mentioned and therefore had none performed. Maybe I'm just lucky or it just hasn't decided to spread from the leg to the thigh - yet. It have been over 6 months and so far so good. I distract myself from even the thought of spreading.

However, I agree with some of the stated opinions that unless it is really, really necessary it be probably best not to take the risk. CRPS/RDS is too fickle a disease to play a game of chance.

Best Regards

Beachedsiren

Posting a new thread is the easy part! On the front page,look at the top, right above the postings and there is a button labeled New Thread. Click on that and you're on your way to posting your 1st post!

Hugs,

Karen

Hi Beachedsiren and welcome!

Sorry to hear about your rsd, but very good news you didn't have spread with the surgery. How long have you been diagnosed? It was 4 years for me and that was 8 years ago. I am from Oregon, where I now know I got rsd following surgery. There are a couple of people on this forum from Oregon. We moved away and was misdiagnosed. I was finally diagnosed back in Oregon.

This is a great group of compassionate rsders. I have personally learned a lot and been greatly encouraged by others. And Hopefully have been able to do the same. Take care, Loretta Jewell

I developed RSD not from the fracture in my foot, but from the surgery to fix the fracture that never healed (3 months after the break). I did have the screws removed from my foot about 9 or 10 months later because the screws were digging into things and rubbing up against nerves. They seemed to be perpetuating the problem. There was a bit of a flare immediately following surgery, but after some blocks, continued PT, HBOT, etc, things have calmed down a lot. I've also been big into supplements and natural treatments, too. I still have RSD, but it is way better than when it was first diagnosed (I've had it for about 15 months). Good luck with your decision. I know it's difficult.

Here is the main page link of the RSD forum -
http://neurotalk.psychcentral.com/forum21.html

To make a new thread look for the "New Thread" button above and below the list of threads.

I've had rsd for over 8 years and had a hysterectomy last June, where they hooked me up to a ketamine drip at the start of the operation, which I stayed on for 7 days, and I also had the morphine button for 3 days, and endones as needed. As a result, my pain levels stayed pretty low while I was in there and the surgery didn't affect my rsd.

Also I had a c/section with a spinal block 2.5 years ago (no ketamine) and that didn't worsen my rsd in the longterm, either. I did have a flare up after the operation and was on continual endones afterwards for about a month, but the rsd didn't spread or stay at that level long term.

If you can get your pain specialist to work with your other specialist you'll get the best outcome. For my hysterectomy, my pain specialist and his team were in charge of all my pain medications and so the nurses and other doctors had to answer to them, rather than my gynocologist. If I asked for 20mg of endone instead of 5mg, they gave it to me no questions asked, as they knew my pain is different to what you'd normally get after that operation.

I'm sure that all their preventative measures stopped my rsd from spreading or getting worse. I wouldn't have had the operation if I wasn't totally confident that they'd give me whatever pain relief I needed, and I'm very relieved and grateful it all went so well.

I hope it all goes well for you, too

x Kate

Hi.

I also have RSD and have had 2 major surgeries. I needed my tonsils removed for medical reasons and just had a spinal cord stimulator implanted. For both surgeries, the only spreading I saw was in my other arm - I think because of the IV's. Otherwise, I didn't have any specific issues of spread.

I do realize that everyone is different. It is very individual and there is no way of predicting.