Hi everyone,
I am new to this forum and I am looking for people to talk with about any surgery experience they have had since being diagnosed with RSD/CRPS. I am in a situation with a fractured sesamoid bone and was diagnosed with RSD/CRPS 4 months later. That was last year 7/2007 and my pain level is doing real well at this point. The surgery will be the only way for me to get my life back and to walking properly w/o a walking cast or these pads I need to put into my shoes to alleviate the pressure at the fracture site. But I am extremely terrified of the RSD/CRPS spreading and making my life worse than were I am at right now. The Drs. are willing but have suggested very strongly to not go through w/it. Any suggestions, help or experience would be greatly appreciated.
Thanks!!

Hi and Welcome Islandgirl,
I'm sorry if you have rsd. You'll find so many supporting and caring friends here on this forum. I can't believe how much I've learned by reading not just present posts, but by going back and reading as much as I can, including introductions.
No, to answer your question, I have not had surgery since getting RSD. I got RSD the day following surgery to my left breast to remove benign tumor from deep in breast and arm pit. The following day, my entire arm swelled at least doubled and had Dr. remove fluid two or three different times. Next thing I knew, my shoulder was frozen. The surgeon sent me to Rehab Dr. down the hall and then on to physical therapy. It kept spreading on to the other shoulder etc.-full body.
To answer your question, no, I have not had surgery. I have skin lesions, red bumps that turn to dark moles. I asked my Dr. who is a neurologist, pharmacologist, pychiatrist, if he would take them off. He said no, ( his malpractice insurance won't allow him to do any procedures on RSD patients) He had just purchased 3 skin disorder offices for different procedures. He had to go outside his regular practice to a different insurance company to get covered. There are a lot of surgeons that disclose to their patients the danger of getting RSD from surgery. My daughter is a court reporter and has covered this issue in court when the physcian failed to disclose the risks. She does malpractice suits.
Others will answer your question. and the common consensus is the risk of spreading rsd thru surgical procedures.
Most have said 'absolutely necessary' only. There are procedures to do if surgery is necessary. Someone more experienced than I would know.
I know before I go to dentist, they give me antibiotics, and use numbing gel and nitrous oxide mask. Afraid of getting it in my mouth.
Take care, and please know we are a caring bunch that try to be understanding, supportive, and really want to help. Loretta

I had a hip replacement after being dx with RSD and it was the biggest mistake i made- The rsd was only in my foot but now is spreading thru out my body. Stay away from surgery if possible

Deb

Do a search for rsd and surgery. From the medical literature I've read, having surgery doesn't have to equal spread and more pain. Someone else on another board mentioned surgery to fix a foot problem that is complicating her case. This is what I told her based on what I've researched.

As for being unable to have surgery, the good news is with the proper precautions before and after one can have surgery successfully with no spread or flare in pain. I've "seen" quite a few people around the web that really needed surgery for one thing or another and were fine. Have an epidural catheter with local anesthetic with or without pain meds at least 12 hrs before the surgery, then have the epidural in for 3-6 days after surgery to prevent a flare and hopefully any spread. When you keep the sympathetic nervous system "normal" it won't spread because the nerves don't flare up. All of this of course means a hospital stay of 3-7 days even for something that might be an outpatient procedure but it sure beats the heck out of what might happen without all the precautions!

You can have your doc do some of his own research as well. He'll like read some of the same medical articles I have. LOL Go to http://www.rsds.org/2/library/articl...ive/index.html and scroll down to the CRPS and Surgery part. There's a few articles there that are good. It's where I got my answer from and just condensed a part of it.

Hugs,

Karen

Islandgrl, I am responding to your post because I have been agonizing for the last six months about going through with a surgery knowing I have RSD in my left arm. I am terrified to go through with any surgery because of the fear of spreading RSD. I have had RSD for almost two years. It got it after I had my ulnar nerve moved in my left arm. I have RSD from hand to shoulder and into my neck. I took me almost two years to get it to calm down and I don't want to go through another serious flare if I can help it. I would like to keep it just to those areas if at all possible. However, as luck would have it, I have a fairly large bone tumor growing in my right hand. It was found by accident just one year ago when a hand surgeon wanted to see how much bone loss I had in my left hand from the rsd. And there it was, this big, black hole on the x-ray in my right hand. These tumors are called enchondromas. They typically are not cancerous but they can turn into cancer given enough time...

I have seen several doctors since and all of them (except one neurosurgeon) has recommended I remove this tumor. This will be a big deal because it will require a bone graft from my wrist. I am now seeing the tumor pop out of the bone in my hand and it is starting to hurt. It hurts to hold things or to put any weight on my hand at all.

I have been to the Cleveland Clinic and that is where I shall do the surgery if I elect to go through with it. They are the only group of doctors I have found who are experienced in working on RSD patients. I have another appointment next month with Dr. Michael Stanton-Hicks to determine how to block the arm, what type of precautions to take, etc. He is the only doctor I have seen who sees RSD patients on a regular basis. I am so scared I can't even put it into words because I know the risk I take by having a surgery on my upper limb of all things (which is the most likely place for a spread).

I can't advise you what decision to make except to say I can so empathize with what you are going through and the fear and anxiety that comes with this situation. I suggest making a trip to CC to see Dr. Hicks or to see another RSD specialist before going through with any surgery to your leg. At least learn how the experts would block the leg and what precautions they would take to reduce the risk of a spread.

I know what this decision is like - stuck between a rock and a hard (very hard) place. Good luck.

Lisa

Hi Loretta,
And, I too am sorry that you have RSD - it is quite something isn't it??? So much to contemplate and deal with. I must say that I am one of the lucky ones so far (my fingers and toes are always crossed) that hasn't had any spreadage and that is why I am so reluctant to surgery - even though I have been told about the precautionary measures.
The PM I see can hardly believe it, as do I. My husband has known about RSD for sometime now due to the fact that his closest co-workers son has been dealing w/it for over 15 years now and his is very extreme - he is doing the ketamine treatments. They didn't know anything in our area then. I also travel an hour to see the right professionals (as this area is "green" as my one Dr. I found said) and I am going to get another opinion or two before I go through with the surgery, if at all. I have seen both sides of the advice - same say yes, some say no, that they wish they never had and that is not where I want to be.
I appreciate you taking the time to contact me and I wish you all the best in your journey - be in touch anytime. You are right about the support here so far in 1 day it has been great - :-) Take Care - Robin

Hi Deb,
Thanks for contacting me about your experience - I am so sorry to hear what happened to you - that is what I fear the most and why I am so reluctant. May I ask - did you have all the precautionary procedures before, during & after?? I wish you all the best and hope and pray that you find some much needed relief - it is a long road dealing with this. Have you tried and I am sure you have any anti-depressants - I am having pain relief with them - and still do the neurontinas well. Take care...Robin

Hi Karen,
Thank you for posting for me on this subject. My question to you is - have you had any surgeries with RSD present in your body???

I know about Scott Reuben all too well - I have probably read everything I have found on his research. I would love to be closer to Boston to be in their clinic - although, it still isn't completely out of my mind. The hospital I am dealing w/is very well educated and all these precautions will take place - it is still a very hard decision to make because if it doesn't work there is no turning back. I have heard from people that it doesn't work for everyone. But, as my sister-in-law said - I will never know untill I try it. Easy for anyone who isn't living it and knowing how bad it can get to say that.
I hope that you are one of the many tried and true cases - that gives hope!!!

Hugs back at ya,
Robin

Hi Robin,

I'm so happy to hear that you were able to get quick timely treatment for your rsd keeping it at bay. That being said I understand what you are going through in the decision to have surgery. It was not one I made easily as I always believed that if it is not life threatening than those of us with RSD should never have surgery.

I have been in post-surgery recovery following a surgery in my rsd foot this past August. It was a need to do surgery!

During a bunion surgery in 2002, 3 screws were placed in my foot. I developed RSD immediately and they did not want to remove the screws for fear of further complications. The screws were ultimately causing a vicious cycle of pain and RSD flare ups. After each lidociane treatment, every 3 weeks, I would regain full range of motion in my RSD foot. That would place a fairly significant amount of pressure on my foot and the screws became loose causing more pain. (yes I'm the girl with a couple of loose screws)

To date I'm doing very well. 2 weeks ago I cancelled a series of 3 scheduled lumbar sympathetic blocks because quite frankly I'm doing better than I was before I had the screws removed. Following the surgery I received a 7 day continuous peridural anaesthesia treatment in Germany. Upon my return home I received IV lidocaine infusions, once each week up until the end of October. I am now back to a 3 week schedule for my lidocaine infusions, my pm dr does not think I should go any longer than that without another treatment. I still have good days and bad, feeling great one moment and than crashing with rsd pain the next. Despite those pain spikes overall my pain levels are fairly stable ranging between 1 -3 on average. I can't take most RSD meds due to sever reactions so I'm limited to Tylenol 3's and Ibuprophen I can't take anything for the burning pain, the lidocaine helps me with that. 1 month ago I started to take an enzyme called Serrapeptase and I have been feeling great ever since. I don't know if it is the enzyme or the intense lidocaine therapy my dr gave me that helped me turn the corner but what ever it is Í'll take it and keep it.

I am happy I went through with the surgery and had the screws removed (they were only able to get 2 out of the 3). I believe my quality of life will be better in the end despite all my fears. I'm happy to be seeing the other side of life and RSD post surgery.

I have posted my experience on other threads related to RSD and surgery, if you wish to discuss further please PM me.

I'm wishing you all the very best as you go through this and hope you are able to get all the answers you need to make the right decision for you.

MsL

I am very nervous about having surgury because I have several other diseases that I have had before i got RSDS. I want to have a hysterectomy to get rid of my Endometriosis and my PCOD. If anyone else has any suggestions...please let me know...