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

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

Thanks Karen,
Which doctor would be the one to decide about before and after treatments? Currently I am only seeing my family physician and the orthopaedic surgeon. My problem is that I have no insurance, did not qualify for medicaid because I have not been approved for disability ( 7 months wait here in VA) and now have no income. I had to reduce my existing resources to poverty level in order to qualify for Medicaid and then was denied. I am only having hip surgery because I qualified for Charity Care through the hospital. I still have to pay for surgeon, anaesthesiologist, and any other disciplines than are involved who bill separately from the hospital. Thankfully, my church family is supporting me quite a bit financially and in other ways. I don't know if the hospital's financial assitance program would pay for all of the before and after treatments you recommend. I think I will give your recommendations to my orthopaedic surgeon anyway and see what comes of it. I have my post-op appointment on Monday and surgery is scheduled the following Monday.

Ginny

Hi there. I have to respectfully disagree with Diana on this point, if appropriate precations are taken. Please check out Mslday's response to a posting I put up the other day, regarding a very successful surgery she had last summer in Germany. (She's posted on it earlier.) The German doctor call it "peridural anesthesia for the lower limbs." Sadly, she says that in Germany, it's now regarded as the "gold standard" for treating new (accute) cases of CRPS. After being on this forum and it's predecessor for years, I can't tell you how much sorrow that fills me with, watching newly diagnosed patients or their parents doing everything in their power to find adequate treatment:

"For a GREAT article on the subject, written for the general reader, see, "The Painful Truth: The Iraq war is a new kind of hell, with more survivors - but more maimed, shattered limbs - than ever, a revolution in battlefield medicine is helping them conquer the pain," by Steve Silberman, Wired, Issue 13.02 - February 2005 http://www.wired.com/wired/archive/1...ain&topic_set= The story tells the tale about how one anesthesiologist from Walter Reed revolutionized the treatment of horrific battlefield injuries, all by pumping local anesthetics into the site of the wound. "

Hi Mike,

Great article. This is the same technique I was given following my surgery in Germany this past summer. I had the pump going continuously for 1 week. German doctors consider this the "gold standard" for treating newly diagnosed RSD cases and have been using it with great success for years (they call it a peridural anesthesia for the lower limbs). For the upper limbs my doctor said that they can access the nerves through a spot somewhere in the neck area. I'm happy to see that it is finally making its way to North American hospitals because it will make a huge difference.

MsL

In any event, the entire thread is at http://neurotalk.psychcentral.com/thread72276-2.html if you want to check out some of the other references I posted, basically the same stuff GalenaFaolan referred to in her post on this thread on November 10, 2008, which has apparently been overlooked.

Mike

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

Deb, Thank you for your post. I am so very sorry for your RSD proliferation. My prior question was about, exactly your issues. I am so sorry that your experience had to occur, but at the same time, I am pre-2nd surgery looking for so many answers, so I am, in a very guilty way, eternally thankfull for your sharing your experience. I wish you the best!

Dubious