CRPS or RSD and surgery - Pain Management Message Board

aicirtapo · 01-20-2005, 11:47 AM

I have arthritis - was using unloader brace and getting around okay when i had car accident. The unloader brace ramped into the knee when I was rearended forcefully and damaged branches of the saphenous nerve. Now I have CRPS which left me completely immobile for a while, now on drugs (clonazepam, Neurontin and Celebrex) and water therapy but still have 30-50% of the burning sensations. Of course, I am in a law suit over the accident. I will be going to a Pain Clinic which may or may not get rid of the CRPS ( probably not since I have had it for four years). I cannot wear my brace because it rests on the nerve and makes things worse. My lawyer is afraid the other side will argue that if they pay for the Pain Clinic they will not have to pay for wheelchairs, adjustments to cars and house. My Orthopedic doctor says I can never have a knee replacement in his opinion even if I get rid of the CRPS pain because no doctor will ever be willing to disturb the nerve - that once you have CRPS, you have it for life - if the pain goes away, it is only in remission. Do you have any information on this subject of operations on someone who has or has had CRPS. i don't feel I will ever be willing to disturb the nerve again, having gone through the severe pain of CRPS once. My doctor indicated even a half knee replacement would disturb the nerve. I worry the other car's insurance doctors will have a different story and need solid medical information. My heart goes out to anyone who has RSD or CRPS and if I can help anyone with information about what I have been through I will gladly do so. Right now I need to know about surgery on an affected limb.

feelbad · 01-21-2005, 06:59 AM

I am kind of in the same position as you are,believe me, you have my sympathies.i have RSD in my knee along with some structural damage and a really huge bakers cyst.The pain in there is just incredible.I really do need to have surgery done on the knee for several reasons but have been very very apprehensive about doing so for fear that the pain would become much worse than it is now.Now,it is about at a 7-8 most days with these flares from hell that definitely go to 10 and beyond.As i am sure you know, just trying to actually explain to anyone including your docs,as to the bizarre nature of this insidious pain and how it is on a 24/7 basis,the horrendous flares and just how incredibly wierd this all is is virtually impossible.It is definitely one of those 'you have to feel it to really understand it's true depth of agony".This really makes it hard to try and get the average doc to really understand the major worries that you have about surgery and the possible risk of increasing an already almost intolerable pain level.Luckily for me, my ortho completely understands my concerns and really has the same worry for me.I have tried every imaginable non surgical way of trying to get this pain down to a much more tolerable level and in doing so really discovered the hard way as to just how sensitive my knee is to having ANY type of a procedure where the skin is actually breached by anything.i had a cortisone inj done last May that sent me through absolute hell for two weeks.Within 15 minutes of that injection, the inside of my knee felt like here was a blow torch inside burning the flesh from the inside out.YIKES!! I already had some pretty intense burning there but no where near this hidious level.The deep bone ache I had had in there really went over the top as well.God, I thought I was gonna die,or maybe I just wished I would.it felt like my entire knee had just exploded!Luckily i had my regular pain clinic appt about two hours later and they were able to raise up my Oxy IR for the duration of this nightmare.but even at the two week point, I was still way above my normal high level of pain and it has stayed there pretty much the same after all of these months.It was after this experience that I found out that people with RSD have to be very very careful about having any type of invasive or even slightly invasive procedures done on an affected extremity.so, now I am stuck here as to just what I need to do as I am absolutely terrified of just what a surgery on this knee would end up causing.I am sorry i don't have any "real" answers for you,but just wanted you to know that "I do feel your pain".Have you checked out the RSD board yet?there are really some very wonderful and caring people on that board,maybe they would have some suggestions for you?good luck.Marcia

aicirtapo · 01-22-2005, 04:52 PM

Yes I have moved over to the RSD board for the most part. I too am scared of having surgery right at the site of the RSD and in fact my doctor told me no one would do it as it is too problematic. I am now out to protect the leg as much as possible and have ordered power chair. Was using scooter but it was too big and hard to get around places. Someone else on RSD board answered my submission which was similar with this one and said they had had a number of surgeries away from the site of the RSD and had Deep Epidurals for days after which kept the RSD from spreading. She must have a great doctor. Check that thread out started by me. But even she did not know about surgery at the CRSP site. Cannot find anyone so far who has experience knee replacement surgery after getting CRPS in the knee. T here are a few about Carpal Tunnel where they may have had R SD in the first place and when operated on, the RSD got worse because a block was not used. Don't know if that would be similar. Are you sensitive to cold or heat . I have found being able to really exercise hard in the cool pool has done wonders for me - I only do certain things with the knee. Is this possible for you or are you sensit ive to cool water. 82degrees is safe for me. Hot tubs kill me. I wish you well in your search for solutions. Laura

feelbad · 01-23-2005, 07:26 AM

because my R side is also messed up from the sympathetic nervous system damage and the thalamic damage in my sp cord, I developed what is called Brown-Sequard syndrome from just under the R breast on down through the bottom of my foot.This causes some really bizarre type symptoms.My cold feels hot and the hot feels cold,and i also can feel even the slightest touch, but if you were to stab a needle into anywhere on my R side,even the sensitive stomach area?I do not feel the pain,only the sensation of the needle.Now how is that for totally bizarre?I also have a strange reaction with the RSD affected areas I have to place ice on my knee in order to get relief,but it cold even touches my foot, the pain is horrid.The same thing happens if i place heat on my knee.my body is sooo incredibly screwed up now from all of the nerve damage i have.My primary doc just cringes when he sees me sitting in his office as everything is such a mess with my body now and nothing really "makes sense" with regard to normal functions.I am an adventure to try and deal with these days.Marcia

aicirtapo · 02-18-2005, 11:39 PM

Hi Marcia - have not been on this board for a while because I switched to RSD board. How are you feeling now. I have discovered paper on operating on RSD limb using Epidurals and a drug called Calcitonin. Paper is report of various type of procedures tried on RSD patients and is called Preventing the Development of Complex Regional Pain Syndrome After
Surgery, by Scott S. Reuben, MD If you do a search you will find it in one of the RSD site Libraries which also contains many other medical articles on RSD and various treatments, problems etc. I still would not have my knee operated on unless there was a lot more research into this form of treatment but I expect there will be and that gives me some hope for the future. I will mark this thread so that if you reply I will get notification. Laura.