Question Title: Could this be RSD?

Dear Cheryl:

Sorry to hear about your pain. What was the sympathetic block done with? RSD is a fairly rare condition that is usually terrible pain that induces temperature change in the limb of question, sometimes swelling and sometimes discoloration. It is difficult to move the limb in question for the patient, and with immobilization, there is bone loss and limb atrophy (muscles). I think the would see another neurologist for a second opinion. Hopefully the block was chemical and will wear off and you will back to your baseline.

Sincerely,

CCF Neuro MD

I have an "RSD-like" issue. The sciatic nerve was damaged during knee surgery. The symptoms were very similar to RSD, however, EMG and nerve conduction studies showed nerve damage at the site of the tourniquet. This was almost 3 years ago. The pain, sometimes bearable, sometimes not. I have had some regeneration of nerves so as to have improved motor skills. Though still have to wear a "foot drop brace." The circulatory issues are of major concern. I now have avascular necrosis in addition to the osteoarthritis (I am now bone-on-bone). Pulse is palpable, though faint. Sometimes can only be found on Doppler. Significant muscle atrophy. The orthopedist said that there is nothing that can be done for the knee because of the nerve damage...as he said"I can't even blow on your leg without you going through the roof. There is no way I could operate on this knee. The post-op pain would be intolerable." Additionally, healing and infection issues are of serious concern. The only solution they (ortho and neuro...both at Hopkins) have is amputation above the knee. Of course, pain is exacerbated by nerve damage, though there is definite reason for knee pain and the "average person" would have knee replacement. I am 41 years old. The greatest concern is phantom pain. And, of course, there is no telling what the extent of that would be. I have done much research (3 different neurologists, an internist and 4 orthopedists). Additionally, I have spoken with a number of people who have had amputations (2 for diabetic neuropathy (1 AK, 1 bilateral BK), one for RSD and several others for crush injuries). All have said that the phamtom pain is definitely there in the beginning, though subsides as time goes on. Basically, this is my decision and I am trying to be as educated as possible. Though there are many unanswered questions, which will only be answered after the fact. However, the general consensus is that the "quality of my life" would improve with AK amputation...at least for a number of my younger years. Additionally, due to the necrosis, and numerous infections in my lower leg...all from mosquito bites...that I will lose the leg at some point in time anyway. I am on Neurontin, Paxil, Ultram, numerous vitamins (C, E, B Complex and a multi), Glucosamin/Chondroitin (for the "good knee"). Just trying to decide whether "this is the time." Tough decision! Any input would be greatly appreciated. I am sorry to be "getting in" this way. But I have been trying to post for several months and have been unable to. I am desperate! I have searched this board to see if there was anyone with a similar situation. Guess mine is rather unusual.

Dear Cynthia:

Wow, sorry about all your problems. Sounds like you had a tournquet injury. We do see these and they usually sound like yours. I wish there was something to say. Sounds like your holding up okay and have a good attitude. Phanthom pain is an issue, but pain in general is an issue. We do not fully understand chronic pain nor do we understand how to medically treat chronic pain syndromes. I guess, the state of your lower leg will determine when your decision will occur. Hang-in there, there are many people in your state and I bet many are pulling for you. Let us know if we can help.

Sincerely,

CCF Neuro MD

Also, what is the chance of RSD showing up in her knee if she were to have to under go scope surgery on her knee? Do you folks have any experience in things like that happening. She is concerned. When she first started exhibiting symptoms of RSD, the pain was just about unbearable. She pleaded to have it cut off several times. No amount of Vicadin or other pain killers did a thing to relieve it either. When she got the blocks, and she got on Neurontin, live looked as though it could go on nicely. The big problem is that Neurontin has listed as a side effect: "May cause memory loss." It has proven to be more correct to state: "Causes memory loss."
Is there any light at the end of the tunnel? In your clinical experiences, how long does RSD usually require pain control medication or is it too variable to estimate. If necessary, I can supply the words she needs at time and recall folks names for her, but I can't give her back the hundreds of pages of piano music she had memorized. There are times she can't even remember the starting cord let alone the music. What is Doc?

Dear Ken:

Sorry to hear about your wife. Yes, we have had patients who complain of memory loss, but I must admit, it is a very small minority of patients. We have some cancer patients on 4-6 grams of neurontin a day without any side effects. However, each patient is different. Yes, we have patients who have had RSD in one limb and it also occurred in another limb after surgery or a second trauma. We have also had patients who did not have migrating RSD and further surgery did not induce RSD. So, each patient is different. Chronic pain is very difficult to manage, and in fact we know very little about the pathophysiology of chronic pain. We have had several patient who have overcome their RSD through difficult physical therapy. It is difficult because patients have to go through alot of pain during therapy and most patients can not tolerate the pain. It takes alot of fortitude. I must tell you, most patients do not ever recover and become chronic pain sufferers, jumping from doctor to doctor looking for pain medications.

I wish I could tell you what to do about the memory. If you stopped the neurontin and memory got better that would be wonderful but I imagine that the pain would return. Your wife is sort of caught in a bind. I wish there was a magic pill, but maybe with added research???? Sorry, I can't give you a whole lot of comforting news.

Sincerely,

CCF Neuro MD