Could this be RSD?

Posted by Cheryl on August 01, 1999 at 10:36:04
I am a 30 year old female.  In July of 98 I had tendon recontruction on my left ankle for chronic tendonitis.  This surgery relieved all my ankle pain.  Four months later in Oct of 98, I began to have a deep aching pain on the inside of my left leg from the knee down.  My orthopedic surgeon treated it with anti inflammatory drugs which did nothing to relieve the symptoms.  After several months, the pain progressed up my left leg, but only on the inside.  The orthopist prescribed neurontin.  This relieved the pain initially for about 1 1/2 weeks.  The dosage was increased to 900 mg three times a day, but it stopped helping relieve the pain.  I was then sent to a spine surgeon who looked at mri of my spine and said it was perfectly normal.  He sent me to a neurologist.  I have had two emgs that were normal and an mri of my pelvis that was normal.  The pain continued to be a dull ache all the way up the inside of my leg.  The neurologist said this did not really sound like nerve pain to him.  He talked to me about RSD but I don't have the swelling or discoloration that often accompanies RSD.  The neurologist arranged for me to have a sympathetic nerve block last Thursday.  The day after the block, i began to have tingling over the entire left side of my body.  This tingling has progressed to pain.  I can feel the pain from my toes to my head.  It is much more severe when pressure is applied from sitting or laying down. It is less severe in the morning and gets worse as the day goes on.  I have a headache on the left side and even have slight pain in left side of face, ear, teeth,and nose.  I feel pain in the left side of my back, stomach, chest, and left arm and leg.   The neurologist said this could not be a side effect from the block.  He doesn't know what to tell me and said he has never heard of anything like this.  I am scared to death.  Does this sound like RSD or MS?  What should I do next?

Posted by CCF Neuro[P] MD, RPS on August 03, 1999 at 12:38:58
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

Posted by Cynthia on August 05, 1999 at 08:36:18
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.    

Posted by CCF Neuro[P] MD, RPS on August 05, 1999 at 17:37:58
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

Posted by Ken Caye on August 11, 1999 at 03:58:47
My wife was injured very seriously in an automobile accident in Sep 97.  She developed RSD with all of the classic symptoms(confirmed by PCP,the attending ortho and a neurologist and the drs. in the pain control clinic.)  Neurontin is doing a pretty good job of keeping the pain down.(This was after a series of blocks in the neck)  The RSD is in the left hand. She also wears a isotoner arthritis glove most of the time.  In addition to the RSD, she had damage to her Ulner and Median nerves.  
We are currently away from all of the doctors that were involved after the accident(we are in CA and lived in RI at the time of the accident) and have confussing ideas from a couple of doctors.  Their opinions are not important as I'm not looking for diagnosis just information.
From experience at you clinic, have you seen any problems from long term use of Neurontin?  She takes 800mg 3Xs/day + one 25mg nortriptyline @bedtime.
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?

Posted by CCF Neuro[P] MD, RPS  on August 11, 1999 at 16:38:55
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