Question
Hello,

I am a 30 year old clinical paramedic (ie I work clinic based medicine, not on the streets for reasons discussed here shortly) that for the last 3 years has been chasing my tail trying to find an answer.  3 years ago, I suffered a severe episode of status epilepticus during which I was sedated and intubated for 26 days.  Upon waking, I discovered my left leg was numb and didn't work (I literally fell over trying to walk).  It stayed that way for several days, then went to pins and needles (which I still get occasionally), to sheer pain with the top of my foot feeling just like you are gaining skin from it for a graft.  Any form of light touch (especially something brushing against it) will send the burning sensation to a whole new level.  I also get shooting electic shocks from my back down to my foot periodically.  I've been seen by multiple neurologists, family practice, internal medicine, orthopedic, and pain management docs.  All they wanted was to dope me up on meds (unacceptable as I would have to completely walk away from the career I love).  None of them could provide me with an answer.  I must let you know I developed epilepsy after a TBI with a horse 12 years ago during which I broke my back resulting in L5-S1 fusion which I came back completely from, even more competitive than I was.  Additionally, any possibiltiy of scar tissue/compression has been ruled out.  I was given a tenative diagnosis of RSD, but have been told I only have one of the factors (the burning pain) and it was revised to a diagnosis of Central Pain Syndrome which describes my symptoms almost perfectly by the last doctor I went to go see (and after research I am in agreement with this).  He suggested a spinal chord stimulator to see if it would bring the pain under control.  He explained I'd have to undergo a 5-7 day trial before having a permanent one implanted.  What I'm curious is since I can't find a great deal on CPS (most indications I've found are for failed back surgery or RSD which I'm not) is how effective this treatment is for situations like this ?  I have tried the full gamut of anti epileptic drugs.  Currently I'm on 900 of Neurontin 3 times a day.  I wasn't able to tolerate Lyrica even on lowest dose (resembled a drunk) and have exhausted all the others.  In addition, TCA's are not an option as my epilepsy is tenuously controlled, so they don't want to add the risk of putting something like Elavil in the mix and losing the control I do have.  Can you please enlighten me a little more on them or CPS ?  Any information you can provide would be helpful !  Thank you in advance.

Answer
Hi, I wanted to get back to you. I've researched CPS as well as RSD in the last few days. They are quite similar, as are the treatments. I agree with you that it does appear that most of the treatment is based on pain relief, however, there are types of meds available now that are not as debilitating as demerol or morphine. I am speaking of the patches, Fentanyl and Opana to name a few. I understand that using these will keep you fairly pain-free for up to 12 hours.
Now, true, these are Controlled II substances, and you may not be allowed to continue your career if you take C-II drugs. There are also implants of small pumps which can be implanted into the affected region. Even though these drugs would get into your central nervous system, they are not as sedating as the narcotics, either. AND, There is one other treatment that is used with some pretty good success. It is a release or a dissection of some of the sympathetic nerves. I am certainly no expert on that, but I have cut and pasted a  website from the National Institute of Health which can get you started on some very reliable information. I would ask that you would share any information with me if you will, in addition to how things go for you. This is not a new problem, but unfortunately the treatments are fairly new. See website below

CLICK:  http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm