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Newbie w/old SCI (C5-6)& severe neuropathic pain down left side

AJ711AAJ711 Posts: 5
edited 09/22/2014 - 10:04 PM in New Member Introductions
Back sometime before Feb/2003 I had a spinal cord injury at C 5-6 due to a slipped disc...According to my doctors this is odd but can happen. However, the mystery is HOW? I do not know to this day how I wrecked my neck other than maybe a car wreck 9yrs earlier that just took time to get worse? My disc ruptured/slipped into the spinal cord & not a peripheral nerve so i had no pain or sign anything was wrong. The first thing I noticed was (I had been very athletic (soccer player, BMX, etc.,) I could run but when I tried to sprint I would trip & fall...As if I was not coordinated enough to run at a full sprint. Blew it off as being out of shape as I had not played soccer in a few years & I was young & dumb...And I have been paying for my ignorance every since. Long story short I began to have really bad hip pain a year or two after noticing the first time I could not sprint. After seeing 3 different Orthopedic surgeons they could find nothing wrong with my hip & they began to think I was hunting for drugs...This was a really lonely time in my life as I knew something was seriously wrong but what & now 3 doctors said nothing was wrong. Just my luck I guess I had seen the EDITof Orthopedic medicine for the past 9 months because the 4th doctor I saw walked into the room & was reading my chart & then pulled out his reflex hammer & hit my knee & my leg began to shake uncontrollably! He grabbed the bottom of my foot to stop the shaking & looked at me with this very troubled look & asked if I had any history of neurological diseases...I was instantly RELIEVED that someone found something & then TERRIFIED "HISTORY OF WHAT!!!" It took this doctor literally (proper use) under a minute to realize I had a serious neurological problem...Sent me for blood work & an MRI found the disc at C 5-6 & thankfully not a neurological disease. The disc had completely flattened my spinal cord. I was transferred to a neurosurgeon who was FURIOUS that 3 doctors in their network missed all my symptoms. What surprised the neurosurgeon was the fact that I could still walk, not so good but I could walk...That did not last long after the surgery. They did a cervical fusion at C 5-6 & I suffered an incomplete spinal cord injury where the blood flow had killed a portion of my spinal cord. I was doing OK after the surgery for 5-6 weeks but then I began to go down hill fast! I began to lose control of my legs...Severe spasticity set in & I could not walk at all. Even lying in the bed any time I tried to use my legs or even just move them they would shake really bad & it would take someone else to help me get them under control! I was admitted to the EDIT..A wonderful place I still go to at least once every 3 months. I spent 8 weeks in house doing rehab & left there still unable to walk but with time & eventually a Baclofen pump I can now walk short distances. However, my first surgery was in Feb/2003 by Nov/2003 I had to have C 6-7 fused as another disc slipped which I was warned could happen but this time it hit a peripheral nerve & caused a lot of pain especially down my right arm...Surgery got rid of most the pain in my right arm. Not long after this is when the real NIGHTMARE began! Please understand I know many others have it worse than I do I see them every day I am at the EDIT just telling my story from my POV...So, this is how my nightmare began...I first noticed as one of the symptoms before my first surgery the top of my left foot was going numb & other spots on my left leg did not feel right. 6-12 months after my first surgery these areas began to get sensitive, then really sensitive to certain material I would wear, then began to sting & burn until about 18 months afterwards my entire left side from the chest down to my left foot is engulfed in neuropathic pain that gets EXPONENTIALLY WORSE the lower down my body it goes. My foot feels like it is either burning in lava or submerged in liquid nitrogen (cold burning very weird)...This intense pain can creep up my leg into my thigh on bad days. Probably the worst is the pain affects the left side of my genitals & anus which in the early years had me thinking of calling the Final Exit folks, not kidding!! It hurts for me to touch myself & even for my own pubic hair to touch my penis. My wife & I cannot be intimate at all because erections are extremely painful & not only that but any soft touch to my left side of my body that would normally be a "turn on" or soothing stings & continues stingy for minutes afterwards! CRAZY! (SIDE NOTE: I nearly lost my wife in 1997 5yrs prior to my injury she was in a head on collision on her way to work. 38 days in a coma, severe traumatic brain injury, over 200 fractures in her face alone including 16 fractures lower jaw & an orbital fracture, both legs shattered, pelvis & left hip shattered ALL of which required enormous amounts of titanium to fix, left hip replaced & over 125 little titanium plates & screen in her face, rods in legs, plates on pelvis & left arm...How the hell she lived is crazy but she did! We were only married a year & the brain injury was hard on our marriage but we pushed through it.) The point is my wife is sticking with me despite the fact I can't offer her the intimacy she so deserves & that kills me. But she is wonderful. Anyway, I spent the next decade in & out of the EDIT trying every possible drug narcotic & non-narcotic, procedure, spinal injections, spinal stimulator, drugs in my pump with some relief but not much. Basically since 2004 I have been sitting either in a bed or in a recliner lying as still as possible with blankets on my left side & AC running to keep cool...In the summer anyway. I swear my pain is so bad on my left leg the wind from the ceiling fan hurts! I can get hot in the summer especially in a car but if i have air blowing right in my face it will cause the bottom of my foot to burn really bad...Even if my entire body is covered in layers of blankets! My entire nervous system seems to be out of whack due to what looks like a 1/4' white mark on my spinal cord via an MRI. NUTS! That might sound outlandish but it is so true! Kinda the reason I am here is to see if anyone else has crazy pain like this...No one I know could possibly understand & I know in the beginning some close to me had their doubts. Of course, my large circle of friends prior to my SCI shrank with time to just a couple now & of course my family...Despite this being upsetting as it happened I understood why & now would rather not have a lot of people over all the time. I have a lot of the same issues as many others with spinal cord injuries but instead of no feeling I have hypersensitivity I guess you would call it or just PAIN! For instance, from day one I was having problems urinating on my own but I could & did not have to use a catheter...I was terrified of having to use a catheter because the two times I was awake & had one, both before my SCI (ACL R/Knee), it was HELL! If I filled my bladder to a certain point I could generate a stream on my own & I carried on like this for years until I began to lose even this ability...I now have to cath 4-6 times a day (I drink lots of black coffee & filtered water all day never anything else). I have to admit my fears were overblown as one gets good at giving oneself a catheter after a several days where it is not near as bad as someone else doing it. However, my penis is extremely sensitive so that does make it a bit difficult on bad days...To really painful!

Medication...For the first 10yrs I was on 30mg of Oxycontin twice a day & 5mg of Percocet 4 X times day for breakthrough pain...Been completely off the Oxycontin for a year & only take the 5mg of Percocet 4 X day now; 300mg of Lyrica 3 times a day; 50mg of Savella; a year ago I began taking Lexapro for depression; and just a few months ago I started taking 50mg of Topomax which has done more for my pain than everything else combined! I tried various RX in my pump like Prialt which I could not take the side effects & even Morphine which actually made my neuropathic pain worse! Not only that once they removed the morphine I went into serious withdrawals despite the fact my doctors were very liberal with 10mg Percocets RXs to help counter the withdrawals...It was 3-4 weeks of feeling like I had the flu. Truly a feeling you NEVER EVER want to experience ever again! So much so i have refused any narcotic being put in my pump again. I can handle the pills especially if i can slowly titrate down under doctor's supervision...Even that is hard when you have been on Oxy for 10yrs like I was.

Right Now...I just had my 3rd neck surgery in May/2014. This time it was to relieve spinal stenosis at C 4-5/5-6 (Laminectomy I think?) It seem like the surgery went fine until I woke up one morning about 3 months after the fact & both my arms were burning & my entire left side was too! I was terrified! I sat up in bed around 2am & tried to relax & the burning began to ease but I could barely use either arm as if they were "asleep" but much worse & the same for my left leg...The crazy thing is my right leg is fine & always has been other than having some limited use due to the original spinal cord injury but no pain at all never. This was a month & a half ago. Ever since any time I move neck certain ways, especially LOOKING DOWN TO FAR the intense buzzing to burning pain shoots into my arms & down my left side. Sometimes it will just be in my right arm, or in left arm or both arms or everywhere but my right leg. When it happens it can remain there for seconds to hours depending on the severity. Here is the scary part, I told my pain doctor at the EDIT & he sent me for an MRI right away...When he looked at it he said he did not see any "significant changes" but did see some "subtle changes" he thinks the neurosurgeon should look at...I am going to see the neurosurgeon in a week. If he says there is nothing wrong that means this is going to be "normal life" & I am not sure if I can settle for that. I understand the nature of my SCI is such that an inflamed muscle in my neck can have a cascading effect that causes pain in parts of my body that should not be hurting as I have experienced this before. This is completely different...Or so it seems. If any has any opinion or similar feeling would love to hear from you. I hope to make some friends here & find others who might be experiencing similar issues. -AJ

Post edited to remove name of specific medical facility. by Liz The Spine-Health Moderator Team


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