Increased Severity & Spread of Chronic Neuropathic Pain, Allodynia, Cervical Myelomalacia

[etherapist]

TO: Cleveland Clinic Specialist Team - for Comment
1st MVA 1988 - fracture cervical chip failed, severe tissue tears neck, lumbar, L shoulder. 3mo hospital - full Somi brace, rigid collar 6mo+. 9mo off work.1993 fusion C3-C6, breathing stopped post-op.  [eventually 1995 Spinal Unit did reconstructive CT, showed fusion failure, marked opacity, upper screws out - surgery at time too risky.
Monthly XRay 18mo assessment -  then upper screw seen as migrated & embedding at angle into C2, followup showed C2-C6 gradual self fusion but still with slip C3 on C4, and some opacity, further bone loss & disc]. Later reviews [2 professors] too risky to intervene.
Then 2nd MVA in 2000, rear end to taxi by moving van => aggravation/deterioration with more loss of function, chronic pain.
2005 urgent Neurosurgery again confirmed SCI current/now permanent (marked kink & loss signal in cervical spine).
- So 2 neurosurgeons stabilised the initial "failed" fusion C2-C6,  doing C5-C7 fusion plus laminectomy C5-7 to free the cord & prevent certain quadriplegia
[Symptoms - Walking,mobility,thought speed,concentration,memory,bladder/bowel,touch,coordination etc + SEVERE immobilising Neuropathic Pain, Head/spine Pain   ]
2010 CURRENT- ongoing intense spinal & head pain[rating 7-10+], inflammation with fluid build up (limbs, neck, face) and lobster red skin, mottling, spasmPast 6 mo increasing spread of searring burning, parasthesiae, allodynia distribution PLUS lymph swelling (Base of skull to behind ears, neck, upper back to T1, face forehead/temple/hairline/outer cheek); with unrelenting CHRONIC Neuropathic Pain{burning/searring/stabbing/electricity/needling} to body areas & functions. Blood Circulation loss(blue/purple feet with time vertical or sitting).
From moment of waking & raise head => Like plugged into electric grid {with current flow not reliably reduced by rest or meds}, constant rivulets flow through, soles//tops of feet/toes searred like 2nd degree burn with intermingled parasthesia tingling/spikes, same with palm + upper hand. Contracting  'piano wires' down outer limb to 4 digits of both arms/legs - All more intense on dominant R side.      
FROM time of 1st MVA: Constant OCCIPUT pain/pressure {worse when lie on back, or against car/lounge headrest}  
PLUS constant pain/radiation from cervical & lumbar SPINE from1988 injury sites (C2-C6, and bulging L3,L4,L5 discs)
NeuroPain - life of its own, did not respond to trials over long term with various opioids (recently ceased).
CURRENT MEDS: Pregabilin, Meloxicam, Memantine, Lexapro, Paroven Forte, Baclofen for spasm (diazepam10mg on occasion only, as risk addictive), Mersyndol Forte (or Fiorinal) ... NOTHING gives adequate relief to allow REM sleep.
Burning worse with heat, humidity,exercise - ANY BEND FORWARD of Head/Back from vertical, ignites a "bush fire" lightning spread from cervical region to upper back/shoulder tip, back of head, over scalp to frontal/temporal/cheek, neck and ear canals, drying up saliva and mucus into inner mouth/tongue/gullet ... [even reading screen must lower eye gaze, not chin] ..
4 finger tips/hand/palm outer arm to elbow always sore .. lately 'burning' sears a strip up outer arms.
LEGS: similar pattern to all toes, upper feet and soles .. outer/inner calf to knees -> More recent up back of thigh.
ALSO back of upper ARM + Upper BACK to T1.
As Saliva dries, Tissues in gullet, mouth, ear canal, behind ears "on fire" -> ears 'smoking'. Drinking cool Liquid/tea gives only temporary ease.
TRIGGER - finger use, any downward flexion of head, bending to ground, PC use.
Lymph SWELLING/Pain - Daily SELF Massage of Lymph areas 5X/day (base skull,legs,groin,torso,arms,fingers/toes) ->cannot wear closed shoes or cloth on lower arm)
=> some control/ease for 12-36hr ! {BUT cannot wear closed shoes or cloth on lower arms}
- LLLaser Therapy 90 min/wk; 1x-2x/wk acupuncture; Leg ELEVATION most/day.
Secondary DDD [C1 now eroding, C2-C5 cannot identify discs, still C3 on C4 slip, also C4 fracture,loss signal, multiple foramina encroachments, wearing of odontoid]. Worse case seen by 2 Teams. Height loss 4cm. ?CRPS.
  
Constant OCCIPUT Pain/Pressure {lying on, or against car/lounge headrest},
PLUS Pain/Radiation from cervical & lumbar of 1988 injury sites (C2-C6, & bulging L3,L4,L5 discs) - with shooting bilateral sciatic pain  
NP has life of its own - not changed with opioid ceased.
Thoracic pain, worse after arm use -T1 erosion  
1988 Bladder inc loss sensation/control; + 2000 Bowel Muscles/nerves min sensation -> daily movicol, fibre etc    
Walk with stick, cannot shower (like in hail storm), or use flannel/towel.
Lumbar L3,4,5 protrusions from 1st MVA =>sciatic pain.
'Normal' head/spine pain gets drowned by increase buildup of burning/parasthesia/swelling in neck/scalp/face/hands/feet/arms/legs/arms/legs', & marked allodynia =>With being vertical and/or active becomes Severe/Unrelenting => cannot focus/think, forget simple things eg date,names,PC commands
Minimal Sleep, fatigue, low energy. Carer is older spouse.
Spinal cord stimulator & brain stimualtion ruled out [NeuroS Review-Late 09]
Thyroid & autonomic dysfunction -sensitive to heat, breeze,vibration(eg car),noise(loudness, pitch)      

From 1995: Various opioids(last=fentanyl patch) gave variable help (ceased Nov09 - now "OFF" trial)
CURRENT Med: Max Gabapentin & Meloxicam, Lexapro, Memantine, Reboxetine, Mersyndol Forte or Panalgesic, thyroxin(deficicency, head hair loss), B12 injections, Vit B1, Folic acid, Modafinil.  
I try to meditate & use self hypnosis [both my own therapy specialty] - but pain now intrudes/interrupts thought train. Do daily 1hr Holosync(TM) BrainWave Entrainment + meditation/hypnosis CDs.
Reg Pain Unit reviews. Pain Hypnosis every 2wk fr medic colleague [prev somnambule in 80s]
LUMP at Right base of skull(10yr) now painful, also harder/bigger - no longer reduced/controlled by acupuncture;
Dagger Stabs into R occipital (from C3 area up under lump)  =>radiates to R frontal head/eye and into cheek, with tingling/electricity => increase parasthesia down to 3,4,5 digits of R hand - down outer forearm & under upper arm. Intensity brings tears.

I am a professional psychologist - stress mgt, hypnotherapy, CBT, meditation, palliative care, rehabilitation, pain mgt, recovery from grief/Loss/trauma etc. Was Mbr Edit Board for J Aust Hyp Soc.;Tertiary Psychology & Communication Lecturer; Published Research; Cofounder 2 Prof Societies - life-time career interest in the body/mind connection.
I look forward to your professional insight. Truly Grateful - etherapist

[Red_Ruby]

Hi,  I too have myelomalacia resulted from a MVA back in 2006.  Slowly everything started to ache in my body, legs always feel so week. No anul spincter tone, pain  and weekness in arms.  Pins and needles and electric shocksss running down my arms, back, legs.  Terrible fatigue and memory loss, II have not worked now for 18 months due to the chronic pain.  I take  gabapentin and the morphine works so good.  Opiates where not helping me at all.

Would be keen to chat with you as it is hard to find out information on this horrible condition,

Rose

[Samantha_pia]

you just described whats wont with me, but in far more detain than i did here
http://www.medhelp.org/posts/Neurology/7000-electric-shocks-down-the-left-side-of-my-body--please-help/show/1139002

only i had an xray 6 years ago and been given pills since and now left to deal with it myself