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