471354 tn?1221062194

Expert Review?- Cervical Myelomalacia, SCI - 2MVAs 2NeuroSurg + Pain Unit,Laser Therapy,Acupuncture,Daily Meditation etc

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)
Neuropathic Pain - 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] ..
HANDS/ARMS: 4 finger tips/hand/palm BOTH Sides in triangle up outer arm to ELBOW always Sore/Burn/electric .. lately 'burning' sears a strip up outer arms. ALSO inside forearms from WRIST to ARMPIT
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'. Cool Liquid/Iced Yoghurt may give temporary ease.
Only TRIGGERs - finger use, any downward flexion of head, bending to ground, PC use for awhile. But "Flare ups" MOSTLY Unpredictable

Lymph SWELLING/Pain - Objective Assessed by Professor {World Leader in Lymphoedemia Treatment}
Weekly Laser Therapy
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: Different Opioids (most recent =fentanyl patch) with variable help (all ceased by Nov09 - now in "OFF Opioid" trial)
CURRENT Med: Max Gabapentin & Meloxicam, Lexapro, Memantine, Reboxetine, Mersyndol Forte or Panalgesic, Thyroxin (deficicency est, head hair loss), B12 injections, Vit B1, Folic acid, Modafinil.  
I try to meditate DAILY + use Self Hypnosis [BOTH used in my own therapy specialty]
- but Neuropathic Pain & Occipital Presure Pain & Stabbing intrudes to interrupt my thought train & interfere with Imagery [previously skilled in this + researched/published]
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.
ALSO Hair Loss has increased over scalp - in 2mo has become very sparse.
The Doctors here seem to have reached the Limits of their knowledge/innovation/integrated treatments.

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 would greatly appreciate your professional comment/insight + that of ANY Expert on Medhelp Panel.
I have PAID for 2 Expert Answers - but been unable to give Adequate History in Reduced Field given
- I gave UP [after many attempts] as Typing/Editing for me is Agony.
MY sincere Apologies. Please FWD if you can.
Truly Grateful - etherapist
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi ruby mike here. Do you have a problem with breathing, is your diaphragm ok?
Helpful - 0
Avatar universal
what meds are you on right now?
Helpful - 0
1093617 tn?1279302002
Hi, Thank you for your question. Since it is quite difficult to say anything precisely, I would recommend that you consult a neurologist for a better insight of the situation. Hope this helps.
Helpful - 0
1142731 tn?1335092049
Hi, I really do feel for you after reading your post. I too have myelomalacia of the cervical spinal cord at my C2 through to my C6 from a car accident.  I was also told how lucky I was that I am not quadrapeligic.  The pain you are suffering is so much like mine and it can be unbearable many times each day.  I would like to chat with you about our conditions and problems if you wish to tag as friends.

Helpful - 0
471354 tn?1221062194
I am very grateful for your reply ... I tried to get an appointment through the Pain Unit at Flinders Medical Centre here.
Initially I was told the waiting time would be after July - as one Expert left the Treatment Team late 09, putting extra patient load on a smaller team Now it is May.
My last full MRI was when I was 2005 for after deterioration from 2000 2nd accident  - Pain Unit head ordered the MRI when he saw there had been none for some years.  Urgent 2nd Neurosurgery Aug 2005 followed - by a pre-eminent Neurosurgeon in Private sector, in collaboration with the Head of Neurosurgery at another major hospital/trauma centre - basically to prevent quadriplegia, with NO guarantees or promise even of symptom relief!!

I was steady for a while but in the last year the spread & intensity of burning, parasthesiae and allodynia has felt like a body invasion.
Essentially it the neuropathic pain & pain now deprive me of deeper sleep{fragmented/broken at most 5hrs}. Getting to sleep is especially difficult in over 25C heat and/or humid conditions - when swelling, redness and body heat get worse over the day, or with time spent vertical.
Burning, and parasthesiae are now ever present not only on top of my feet but since Oct09 over the whole sole {feels Strange}, wrapping around the ankle, extending up  inner lower leg, as already in strip up outer leg, along with allodynia. Burning & allodynia now resides under the knees & extending up under thigh{just where one sits}.
There is Lumbar damage {L3,L4,L5 disc bulges,impinging etc} which was left surgically untouched, with primary medical focus on the more critical nature of cervical instability.

Laser therapy LLT, {with daily lymph self massage & leg elevation} helps me control  fluid build up{increasing pressure on nerves} in lymph tissue - in neck/head/face/shoulder area, as well as fingers/hands & legs/feet/toes. At times I can barely walk, even at home to the toilet, as legs 'HURT" to move, so swollen and heavy.

The only things I have identified as symptom increasing are:
- using my hands to hold up a book/magazine to read, typing, walking more than 20metres (especially in non-airconditioning).
- Also vibration, with car travel over 15minutes, especially on a winding road and I have to steady my posture on turns;
or even from building works 50 metres from my bedroom.
- Direct Pressure on back of head (as in putting head on car headrest, or lying directly on back of head) increases neck/head pain =>with radiation following optic nerve over scalp to give frontal/eye headache.

When the burning intensity increases, I now feel along whole cervical spine to T1,T2, out across to all upper torso(to shoulder);  it also correspondingly burns from my throat down to mid-chest. Burning wraps around back of neck to ears, up in rivulets over scalp to face. Here saliva dries up, ear canals burn and eyes feel like in pools of hot oil. At its worst it includes upper torso, arms/legs, face/cheeks/lips/mouth; even inside mouth across roof & tissue inside cheeks, under tongue & third of upper. Skin feels searred on a hot plate - like I am being barbequed; or have very bad sunburn.
Parasthesia is co-exists in face [cheeks/chin/around mouth], hands[ palms/outer 4digits], outer arms, under/over feet, outer calf, lower inner calf ...etc.

When this is flared up, it really is unbearable - I simply cannot focus mentally, even to watch TV, or hold a magazine to read while lying down. Noise and bright light can then add to discomfort "signals" ,which I cannot screen out.

* Whenever body heat is increased - after walking, eating, drinking hot drink, or rise in room/temperature - more discomfort comes with swelling in lymph areas => adding "pressure" to already cumulative discomfort of pain, burning, allodynia, parasthesia.
* LEANING FORWARD eg to type/read, do make-up/wash body sparks burning
- AND/OR especially with a sudden move from vertical toward the floor - even reaching down to the side - usually sparks a surge of "electric activity" from cervical spine out, up, over and down limbs/body{as above}

An increase in Pregabilin has been suggested to 2x (300mg each)/ twice a day{1200mg} - from 300mg 3x day(900mg) for some time. Being now off all opioid meds{fentanyl last} meds, the pain receptors may have recovered somewhat to perhaps respond by easing neuropathic overload!
After long term max dose neurontin, I was originally put on1200mg Pregabilin prior to Neurosurgery 2005, up to late 2007 with no side effects, lowering to 900mg until now.
What is CURRENT View among experts- from research or evidence  base??  

I am taking MORE mersyndol forte to take edge off" for the NOW more persistent Occipital/Frontal pain, as well as when a "dagger" feels lodged in top of Spine or at base of skull; PLUS meloxicam for inflammation.
{After long time use, of opioids seemed NO LONGER contribute to Chronic Pain relief - plus I was worried about memory, difficulty concentrating, mental confusion. I DO seem to have regained "some brain" back, since fentanyl ceased!}
Acupuncture DOES give relief, with a better sleep, but again does not maintain - except GREAT to use if get flare up early.

All I seem to do is my own lymph drain self massage {using facial wipes to dull skin to skin contact}, meditation/hypnosis, attend teatment - eg hypnosis/laser therapy/acupuncture - and NO time is left, and I am exhausted all the time!

Realistically, What IS the LONG TERM prognosis (in real hard facts) for a case like me. My husband has medical training & was Head of Psychology(retired) for many years at our capital city Uni, teaching neurophysiology, brain & behaviour. As a practitioner myself in clinical psychology & hypnotherapy, I have 30+ yrs looking at Mind/Brain integration into therapy, with research/articles.

I have difficult getting my lower back taken into account. Could this ALSO be contributing - especially with coordination, slower pace - to less mobility/coordination?
{I feel "stick legged", ungainly & sometimes swaying}. "Rivulets of electricity" running like a stream through the body, adds to this as parasthesiea waxes/wanes.

This is all, despite my commitment to regular hypnosis sessions with a Pain/Hypnosis specialist [with a CD of his for home use,];  daily mindfulness and/or breathing meditation; 1hr daily Holosync brain wave entrainment program (see centrepointe.com with Bill Harris).

PLEASE: If I were a CASE to for the PANEL(S) to Review - what OFFER your sincere views/ideas/comment?          My deepest gratitude .... j {etherapist}
[Panel Experts are welcome to use my Email address from Medhelp "Personal Details"]  
Helpful - 0
1093617 tn?1279302002
Thank you for your question. Although without being able to examine you I can not offer you the specific advice on diagnosis and treatment that you need, but I would try to provide you some relevant information about your health concern.

Myelomalacia is a pathological softening of the spinal cord.  Therefore, your MRI findings is extremely important in order to explain reason of your symptoms here.  If you have recent increase in the symptoms then it appears that your pre-existing problem may be worsened.  If you are suffering from continuous symptoms, neck and arm please arrange an appointment with a neurologist right away who will evaluate the further underlying disorders by clinically examine you & ordering MRI or CT scan here that may be the main reasons of your headache attacks with other symptoms and can provide you an appropriate treatment. Hope this information proves helpful to you. Take Care & Regards!!!
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1483808356
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease