Back & Neck Community
11.7k Members
471354 tn?1221065794

Independent Case Review Critical -Spinal Cord Injury, Neurosurgery, Chronic Neuropathic Pain

To: Dr. Anurag Srivastava, MBBS, DOM, PGDFM
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"]  
0 Responses
Have an Answer?
Top Pain Answerers
Avatar universal
st. louis, MO
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.
Could it be something you ate? Lack of sleep? Here are 11 migraine triggers to look out for.
Find out if PRP therapy right for you.
Tips for preventing one of the most common types of knee injury.
Here are 10 ways to stop headaches before they start.
Tips and moves to ease backaches