John's Letter to Spinal Cord Injuries Association

13/10/1997
S.I.A (Spinal Cord Injuries Association)  https://www.spinal.co.uk/
76 St James,s Lane
London    N10 3DF

Letter From John D Mason (T9 and T10. )


Attention of Lyn Punchard, Editor of Forward And Vivienne Davies
Dear S.I.A.
In response to your recent letters to Mr Andrew Fletcher and to the article you included on page 18 of the July-August addition of Forward, my  own improvements while which included an account  of participating in his trial and research.


The Article


I had a conversation with Lyn Punchard and discussed in detail how this simple therapy has helped to stimulate sensation of touch well below the damaged area of my spine, which is at T9 and T10.

I made this quite clear at the time of the telephone interview and also know that Mr Fletcher would not have told S.I.A that my injury was T11 and T12. The fact that sensitivity of touch has now reached my pubic area since I started sleeping with the head of my bed raised by 12 inches should be pointed out clearly in a future article in order to present an accurate account of the benefits gained from this therapy.
There have been many positive improvements in my physiology, some which could only be attributed to stimulation of the damaged nerves in my spine. Which were confirmed as a complete spinal cord injury by Dr Grundy of the Salisbury Spinal Cord unit.


Could you please call me at my home which I have found in this treatment to discuss the main benefits?

Your letters dated 24th September and October 6th are very negative considering that little or nothing is on offer for spinalcord injured people! I do not understand why you have adopted this attitude towards this exciting research. If I had adopted a negative attitude then the benefits which I now have, which enable me to live in a flat as a self sufficient adult would undoubtedly have remained a dream.

Julian Boustead whom I have known since we were at Odstock together following spinal cord injury is also concerned that the SIA attitude to this research is far to negative to say the least.
I do hope that you will adopt a more positive attitude as we the injured depend on organisations like yours to make sure that the very latest developments no matter how insignificant are made available to us immediately in order that we may judge for ourselves what is worth exploring.

Sincerely  John D Mason.

 

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Spinal Cord Injury and the Importance of Gravity Dependence in Nerve Regeneration.

Complete Spinal Cord Injury Case1:  John Mason

On the 7th of June 1997, I met John at his home where we discussed his improvements and he assessed them at 60 per cent. It is now almost 14 months since we started. Against the prognosis from Salisbury Odstock Spinal Unit, John now lives in a flat and has become fully independent.


Pre intervention.

For two years following his accident John had observed considerable deterioration and had recovered no sensitivity or function. John fell from a two-storey building and sustained a complete spinal cord injury at T9 and T10 resulting in two severely damaged vertebrae’s. So severe was John’s injury that his daughter was told by his consultant that it was not possible to operate as his spine was smashed to smithereens.

John was also told by Doctor's Grundy and Tromans from Odstock Spinal Unit In Salisbury, UK that he would always be dependent on others.

John also suffered a stroke, which caused him to lose most of the use in his left arm and hand. The stroke also affected the left side of his face (slightly causing him to dribble). His left shoulder causes him some considerable pain, which John says is unbearable. When he tries to raise his left arm a loud clicking noise is heard. He is unable to rotate the left arm or raise it above shoulder height and is unable to push with any degree of force.
The main vein in his arm had collapsed and he was told that blood could not be taken from his arm because of it.
Because of the severe problems he has with his left arm, hand and shoulder it was decided, at the spinal unit that initially treated him and he attended for regular check ups, that it would not be possible for John to use a manual wheelchair and should therefore use a motorised wheelchair.
John has lost all sensitivity and voluntary movement below the injury. He is unable to maintain his body temperature, feeling cold continuously. He has no control over bowel or bladder function, and suffers severe oedema in his legs and feet. He also has a large burn on his left leg, caused by being too close to a gas fire and his absence of sensitivity to heat.
His legs are firm to touch with the skin taught and in his words; "they don't resembling living limbs".
John is unable to maintain an upright posture as abdominal muscles and upper body strength is very weak and he exhibits little control with his posture leaning heavily towards his left side. The extent of muscle wastage throughout John’s body was obvious to me as I had known john prior to his accident. He was very muscular and fit, and worked as a roofer in Paignton.

Additional problems

Muscle spasms during rest, aches and pains, poor circulation, lethargy, feeling cold in bed, irritability, fidgety limbs in bed, loss of sensation and loss of mobility due to the accident. Night sweats are a constant problem, eyesight poor, ongoing problems with urine / bladder infections, which flares up around once a week and does not appear to respond well to antibiotics. John feels the urine infection makes him shiver all of the time, causing him to become lethargic, followed by a high temperature and loss of appetite.

He wears a thick overcoat all of the time, even in the summer, because he is unable to maintain his own body tmeperature, (a common problem for people with a spinal cord injury)
John suffers from fits, which causes his head to shake violently from side to side and his left arm spasms outward.

Intervention: To avoid horizontal bed-rest and poor sitting posture by sleeping on an inclined bed in excess of five degrees.

The idea is to allow gravity to continue acting upon the fluids within the nervous system in one direction, that being downward from head to toe to influence the direction in which nerves grow in relation to gravity.

The following notes were taken from John following regular inteviews, with myself and a fomer nurse who looked after him.

Pilot Study Notes:

25-4-1996 Week 1 Muscles started to soften, leg tissue softer and upper thigh feels different, "Like they are there now". Back aching (moving up and down the spine), Felt lethargic and had lighter sleep.

2-5 Toe and fingernails improving muscle and skin on legs, more supple, urine, clear but smelly or stronger. Felt warmer in bed. Night sweats stopped.

9-5 Burning up. Urine still improving. Sensation of inner warmth at the top of legs. Muscle spasms improved. Thighs feel strange. Replaced catheter had no infection

16-5 Reported progress to physiotherapist at Torbay hospital. More even body temperature. Strength improving. Felt tightness in pelvic area. Had more muscle spasms, which lasted 4 days. Sensation of warmth moved to calves. Floating pain in spine. Felt stronger and better in myself. Finger and toenails still improving. Noticed sensation when pinched, in left side abdominal area is now three inches lower than the right side. Hair seems to be improving.

29/5 Easier to transfer etc. Using left arm and hand more, (more control). Developed half moons on nails. Warmth in calf muscles. Noticed increased sensitivity 3 inches lower than right side on abdomen. Funny feeling in thighs now gone. Muscles in arms aching. Stiff neck, warmth in feet and swelling on left leg has gone down. Feel pressure of pillow between legs at 4pm and at 5pm feeling a lot stronger from knee to ankle. increased warmth in lower legs. Now have warm sensation in tummy.

21-6 Noticed indication of nerve connection in toes? Now able to hold and maintain an upright posture. Oedema in legs very much improved.

26-6 When lowering legs from the bed to the floor, Penny and I noticed that there was some evidence of self support as my legs did not drop to the floor as they had done previously

1-7 Lime-scale in urine increased.

16-7 Following pins and needles sensation in his legs, John is now able to feel a pillow placed between his calf muscles. 3-8 Toes responded to movement after massage and left leg had normal reflexes when tapped on the knee. Right leg still has no reflex. No spasms when standing in the frame.

12-8 John has now moved from the guest house to a flat. This is a big step for John and means that he is no longer dependent. He could not have made this move when we first met.

6-8 Legs feel as if they want to itch? When in the standing frame, no more spasms. Note: Some days John’s link to his toes is less obvious and shows little signs of control. Adapted to new environment OK.

13-9-96 John visited Odstock, Salisbury’s spinal unit for an examination. During his visit he was accused of weight training, because of his now huge muscle bulk. He has now sustained a broken knee on his right leg, caused by levering his leg against the joint while trying to move from his chair. Xrays revealed bone formation 2 inches below the damaged area of the knee.

17-9-96 Visited John who reported that now, when he sits down he actually feels like he is sitting down. He is now able to feel the pressure from his catheter strap. He can also feel a pillow when it is placed between his feet, while resting. Left hand has improved vastly. When I pressed his toe firmly, he could feel the pressure. His right toes have been responding by moving when trying to move them. The left toes are also responding but not as much. No urine infections. John is unable to use the standing frame because of his knee injury.

25-10 John told me that his catheter leaked, but this time he could feel that his foot was wet. I tested this in front of Mrs Penny Meredith, by placing an ice cube in his sock. After a minute he could feel both the cold and wetness. Also dramatic changes in muscle spasms, now only evident in toes.

2-11 John confirmed that he had had an erection, he also confirmed that his bowels are functioning properly and can now push his stools out by muscular control. Penny Meredith (Nurse), was first to point this out and said that his stools now had shape and looked normal, which indicated that muscular control had returned to his bowels.

8-11-96 Sensation on left side now moved down to pubic area. "And it’s pretty strong". Burn mark on leg appears to be getting smaller.

28-3-97 Met John, who is now convinced that his legs will be moving within 4 months, so strong is the feeling in his legs that on occasions he has kicked out while trying to do so. It is not like a spasm, which he used to get, this was completely different. He also feels he may be able to hold his urine back and he is intending to try a normal catheter. His eyesight has improved to the point where he is now able to view the television properly.

15-5-97 John told me today that when he uses a bladder-wash (consists of a small clear bag of fluid, which he attaches to his catheter. He is now able to physically push urine and the liquid used in the wash bag from his bladder, up the tube and into the bag, whilst holding it above his abdomen. He is achieving this by consciously using his muscles, which indicates bladder control may also be returning.

7-6-97 Met john at his flat. His bowels are functioning OK now. He still feels like his legs want to itch, but they don’t. Over the last two months he has had pains in his kidney area, which caused a severe ache. John feels that because of his right knee injury, (which has not yet been operated on?), he is unable to use the standing frame any more.

He has developed very large muscles in his upper body. Still able to push bladder wash back into the bag, by controlling his bladder. Increased vitamin C to 1000 mg per day and urine is still clear. Furthermore, he has not had a urine infection since he began sleeping on an incline. The development of inner warmth in both legs and is more intense and now feels like he has used a deep heat type of treatment. This sensation is always in his thighs and calves and on occasions runs right through to his toes. Over the last two weeks John has begun to feel pressure on his bottom when lying on the bed. Before he could feel pressure only when sitting in his motorised chair. Hips very tight and getting a lot of headaches recently.

When asked how far he thought he had improved since we began this therapy, he answered sixty per cent. I then asked john if he still had problems with his left shoulder. He is now able to fully rotate the arm and can push with it. The strength has increased by up to seventy per cent and he has no pain from it at all. I then asked john if he thought he would be able to use a manual wheelchair and he replied "Yes". This is a significant turning point for John, as he would obviously benefit from additional exercise. When asked about his fits, John told me that he no longer has any problems, other than an occasional slight spasm in his left arm, which he is now able to suppress.

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