Progress at Three Years Post Injury

Progress at Three Years Post Injury

Three years ago I had a Staphylococcus aureus infection on my spine and six months later in the rehabilitation hospital was told by two doctors, rather matter of factly, that I'd never walk again.

Although still rather rickety, I walk daily at my parallel bars and with a walker in the hospital hallways. There has to be some satisfaction in proving them wrong...

I was fitted for a pair of AFO (Ankle Foot Orthotic) which is a brace for the lower foot. Paralysed from the chest down, I have regained much of my previous action however what hasn't returned is the ability to raise my foot up (Dorsiflection). Pushing down with the foot (Plantarflection) is not a problem. So, when I try to walk, my toes droop down, pointing to the floor, and often getting caught with each step. The AFO holds the foot up so that it doesn't catch. Mine have a hinge with an insert permitting some movement at the ankle. They're formed plastic coming up the back and side of the calf to below the knee joint. Under pants and in shoes, they are not too noticeable. So with their use I can walk fairly normally without tripping over my toes.

I've ordered my own personal walker however, I always seem to fall through the cracks. The model I wanted with wheels on the front and posts on the rear are back ordered and I continue to wait, and wait. I hope to spend much more time out of the chair and walking when I receive the walker and hopefully this will allow the muscles to further strengthen and balance/stability to return.

So Here is a short summary of my current status after 3 years;

(1) Paralysis - After being paralyzed from the chest down I now can walk with the aid of a walker for progressively longer distances. Differences in muscular strength (due to disuse rather than nerve damage) still has be a bit wobbly but that is improving. Balance and coordination will improve as strength and improves.

(2) Pain - Still significant. Pain and discomfort has remained relatively stable as my mobility increased. The neurogenic nerve pain fluctuates from just below the knees to the toes both in extent and in intensity. It is always there, day and night, often so intense it is difficult to concentrate on anything else. Still a cross between burning or pins & needles. Gabapentin and Nortriptyline do nothing!!! Doc won't prescribe Lyrica because of side effect concerns.

The other pain I have is Sciatic nerve pain. From my injury I suspect the nerve transmission causes one muscle to be weaker or another opposing muscle to be too strong causing my pelvic area to distort. Not noticeable by eye but the result is that there is pressure (compression or stretching?) of the sciatic nerve causing tremendous pain in the hip which occasionally radiates down to the heel. Hurts when I sit but even hurts when I lie on my stomach. Hip at the joint throbs with each pulse of blood. Analgesics (pain killers) don't work, nor has physiotherapy had much effect on it. Not too many options when you can't sit and can't stand. Well, I can stand but not for prolonged periods of time. In fact the sciatic nerve hurts least when I'm standing as I suspect the pressure pushes the alignment back to where it should be. Temporary relief.

(3) Spasms - Still get the occasional spasm. Some days a good number, some days none. Some days just a few, other days prolonged periods of jerking. Some days spasms so intense that they lift me off the bed, some days gentle jerks. Can't link it to anything. Extensive workouts, longer periods of inactivity, diet, weather, etc - can't find anything that triggers it or reduces it. Totally neurological. Only constant is that they occur more in the late evening and at night.

There is what I can only describe as a "creepiness" that floods through the legs prior to spasms. Feels like the leg starts inflating and pressure builds within - pins & needles. Of course nothing visible happens. Between nerve pain and spasms is a nuisance which manifests itself as shooting shocks. Out of the blue I might get shocks to some particular part of either foot. So strong it feels as if you've put your toe into a 120V electrical socket. Zap!! Usually seveal in a row but they subside after a minute or so. Smaller ones are identical to a pin prick usual higher up the leg.

(4) Tightness - What I figured was tightness in the muscles from disuse I now figure is only partially due to inactivity. The more I exercised and stretched, the more the muscles loosened but only to a degree. Much of it is probably due to continuous release of acetylcholine from the nerve endings telling the muscles to contract. This is a problem I'm having with my feet and achillies and calf muscles. Standing for periods of time stretches them out but in a short period of time they revert and tighten up. This can be felt by pushing the feet against the floor while sitting, or by trying to stand again. A tight tingling can be felt running up the back of the calf as the tightness is trying to give once again. BoTox (Botulinum Toxin) may assist this by blocking the signal. I'm looking into getting this therapy.

(5) Proprioception - Has improved a fair bit but still not normal. I generally can feel where my feet are in space but when walking with the walker I have learned to watch my feet as I walk and it is hard to break this redundancy. I have a good idea of where each footstep is going to land but the temptation is to look down and verify. Hard habit to break! I wonder how amputees fitted with prosthetics do it?

So, in summary - I'm still wheelchair dependant but I can walk with the assistance of a walker. I hope to improve much more when my personal walker arrives and I receive BoTox.
I can transfer with little difficulty to either my wife's car (PT Cruiser) and even easier to my van (Dodge Caravan). With the van, I don't even need a transfer board. I just stand, holding onto the door frame and step into to van, then lift my feet up. Works just as well in reverse.
Pain is the greatest distraction and no health care professional has been able to offer me any relief.

January 2008 Update - Walking With Braces

Update: January 2008 - Braces With Walker

Much of the summer months of 2007 were spent using the ‘sit-to-stand’ frame which, with the help of counterweights helped me stand. Leg muscles were strengthened by repeatedly sitting and standing for ever increasing periods of time. As muscles strengthened and balance improved, the counterweights were reduced until I was standing unassisted-hoisting my full weight under my own power.

September 2007: An orthotics specialist met with my physio and myself in order to fit me with leg braces. In spite of my being able to stand under my own power within the frame, muscles still did not work in unison and in the proper sequence . Ligaments did not hold the joints in proper position due to the year of inactivity. My legs could raise me but couldn’t hold me upright unassisted as my knee joints would hyperextend and I would begin to topple over. Braces were cast using a fast setting compound on a cloth like material wrapped around my legs. Once set, they were removed and used as a mould in which high density plastic would form a sleeve like brace extending from the sole of the foot almost to the crotch. Stainless steel locking hinges joined the upper thigh section to the calf section. Once in the standing position the hinges would lock and walking resembled “waddling” like a duck or like Frankenstein in the movies. The braces could be unlocked using a lever behind the knee. Once the knee joints strengthened and muscle “memory” returned to hold the leg in proper alignment, it is my understanding that the braces would be “cut down” to below the knee cap.

September 2007 to January 2008: There was some difficulty in just standing in the braces for any length of time as the braces held me in the proper upright posture. My Achilles tendon had shortened from non-use and as a result I was unable to stand flat. With my feet flat on the ground, I wouldn’t manage to stand perpendicular to the floor. I would lean backwards. I’m finding it difficult to stretch out the tendon so that the foot is flexible and that the feet don’t make me fall over backwards. The same year long activity has tightened my lower back muscles - causing them to resist my efforts to straighten upright and they ache when standing for any length of time. Over this time period I progressed from needing assistance in getting upright in the braces, to getting up with relative ease and walking the parallel bars back and forth repeatedly. The length of the parallel bars is about 10-12 feet and I would walk the length, turn and come back - repeating about 4 to 6 times before resting.

January 2008: Graduated from the parallel bars to the walker. The walker is an alluminum frame with Teflon sliders on the rear posts and wheels on the front posts. Because the walker isn’t attached to the floor as the parallel bars are, it was more difficult to stand up as the there was nothing ‘anchored’ from which to haul myself up. Once up I would walk up and down the hospital hallway about 100 meters at a time, and return - usually twice per session.

Walking with the braces and walker is now done three times a week within my hour session. A slow process - trying to undo a year’s inactivity an hour at a time, less than 3 hours per week. Fatigue sets in quickly and endurance has to be regained.

February 2008: My physiotherapist thought that massage therapy on my tight ham-strings, quads, calves and Achilles tendons would help in loosening them up. After an hour assessment session, a half hour weekly session was decided upon - for as long as the insurance coverage lasted.
I continue to walk weekly with the braces and walker, receive massage therapy on the lower limbs once a week and have a pool session once a week.