I hope this may be of some value to others in a similar situation, which is why I'm writing it. It is directly from experience, so even physicians, who do not have the problem may find this of some interest. Anybody who might read this who has a spinal cord injury, has undoubtedly already educated his or her self on SCI and areas of information that touch on it, so I'm not going to be too simpleminded about the writing, nor am I going to use as many technical words as possible.
Some physical background:
Prior to the injuries, I took good care of myself, with regular weight training and cariovascular exercise, was in the best all a rounf health ever, not sick in any way for over 10 years, not even a common cold. and lead a productive and happily active life.
Here's my current primary physical situation: Impingement on the spinal cord in the area of C5-C6 was permitted to exist for about 3 years, causing spasm and various local pains to exist during that period. There was an injury to the lower back at the same time and and injury to the R shoulder. When the cascade of financial consequences of the injuries and the full realization peaked that the medical intervention to relieve the compressed SC would be withheld indefinitely, I visited my GP/internist because of percieved heart difficulties. He listened, wanted to do an EKG immediately and showed me the result which was a classic QRST describing a complete Left Bundle Branch Block (LBBB), meaning that the electrical beat signal to the left side of the heart no longer existed. One cannot *prove* conclusively that the stress level (which was enough for 5-6 mg of Klonopin to have no effect) induced the LBBB, but I know it to be the case - and there is no other reasonable explanation that fits, except a well timed miracle or an equally well timed quirk of genetics. There are viruses and bacteria that are known to be possible causitive agents of a LBBB or RBBB, but I find it inconceivable that these could have caused the condition, with absolutely no discernable symtoms of any illness or even slight malaise. At about this same time, I developed and abhorence of noise, and particularly loud noises, which is still very much with me.
A little over a year ago, a quintuple partial laminectomy C3-C7 was performed rather elegantly by my neurosurgeon at Duke University Medical Center, which was unfortunately too late to avoid damage. These years of great physical inactivity has allowed the lower back to come to some sort of equilibrium so that full spasm bad enough to prevent walking does not occur right now. Just recently, a good MRI of the R shoulder at Harris Hospital in Sylva, NC has narrowed down the problem there to some hypertrophy at the A/C joint and a malformation of the suprspinatus tendon that could be read as a continuing tendonitis, but in any case could explain as impingement syndrome, the everpresent pain and tendency to freeze, of the R shoulder and right arm. This is not present in the L arm.
At this point, any damage that may assert itself again whenever I get be able to move around more, and the shoulder damage, I consider to be minor relative to the cord damage. There are catches-22, nevertheless in dealing with the results of cord damage that result from the combined injuries.
The SC is complicated and any injury to it can have its own unique and sometimes bizarre set of symptomatic sequelae. In one way, my specific injury is like few others, since no one in their right mind would allow an immediate threat to the SC to continue for 3 years, and yet, this is exactly what State Farm Insurance perpetrated on me. I can't imagine that these exact conditions happen too frequently. Even given that, I suspect that anybody with SCI will identify with a few symptoms that I list below, but may have others.
The symtoms of this specific cervical SCI: 1) Weakness and loss of stamina in neck muscles and upper trapezius fibers. This is experienced almost like a painful tonic spasm when the muscles are overtaxed. Overtaxing them doesn't take much; but, my head doesn't fall over. 2) A looseness and weakness of both shoulder joints, and upper arms, and forarms. No wristdrop, yet a repeated clumsiness in broad motions that require coordination of all from shoulder joint to hand. 3) An atrophy of vitually every muscle in the body, below the head. My mouth still works just fine :-) 4) Severe atrophy of the abdominal muscles, leaving a distended belly. This is a condition that causes exacerbation of the prior lower back injury, either standing or walking even for a matter of minutes. 5) Greatly diminished strength and muscle mass of the thighs and legs, along with the same for arms and forearms. Getting up from a seated position is a concerted effort. 6) Loss of proprioception in both feet, so that I frequently have to look to see where thy are. 7) Loss of appropriate control of the bladder, although it is not complete loss of control and might be described as quasiperiodic leakage. The general buzzing sensation of the body, interferes enough with sensation that I can't tell when urine has ceased to flow without sone auditory or visial cue. 8) Greatly dimished sexual ability, especially regarding the induction of orgasm: it's most often a deflating failure. Sex, even all by yourself, isn't all that interesting or pleasurable when you are in constant pain, and nothing feels as it should. At yet I have this idea that if the equipment isn't used that yet more physical problems will develop there. 9) Significantly diminished peristaltic action, meaning that I must live on stool softeners, metamucil, prunes, figs and such. Sometimes, even this together with a general loss of interpretable sensation in the area means I have to pay more attention to bowels that is natural. 10) Dysesthesias: many of which are the same as in peripheral neuropathy. (Neurological studies have ruled this out.) a) Burning pain, numbness and precieved stiffness of both hands. The hands are very sensitive to "edges" of any sort. Thus, hyperesthesia. Yes, you can have both numbness and hyperesthesia, however weird that may seem. The same sensations are present in forearms and arms, but diminished. b) Feeling of great coldness in both hands and feet as well as legs. These extremities are not necessarily objectively cold. c) An icey cold feeling abdomen, which is also not necessarily objectively cold. c) A feeling that my body is covered by some cold gelatinous material, which is what I feel through. 11) General lose of muscle mass going from a 225 lb, in shape weight trainer to 190-200 lb weakling who creaks, snaps and crunches more like a 97 yo. I'm now really just over 50 yo. General muscle tone is very dimished. 12) Occasional loss of sense of humor.
Ok - this the situation, and the rest is how I am dealing with various aspects or symptoms listed above - what's worked and what hasn't. I need and have gotten friendly help in performing the mundane tasks of life that have become impossible or impossible alone: bathing, cooking, cleaning and the like.
This is a complicated business to deal with, and I feel like a baby learning to walk. Speaking of which - I presented the idea of a recumbent stationary bike to all appropriate physicians and all thought this was a "great idea". The object is to try to regain some strength in my legs without screwing up the back because of the atrophied abdominals. Unfortunately, this hasn't been affordable yet and can't be gotten under medicaid. But, I can address the abdominals independently.
I also broached physicians and physical therapists on the use of ElectoMuscular Stimulation (EMS) to aid in strengthening the atrophying muscles, abdominals in particular, and also to avoid the catch-22 of using an injured joint and causing more damage. It seems that most people don't know of using EMS in my condition (because it's so rare?), and I can't find any legitimate scientific literature that is pertinent. My reasoning says that I should get a benefit from this, but it's too early to be definitive. The physiological question is whether a sometimes use of EMS, can make up for partial denervation of muscles, and what the partial denervation looks like on a small scale. I would think that since there has actually been some neuonal death in the CNS, that some muscle spindles are firing and some are not, and the it is not a question of decreased signal to a spindle, since neurons work almost like a computer on an all or nothing basis: fire or not fire. The EMS unit causes those spindle which would not ordinarily fire to fire, and that should be better than not. However, since it is the voluntary firing that is the show of a muscle's strength, this forced firing of contractions doesn't do anything to bring the nonfiring spindles into action for voluntary motions. The only hope is then to strengthen the firing spindles, through exercise. When regular exercise is possible, it will surely be better than simply using an EMS exclusively. In that case the EMS should only be considered an augmentation exactly as a bodybuilder would use it. If, however, regular exercise of a denervated muscle is damaging to another body part, the EMS is an alternative to simply waiting for muscles to atrophy.
It has been heard of as being possibly useful: "sometimes it works, and sometimes it doesn't", which I believe may have very much to do with how it is used. Apparently no research has been done, or what may have been done has not been printed in the appropriate medical journals. As a generality, physicians remain skeptical. At any rate, it was of sufficient interest that it has been prescribed. Since nobody will pay for it of course; pennies were saved and credit used, and I got one. It is a fairly high powered EMS/TNS combination unit with 10 simultaneously usable pads, and a maximum output of 150mA by specs.
From a beginning use of EMS, here is what I've figured out and discovered.
1) If you are going to get an EMS unit, get a combo EMS/TNS. Don't get a toy; 150mA is probably a minimal maximum output, although, to date, 75% power level is the most that I've been able to use. 2) Using an EMS unit is not a passive activity: don't expect to read novels while using it. Watching a movie, however, works for me, for quite a number of pad configurations. Try to work with the machine in contraction and relaxation phases, most especially if you are dealing with a lax joint; tense all muscles of the joint to help stabilize the joint. You are actually doing and assisted isometric exercise. 3) 10 pads sounds real neat - you can work a whole mess of of muscles at once - unless you become strangled in a maze of wires. I've found 6-8 pads in accessible places possible to negotiate. Getting help, for those impossible 4 handed manipulations and impossible places to reach is a good idea whenever possible. Getting set up is a chore; cleaning up and packing up is another chore. 4) Pad positioning can be critical, and you will have to fuss with them to get the right positions. It really helps to know gross anatomy; a little physiology and neurology can't hurt. The angle of flexion of a joint can matter 5) In manuals that come with these units, the placements seem to favor pad pairs being placed across the belly of a muscle, while I would have thought placement at near tendons of origin and insertion would be the preferred placement. As it turns out, both actually work. 6) There is no particular reason to worry about messing up heart rhythms with these things, on two counts. The current isn't strong enough, and the frequency (it is not DC) in the contraction phase is high enough to prevent the requisite penetration depth of the current. The higher the frequency, the less the penetration. This is the "skin effect" in any conductor with an AC. Nevetheless, it would be a good idea to avoid any pad placement on the head, and also avoid the carotid sinuses that are in the forward quadrants of the neck. 7) Cleverness in positioning can capture many small muscles, especially in the shoulder joint for example. Catching the front and back of a shoulder joint can hit anterior and posterior deltoid as well as SIT group that helps to stabilize the joint. Often, especially in limbs, it is possible to pad both agonist and antagonist muscles, say triceps and biceps of the arm. It seems to me a good idea to do this. 8) This is not a feel good enterprise (no results) - it's a workout (yes results) that should be as intense as one. BUT - Start slow otherwise you won't be able to move the next day. (with me it was always the second day after) Start with just enough intensity to get a contraction, with about a 10 sec. contraction. A total od 10 minutes on any muscle or muscle group is quite enough for a first session. Manuals say to keep the rest period twice the contractrion time. That's good for a start, but after that you can work slowly up to having the contraction time twice the rest time. Even within a session, the muscles will habituate to the voltage being applied. The level can depend on pad position. Play with position until you get the best contraction response. Compensate for the habituation by periodically increasing the voltage. Later start increasing the contraction time, and about 30 sec. contraction, the contraction/rest time ratio can start being increased. After working up to a workout intensity, your body temp. should rise and you will probably find yourself sweating. This is good. When I am conditioned for a regular daily EMS workout, I try to adjust the voltage level at the end of a session for a muscle or group so that it is just below the point of cramp. Ok, so I overshot once on the right arm. A solid slow and deep massage will help avoid a good deal of soreness. 9) A few notes on pads and conduction: For TNS (or "tapping mode") at low frequencies, and for low intensity EMS mode, conduction and firm contact of pad surface is not all that critical, so using the pads dry, wet with water (which will tend to bead a bit on the pad), or saliva will work fine. Yes, I know using saliva may be disgusting, but it's quick and utilitarian since it contains enough electrolytes, while often plain water does not; and, it has the additional advantage of having some viscosity which allows it to spread evenly over the surface of the pad. However, for high intensity EMS and high frequency TNS, good conduction is more important. Use a commercial conduction gel, use KY or a clear aloe vera gel, or enhace the last two by disolving in them a small pinch of salt (to provide ions of conduction). Without proper conduction, you will get arcing - and it not only stings, but can also irritate sensitive skin and cause mild burning of the skin. Remember that gel and spit are water based and will dry out even if you think it won't because everything is covered. The skin absorbs moisture, and aloe vera even facilitates the absorbtion. If you use a conductive gel or salt enhaced anything, try to see that the carbonized rubber pads are washed off with water after the session in order to preserve their life. Salt will slowly cause the rubber of the pad to deteriorate. 10) Use the TNS mode gently and at a discernable tapping frequency for at least 5-10 minutes after you've suffered enough, it will promote circulation a clean out of lactic acid buildup. 11) BONUS on the abs for SCI patient with diminished peristalsis: it massages both the large and small intestines, and helps considerbly with the everpresent problem of blockage and constipation in a way that does not require drugs or laxitives. 12) Some of what I've read of EMS use by bodybuilders might be taken over for the benefit of SCI patients. For them, the EMS use is simply an enhancement. After a standard workout, when 1-2 hours have passed, when strength is beginning to return to the muscles that were just engaged is when the EMS workout is used. So, if an exercise session is possible say 5 or 6 days a week, alternating muscle groups so that the same muscles are exercised every other day, one could follow each of these sessions exactly as as body builder might with an EMS workout.
November 25, 1998
A possibly interesting observation that has repeated itself about a half dozen times: I happen to love hot and spicey food, and haven't much of it in quite a while. Now, everytime I eaten it in the past few months, it's almost as if I hadn't taken any Neurontin at all. The pharmacological action of Neurontin (you still won't read this in the PDR, I think) is to supress the body's production of the neurotramsmitter glutamate, which interestingly is poisonous to injured nerves. Do certain spices stimulate glutamate production?
December 1, 1998
Regarding the use of EMS on abdominals, I continue to find that the side effect of intestinal massage in aiding elimination is valid. The desired effect of tightening the abdominals still seems to hold. Whether or not there is any real strengthening I am still unwilling to say. EMS *does* seem to shorten muscles. Is this an increase in tonus? Whether yes or no, it indicates to me that "normal" use of EMS should always be accompanied by stretching exercises: there is such a thing as a muscle that has become too short.
An interesting thought: the two medications that I take that cut down pain and other dysesthesias are Neurontin and Klonopin. Both of these were originally developed as antiseizure medications for epilepsy. Two items don't make a pattern, but ...
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