Monday, 31 March 2008

Spinal Cord Injury Recovery - Update

Recovery From Spinal Cord Injury
(A Mixed Blessing???)
(Living with Nerve Pain)

Summery: Movement improvement ~90% but with greatly increased nerve pain but lessening spasms. (some of this post is redundant from previous posts)

When in October of 2006, some 4 months post surgery, I started to notice the first signs of movement in my legs, I never realized what a painful and emotional experience the recovery process would be. In the end of January of 2007 the next real physical change occurred when I noticed some strength and movement in my trunk. I feel that at this point in time the inflammation began to recede which then allowed more signals to travel up and down my damaged spinal cord. This was a mixed blessing. The steadily increasing strength and mobility was of course welcomed but the flip side of the recovery coin was that sensation/pain signals also began to flow producing discomfort to the point of being unbearable on many days.

I can now move but live in continuous pain and discomfort. Will the discomfort ever ease or am I destined to go crazy from the never ending intense pain?

Medication to control pain is either ineffective or if it has some effect, perhaps if I were to go off of it I would truly be in excruciating and unbearable pain.

During my time in the hospital and rehab, I had no pain associated with my injury. Regardless, I was placed on the nerve pain medication Gabapentin. It was only 3 months after discharge that I began to feel a tingling sensation in my legs. That tingling sensation soon developed into a burning sensation which could vary day to day. My sensation is best described as varying from what would, on better days, feel as a tingle or having my legs immersed in club soda water. On bad days they burn intensely as if my legs were immersed in boiling water. The sensation/pain could be from the ankles and below or more likely extend to the knee caps. The later is more likely. I haven't been able to make any associations or conclusions regarding this nerve pain. There seems to be no correlation between intensity and exercise, weather, diet, fatigue, position, room temperature etc. The only correlation that seems to occur is the the burning increases at night.

Nerve pain differs from conventional pain which we all have experienced. This truly is a searing, burning pain which may tingle. At it's worst, it is so distracting that it is difficult to concentrate on anything other than the pain making it all but impossible to even watch TV without constantly being distracted.
Nerve pain also differs from conventional pain as conventional analgesics (pain relievers) such as acetylsalicylic acid (Aspirin), ibuprofen (Advil), acetaminophen (Tylenol) etc have no effect. To my knowledge there are only some 4 drugs in general use which may be effective against nerve pain. They are:
  • Gabapentin
  • Nortriptilene
  • Amitryptiline
  • Pregablin (Lyrica)
I am currently on Gabapentin & Nortriptyline yet the pain can border on unbearable at the worst of times and distracting at the best.

My doctor wrote a script to add Amitryptiline to my other nerve pain medications but the pharmacy informed me of what I suspected. Amitryptiline and Nortryptiline are closely related analogues of each other with similar actions and it wouldn't be rational to prescribe both concurrently. My pharmacist was going to discuss this issue with my doctor and get back to me by phone before filling the prescription. No phone call came and I didn't pursue the matter.

So now that I've regained much of the mobility I had hoped for, on most days I live in continuous excruciating pain. In all the reading I have done, there seems to be no remedy for this condition.

A Summery of Spinal Cord Injury Recovery
(From Injury to March 2008)

March 2008 -
Having been paralyzed from the chest down (T-5) I have recovered motion, almost to the point of being normal in action and strength right down to my ankles. I am able to flex my foot up and down at the ankles but not side to side at the ankles. Lower abdominal muscles are active but very weak which I believe can be strengthened and recovered with proper sustained exercises over time. Tactile (touch) & temperature sensations extend right to the toes but are lessened and altered the further down I go. Below the ankles I can sense temperature changes but it takes a second or two to register and touch/pressure does not feel normal but rather like a tingling sensation.
Spasms which previously plagued me for hours on end have diminished and now occur sporadically, usually for short periods of time, more often at night and are not usually as intense as they once were. They still are present and like the nerve pain, I cannot link them to any trigger such as exercise etc.
I am currently walking with braces and a walker for about 120 meters (360 feet) at one time, up to three times a week. Although wobbly, I can stand without braces at my kitchen sink and put away dishes in the upper cabinets.

Tightness - Muscles, tendons and ligaments that have been active and at a certain length in daily functionality over my lifetime have shortened and contracted during post injury bed confinement. In spite of trunk & chest muscles becoming active, even after one year I feel as if I have a large elastic band wrapped around my core. I can breath normally but if I cough it feels as if my diaphragm doesn't give and there is pain with each cough. On standing, my legs have to stretch out as the muscles want to contract and not stay at their functional length. I can feel individual muscle bundles or sheaths in my calves slide against each other when standing. They stretch out over a day of exercising but once again contract overnight. A very unsettling feeling. How long before the muscles remain at a functional length??
Adhesions - When twisting, stretching or moving, particularly with the chest and trunk I often get the sensation of tearing flesh. I believe adhesions that have formed over the year where I was unable to move. In my mind, adhesions occur when muscles or layers of tissues which normally slide past each other now have formed bonds or bridges between layers. They no longer slide but tug, tear or ratchet past each other. Layers of tissue do not want to separate and when stretched, the bonds tear. This gives a momentary painful tearing sensation but doesn't last. Hopefully over time the tears become less frequent, the bonds are broken and the movement of tissue layers slide smoothly across each other. I have had massage therapy in hopes of speeding this process but am unconvinced that it actually helps and my private insurance offers limited funds for massage therapy. Funds have been all but used up in about 5 sessions. I see no point in continuing at this point and intense contortions and stretching are probably as effective.

January 2008- Started to "walk" with the braces for the first time in about late January. Firstly up and down the parallel bars and then in late February walking in the hospital hallway with a walker and the close supervision of my physiotherapist.
The design of the leg braces could have used some improvement as the locking knee hinge mechanism doesn't work smoothly, the lever comes apart and during the walking process, the left and right leg hinge mechanisms can latch onto one another and lock preventing me from taking another step. I have to teeter around on the braces and walker trying to unhitch one leg from the other which may lead to my physiotherapist having a heart attack! I came up with my own modification which I'm still evaluating but it seems to have reduced if not eliminated the locking problem.

From January to March I progressed from having to have two physios haul me up out of my wheelchair to the parallel bars and assist me in moving one foot out and back, to my walking virtually unassisted for 120m down a hallway. Proprioception remains a problem as I cannot tell where my feet are without looking at them. This propagates bad posture as my butt sticks out as I look down changing my center of gravity. Still working at that.
Being in bed or chair-bound for so long, I find it difficult to push my hips forward over my leg and recover the proper center of gravity necessary for walking. I can push my butt and hips forward to where they should be but find it difficult to hold them there. Hoping this will loosen up over time as it took time for them to seize up.

September 2007- First fitted for the braces and continued to strengthen with bench exercises and with the 'Sit-To-Stand' or 'Standing Frame' apparatus in order to recover balance and strengthen leg muscles.
Up to September of 2007 I could transfer myself from my wheelchair to my bed unassisted and lie down but not much else. With great effort I found that I could flip over on my stomach by bridging with my feet and back and scooting my butt sideways to the edge of the bed. At first I would haul myself over on my side, then stomach using a rope tied to the bed frame as my bed doesn't have any side rails. Running shoes or 'water socks' (slip on canvas shoes with a tacky rubber bottom often used in water sports) provide grip and make turning easier. At first I would sleep with the shoes on in order to flip at night. I soon found that this was no longer necessary and that I could push off with the heel of one foot and roll over around my other extended leg. I attribute the absence of skin related problems to my ability move around in bed. Pressure sores and infections have never been a problem with me.
I now flip around in bed back to stomach, side to side, end to end and sit up with relative ease.
Spasms seemed to lessen at the end of August of 2007.

January 2007 - became aware of trunk muscles recovering. Could lean forward and sit up rather than falling over like a rag doll. Started physiotherapy 4 times a week at local hospital. With the increasing motion a rather intense nerve pain in the legs developed. Spasms continued - quite severe at times.

April 2006 to December of 2006 - When I awoke one morning and realized I couldn't move my legs, I had no pain or discomfort whatsoever. Pain was first felt as the result of major surgery which was treated morphine but resulted in intense and disturbing hallucinations. While in initial recovery I noticed that occasionally my right leg would occasionally jump. This curiosity was to be my first experience with paralytic spasms. At the Rehab hospital spasms increased tremendously even after being placed on the maximum dosage of the anti-spasmodic drug Baclafin. Valium was added in order to assist the Baclafin action but it just made me a drowsy 'spaz'. Botulinum toxin was suggested as a therapy - full paralysis to ease the spasms. I declined.
On waking each morning I tried not to move as I discovered that soon after starting to move my upper body the spasms would start. At the Rehab hospital spasms would start in the morning and last all day long until I passed out at night. One leg or the other (funny, not both together) would start jerking, perhaps once every few seconds continue unabated all day. Spasms could be a mild annoying twitch to jerks so intense that the repeatedly lift/throw the leg up in the air and off of the chair or bed. I felt that if restrained, these violent spasms could tear tendons and dislocate joints. Morning to night - jerk, jerk, jerk, jerk.... how do you concentrate on your life when in a spasmodic state? Luckily these massive and continuous spasms have decreased in intensity and perhaps are attributed to vigorous exercise or restored neurological pathways(?).
At the Rehab hospital the physios tried to put me on a motorized bicycle in order to move my legs for exercise and circulation. It was quickly realized that my spasms wouldn't permit my use of the cycle as the bike would detect the spasm and shut down in order to prevent injury. My bike couldn't move my legs safely and I couldn't move my legs. Currently (Mar 08), I use the bike at the hospital daily and push the cycle to the upper limit of 120 rpm with half of the available resistance dialed in (6Nm). Think of it as going uphill. I usually manage to peddle the equivalent of 17 Km (10.5 mi) in a half hour period.

Spasms and Baclofen - In spite of being on the maximum dose of the anti-spasmodic Baclafin, I continued to have spasms and jerk continuously. (see above) Thinking it had no effect I gradually reduced the dosage to see what would happen. The spasmodic jerks didn't increase but what I found was that muscular tension increased and my legs would want to clamp together. It became very difficult to peddle the bike or put my pants on etc with the clamping action. I went back on the Baclafin.

Monday, 24 March 2008

$750.00 For A Foam Seat!! - If I'll Ever Get it!

$750.00 For a Foam and Gel Seat!!!

Stick the word "Medical" on anything at all and mark up the product 1000%.
If you need it, you'll pay. After all, sometimes private insurance will pay or if not some government agency (read taxpayers) will defray the costs. That makes it OK.

In September I ordered a manual chair (Quickie 2) with a combination foam and gel seat - a J2 Deep model. It was to arrive in 2 weeks. Months later I got the wrong chair, from the wrong manufacturer & outfitted with a rather thin J2 model. I kept the seat to use on my motorized chair which I would exchange with the proper seating cushion when the correct chair and cushion arrived. In February of the new year I received the proper chair but with no cushion even though the invoice clearly indicated a J2 Deep and my having pointed this out in person to the company representative! The chair was still unusable as the back did not allow me to sit far enough back to feel comfortable and because of that my center of gravity was too far forward resulting in the chair tipping forward whenever I reach for anything.

Now it is mid-March and after more than 6 months I still don't have a usable chair nor the proper cushion!! This is not some custom item that some worker in China has to design & manufacture. This is a standard, from the catalog, seating cushion of which there must be hundreds of thousands in use throughout North America! Here in the age of faxes and Fed-Ex, I'm waiting months for a standard cushion!! There must be one more in some warehouse!

The price of the missing cushion as indicated on my invoice is $750.00!!!! The difference between the J2 and the J2-Deep is just that - the depth of the foam base making it a bit thicker for a big guy like myself. And what do you get for that $750.00? A dense foam base which is just slightly softer than a sheet of plywood. On top of that layer is a softer foam front over which one's thighs hang and a plastic bag containing a thick gel which molds to and supports you're butt.

I have to wonder how many study groups, design specialists , CAD programmers, medical experts and material suppliers were commissioned to come up with these two slabs of foam and bag of jell0 withing a cloth sack? Have to justify that price somehow....

As for that gel seat? - it is so hard that it is almost impossible to sit on it for any length of time. The gel does conform to one's bottom but as I have plenty of movement the gel squishes to the edges leaving my butt sitting on the incredibly hard & solid foam board. The gel has to be kneaded and redistributed each time I leave the seat. Still the gel is insufficient for any comfort.
While at home, I have on several occasions replaced the $750.00 seat with a cushion from my living room couch, which in it's entirety cost less than the gel cushion. It also offers better support and comfort than the "medically correct' cushion. If I could get to a furniture re-finisher's upholstery shop, I'm certain I could find some spare or discarded cushion for a few dollars. I could sew it into a black cover so as to appear professional and it would probably suit my needs better than the gel seat I have or the one I have been waiting for for half a year!!!

As for the sear, I'm still waiting.....

$750.00 - For that price it must be blessed by the Surgeon-General or at least the Ministry of Health. That knowledge will make my butt feel better!

Thursday, 6 March 2008

Transhelp - Transportation Cancelation Without Notice

Transhelp (Region of Peel -Ontario)
Public Transportation for those Physically Challenged

These days there is very little about human nature that surprises me however I have to wonder how many people would feign a disability in order to get subsidized door to door transportation? A slight limp, an undetectable heart condition? - maybe… But would someone acquire an $18,000, 350 lb electric wheelchair in order to dupe the transportation service?

While some clients of the Region of Peel’s Transhelp bus service are required to provide physician’s notes or be assessed in person at the Transhelp headquarters, I was never asked for proof of my disability. When first requesting the service in early March of 2007, I mentioned that I was in a power wheelchair and immediately was provided service.

I was using the invaluable service since March of 2007 as transportation to and from my hospital’s physiotherapy department 4 times a week, each and every week. A standing schedule was set up for my rides each and every day at set times. All I was required to do was to call up their automated service each night to confirm my intention make that trip.

Imagine my surprise when late last evening I called to confirm and the computer generated voice told me that I have no rides scheduled. The Transhelp office is closed at that hour, I have no ride yet I have an physiotherapy appointment early next morning. Frustration!!!

Well, it turns out that a year ago I was placed on a one year assessment?/probation?/whatever? and last night my access to the service expired!!! Firstly, I was never informed that I was placed on a one year assessment, no mention that I would have to re-qualify/re-apply after one year and also Transhelp finds no problem with shutting me off without any warning or notice. Now, this morning it’s a scramble to cancel my physiotherapy session and then to follow the red tape to re-qualify for transportation to my two physiotherapy sessions tomorrow.
Don’t you just love bureaucracy?!

All that said, the Transhelp service has been invaluable to me in providing transportation health care providers. As with any group of people you meet, different personalities will become evident. And so it is with the Transhelp drivers I’ve encountered over the last year. Some are loud gregarious chatters while others are subdued and quiet. Regardless, I have found all to be professional, friendly and helpful in what often are difficult circumstances. Whether dealing with illegally parked cars blocking hospital entrances or dealing with clients who may have a variety of physical or mental disorders, I have seen them take verbal abuse, threatened with physical abuse and watched deal rush hour traffic, reckless drivers and inclement weather without losing there cool.
To them I offer them my thanks.

This morning the Transhelp transportation co-ordinator said that a letter informing of the one year probation was mailed out when I was signed on. She stated I would need a re-assessement to re-qualify for the Transhelp service which presented a 'Catch-22' situation. I need Transhelp to get to their assesment office, but I can't get Transhelp until re-assessed! However, the co-coordinator was pleasant and helpful and waived the re-assessment. I was placed on permanent service, having verbally accepted my being in a wheelchair.