Now, when I had the first two series of Botox injections, the physiotherapists were concentrating on getting me up and walking - with the hope that Botox would improve my stride. They didn't check for range of motion pre and post injection to see if there was greater range and flexibility. Internally I did not notice any change in sensation nor any increase in range from my perspective. As the effects of Botox were to last about 3-4 months, before blocked nerves regenerated and formed new pathways, the only feedback I had regarding the effects of Botox therapy was what I thought was a shortening of my stride as the next injection date approached. My Physio and I thought that this was probably due to new connections circumventing the Botox blockage and therefore the Botox was effective.
Now that I am upright and able to walk for periods of time, my new physio was concentrating on various manipulations to my limbs such as stretching out the quads and hamstrings as well as the piriformis muscle (but more on that one later). As she was directly observing and working on the range of motion of my lower limbs, she was interested in seeing exactly how much more range the Botox therapy provided after a series of injections to the Soleus and Gastroc muscles (basically the two calve muscles joining to the achilles.
As it turned out, she said that there was an increace in flexibility and range a day after I received the injections, however now after only a week has passed, she no longer detects that change even with the increased therapy. Could the Botox really be that ineffective for me? If so, I really have to reconsider whether to take any more shots in the future.
2- As mentioned, I'm back to the Gabapentin from the Lyrica as in the end I felt the Lyrica had no greater effect that the Gabapentin, had fewer side effects (for me blurred vision and probable weight gain) and was less expensive which would please my private supplemental health insurance carriers.
3- Also as mentioned, I'm walking more at the physiotherapy clinic though still somewhat unsteady. Have to improve on the core muscle stability as the muscles, particularly the lower back, tire quickly. Trying to regain that link - feedback from the feet on the floor, telling the brain what's happening and subsequent messages from the brain telling the muscles how to perform to correct, compensate and maintain balance while upright. Since standing for the very first time, post injury, I still have not fallen to the floor once.
4- Tone- not the tone that athletes & body builders speak of when they say an athlete is really "toned", but rather refers to the increased tightness, post spinal cord injury, where the communication between the damaged cord and the brain, tells the brain to clench or tighten. Baclofen is supposedly prescribed to lessen this signal and reduce the tightness experienced.
In my case, I believe, (I believe, because meaningful feedback from therapists and doctors is sadly lacking) - In my case, I believe that because the injury is not quite symmetrical, one part of my spinal cord received more or different damage that another. As a result there is greater 'tone' on my left back muscles than the right resulting in a greater pull or tension on the left. It is also my belief that this results in my left side pulling more on the muscles attached to the hip and this asymmetrical pull results in my sciatic nerve pain. A tremendously painful affliction which is bothersome even when not sitting. On my stomach the nerve throbs with pain with every pulse and heartbeat. A truly maddening situation. On the few good days it is noticeable but tolerable. On bad days it is excruciatingly painful, drawing one's attention to it ever minute or so. Something I've endured for three years and no health care professional has offered any advice other than to "learn to live with it". Yeah, right!
This new physiotherapist has at least attempted to stretch out the piriformis muscle with a manipulation akin to grabbing my leg by the ankle and while bracing with one hand on my hip, pulling the leg out sideways. When she first attempted this on my weaker (painful) side, the resulting spasms were so great the I thought the recoil was going to kick her in the teeth. However, within days the spasms lessened to where now she can pull through just about a full normal range with only a slight shudder on a very few stretches, I do believe this has helped the pain. Although a bit tender the day after the therapy, I get a couple of good days afterwards. For how long, I'm not sure as I'm back in physio receiving that stretch and subsequent post physio tenderness the day after. Not sure how long the relief might last however as the tone is always there, the hip will most likely be pulled out of alignment once more.
5- Low Level Laser Light Therapy. Not sure if this is revolutionary or just plain Voodoo science but I've had a few sessions with laser therapy in an attempt to help my sciatic nerve pain. Can't quite see how it would help in my situation. I understand the premise is that the laser light somehow alters the cellular biochemistry at the site it is applied thereby increasing healing. (very oversimplified). But I just can't see how shining light on my butt will cure a pain that is much more deep seated (no pun intended). Therapy consists of placing these light emitting panels under my shorts, positioned against the skin at the afflicted site. The laser is turned on for six minutes after which a different panel is inserted (different intensity?, frequency???) for another six minutes. There is no sensation associated with the therapy (ie. no heat, pulse, pain etc.) After about 4-5 sessions now, I notice no difference, however I notice very little change from any of the therapies except possibly the stretching of the piriformis muscle. Nerve still hurts but doesn't spasm as much. Laser therapy was included as part of the physiotherapy session.
6- My physiotherapist suggested I try massage therapy once again to loosen up the legs and perhaps increase circulation. I passed the issue by my physiatrist (Doctor), specializing in spinal cord injuries however he stated that there are no studies suggesting that massage therapy aids this tightness. The 'tone' will always be there - it cannot be shut off but only controlled with doses of Baclofen. It was my impression that he believed that the tone would simply undo, or fight any improvement the massage therapy might offer, negating any gains almost immediately. As my private insurance does cover limited sessions of massage therapy, I though I'd give it a try because;
- my doctors have been wrong in the past, numerous times
- each person responds differently to therapy
- the cost is covered and the therapy can't hurt
- it may aid circulation if not the tightness from 'tone'
Phyisotherapy twice a week after work for an hour to hour & half and Massage therapy once a week for a half hour. 12 hour days! Pain at times is unbearable and not much to look forward to can really mess with the mind.