Tag Archive | nerve damage

Reality is Sugar Free


Some of my doctors are better than others at providing a clear view of reality, while others offer the sugar coated version. Some are extremely confident while others provide wiggle and waffle room. I would, sociologically speaking, find it fascinating if it wasn’t my future we were discussing.

I visited one of the top spine rehab neurologists in the country yesterday. I’m glad I didn’t get my hopes up before the visit, but I am also glad I went so this can be settled once and for all.

His phrasing refreshingly sugar free, so I am going to provide a  summary of our discussion here.

Dr: What is it that you think I can help you with today? What brings you here?
Me: Well, I haven’t seen a neurologist for my spine since I was a child, after the initial injury occurred, and based on a recommendation from my physical therapist I wanted an evaluation of current status and what I might expect for healing, and if you could do anything for the other bothersome symptoms I have like stomach issues, bowel/bladder, leg twitches while sleeping, balance trouble, leg weakness, things like that. And I wanted to see if you had any information on how this might effect vestibular function or migraines. (I think I rambled on a bit actually but that was basically what I tried to say)

He gave me a good long stare.

Dr: I have reviewed your charts. I see your xray here (points to screen) and this is not a healthy spine, I would be amazed if you didn’t have balance issues and leg twitches. I saw your vestibular testing, some of that was rediculous to give to you, you have impartial messages going through half your body, of course your brain is confused by that, that doesn’t indicate malfunction, that indicates adaptation to so many years of your central nervous system doing its best.

He then did a standard neuro exam – watched me walk up and down a very long hallway, hit reflex points in knees, feet, ankles, arms with his rubber hammer, had me try to push against his hands in various positions to check strength. He noted the weakness, abnormal reflexes, difference in size and temperature of my legs.

He made that face they always do when they confirm spinal nerve damage. Even when they know, they don’t like to see it. I don’t like it either.

He seems like he wants to dismiss me, and I almost panic, this can’t be it, I waited 4 months to see him, drove 2 hours, and walked 20 min, waited an hour past my time. I was getting my questions answered.

Me: Would it be worthwhile at this point to do any testing to evaluate the nerve health, like EMG or anything else to see how the nerves are functioning now? Either to help with physical therapy or provide information as to the extent of the damage? Give me realistic expectations?

Dr: No. It would not be useful. We use those tests as pass/fail, the numbers are irrelevant for treatment. You have already failed without further testing, you have signs of severe nerve damage. If we tested you, your numbers may come out high or low, but they will come out as abnormal, which we already know, so its a waste of time and money.

Me: Oh. I see. So I was once told that I might expect some healing every 10 years or so, the rate of nerve growth. Is that still true based on recent medicine?

Dr: Only the Good God knows if you may expect some healing, but some doctors do say some stupid things, don’t they? This type of damage is not known to be reversible and at some point it may be time to stop seeing doctors and get on and live your life as you can.

I had to blink that back, totally was not expecting that response.

Me: Okay… but what about some of the other secondary symptoms. I’d really like to sleep better. Anything to help my legs stop moving and twitching? Or to keep my stomach moving along to prevent the heartburn and constipation? Or to give me better sensation to know when it is time to use the bathroom instead of watching the clock?

Dr: We don’t have any magic pills for you. Again, with the damage and curve still left in in your spine I would expect some considerable irritation and twitching. You should ask a GI about those other issues. What I will do for you is contact your vestibular therapist and add some exercises to your plan that will help with balance, make you more confident, and reduce falls. I’m also referring you to a vestibular neurologist. There’s nothing more we can do for your spine. You should know it is very strong now, between the fusion and the hardware, your spine itself is quite safe and protected within its armor. You could still pull a muscle, but there is nothing you could do to hurt your spine, even drive a truck over it. hehehe

He recommended Otago and Tinetti exercises. I looked them up and found that they are mostly for older adults fall prevention. Hmm. Seems like my CNS has aged prematurely. Here is info on Otago and here is some on Tinetti exercises, each has a pdf to download and youtube of course has many videos too.

So I guess I appreciated his attempt to give me confidence and lighten the mood. I believed him, every word. My spine is solid. The damage has not changed much since I was 12, I don’t really expect it to change much, better or worse, so I guess I can accept that. It isn’t something that needs monitored. OK. I am fine with one less doctor, really I am.

And I agree that I don’t need any more painful, expensive tests to prove what we already know. Fine. Move on.

Somewhere I was maybe hoping for some radical new treatment, something cool with stem cells, or a brand new medicine that speeds up nerve transmission, or something that filters out these random twitches, an implant, an electrode…but no such luck. Its ok. I’m ok. I’m glad I asked.


Mindfulness and depression, part 2

I want to expand on my comment in part 1, that being mindful is really about being bodyful.

The way I understand the methods in this book, “The Mindful Way Through Depression” by Williams, Teasdale, Segal, and Kabat-Zinn, is that when we suffer from chronic bouts of depression that we are used to living in our minds instead of in our bodies.

It seems that this book feels that most people, have difficulties remaining attached to physical sensations throughout the day, most days of our lives. That we run about ignoring our bodies and sensations and live instead with the running commentary of thoughts, worries, and plans.

I agree with that, but it is so entirely complicated.

But here’s my difficulty, and I have to play the ‘special card’. But this is not coming from my inner child right now, she is skipping along quite happily at the moment. These are simply unavoidable facts about my history that I am trying to integrate into the new knowledge I gleaned from this book.

I have a special relationship with my body –  full of extremes. Due to illness, pain, trauma and abuse- I have learned to filter or ignore some body signals, and have enhanced or tuned into other body signals to protect myself over the years. What does that mean?

I have learned to detach myself from many bodily signals for a few reasons, and each one is hugely significant.

First, I learned to tune out AF’s nightly sexual encounters and inappropriate touches – if I didn’t allow myself to feel it, he wasn’t really touching me, it wasn’t really happening – I couldn’t really feel it. It was how I survived. Enough said on that I think.

Second, Again my youth has tainted the simple act of breathing. I was taught to control my breathing due to extreme asthma. I knew about belly breathing and deep breathing exercises at age 4, as my allergist showed me how to control asthma symptoms and keep my airways open. My asthma was so bad when I was little that I would gasp every few words, not having enough air in me to get an entire sentence out. I was unable to make the wind instruments squeak no matter how hard I tried. I was weak and sickly and always aware of my breathing and the tightness in my lungs. Learning to pay attention to this saved me a few trips to the ER, as a precisely timed inhaler use could keep me breathing. (my inner child wants me to point out the ridicule I received about this, and how AF continued to smoke like a chimney and ignore my coughing fits, saying it was all in my head and cigarettes never hurt anyone – his emphysema has served as poetic justice to my inner child, as I would wish no harm on anyone, but inner child dances saying “I told you so”)

Second, I learned to tune out from the pain of my spinal injury and nerve damage. I still do this – how else do you get through a day? If I breathed into an awareness and fully felt the pain – would I be able to carry on? But on the flip side, I also learned to be acutely aware of certain body signals as my spine healed and I learned to feel hunger, control my bladder, and then to walk again. All of those body functions that should have happened without thought or control, required my intense thought and control – mindful awareness – except that it has always had a goal, which I learned that mindfulness cannot.

And so here I am today, trying to be mindful without exerting control, and I keep wondering if it is possible for me – am I truly too special? Even Cesar Milan had a few cases ‘too far gone’ to rehabilitate. Not that I’m suggesting I should be ‘put to sleep’ (of course I have wished for that in the past, so I shouldn’t joke about it, but then to deny this thought now would be lying – so what if I have dark humor, some of you will understand) but I do wonder what level of rehabilitation I may expect to achieve. Is peace and balance truly in my future?

A part of the book explaining mindful walking made me cringe, and then sigh out loud. Here is a bit of it from pages 91-93. I’ll explain my reactions to it down below. This passage was hugely triggering to me – but I trudged on through anyway.

” 1. Find a place where you can walk back and forth in a location that is protected enough so that you will not be preoccupied by a feeling that other people are watching you do something they (and even you at first) may perceive as strange

. . .

3. Bring the focus of your awareness to the bottoms of your feet, getting a direct sense of the physical sensations of the contact of the feet with the ground and of the weight of your body transmitted through your legs and feet to the ground.  . . .

4. Allow the left heel to rise slowly from the ground, noticing the sensations in the calf muscles as you do so, and continue, allowing the whole of the left foot to lift gently as the weight is shifted entirely to the right leg. Bring awareness to the sensations in the left foot and leg as you carefully move it forward and allow the left heel to come in contact with the ground. A small, natural step is best. Allow the rest of the left foot to make contact with the ground, experiencing the weight of the body shifting forward onto the left leg and foot as the right heel comes off the ground.

 . . .

8. Walk back and forth in this way, sustaining awareness as best you can of the full range of your experience of walking, moment by moment, including the sensations in the feet and legs, and of the contact with the ground. Keep your gaze directed softly ahead.

. . .

12. Remember to take small steps and you don’t need to look at your feet. You know where they are. You can feel them.”

OK, so my mind was racing as I read this. #1 – wow – triggering. Yes AF made sure I only walked in hidden areas, he told no one of my disability and made me do my rehab in secluded areas to hide my shame and disgusting broken body. Why should we start any exercise with the need to hide ourselves? If someone thinks you odd – sorry – but F*** them.

#2-11 – So similar to what I did relearning to walk with a weak leg after paralysis at age 12. My right leg was not strong enough yet to bear my whole weight. I had a clunky metal brace on it, hip to toe. I started with a wheelchair, then a walker, and then a cane. And then I limped on my own stubbornness, when I could no longer bear the shame of the brace – and fell often. Up until about 3 years, I was still unable to bear even half of my weight on my weak leg, so my gait was a slow drag-hop type of limp and I leaned heavily on the left, only using the right for a split second. I had to think and repeat “heel-toe, heel-toe” as I walked, sending the command for each step. Without my brace, I could not lift my foot at the ankle, so I learned to lift my leg at the hip to swing it out fully and have it land on my heel rather than drag my toes. I thought this made me look like a peg-legged pirate and my family ridiculed me – calling me someone from Hogan’s Heroes (Was it Klink’s friend?) and hop-along-Cassidy, who I never heard of and honestly forgot until I just googled him today – apparently I reminded them of a drunk cowboy with a bullet in my leg.

So here’s the interesting, no fascinating part to me. I was practicing mindfulness to get in tune with my body’s sensations, but since I was controlling it, and had a goal and a harsh judgment – it wasn’t really mindfulness at all.  And if I had tuned in to each sensation, and fully felt the crushing pain in each step, I’d likely still be in a wheelchair – or at least I was so afraid to face the enormity of the pain that I chose instead to block it. My ability to filter out the pain while focusing on the movements is the only way I got through it all. But according to this book, if I had been able to accept the pain, rather than block it, it would have been better for me?

In case you have no experience with nerve damage – Saying a leg is numb, means I can’t feel what happens to it externally. But the internal, constant pain during that time was excruciating. Like my leg was screaming, panicking, and trying to get my brain/spine to listen. It was like being on fire, zapped by lightning, and being crushed by elephants all at once. Pain meds did nothing for it. I still have some bouts of this nerve pain, if I twist and lift something the wrong way, or over exert myself, but I feel so lucky that it has mostly subsided. But I do fear it, and block it. Is pain an emotion? Or is it ok to mentally block physical pain and just not emotional pain? When I think it all amounts to neurochemicals and electrical impulses I just don’t know anything any more and feel my body is too much a complicated mess to fix. If I were a house, I would tear it down and rewire from scratch – too many shorts, too many bare wires and exposed damage, too many rotten areas from neglect, too many bad splices, and the old system is not supporting the new modern devices. I’m trying to run my life on my old ball and knob wires and getting surprised or upset when a fuse is blown or a fire starts.

#12 –  I HAD to look at my feet. I could not feel them. If I looked away for even a fraction of a second I would fall, the leg would simply crumple with no visual feedback. I practiced this slow methodical hell-toe walk, hoping to feel something, thinking how odd I could see it moving, see my foot making contact with the ground, but could not feel it. Again, about 3 years ago the nerve healed enough to start sending commands and feedback. I can now look up while walking, but I am still so fearful of uneven ground, cracks in the pavement, stumps protruding, roots to tangle me, or any other obstacles that I spend more time looking down than up.

It seems I was doomed to have all the usual involuntary body actions needing my observation and constant control from poor health. Add the abuse in to the picture, and it is no wonder that I don’t know if I’m coming or going – what to control, what to let happen, which thoughts are helpful, which feelings to block.

So I am trying to learn more about myself, and simply accept me as I am, before jumpy into a hasty remodeling. Learn how to BE without DOING, have no goals to achieve, and be an observer . . . how odd that sounds. Is this really something helpful? Sometimes you have to judge and DO something, right? How will I know when?

I have had luck with breathing exercises and biofeedback, I have been able to keep my heart rate from soaring by using mindful breathing throughout the day. I have noticed I don’t accelerate into anxiety and panic as I used to. Bringing myself into my body instead of my panicked thoughts has helped 100% – when I can remember to do it, and even that is getting easier, and becoming habit.

Can I use this same mindfulness and breathing into the uncomfortable emotions to survive the upcoming holiday gatherings? I’m already pre-stressing and pre-planning to block the negatives to survive these ordeals, and maybe this is the wrong approach.

More on my ideas for this in part 3