Tag Archive | neurology

Reality is Sugar Free

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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.

 

Some questions have more than one right answer

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Taking tests in school I never much cared for multiple choice tests that allowed for more than one right answer, as in check all that apply. I always had an uneasy feeling that I was being tricked somehow, or that I was missing something.

I get the feeling my doctors are feeling the same way right now as they sort through my symptoms and test results. It seems that I have more than one reason for some of my symptoms, and they could be working together in some cases. Don’t worry, I’ll explain.

So let’s narrow this down to one issue I have right now out of the dozens. We are actively working on vestibular dysfunction. The vestibular system is a complex combination of eyes, ears and central nervous nervous. I have several abnormal symptoms, but I want to focus on just one to show how difficult this process is. I have trouble standing on uneven surfaces. By trouble, I mean I get disoriented, a dizzy, lightheaded feeling comes over me, my vision dims, my chest tightens and it gets difficult to breathe, my knees buckle and sway, my leg muscles spasm and tighten, I get nauseous…depending on what it is I fall over, nearly pass out, or need help getting off the surface. Examples are squishy snow, mud and sand. Memory foam. It takes forever to find shoes without memory foam now, but it is absolutely evil. Basically any type of foam. They have a blue bit of foam they keep pulling out at the doctors or physical therapy that I now refer to as the blue bit of doom. It looks like this.71-ZQEqun2L._SL1351_.jpg

Seems innocent enough. But when I stand on that, I completely malfunction. Okay, the first time it was a complete shock to everyone and I did almost fall and we all went “what the heck was that?” But now they pull it out, and I say I cant stand on that, they give me a bar to hold onto and a couple of spotters and allow me to ease my weight onto it.

So it shows a problem with my nerves, that part is clear. But where? The physical therapist was explaining to me that my legs don’t seem to be getting clear signals back to my brain. When we encounter squishy surfaces it engages our balance system and our brain has to make all  these tiny corrections of flex and relax. It seemed like the “relax” portion of the messages were not coming back, so my legs would get tighter and tighter only, never correcting for this position, completely lost and confused.

So I’ve been mentioning this to several different doctors now and with the new data, it may not be all from my lumbar spinal cord injury, but a processing delay in my brain as well. Like all these confused signals jam up my brain and it can’t keep up like it used to. This is my current understanding anyway.

What do I do with that? Meet more doctors of course. I see a spine rehab specialist tomorrow to see if he can help sort out which of this stuff is coming from the spine and which is coming from the brain and then maybe we can make a plan after that. I’m extremely anxious but also a bit eager to meet this new doc tomorrow. He is basically the guy I should have met nearly 30 years after my first back surgery went wrong and my parents didn’t let me have aftercare. I’m hopeful he may have some tips or meds for me to help with all the issues that come along with a spinal injury at waist level: bowel, bladder, digestion, twitching legs, legs moving in sleep, muscle spasms, muscle weakness, drop foot, knee pain…. and now how it has affected my central nervous system, chronic sleep issues, migraines.

I’m very curious if he has another piece of this puzzle, and maybe some advice to make my life slightly more comfortable. It’s going to be difficult and embarrassing to discuss some of these private issues, but I feel I’m up to it. I have my notecard with a checklist so I don’t forget anything. I takes months to get in and see a doctor like this, better be prepared for your 10 minutes with him. I’m only half joking. I’m sure I will be assessed by a PA or fellow or student thoroughly and then the doctor will try to dismiss me, and it will be up to me to make my case both interesting and valid. I’m also being realistic. I understand I have had this injury since I was 12. I am not asking for a cure and I know it isn’t likely that they can improve the conditions of the nerves themselves at this point. But I want to hear him tell me that AFTER he has done some testing and really considered my situation. Which I know means hours of poking and prodding, likely some nerve conduction tests which are not pleasant at all. And hopefully some other tests or procedures that I don’t even know exist that is brand new and high tech and showing promise with incomplete injuries like mine. I’m just so tired of them giving up on me before even starting, so please new doctor, please be open minded.