In a weird predicament. I am getting married in 3 weeks, and am extremely grateful to be healthy enough to properly celebrate. I have rapidly improved and have no new symptoms EXCEPT some very minor shaking/trembling in my right fingers (this is the affected arm). has anyone experienced this in nerve recovery? trying to hold out all follow ups until after my wedding… I haven’t found many others with cervical avms, so I feel very isolated in this journey
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Hi Mike,
My spinal AVM is c7/t1 and has not bled yet or been treated. I have occasional twitching in my left hand which comes and goes.
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My shacking has not gone away, it comes and goes.
My avms where at T2 and T5 and where burnt shut.
For me the end result can be described as varying levels of muscle memory. Where in reality it should be call nerve or nerve control memory.
Example 1: Walking balance is good enough for a very active 75 year old until it is not.
Example 2: My daily 2-3 mile walk start painfully with some pins and needles for the first 10 minutes but then subsides to dullness. But if I skip a day the 10 becomes 20, skip 2 days become 40 and skip 3 becomes 80. Skip more is almost too much discomfort to proceed.
Example 3: Sit down for up to 10 minutes, it’s like it never happened. But, see Ex 2, the time thing starts rolling in. I love being on a computer having programmed since 1970. But I must walk every hour for 10 minutes or disaster.
Example 4: let me do a physical task I have not done for say a week or more. Sub example put a nut on a bolt. Yesterday I had to put a belt back onto a pulley of my walk behind weed wicker on wheels. Putting it back meant placing and then hand tightening four nuts a few times to get it correct. My left hand, I am left handed and my left hand is the one more affected, shock more and more as I increased attempts to control it. But the overall rash took say 20 minutes to complete. 3-5 hours latter serious hand cramps. Had to use my other hand to unlock. (Tizanidine here we come). Yes cramps is the result of using muscles that need relearning if you push to fast learning. So whenever you stop doing a physical task for over 3 days be prepared to relearn.
Example 5. Shacking, I.e. fine motor control. (The fans Parkinson disease symptom.) yep it happens, it’s most obvious on smaller pieces of the body than larger. Hands are the easiest to see. See Ex 6 and 7.
Example 6. Part of my post op was relearning to walk. That took a good six months to get to the 2-3 mile mark and started with being able to stand up and holding a counter. Being able to walk around a large island kitchen with my my right hand always touching the counter confidently took a week, the other way another week. Now Ex 7 will make more sense.
Example 7. Walking a street line, my version of riding a bicycle very slowly. Stand still. Now pick a point on the ground or floor a partial full step forward of either foot. Ok step there. If I really want to step at that exact spot my whole body will shack. Point placement control is very difficult. Alternatively mental draw a desired walking path on the floor and allow yourself to think of this path as something nice but not necessary to happen. Now draw out wider path lines on either side of the desired path and let’s call that width the acceptable path width. The wider the path width the less shacking. This is more what the roboticist in my calls “motion control” which to a layman is riding a bicycle with some speed.
Example 8. Taking a walk with my wife. She likes to walk slowly, I want to go as fast as I can.
Is this a q-e-d or not?
I should post this to the spinal ave site with the other stuff I put there.
I await your commentary or thoughts so I can make adjustments.
Life is beautiful. Yes this arm stuff is horrible. I have, like I do with everything in my life, try to make the problem an opportunity. That is all I can do.
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