Here is a case history that might help others

General
1

2006-twitching left hand, right leg random; tingling (pins and needles)right leg after bike rides.

2009--increasing pins and needles right leg after bike rides

2011--pins and needles second toe of each foot (in 1966 both big toes had frost bit--believed at that time tingling might be associated with that)

May 2 2013--steep increase from random to continuous tingling in toes, started noticing some loss of balance control after sometimes carrying items, tightness of hip, lower level of energy.

Up to Aug 15 2013--continuous increase of symptoms to point of balance issues after carrying more than 60 pounds (I was tiling floor at that time and there was a one to one with moving boxes of tile). Pins and needles up to right leg knee, left to slightly above ankle. Started having trouble walking in a straight line without a significant "penguin" walking pattern.

Nov 30 2013--pins and needles above knees. Significant balance issues. Getting harder to walk.

During these six years I went through 4 neurologist--three of these since August 2013. Last one associated something happening in thoracic area of spine, prior thought lumbar issue or chemical issue. Tests in order, CAT Brain, CAT Spine, EMG, CAT Thoracic, MRI Thoracic, CTI Thoracic, MRI Thoracic, Angiogram Spin (primarily T2 to T5).

The key to the neurologist catching the cause was the test where she tested my reflex at the knee. The response was overly responsive.

Angiogram done by Dr Hurst of PennMed showed that T2 could not be treated by gluing method but T5 could.

Dec 16 2014 operation with laminectomy from T2 to T5. T2 suppl to outer portion of spinal cord embolized. T5 through gluing.

After operation did one day in intensive care, three days in two person hospital room under care of neurological physicians and nurses.

Home 12/21/2013. By 12/28/2013 able to get up and down staircase more than once a day. Back at work (University Engineering Professor) 1/06/2014 for an hour, by 1/08 for three hours, by 1/10 told boss could teach two courses with TA assistance. First day of class 1/13/2014 found needed "disability aids to teach".

Did a lot of suggested and then self designed PT from March to May of 2014. Then my own to recently. Hit three mile walks approximately Jan 2015. Those on good days.

Very poor muscle memory. What that means is if I skip a day I can only do around 80% of the day before the skip. Skip three days and I am in serious trouble.

Now September 2015---no improvement since around May of 2014. I am under constant pins and needles from toes to knees. Balance is an issue. I use hiking walk sticks when the ground is wet. But do not need them when dry.

MOre latter

2

Between preliminary diagnosis and first attempt to fix about three weeks and second attempt three weeks again. Neurologist and Chief Neurosurgeon at another Hospital recommended the Penn Med group primarily because of Dr. Hurst's experience in doing angiograms and possibly not needing to open up my back. Hurst tried but said it was too risky in this case. So we waited to the next window opportunity to get the right team together to do the work.

Also no bleed occurred as we caught it fast enough---but a bleed was becoming more likely each day per the symptoms.
3

Your comment about the poor muscle memory is interesting to me. Sounds like when you miss a day of PT workouts, the next time is more difficult. I find that to be true also as I have increased weakness when a day or two are missed. I however get very worn out from workouts and can’t go two days in a row as I need the recovery time. Perhaps I’m too aggressive in my workouts which I’ve been trying to figure out that balance. Do you experience that also?

4

In many ways our experiences have been similar, including 6+ years to diagnosis. I had my first symptom in 2001, although it wasn't until 2007 that my AVM (T6) was identified. Eight years later, after embolization and surgery, the AVM is long gone but the neurological deficits remain. I have all those you described, plus ... my pain is from my toes to my waist. Nor is there any improvement in muscular strength despite consistent exercise. I have kept track of each step I've taken for 6 months, and each step hurts just as much as the first one I took. There is no reduction of pain nor improvement in stamina. I keep on going, though, on the assumption that motion is beneficial and will keep me alive even though my existential condition will not improve. Keep on truckin' :)

5

This is now over a year from when I posted and have more data. I believe you might be pushing too hard. I too get your experience when I push too hard. I believe every day exercise is good but must be controlled as follows. First determine what can be done every day at least once. A second round the same day at about 30 to 50% is good also. Repeat at least the one day exercise for at least six days before making any change to it.

Now how to change the exercise is, I believe, variable with person. The more conservative approach is to determine an increase percentage. Athletes, I have heard, use ten percent. So on the second week only do 10 percent more than the first week. Be prepared for increase in symptoms for fist three days of the increase—but no longer. For me the increase of symptoms is one day. But makes sense to me that a few days might occur. Maybe if increase occurs for two days one might consider dropping back from the 10 percent to 5 percent increase for the remainder of the week and only use five percent in future weeks.

For me I can do the 10 percent increase with slightly increased symptoms for one day. Then drop back in symptoms to before the increase in exercise level from the second day on. If I get no increase for one or two more days I increase my exercise level by another 10 percent. Then I do what I said above per increases.

I am now three years post surgery and have much data on this method. I find if I stop exercising or decrease the level that it takes time to get the level back up to what I want.

I have established a goal level which I believe is appropriate for a 66 year old man with no other health issues. I am 5 feet 8 to 9 inches tall and 170 to 180 pounds. The height varies due to posture and weight due to both my mouth and exercise level.

My goal is to walk three miles on a fairly flat sandy beach at low tide in the portion of sand where the waves have wetted the sand a few moments earlier in under an hour–forty minutes if possible. I know I was very specific in that description; there are many technological issues which I will not go into at this time as to why I stated it as such.

My worse starting point after not exercising for awhile is around 100 yards using sandals walking outdoor on flat hard pavement in five minutes. To get from the worse point to my goal has taken me two weeks at shortest and three months at longest. The difference being associated with what I did for the month prior to my starting point. That is how out of shape and how long I had not done the exercise. How this helps.