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Thread: Infarct - looking for answers

  1. #1

    Infarct - looking for answers

    Hi,

    I am new to the site and like many of us have more questions than answers. First order of business - is to determine if I am posting on the proper forum. I have been diagnosed with a spinal cord infarct with myelomalacia (a term I don't see mentioned to often). Damage likely a delayed reaction to head/neck trauma years earlier. Neurosurgeon called it "snake eyes" "cord attack" prior to emergent decompression and fusion in 2011. I have a lot going on that is very complex, confusing and defies answers. I am ambulatory with (with difficulty) - very spastic gate at times and have normal bladder and bowel function - but seem to have plateaued and have significantly declined past eight months or so. I likely have "co-morbid" and am trying to "teas out - what is SCI and what is not.

    I have had access to very good -medical and rehab care. However my presentation seems to be unusual - or they just don't see this in their "clinic" very often. It seems to me that "ischemia" / scarring of my cord might be playing havoc with my function. So, if i am in the correct forum, then I will proceed to be more descriptive of my condition, challenges and questions. This is an incredible resource with vast knowledge of the "users" - Thank you

    Respectfully submitted - Benjyh

  2. #2
    Greetings Benjyh
    Welcome and glad you found it.
    I am 4 years on, multiple sites of ischaemic spinal chord damage, was a no hoper, walking and working again.

    Don't overload yourself with scientific literature and references.

    Regards

  3. #3
    Spinal cord infarction (spinal cord stroke) is most often associated with AV malformations of the blood vessels in the cord, or due to damage to the blood supply of the cord as it comes off the aorta in the abdomen (such as during abdominal aortic aneurysm surgery). It can also be caused by cord compression due to ruptured disks or bone that is compressing the arteries, esp. the anterior spinal artery.

    Myelomalacia is deterioration of the cord tissue, usually distal to cord damage from any cause. In those with incomplete injuries, it can cause the degree of impairment to increase.

    Have you seen a good neurologist for an exam (not a neurosurgeon)?? Have you been seen by an SCI-expert physiatrist? Both can help to determine what types of impairments you have, and track any further deterioration. A physiatrist can also help to treat the results of the impairments, and coordinate proper therapy for you. Did you have any formal rehabilitation (inpatient) after your initial infaract?

    (KLD)

  4. #4
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    Ronni co,
    how long did it take for your return to start? I would give anything to have my husband recover like you have. Congratulations on your wonderful progress.

  5. #5
    Hello again Benjyh

    It was about 90 days before i got any sign of improvement from my dead leg- 90 days not the 30 days believed to be the norm.

    There were a couple of very feint signs that recovery might be forthcoming - these signs occurred during the first 6-12 months and could and were dismissed by therapists as irrelevant and so inconsequential as not to fit the medical descriptions of improvement. Nonetheless, these factors were exploited and gradually these sprouted seeds of improvement. Lying in bed is the worst thing. It was recommended to me to stay in bed and only do an odd exercise with the therapists and so on. Terrible risk of falling they said! Ultimately I devised my own methods-if I could get the slightest sense that a muscle could be moved, then I sent a little spark to it. If I could stand very wobbly for 20 seconds on a zimmer propped by a bed or wall, then I did that and so on. There was a kind of jungle element to this because the hospital I was in did not really know what to do with spinal injury. For example, while paralysed from the waist down, I enquired after a week of no bowel movement what should I do to go to the toilet, I could feel I should go. The staff realised I could not move so they brought a wheel chair (which I never had been in before) and left it at the bedside and told me the toilet was some corridors away. The wheel chair has small low down wheels to be pushed, but no staff were apparent in the ward so I was left to discover how to move around using a walking stick to pull along using door knobs. As I had been in an isolation ward and as my condition was suspected to be a tropical disease or an unacceptable disease for religious reasons, staff were staying away from me I suspect.

    I learned how to get into the chair without assistance (there was none ) by balancing on my arms carefully. The temperature was at freezing in the toilet, I managed to get in to it despite a floor sill step and managed to get onto the bowl but stabbed myself on the wheel brake level. Temp outside was below freezing and heavy snow and windows were kept open for some reason. No heat. Another week later I managed to use a shower alone, shower with snow falling 1 metre away though open window. The staff attitude was 'do it yourself, we are not here to help with that kind of thing'.

    You may think this was in deepest Borneo or antartica in 1950 but it was western europe in 2000's. The point being that a paralysed person can easily be ignored and arising from this one develops a mortal fear and need for self survival. It is difficult to say if natural improvement due to re-vascularisation of the spine was the primary reason for my recovery or whether mortal fear was the driving factor to harness and exploit every possible opportunity to make a gain. These conditions are not incentives for everyone. Certainly enjoying comfort has its place but a time comes when an in injured person must go to work and harness whatever they can to improve anything they can.

    Some muscles of mine just do not work now and other are very slowly improving. One neurologist pointed out that improvement (if I could get it started) would go on and on over time and so it has. Repetitive exercises, were replaced by real life activities for a few months, then back to a different repetitive exercise and then life normal life activitys(e.g. standing). plateau effects, then stop for a while and change and introduce variety, and so on and so, many different approaches gradually contributing to improvement. Minimum drugs, sometimes breaks of 2 weeks from exercise to allow muscles to recover, build your own simple physio equipment using bungee, tried EMG for a while(did well), variety. Develop a craving for bananas (phosporous for spine), occassional litre of beer.

    More anon.

    Ronny

  6. #6
    Thank you for responding, but please note that the OP has not visited our forums since November 2014, so is unlikely to see your response.

    (KLD)

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