[claire]

HIYA.

I am a Staff Nurse who works in a combined Intensive Care/High Dependancy Unit, in Lancashire. It is a regional unit for head injuries and spinal injuries as well as a general ICU.

I am about to undertake a degree course in which I would like to specialize in care on SCI in an acute setting. I am aiming to look particularly at bowel care unless I can identify another area to focus on.

I would be interested to know if people with SCI feel it would be beneficial to have a bowel care regime started as soon as a lesion is diagnosed and if this would help with rehabilitiation. I wold also be grateful to know any areas people would like to see improved if they were admitted to a HDU/ICU that they can remember or that relatives commented on.

Anyhting will be useful and then we can try to implement it into practice to i mprove service.

Thank you.

[susiejt]

claire, on Mar 11 2007, 01:38 AM, said:

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HIYA. I am a Staff Nurse who works .............help with rehabilitiation. I wold also be grateful to know any areas people would like to see improved if they were admitted to a HDU/ICU that they can remember or that relatives commented on. Anyhting will be useful and then we can try to implement it into practice to i mprove service. Thank you.

Hi, my experience maybe not what you're after (not acute for long)...but disregard if not relevant to your acute care focus....anyway it was significant, ongoing & very horrible. i was more one of those ones who not being acute enough, thus slipped through the cracks that would normally be filled with some degree of knowledge & education & aftercare. i sustained a neck injury which ruptured a disc & sent it & the endplate of the vertebra into my spinal cord, crushing it. Obviously there was a miraculous hair's width between quadraplegia and having an incomplete SCI. The problem was that pre-surgery, although in agony, because i was walking, except if i coughed or sneezed or hit uneven ground & then there would be momentary quadraplegia & inability to breathe then i'd recover again & on i'd go - very scary but i think it meant i never fitted the clean medical box. So before, during & after the "life-saving surgery" no-one ever explained to me any of the symptoms & probs i was having, except before the Neurologist said "stay home & read, don't get out of the chair because if you slip over you may never walk or breathe again". In HDU i was too sick to care about anything at all and my partner stayed there for 48hrs trying to keep me awake as every time i went to sleep my vitals weren't good. Then i was sent to the Neuro Ward to recover, so got zero information on anything about the numbness in my legs, the headaches, the majorly dramatic constipation episode when about to be released home - again it seemed that as i was walking that anything SCI related was invisible to them & i certainly had no idea. When i went home i was left with terrible ongoing problems but it was as if the experts thought that if anyone actually said what was going on, that something terrible would magically happen or maybe 'if we don't tell her the facts then she won't realise & then she'll just get on with her life ( ) & all will be well'.

i never got back to work & life VERY different-my spinal instability, numbness, muscle weakness/fatigue & chronic pain were debiitating. The Neurologist & Neurosurgeon did not want to see me after the surgery had "healed" & they had done their bits - Nerologist suggested i find a Physio but that was all. My Physio was the first to give some explanation about spinal cords & to slowly explain to me that i needed to accept that i would not get back to work - i still assumed, until then, that there must be a full recovery & was blaming myself that it wasn't happening - not a good feeling. but still i was floundering for a very long time - struggling to understand the day by day physical shocks of a body that behaved very differently than it had before & emotional ones connected. It took me 4 years of hunting & trying to understand what was going on, to even get to a Rehab Dr & i cannot tell you how good it felt to have someone FINALLY explain what had been driving me crazy & making me feel so alone.

Now, even my brother is a Dr, a General Practitioner, & not even he ever gave me any clues - i think he had never come across anyone with SCI much less incomplete & 'invisible' SCI. I think even many specialists don' t even have a clue at all...... so things i'd like to see changed......some way that those who are not so acute or not acute for very long but are still going to have major ongoing problems nonetheless can get support & proper education & care - instead of mssing the Spinal Unit (going instead to the Neuro Ward) & then just sent off home, without a word, to stumble along alone trying to get to the bottom of it all & taking years to get even basic understanding & therefore delayed acceptance too etc.

Here i am now 5 years along, 5yrs to the day i only just realised, and only now that my new & great Dr tried to take me off Inderal, a beta- blocker (for migraine from 3mths before injury), and i became very sick with mad blood pressure changes & heart irregularity & pulse going anywhere from 75 to 100 for no reason - only now are we starting to wonder if i also have autonomic dysreflexia or something from the SCI that has been masked by the beta blockers for 5yrs - no-one else had even contemplated this. I have only even read about AD in the last 2 weeks, assumed before it was not me.

Oh that is my rant. Enough enough enough.