3 replies to this topic

[pinkangel]

hello everyone
sorry i havent been around for a bit, things havent been good the past couple of months, i guess my post will explain a little of why

me my mum and dad were in a car accident 5 weeks ago
it had been terrenual rain the day before and that night all puddles had turned to ice. i was just drifting off to sleep in the back of the car, when i felt the car suddenly swerve and mum scream.. the car in front slid on a sheet of ice which u couldnt see, the car done a complete 360 dad tried to miss it but another car came along and hit it side on and we ended up in the ditch
no one major hurt all shock really but i was trapped in the back of the car, becuase of my spinal problems the impact hit it into spasm so i wasnt allowed to be moved. 999 was called ambulace and police turned up.

had to have a collar on..blooming uncomfortable things! LOTS of gas and air and used an air matteress to mould to the shape of my body while they got me out then got me onto a spinal board, they couldnt give me any stronger meds, coz the rules have changed!!! could either have gas and air or morphine but im allergic to it so had to suffer till i reached hospital..so if your allergic to it your stuffed how mad is that!

had very low BP, made it to hospital, did a spinal check,got severe whiplash, my back and spine is in deep shock so is in spasm so they gave me pethadine, stayed in hospital for a while, they then told meto see my GP about painrelief coz of my other meds & seizures theywanted GP to do it, so lucky enough manged to getan appoiintment got diazepam for the next few weeks

went to see my private physio the day after who put me in a neck collar, which im still in and still on the diazpam

then... weonly had the car back a few days and mum & dad were taking me to my physio appointment as im still suffering really badly from whiplash, when we were stationary at temporary traffic lights with a big queue of traffic which we were by a roundabout, then all of a sudden..BANG..a car had revved up the roundabout to jump the traffic and bshunted the side of our car, causing us to rock side to side..not helping me!! we couldnt get the number plate as it was fithy and speeding anyway
we continues to physio which was about 5 mins down the road, dad inspected the damage, had taken off the paintwork on the side which hes going to try and do himself as weve just done the excess on the insureance from the crash

physio said it hadnt helped me at all as ive now done the full side to side movement aswell as the front to back which i did in the crash so i now have whiplash all over again

i still cant move my head backwards despite the diazepam and painkillers so i guess its just time and more physio..just please watch these damn roads..it certianly makes me think.,..even if i could drive, i damn well certianly wouldnt!..not anymore

in the last couple of weeks ive moved house to a more wheelchair accessable 2 bedroom home so its taking some time to get things set up and settled etc.

the main reason im writting this is becuase im in need of some advice and support and have no idea of who to turn to but you all here.

i had a tonic clonic seizure last week, since then my right leg hasnt been right, i was due in london to see snow patrol with my sis so i had to wear my strongest leg brace for the first time in years. it was exhasting and just painful in the end i collpased in the middle of southwark

sunday things got worse and my right leg buckled underneath me out of the blue from getting up from the sofa was like i has noi legs attached, i already have left hemiplegia so my left side has no feeling or use...no it seems my right side is going
all through the day and evening my family were having to watch my body just basically "give up" collapsing in a heap infront of them nothing they did could help

this continued into monday by this point i couldnt take it any longer so monday morning i called for dr from my new gp surgery that i haved to for a home visit, who was wonderful, she examined my back and it was rock solid with spasms and tense, she was extremly concerned but the issue we have is that we do not know if this is being caused by my current spinal problems OR the severe whiplash sustained in the car crash and car shunt which im still recieiving treatment for and in neck collar still as i am unable to move my neck backwards

as the big problem i have is that i cant psyically move my neck backwards due tothe whiplash but due to the convulsive movements in my tc..its forcing that movement so goodness knows what that is doing???
my tcseizures which are diagnoed as NEAD but being treated with anti convulstants topiramate)
which have controlled to a point from 4-6 a day to 1 every 2 weeks ..have not changed so far with 2 months of CBT

myself and my family are at a loose end, im being refered to a pain clinic, ive just been put on amitriptyline by my gp, im not due to see my neuro till 18th june so ive just sent a 4 page letter to him explaining whats happening, ive been under the national hospital queen sqare since nov 2005, things are so very differnt now, can i ask for a full review of everything? the other thing that has crossed my familys minds which theyved asked me to ask here IF we have no answers from my letter to my consultant and nothing comes from it...currenly im confined to my wheelchair!! last week i was walking on crutches (just about) is their any other hospitals that people here recommed not situatied in london (due to major wheelchair access issues) im from the brighton UK area and willing to trvael up to 3 hours either side....possibly southampton, anyone got expiercen with them???
i know i may be getting far head of myself but my family are asking, they are at breaking point having not having ANY emotional or physical help so its all down to them to hold this all together

went to see my private physio today who ive been seeing since they found i had a C shape spine in sept last year he said there is possiblity is related to the whiplash from the crash but without proper drs looking at all cant be sure.my body isnt retaining ANY body heat either i am ice cold to touch despite lots of layers on clothes etc

also my GP has suggesated for me to try gabapentin due to the painkiller and anti convulsant in it, but is this generally used for tc seizures?

thanks so much

cat

[msg]

Hi Pinkangel
Sorry to hear about all your extra bumps on top of the problems you already had. I cant really help that much im afraid. Its one thing that scares me - having a bump in the car and making things worse. Theres lots of idiots on the road. My doc is also taking about giving me gabapentin to see if it helps my nerve pain, i think thats what it targets. Hope you get better soon and keep working with the physios.

Mike

[pinkangel]

Hi everyone

sorry i havent posted in a long while, thinsg havent been very good fior a wheilke,plseade excuse my poor spelling im having to type 1 fingered..will explian in a mo,menmt, didnt really know where to post this either so hope people getto read it

as you may know i am left hemiplegia which i developed 4 years ago age 19 from my drink being spiked, ialsohave hemisensory distrubance so i have no sense of feeling/touch to the left side of me. and also have scoliosis
i alsosuffer with mental health issues, lerning difficutles,sppech probs and seizures - tonic clonic ones.o am alsorecovering from a car crash which happened in feb this year
which left me with whiplash

thew reson for me writing is i really need some help

2 weeks ago i suffered a severe seizure in the early hours of Saturday morning and landed head first in the hallway of my flat, which is wooden flooring, to which sent my back and neck into deep spasm. I hit my alarm button to which my mum & dad came round about 2am I was laying face down in the hallway with my right leg twisted around the clothes airier – how that happened I have no idea lol mum managed to roll me with the sliding sheet but that was it

since the car accident i was involved in back in feb my neck has been suffering severe whiplash so been in and out of neck brace and painkillers etc so unfortunately this seizure set things back a lot

i was unable to move so paramedics came and put me a spinal board and collared me just to protect my neck coz of the whiplash .i wasn’t allowed any pain relief due to the head injury the risks are too great

Got to A&E and..Well a sat night in a&e was NOT pleasant one bit! i felt every bit sorry for the staff that night. It was a 5 hour wait all night..Still no pain relief..for about 5 minutes I kept seeing these black dots in my eyes, was really weird then out of the blue, I had another TC seizure, but with the full immobilisation collar on which couldn’t be taken off as I hasn’t had the all clear from X-ray, so mum told me after that about 6 doctors all came running, I went blue foaming at the mouth, mum said it was decided rectal diazepam was used to stop it..it was totally unexpected . Was put on oxygen for a while and they managed to get a line in first time which is also a first for me!! So finally they got painkillers into me as when I came round agony wasn’t the word!!! I don’t think I’ve cried so much to be honest with you..so pethedine it was  My mum was with me all though, it was un bearable to say the least, I’ve had pain..But nothing like this

The Drs said the bang on the head was the likely cause of the unexpected seizure, and tha they wanted to monitoer me closely so I was moved to majors for the duration of my hours in A&E

By this point I was still in the neck brace as I was still waiting to see the DR, so I was laying flat for about 7 hours!! When the dr arrived she examined my neck and back and she said the neck was defiantly solid – which it shouldn’t be and the lower back was also solid and spasming and was agreed I needed an urgent neck and back x-ray so had that done, by this point I was at breaking point with everything, tired and emotional.

The X-ray thank goodness came back clear, But the ligaments, tissues and muscles surrounding the neck have all been torn As a result my right side is now permanently in spasm including my bladderamd bowel so now I can’t wee properly.. since having left hemi i already have inconincae problems and in molicare NHS nappies and pull ups and also on movicol
but now When I want to go it won’t let me as im pushing against the spasms and it really is hard and terribly upsetting and painful,


It’s also now affected my hands, being hemiplegic I can’t use my left side – so losing my right hand is a big blow and big learning curve, and im feeing extremly isolated and frustrated some days ive had to be fed, im drinking drinks through straws etc
I am also in an immobilisation neck brace for a while to give my neck and spine a chance to rest. and seeing physios etc

The medical team agreed I needed to be stabilised and to be moved to a proper bed as the a&e “trolley” was doing more harm than good, so was moved to EAU – Emergency Assessment Unit

I Was set up with lots of painkillers and bed rest, I got quite distressed during the night just couldn’t cope with the surroundings, the notice, myself, the pain, and just watching myself fall apart in front of me, but the staff were amazing.

The consultant looking after me was brilliant spoke to me and let me talk and gave me time as my speech is slow. The biggest issue over the last 4 years has been is it NES/NEAD ? or Epilepsy?– my current diagnosis is NES/NEAD (non epileptic seizures) BUT I’m on anti convulsant medication, I respond to status meds, (which mediucally can NOT happen in non epi seizures) I’ve currently had 4 months of CBT…and no change

From the whole time I was there from ambulance pick up, A&E, and the move to EAU it has been EPILEPSY, and on each ward round and my final one yesterday they asked about my topiramate and they ask about my epilepsy care to which I said I am currently thinking about a move to the epilepsy centre at Southampton to which he agreed,
and on the discharge forms it has Epilepsy on it..FOR THE FIRST TIME IN 4 YEARS SOMEONE IS LISTENING…you don’t know how good that feels!

ive been in out breaks of tears - ive just recently moved into my new home, and again had to go though the whole kitchen because i have now lost the use of my right arm - i dont have any use of my left anyway - the right one is just permentaly spasming - i can feel sensation, but its continual electric schock feeling you know when you touch someone or something..im feeling that from arm to toe constantly

mum usually comes round on wedneaday mornings to make me a hot breakfast..which ended up on the floor as i was unsucesfully trying to feed myself so moved the dining table &chairs to sit my wheelchair in and bought new plastic set of plate bowl wine glass and cutlery,and have to have bib on now, it was so hard and was crying though the pain and personal humiliation but got throguh it
def can only drink with draws now as i cant hold cups unless its my breaker and imlaying down..like the baby position

the worst bit affected which i thought it would never come to was inside..both my bladder &bowel are too in spasm (Sorry TMI...but i was on the loo for an hour last night, i was not constipated, as im on regualr movicol, but each push sent a powerful wave of spasm and there was nothing i can do exept ride it out...something i NERVERwant to fo again,but these spasms are so ###### strong!

the issues im finding very hard and if any one can offer ideas i would apreciate it, is things like doing/undoing buttons & zips...with NO hand grip. i literally have no hands so how does anyone get around it? my right hand is also curling inwards the same way my left hemi hand is...my right leg is not affected but i have got afos on both feet for extra support can anyone suggest any good wrist splints? im trying to get my OT to get me refered to othotics but its proovjg difficult due to "wiaitng lists" i cant use my crutches coz i cant hold them,i literally am totally armless and have no idea where to start :-(

im trying everything i can, its sofrustrating...if anyone has any ideas big or small really would help

cat

[qbounce]

Pinkangel,
You've really been through the ringer recently, haven't you?

Wow sorry I've missed this 'til now. But, just allow me to say how unbelievably strong your will is to be constantly posting and searching for answers where, sometimes they're just so hard to find.

I know you said you "have no hand grip" but you have sensation in your right hand. So, I'm thinking how it's possible that, much like myself, your right arm grip has been greatly impaired but you can still hold even the lightest of objects? I hope this is the case, anyway.

I found this gripping device on sammonspreston.com that has a hook on one side (for zippers) and a button closer on the other devised for your dressing needs. Best money I ever spent.

I can't say much for all the other turmoil your going through, but I hope you're doing okay.