ADVICE NEEDED PLZ

[welsh]

Hi Everyone,
Please forgive me but I didnt know where else to get advice from,as every which way I turn I hit a brick wall!!! Please bear with me as Im finding this really hard and upsetting,sorry. 2 years ago now I was brutally raped by a marshall arts expert! I sustained brutal life changing injuries that have left me disabled and confined to a wheelchair!! Injuries I sustained are to my cocxxcyc, left hip and lower back radiating now upwards to just below chest level,least the burning sensation is!! I have since been in chronic constant pain,Im on a cocktail of medication,aswell as recently having been diagnosed with arthitic condition in my neck, my left shoulder/arm/hand also very painful,sometimes swell up,often goes totally numb n lifeless aswell as being useless practically it goes paralyzed and takes a long long time to get back to even near remotley normal,the said hand also goes totally iceily cold,frozen even,fingers will claw and close up as if I was gonna make a fist!! Legs and feet are numb yet I feel pain in them sometimes well my knees actually my feet are more or less constantly frozen n iceily cold,can never actually get them warmed up properly! Cant feel anything else below my knees anymore other than what Ive already explained! My whole condition has and is continuing to deteriorate badly! My hip Ive had 3 lots of injections etc... 1 was done under g.a. in theatre others I was awake for,horrendous! Consultant said nothing more he can do for my hip apart from give me a replacement when Im much older,Im only 37!!! My spine,well very very painful,stiff etc.... I cant lie flat on my back or my front since attack happened,to be honest I cant lie on my front point blank!! Im proped up to the hills with pillows at home! Cant do anything like I could before, due to pain n severe tierdness or rather exshaustion as I havent slept properly since it happened. Lucky if I manage couple hours a night due to pain n discomfort, need help with everything n I mean everything! I contuniously sweat profusly from chest upwards,nowhere else?! Always constantly hot and flushed even in deep winter!! Also my bladder control has deteriorated badly in these last months! Got practically no control n not much sensation least not proper sensation anyway! Im finally going into hospital next week to have faecet joints injections after waiting well over 12months to have it done,despite being told it was urgent! Pain clinic been avoiding n not returning my calls. GP wants me to be seen n assessed by a neurologist n a specialist spinal surgeon and has also refered me to be seen urgently by orthopaedic team re my shoulder/neck/arm/hand. But you guessed it Im still waiting. Had mri on hip n lower spine ,the hip consultant was more interested in my hip but said spine didnt look too bad!!!!!!!! WTF? Sorry !! Then in same breath admitted he didnt deal with spines as not his speciality!! I recieve full rate DLA, after having to fight like everything else, my GP arranged for me to have my own wheelchair from the wheelchair services,apart from that getting no support or help from nowhere or anyone apart from GP. Not really getting any sense from nowhere as to what exactly is wrong with me n what the problem is! Consultant did say something bout spinal nerve damage,but nothing else! So Im totally lost,scared and confused!!! Im a mum of 4, all be it they are now teenagers but my youngest herself is disabled as she has cerebral palsy hemiplegia amongst other things!!! So you can imagine how hard n difficult things are! Sorry for such a long post but I think Ive covered everything lol and I apologize here n now if Im not meant to be here,if I dont fit your membership criteria but I didnt know where else to go sorry I feel like a square peg trying to fit in a round hole!! Any advice, suggestions etc.... etc.... most gratefully recieved, thank you xxx Welsh

[gzarnke]

Dear Welsh,

You are of course welcome here.  What a horrible story and situation!  I am guessing you are in the UK, I am in the U.S.
I am wondering where you were treated at your time of injury and who your Dr. was at that time.

If you are in the states I can try and get help for you.  It is so hard when you are in pain or in the middle of the situation to do everything that it requires to get help.  I have helped others over here get support from SSI and so forth so let me know if I can help.

It sure sounds like a sci to me but Gary would know more then me, I am sure he will be getting back to you.

gzarnke

[gzarnke]

Welsh,

Of course you are scared, but we are here for you   and we will do what we can.  Just please let us know where you are it will help us to help you.

gzarnke

[Gary Anderson]

Welsh

The cocyx is the small bone at the very base of the spine, without being rude, just at the top of your ass.

From the info you give, it sounds to me like you are suffering from what I myself suffer from and that is NOT an SCI but a nerve injury. That can be just as disabling as SCI. The only difference is your spinal cord is intact - whereas some of the guys/gals on here have actually suffered damage to their cords - you and I have not but the injuries are just as restricting/disabling.

All I can advise is that you return to your doctor and ask him to investigate the nerve issue. You have all my sympathy. My nerve injury causes pain to wash over me like waves starting from my feet and washing over my knees.

Hope this helps you.

[welsh]

Hi Gzarnke,thanks for your reply hun,and offer of help,but yes I am in the UK hun, Im in North Wales in fact!

Gary Anderson, thank you also for your reply too mate. By the way lol I know only too well where me cocyx is mate lol (sorry)
I know its not an SCI injury and that is why I thought I wouldnt be welcome here and that Id yet again come to the wrong place for advice etc... etc...My gp is very supporting n understanding but apparently n dont ask me why as it doesnt make sense to me but even though she wants me refered asap to see both a neurologist n a spinal specialist the referal has to be made by the pain consultant that Im under!! Only problem there is they mess you around so much that you hardly get seen by them,like your supposed to! I should have been seen many times last year but Ive had to wait till next week,thats unless they cancel yet again!!!!! Anyway,since they last saw me my condition has deteriorated severley! And I MEAN severely! But unfortunatley I cant seem to get anywhere....Its so damn frustrating to say the least!!!!!
Gary mate would you mind chatting some more with me about this n what its been like for you etc... n how you`ve adapted to it n coped??? I will understand if you decline mate,and sorry for asking but are you confined to a wheelchair? And have you lost the use of a hand/arm or whatever like I have??? Sorry for all the questions,but I just feel so alone n in the dark about all this...... Thanks welsh x

[cate]

Hi Welsh  You  are certainly going through it, I do hope B-----d that did all this to you got his, and you got some justice.   I am ab, it is my daughter that has sci injury, she has also a lot of nerve damage, and your symptons sound very similar, but her generates from the neck c5-6.
I am sorry that you are being hacked around, and think you need to get onto your PCT also MP you need somebody fighting your corner besides yourself and your gp.  The NH is there help you not hinder and the longer things go on the more you will deteiorate.
Anyway welcome to the site,  we are here to offer any support we can.
I think   a neurolgiest is  needed to be seen asap,   Keep us informed
Cate

[welsh]

Thanks Cate,for your reply much appriciated as is your support too. Pardon me for being thick or stupid lol but what is PCT hun sorry??? Im not quiet up to speed with the relevant abbreviations sorry cate . Im sorry to hear about you daughter Cate n I wish her all the best hun.
I somehow feel a bit of a cheat or a fraud if you like for being here and for complaining when I know and understand that there are others who are much worse off than me,and that in one way Im deemed to be lucky!Even though I can assure you I dont see myself as being lucky far from it!!! I feel like such an outsider who doesnt fit in anywhere as I don`t quiet tick the box or meet the criteria if you like!!!! I have never felt so alone and ostresiced as I do now!! And being a wheelchair user myself has been an eye opener n a half as to such a cruel discriminating world we live in!!!!! Im losing all the fight I ever had in me as for getting the help and diagnosis I need in order to recieve the right treatment,the more my condition deteriorates,the less fight I have in me! Im just a number to the nhs n another drain on their resources,
no-one cares in the way they used to,its as if your injured so what,heres your wheelchair,now get on with it!!!!!!!! Im sorry but I had to let it out............. again I apologize.Thanks Cate and everyone else too.............. welsh

[gzarnke]

Of Course you belong here Welsh, where else would you belong?  this if for anyone who has a situation such as yours, nerve damage is nerve damage no matter if it is a sci or not.

gzarnke

[cate]

Hi Welsh.  You are in the right place  to talk to people and I am sure you will receive some info that may help you.. Well I think you must try  Social Services as you need help.  first I think you  should have occupation therapist, to access your needs and where you go for help. You GP can help you with this.  PCT. is in charge of the  medical practice in your area. i.e. Doctors clinics etc. they are also the ones who say who can have what drugs. etc. you know the postal code lottery. once again your GP can give you their address  I would also get in touch with disc, which is local disable ass. they should also be able to help you.  Also on this site you will see     messages from Paul Breen, he is a solicitor who can help with all sorts of things. down to sue the chap that did this to you,  to finding out what you are entitled to.   There is help out there but you do have to search for it.  As you have the computer go back into the forum and read peoples stories you may find help amonst that.  If there is anything that I can help you with please ask.
Cate
nb pct is primary meddical care.

[Andy]

Hi Welsh,

welcome along, not sure why your account has gone to 'guest' status, if you need it reinstating please ask if you need any help

cheers

Andy

[welsh]

Thanks gzarnke n you too cate. Also thank you too Andy Ive just re-registered again Andy so I hope Ive got it sorted thanks mate. Only a few more days guys till I go to hospital n Im basically brickin` it to put it mildly  . I rang social services today out of desperation more than anything maybe they`ll be able to help me get things moving, who knows? Anyway they gonna send a social worker and an occupational therapist here to assess me n my needs as a matter of urgency! We`ll see lol, I`ll keep you all posted as to what happens with them n about how I got on on friday. Hopefully fingers n everything else crossed x I`ll finally make head way in getting the right medical help that I need and a proper diagnoses too...... Thanks for all your support and advice,it really means a lot to me. Cya all soon Welsh xxxx

[Gary Anderson]

Hi Welsh

I could have sworn that I replied to this message - I know I definitely typed one but perhaps not! Old age does not come itself!

Gary mate would you mind chatting some more with me about this n what its been like for you etc... n how you`ve adapted to it n coped??? I will understand if you decline mate,and sorry for asking but are you confined to a wheelchair? And have you lost the use of a hand/arm or whatever like I have???

I certainly would not mind talking to you about what happened to me. How I have adapted and coped makes me laugh - I don't think I have! Ask the folks who bolster me when it all goes belly up!

I was involved in a train accident 19 yeras ago and damged the cauda equina nerve - the horse's tail of nerves as they leave the bottom of the spine. At first I was told I would never walk again but I did not accept that and went on to fight tooth and nail to walk. Then, 2 years ago I suffered another debilitating accident which left me with lifethreatening head injuries amongst other things. I almost had my arm amputated.

The head injuries are the worst. The part of my brain dealing with reasoning was damaged - so I am perhaps in a more emotive state than most. I tend to take things to heart more than others. I cannot remember things and my attention to detail is affected. Other than that - I am OK.

I am not confined to a wheelchair, I walk with 2 sticks. However, there are times when I have been known to use one when my legs give out.

I have not totally lost the use of my arm. It was badly injured in my accident 2 years ago and there is very little movement in it. I reckon it is pretty much next door to useless.

Other than that, I am tickety boo (most of the time!)

Best of luck with your medical visits.

[welsh]

Thanks Gary for your reply n Im sorry to hear about everything you`ve been through. I can emphathise with you about your arm being next door to useless Ive got it`s partner here I reckon lol  , as mine tends to gravitate between numb n useless to practically paralyzed n useless! No in between to be had,only thing that stays the same is the fact that my hand is freezing no matter what! Thats exactly how my feet go too almost permamently now,and my legs go numb too.And Ive got no feeling in my legs below the knees. Never mind friday will soon be here n hope to god they start sorting me out good n proper once n for all! Or at least start the ball rolling anyway. I`ll keep you posted as to how I get on as soon as Im able to get back online. Thanks again folks cheerio take care xx xx Welsh

[cate]

Hi Welsh.  you have not been on the site, How did things go with your hospital visit, and have you got any further with help and assistance
Lets us know how things are going, we may be able to  throw  so9me ideas your way.
Cate.

[JaneNL]

I'm so sorry to hear about what you went through! How horrible for you and I'm so glad that you are actively seeking ways to get well. There are a lot of good resources out there on spinal injuries, and I would suggest asking a Yahoo question if you haven't already. Best of luck and I hope we hear how things go!

Jane

[welsh]

Ok Im back lol First off I apologize in taking so long in getting back to you all, but I really haven`t been myself of late due to agonizin pain, as my gp decided yet again to change one of my meds and suprise suprise they did nothing for me except make my pain a hell of a lot worse! Anyway Im back on my old meds for now. As for my hospital visit,well what can I say? I turned up waited etc.... only to be told by the consultant that she wouldnt do the facaet injections on me that day a) because she hadnt seen me for 12months, never mind the fact that this procudure was cancelled 3times end of last year, and that they`ve been ignoring my calls!!!! n b) cause she reckoned my condition had deteriorated too much,yet remaind a bit of a mystery to her in terms of my "not actually fitting into 1 specific box"!! Charming!!! And as I apparently puzzled her she would see me in clinic in approx 3wks, which in fact I actually go or rather supposed to go see her on the 3rd July. I was not nor am I still a very happy bunny cause of all that! And Im no better off now than I was then!!! Also I have been assessed by social services and the occupational therapist and they are installing and giving me all sorts of aids etc... to help me in n around the house. Ideally I should be in an adapted house or bungalow but easier said than done lol. The OT n her boss are coming on the 1st July again to do a detailed inspection of the stairs as they are horrendous, and not gonna be easy to fit a stairlift to. In the meantime Ive been looking into private neurology and spinal disorder consultants, and Ive finally managed to track down both! Now all I need to do is go back to my gp and get a refferal and sort out my fainances so at least I get an inital consultation with them both,as theres no way on this earth I can ever afford to go private, even going to see both this one time is gonna be a huge struggle n scarifice but one Im more than willing to do believe you me as goodness knows what else I can do??? All advice etc.... greatly recieved, n thank you all for being there n supporting me guys it really means a lot to me cya all soon xxxxxxxxx Welsh ps sorry for long post 

[cate]

Hi Welsh. I am sorry to hear that you did not get very far.  Now you are able to vocalize well.  So   gather all the details together  send on t0 the PCT(primary care trust). they sort out all the doctors etc and financial side of things. also your O,T, should be able to point you in the right direction.  Send copy to the hospital where all your appointments have been cancelled/postponed or whatever. copy to you MP.  Start bombarding  people, you may not feel like it, but it is your due, maybe you should try a different hospital need to talk to your GP regarding this but you can choose.  Make them see you need help now and let them know what pain you are suffering. If you are a mystery to the consultant, ,tell her to recomment you on to somebody who can help, and it is urgent.  Also log any calls that you make date time and who you spoke to, so that you can give a detailed account  how they have not been up and running and sorting you out.
Makes me want to spit, that will not help you.
Do also try and Talk to the lawyer on this site. Paul Breen, he will let you know what help you can get and how to go about it, Worth a try If you cannot find him on this site, try Apparelyzed, know he went on there also.
Keep talking to us you may get some words of wisdom here, and not just my rant
Cate

[welsh]

Many thanks Cate,appriciated hun as always. I feel I only ever moan everytime I post here,people will be getting fed up of me soon if not already lol.As for another hospital hun its a no go Im afraid as Im being seen at the only hospital we got here!!! And anything out of county etc... has to be oked by the powers that be down in Cardiff at the Welsh Assembly I pressume?? So its not that easy to be sent elsewhere even though that the nhs trust I come under have no neurologist/neurosurgeons or any orthopaedic spinal specialists of their own!!!! So basically your cream-crackered if you happen to want to see any of those, which in fact I need to see them both!!! I mean it really is unbelieveable that a trust such as ours dont have such consultants,to start with!!! And this is defineteley something Im going to write about not only to the Chief of the trust but to my local mp and who ever else I can think of!! Surely if they cant provide the service themselves then it shoulnt have to be a question of funding as to whether or not you get refered elsewhere for this service,they should already have the means and arrangements already in place,so that people like me who really need to be seen and treated by such consultants can do so without either being fobbed off,or more importantly have vital treatment withheld!! I reckon thats an infringement of my basic human rights!! I reckon the government should worry more about the state of the nhs and less about many of the stupid idiotic things they come up with!! And most definetley sort their own flammin country out before even thinking about anybody elses!!!!!!!!! Welsh

[gzarnke]

Hi welsh,

I'm with cate contact Paul Breen asap.  And don't worry about talking to us about what is going on in your life good or bad that is why we are here!

I go up and down moaning and groaning and then happy, the good days get more and more as time goes on and that will happen for you too.

hang in there,

gzarnke

[cate]

Hi Welsh
~Well it would not be convenient, but I am sure they could send you to some where like the RHS at Stanmore, or Stoke MKandeville, and I beleive there is a good one at Oswetry.  I know  we live in cambridshire, and we do have a good teachingt hospital at Cambridge, Addenjbrooke, but they sent my daughter to Stanmore, and I know the people in the wards came from all over the UK,  I assume they were referred.   may daughters  spinal op was do9n at Stanmore, and that went wejj,   they also did a knee op, that did not go good, but had already been messed up by our local  hospital.
She kepts telling them not ok, eventually they agreed, went in and found  all the screws had come out, so they did it again, still not good,.  So she was recommended to another hospital  in Hertfordshire,   and they did  a good job, on what was left with the knee.  So I think you must just keep going at it, and  ask around as to who would be suitable for you.   Npne of this done quickly,  the local hospital realised that they had messed her knee up, but also realised something else was going on, so sent her to Stanmore, they did the scans, and said forget about the knee at present we need to op on your neck immediately, otherwise you will be in a wheelchair  No guarantee that will not happen but this needs sorting urgently,   we think it  was damage from a car accident that had not been picked up, and  happened about 8 years oir so earlier, so has left permnanent nerve damage, she has BSS, which is neurology, had never heard of it before but was caused by the trauma.   So it  is ongoing the problems, but she walks with crutches,    what us lay people do not seem to think about is the pain etc that goes with it.  Of course a lot more things go on,  But you need to  hope that somebody is working with you for you.
You can moan on here as much as you like, better out than in,
Cate

[welsh]

HI Everyone Just thought Id update you all to what is currently happening and share my good news with you all lol. Well Im finally officially on the waiting list to be seen at the ortho hospital in Gobowen Oswestry!!! Down side is theres currently a 22 week waiting time but I honestly dont care as Im finally on the list! YIPPEE lol, also its been strongly advised that I get also get seen by a neurosurgeon as Ive been told by the specialist I saw with my arm that my nerves are basically shot and some now seem to be hypersensitive,this specialist suggested I start on amitryptiline(?spelling?) but as yet my gp has not prescribed them!! By the way Im seeing the specialist on the nhs, and did not get the funding hazzle my gp had been going on about! Im also under the care of a clinical psychologist now too who has diagnosed me with Post Traumatic Stress Disorder or PTSD for short and whos himself appalled by the lack of appropiate medical care Ive recieved so far and has offered to help as much as possible re my getting the appropriate care etc...First thing he`s doing is setting up a 3 way meeting between him, myself and my pain consultant, in order to start getting my medical care established properly! Anyway we`ll see, all I know at the moment is my physical condition is still deteriorating badly, and I hope that things start changing for the better for me finally now, and more importantly that this psychologist is true to his words and not just saying things he hopes I want to hear as I have had enough of empty promises and such like, I need action not empty words. Anyway I hope your all fairing as best as possible and thank you all for all your advice and contuined support, very much appriciated everyone, all the best Love Demi xx xx

[gzarnke]

Oh I am very happy to hear that you are getting help and are on the waiting list.  It takes time but I am sure that things will start to turn around for now.

Gzarnke

[Gary Anderson]

Demi

Great news! I am so pleased you are being attended to.
Sorry to hear about the PTSD - you have all my sympathy.
I suffer from a TBI (Traumatic Brain Injury) as the result of an accident 2 yrs
ago and the symptoms are hellish. Everything from severe depression, you name
it and I get it. It is getting people to understand that is the hard part. They just
don't understand. Mines affected the emotional part of my brain - so my reactions
are not like normal humans. My emotions are shot to pieces. My powers of reasoning are badly out of sync.

I look forward to hear how you fare with your drs. I suffer badly from nerve pain having cauda equina syndrome and in the past when pills have been changed I have suffered horrendous side effects including growing facial hair (not a problem I just shave - but more than normal) to actually developing boobs. Eat your heart our Jordan!!!

Good luck.

[cate]

Demi so pleased to hear things are moving for you, and keep pressuring the authorities, do not slip thro and just wait, We are happy to hear your moaning etc, that is what the support is here for, we are long distance, but you can chat  and get things that are bugging you off your chest. It helps,, and you know we are here to support you. keep us informed.
Cate

[welsh]

Gzarnke, Gary and Cate thank you all very much for your kind words and contuined support, really means a lot to me,thanks.

Gary mate you made me chuckle just then with quip `bout Jordan lol, but your right though mate no-one knows what its like to go through such things or even understand what its like living with the aftermath day by day and with all the pain that goes with it, unless theyve actually been there themselves!! And sometimes the side effects of medications can be just as bad if not worse at times then the conditions we are living with! Being disabled and confined to a wheelchair really opens up ones eyes to all the predujice and ignorance of the world around us.

Anyway enough of me lol I will keep you all posted as to what happens etc.... so like the saying goes watch this space lol
Love n Best Wishes Everyone  Demi xx xx xx