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Old 06-04-2007, 03:07 AM   #1
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ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

I was wondering if anyone from uk could share with me their feelings about treatment for spinal injuries on nhs. To cut a long story short i feel we don't get a good deal on the nhs, i feel we are classed as a second rate citizen if we can't afford to go private. I know we are lucky in one respect to have the nhs but i'm sick and tired of the waiting for appointments, treatment etc because of the system. My surgery in 2005 was 7 months waiting because i couldn't afford to pay private, i am not in bupa or any other scheme because i can't afford to pay the premiums, my initial consultation at the LGI said i needed surgery for a C5/6 prolapse and was supposedly needed doing urgently, if i could have paid privately i could have had it done within days, but because i couldn't pay i had to go on waiting list!!! my god what has this country come to, the op would have been performed by that same surgeon for goodness sake, i have been left suffering from rsd to various parts of my body and 2 years down the line after waiting yet again for appointments to see pm who i started seeing beginning this year ( i must say he is very good) i now need lum epi for problems to my lower spine. I really feel that all this waiting just makes you worse, and my argument is if your bad enough to require surgery, treatment in the first place then why are you kept waiting for months on end to get onto next level of treatment? It just seams beyond all sense to me. I'm 37, married and a mother, my life seams to be kept on hold at the moment, i don't want to sound ungrateful but i have the job centres on my back, i can't work as i am, i am not in receipt of any benefits, my hubbie works full time, and i'm not bringing in any wages, so what am i meant to do. As a young person surely like many others we should be given priority (i know i'm gonna hurt some peoples feeling) over our elder generation when it comes to needing hospital treatment so we can try and get our lives back on track, recoup some quality of life in our sibling year and pay monies into the system by being able to work again!!! I'm having a gripe i know but i'm sure i'm not the only one who thinks on this wave length.

 
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Old 07-02-2007, 02:56 PM   #2
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi cant beleive no one else has answered you from the uk. i totally agree with you. i eas an emergency for c5/6 disk prolapse on spinal chord and waited from november untill may for an emergency op. i enquired at how much it would cost at bupa £9000 which i didnt have at the time and yes it could be done within a week by the same surgeon. i have waited 5 months for pain management had my first nerve block in my head the dr wanted it followed up 4 weeks later and I have just been told he cant see me for nine weeks, wat was the point of the first one then, so i requested i see him in outpatients instead of clinic and that is a five month wait!!!! for 3 years i have been in pain still am with no end to it under the nhs, I waited 5 months for nerve conduction tests which were today, I found them so painful I couldnt do them. so back on the waiting list again to have them under sedation.....giving up now....dont know what the future holds.... but cannot stand the waiting anymore so what d you do.....suffer in silence.....good old nhs....so now you can see why i agree with you. i have had to fight all the way....it took 9 months to get diagnosed....37 week wait for an mri scan, i paid privately for my last one as i could not bear the wait.it does nothing for morale.....what have i been paying into for thirty years, I saw a pshycologist whom specialises in pain. her report shows that i have chronic pain and mild depression caused by the pain and worries that if left my symptoms could get significantly worse.....ha ha ha!!!! she obviously doesnt use the nhs...so yes i do agree with you.

 
Old 07-03-2007, 03:18 AM   #3
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

Pauline
Hi, i hope you dont mind me replying, boy you just sound exactly the same as me, i now see a pm specialist, i saw him 3rd Jan this year, believe it or not i only waited 3 weeks on nhs, a miracle i know but i don't know what to say, they are very good, he initially saw me for 1 1/2 hours! did rigorous tests on me, he seamed quite optimistic, he knows his stuff, i think, he said i have complex regional pain syndrome, or reflex sympathetic dystrophy as it is also known as, i was quite blank as i hadnt a clue what he was on about, i have been taking lyrica (pregabalin) since Jan he put me on and amitriptylene, i have had a lumbar epidural 2 weeks ago, as he did an mri on me and guess what i only waited 3 weeks for that also, i have been lucky for once, it showed herniated disc in lumbar region and degenerative discs in other parts, i'm only 37, it seams my back is knackered! i still think the nhs is crap to put it mildly and money does talk. This crps or rsd is quite a nasty thing, you should read up on it link onto the thread reflex sympathetic dystrophy you will be surprised, i have been on it and communicate with a lady from USA who has the same thing, have the doc's ever talked about this condition with you it sounds like you may have it also, sorry, dont want to shock you but the symptoms are just so uncannily the same as i suffer, pain in r arm, neck, face, down r side mainly of back, lower back into r leg mainly, although when it's bad it's bad, running into all four extremeties. Where is your pain, do you get numbness, swellings, my pain is like cut glass running down my legs and arm, it's hard to describe the feeling, it makes you go crazy and gets you down. I hope you havent got this condition but it sure sounds like it to me, like me it's probably nerve damage having been left waiting so long for operation. Has it altered your life, quality of life, do you suffer with pain in your arm, neck or anywhere else, what meds are you on, etc? Don't want to intrude but it's nice to here from someone here in Uk who is like me, these sites are mainly American and whilst i get good advise and have made some really good pals it would be good to communicate just to compare doc's, meds, treatments, etc with a UK resident. I look forward to hearing from you if you wish to, you can read my threads if you go on advanced search and put in tkb. Good luck and best wishes tkb

 
Old 07-03-2007, 02:46 PM   #4
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi tkb, no I dont mind you replying at all, its ia nice to talk to people from uk as i beleive that the american midical system is very different to our piece of crap.I have been diagnosed with chronic pain syndrome even though i beleive there are different chronic pain syndromes if that makes sense. my pain is down my right arm and in to my head.... I did have a nerve block in my head on 7th june and is did help...was painfree in the head but only for about 10-14 days but pm wanted in done again in 4 weeks but thay cant fit me in untill 9 weeks....great. i do not take meds as i havent been given anything,,,,so i just take nurofen when i can no longer cope with the pain although i have co codamol my gp gave me they make me sick if i take them more than once a day. my hip pain is nerve damage where bone was taken. my pm guy even suggested the plate in my neck may be touching nerves... great eh. you ask about the effect on my life,,,,easier to say what has it not affected....i cant mow my lawn, cant carry anything heavy up the garden, my house is situated on a hill with 150ft front garden to it, I have horses, i dont ride, i cant gat my feed and bedding up to my stables any more have to ask people to do it for me, i have lost my job which was the cause of my problems due to an accident...they have not got rid of me but am no longer to do the job as it was physically demanding for a racecourse although i cannot tell you which one as have legal case with them. I have now sold my house and thinking of moving to france...better medical system...no waiting lists cheaper property...hey i can pay my debts that i have run up off buy a property with more than i have here and still have money in the bank....i have not worked since two weeks after the accident...i do get incapacity benefit and industrial accident benefit which i had to fight to keep...just been to appeal and won!!!! I have not had a good nights sleep since my op,... i feel absolutly knackered in the mornings... have seen a pshycologist who specialises in chronic pain....for my case with work.... came back with mildly depressed but in pain and would detieriate if left and longer in pain!!!! so gp gave me a mild anti depressant today but worried about taking them really...so all in all i have lost almost everything...my job, my home because i cant afford it anylonger, my hobbies, gardening and horses although i do intend to ride, although gp said not to...i have to have something in life. well there you go ...my story so far...feel free to ask me anything, i really dont mind, and like you i feel the nhs has let me down with all the waiting...i do feel it has added to my problems....so frustrating.....hey...when we gonna get a summer....that might help the frame of mind....its non stop rain so far ...is it bad up there....sorry i am surrey sussex kent borders.....been thundering since 5pm today and still going now nearly ten great... regards pauline

 
Old 07-04-2007, 02:45 AM   #5
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

Pauline
thanks for replying, it is good to speak to someone here on the same soil. Well the weather here is horrendous, cool, showery, summer really hasnt started has it, but we were spoilt last year i suppose. I also havent been able to work, my employer at the time pensioned me off! at 35 year old at the time! I feel 97 not 37, i get DLA and absolutely nothing else, i cant get inc benefit, dole or anything else as my hubbie works full time, i tell you your doing the right thing hoping to move to France, what is there here, absolutely bloody nothing, like you i've paid into the system although my job up to this starting which i believe was the onset of my problems was part time so i hadnt paid enough NI for the previous 3 years but i worked full time up till then, my hubbie has always worked full time, we have more than paid into the system over the years, and i argue how the hell can these young bit of kids get everything when they havent paid a damn penny into it, beats me its all bent if you ask me. Which hospital did you have your op at?, mine was LGI supposed to be one of the best in UK for neuro surgery (yeh right!) if you have the reddies i guess but like me i didn't. I had an anterior cervical discectomy did you have that? I didnt realise it was gonna be so painful afterwards they really played it down, i was in for 4 days, sent home still feeling sick and in pain but they needed the bed, nice eh, that's right kick us out and down whilst your still down. I tried taking my former employer to court through my union at the time as i know i felt the prolapse in my neck go whilst lifting at work, but 2 years down the line my solicitors threw it out as it was gonna be hard to prove, i didnt put it in accident book, big mistake i know but when it happened i didnt go down like a ton of bricks or anything it was like hitting your funny bone but not that funny at the time, it went as quickly as it came was only about 3 days later i started with the horendous pain in my neck, r shoulder and r arm, by the time i needed my op it was going into my other arm and my knees were going red hot as well, legs feeling funny. Well thats the story of my life, nothing but bad luck for us, we pay our way, like you own our house, dont live off the state and you get penalised all the way, we should be council dwellers living off the state, not working that way we would get everything, sorry having a gripe i know but it really p****s me off, oh and to boot my relative just won lottery 2 weeks ago over million and half but that wont change us we'll never see any of it, money goes to money they were already well off. You say you dont meds for nerve pain, has it never been suggested to you or do you simply not want them, i am coming off the lyrica as it hasnt worked for me, but the amitriptylene does help me to sleep at night, well most nights, but i do still wake up at times in pain and discomfort. I'm not a lover of antidepressants either but i took diazepam for 18 months till pm took me off it in Jan and he put me on the ami, that did help my pain at times as it helped the muscle spams in my shoulder and arm. My life has been turned upside down with this condition, i cant lift carry, reach, bend, driving is difficult at times, without it flaring it all up, if i over do it i suffer later, household chores are difficult, vaccing is done by my hubbie, i feel useless, literally like ive had my r arm chopped off, the things you take for granted are such an up hill struggle, i cant do any hobbies like belly dancing i used to do, bike riding, walking with my 11 year old son, in fact just about anything physically challenging is impossible, (that as well!) is difficult at times. I wonder to myself if i will ever get any better or if this is it for me, and how many others out there suffer like we do, i dont know anyone else here with this condition do you. Right then Pauline, thanks again for replying and listening to my gripes, feel free to gripe to me it helps. take care, best wishes to you tkb (trace)

 
Old 07-04-2007, 03:10 PM   #6
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi trace, well I do feel the same if its any consolation.Also when I had my accident I carried on working for three weeks....gp diagnosed me with whiplash...like you I knew when I did it and how but only has an ache in my mect and as time went on so it progressed but it took consultant nine months to diagnose me as I had no neurological symptoms so he didnt beleive anything was wrong. I had x-rays and then a ct scan at which point he said there was nothing wrong and when i insisted I was in pain he did an mri and that showed c5/6 on my spinal chord. yes I did have anterior cervical discectomy but I didnt suffer in hospital....I was operated on tuesday morning and out Thursday morning once I had proven I could eat... but I was up and about an hour after coming out of recovery although had to wear a soft collar for 9 weeks and couldnt drive for 12....I had no pain and took no pain meds when I came home. i was a little sore at incision area and sore in my neck but nothing major, that was last may and by september I was telling him how much pain I was in and now worse than before my op....he actually told me to go home and get on with my life at one point, but then he is not renown for his bed side manner.....and he hasnt got one either but is a highly respected spinal surgeon, I had my op at east surrey hospital redhill uggghhhh...so I was determined not so stay in there I hate the place....it doesnt help that both my parents were seriously ill in there and it is rife with mrsa mssa and everything else....i took bugs away spray with me and myself and my friend cleaned everything we could....taps. bed. table,tv controls the lot....I was fortunate that I got a room to myself...I think maybe due to mrsa as this surgery is high infection risk.
I have not been offered any thing for my pain etc...pm just did occipital nerve block...yes it helped was blimin painfull though and felt like i had been kicked in the head by my horse for a couple of days but has now all but worn off. gp gave me citalopram anti depressants yesterday, just a low dose, but couldnt take as yet as she told me not to drive for 24hours at first and I had a solicitors apptmt today. bit wary dont want to feel fuzzy headed especially around horses...also cant have a drink on them,,,boo hoo...not that i do much but its nice to now and again. I do wonder if this is my life...I did this at the age of 44 and now 47 life has been at a standstill in that time with just pain and lack of sleep but i will not give in...i walk my dogs most days and have from the day i came out of hospital...I dont seen to have too much problem with my legs yet!!!! the consultants always look for muscle wasting and strength....well I still do my horses etc so dont have any of that ...never have done. have you ever had nerve conduction tests???? fine if you want torture...i couldnt go through with them....started but that was it...they are suggesting sedation for them...probably another six months waiting and i will be in france!!!!!what I want to know is wasnt the op enough to go through without being injected in the head with a horse needle and then torturing me with an electric current....cant deal with all the further pain. i am sure they are thinking lets give her the worst treatment we can the maybe she will bugger off and leave us alone!! oh well chin up and all that I am sure there are many people suffering worse...at least we have a life i guess.
best wishes pauline

 
Old 07-04-2007, 03:11 PM   #7
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

oh and you are not missing much with industrial accident benefit I only gat £25 a week but it pays a bill!!!!!

 
Old 07-05-2007, 02:35 AM   #8
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi Pauline
What amazes me is how different our treatments have been, yet for the same problem...I have never heard of citalopram, i wonder just how many options there are out there for antidepressants...good on you carrying on as usual with your horses, it sounds like they mean everything to you..i've not heard of or had any nerve conductor tests either, there you go again just shows the difference...you did pretty well to get out of hospital quickly but from the sounds of it i think i would have as well, the Leeds General Infirmary has a brand new part for neuro surgery and i was furtunate to be in it if you know what i mean, it was very futuristic, clean, a bit intimidating really not being in the medical profession as all the new gadgets etc were a bit harey scarey! My consultant had an horendous bed side manner, in fact he didnt have one at all unlike the pm i see at my local hospital who is the exact opposite, he is lovely, listens and seems to understand my pain. You are lucky your pain is more localised than mine, do you think this surgery the perform is a faily new procedure as it seems everyone has alot of pain in the months following, i believe they do damage to nerves whilst operating yet they are supposed to take away the nerve compression! i dont know what to think, i really do wish i never had the bloody op done now, i really do regret it, perhaps i might have not been suffering like i do if i had refrained. Thinking back to when i initially went to see the consultant, we paid privately for that £160 to be precise for a 20 mins consultation otherwise i would have had to wait anything up to 16 weeks on the nhs, i think he saw pound signs rather than concentrating on the job if you know what i mean, he assumed we had money or medical insurance as he said to us, "i pressume you have medical insurance" i mean what bloody difference does it make, it should make no difference, they were quick to take my money i see me but when we said no we havent he just seamed to deflate, he didnt even have my scans to look at, he said straight away bla bla bla you need surgery, that was it, and the rest, **** and bull pay you get it done in days, dont pay you wait on the nhs list anything up to 9 months. It really gets to you doesnt it. Anyway must'nt dwell on the past even though it haunts me, should consentrate on now. Do you have any family Pauline to help you, if so are they grown up? my son is only 11 now and its been pretty tough on him and me, he's had to grow up pretty fast helping mum etc when it should be the other way round, i know i'm still here and that's what counts but quality of life, what i have of it is poor at times. I cant believe how our lives have been dramatically altered, from being a normal functioning family to being disfunctional, everythings been turned upside down. Do you find driving difficult? the restriction of neck movement is a pain in itself, reversing is quite a challenge especially in supermarket carparks, i have a blue badge, do you? Its interesting you say you had to wear a soft collar after surgery for a few weeks, myself and other fellow patients i met in there didnt have to in fact nothing was ever mentioned about it to us, although i did wear one initially a while after my prolapse, my GP who is crap, he is late 60's should retire, he's damn useless, told the physio i should wear one. I didn't like it of course but who would relish the thought of wearing one of those contraptions as it hurt the top of my spine, don't know why they are supposed to be the experts. I'm intrigued to know how you get industrial inj benefit, i'm not being nosey but i can't get a blinking thing, only DLA as i mentioned b4 and then that's not means tested and nothing to do with benefits, although i get NI credits, WOW, that's not money in the bank though and i even had to appeal for that, i was sent for a medical with DSS just a few weeks after my op as i had applied for incapacity benefit and the stupid woman doc i saw for precisely 4 mins something seconds as recorded on the sheet refused, yes she refused to do a physical medical on me so soon after spinal surgery, my hubbie with me wouldnt have let her touch me anyway, put down that i had problems physically, what a tosser, and that i showed no obvious signs of discomfort during the so called assessment, even though i was perched on the edge of the seat. You see even they are puppets employed, i could do that job myself and i'm not a dr! Oh and according to her I was the one who refused the medical, well you can imaging the letter we sent to the appeal, which was allowed on the grounds of substantial risk the physical health if found capable of work, i mean if someone that's never met me and doesnt know any background info in me how can they possibly make a decision, the mind boggles..the letter i got yesterday to say i am still entitled to Ni credits hasnt even requested any details from me, so you tell me how the systems in this country work, i don't blame you for buggering off to France, i tell you if we could afford we would do the same. Well enough for now, it will be like reading war and peace for you. Take care and best wishes to you, from wet, cold, misserable Yorkshire, ta ta for now, trace.

 
Old 07-05-2007, 11:14 AM   #9
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi trace,
chin up girl, we could be in wheel chairs!!!!! i had to have my op as i could have been paralised so no option..if there was I would not have had it either. driving,yes, well, like you reversing is embarrasing, cannot look over shoulder, dont do supermarkets, have shopping delivered,cant carry it up the garden!!!! if I meed tp i reverse in to the spave rather than out, just find it slightly easier....and no i dont have a blue badge...wouldnt know how to get one...like most things in this country its hidden from you, I knew nothing about benefits, never had to, so finding out was a fight. A barrister told me about industrial injuries and that I should be getting it...so I applied and got it, you have to be over 16% disabled in their eyes, the usual medical....I was 18% but after 6months they took it away so I appealed and won it back untill jan 2009. I beleive your emplyer has to agree you had an accident at work though. Incapacity benefit was easier I just had to dend my medical certs, from gp to them when I applied and after nine months they said I no longer had to send them and they will review situation in jan 08. I beleive these are still payable to me in France. Why could you not afford to go there.....property is far cheaper...release colateral etc and hubbie find some work...become self sufficient. guess it depends what you want as well....I just beleive I can have what I want property wise there with money in the bank maybe start a b&b or something and have better health care.
No I dont have any family, my father dies in 2000 with alzeihmers and my mother in 2002 with heart attack on the day we were moving to the west country!!! Feel a bit cheated as they were only 73 & 74 years old but I guess thats life but doesnt stop you missing them and no you dont get used to it you just learn to deal with it I think. I was adopted and do have adopted brother and sister from different families but we dont talk or see each other, my brother and I never got on from day one....I dont beleive he is quite the ticket!!! any way we havent spoken and I havent seen him for 7 years only at my mums funeral and he didnt talk to me then... my sister managed to talk to me but it was all about her...she was wicked to mum and I cant forgive her for it....her last owrds to her 6 months before she died was that she hated her and didnt want to see her again.....well she got that alright!!! My parents were wonderful, gave us everything they could. made sure we could drive, had cars. made sure we all owned our homes and helped us by paying deposits for them for us...then when dad retired she got a very large extension and new bathroom on her property and that was the thanks my parents got....so no I still feel like slapping her...I did see her last year at a family funeral when I was still in my neck collar but still did not speak to her.I do have a partner but he doesnt live with me as he works for a racehourse trainer so lives where he works, its about 60 miles from here...he comes down on week ends off...holidays etc and I go up there sometimes. Hes been pretty good but doesnt truly understand it all and gets frustrated and cross because of the pain I am in. He does my donkey work for me....making sure I have hay and bedding etc in my stables so I dont have to bring it from my garage...i pay to have my lawn cut as its 1/2 acre garden...on a hill!!He took two weeks off work after my op to help with dogs and horses went too a frind untill November when I bought them home to buck me up really although I do struggle to do them and it takes all morning to muck out but they are my life and one without them and my dogs is not worth much to me....I did take one down the rode for a tiny ride the other week but he decided to be cheeky with me,,,I didnt let him away with it but decided it was a bit risky so steve rides him when he is here the other is not broken in yet....due to me but is only just 4 so he can wait. guess wat? its raining again!!!just for a change. my two dogs, westies, i got as pups just after my accident, before I was diagnosed, but they have been good therapy and have loads of character so make me laugh even when I am down and do drive me in the fact thay make me walk etc. have never been married!!! poor old spinster on the shelf eh! never really wanted too and never had children ,had hysterectomy 8 months before my neck op, ovaries as well as one was stuck to my pelvis giving me pain! so that definately ruled them out then. so from never having been in hospital in my life I had two lots of major surgery in 8 months both at redhill I was out in two days with the hysterectomy as well and recovered pretty quick from that.my best friend came to see me and said she thought she was coming to see a sick persom and we were laughing so much the nurse came in to see wat we were doing...never had pain killers after that either....so wats gone wrong now I dont know although I was told that discectomy is a preventative op to stop further damage and does not cure pain but I didnt expect to be in more pain!!!! god what a lot of writing.....I will go for now as I have waffled on long enough...I am sure your son does understand a bit ...hey at least you are here thats the most important thing to him I am sure. bye for now Pauline

 
Old 07-12-2007, 03:28 AM   #10
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

Hey Pauline
How's the weather down there? Not too bad up here a little glimpse of summer at last, for how long though, that's another question! Well i havent been at my best this past week or so, pain, pain and more bloody pain. I've to go to see pm consultant on 20th July,(amazing) pretty quick eh, only found out Tuesday, I've got an urgent appointment, yes on NHS, to see him, to discuss and review my current situation and med's. The epi hasnt done anything for me only redused swelling in my calfs and ankles, the rest is still there. My arm, neck and r side of face into jaw has been extremely painful, i've not slept for the last 3 nights, i can't get my head around it all, 1 step forwards 3 steps back for me. I wont go through it all again, if you look at the thread i did the other day you will see how i have been, it's the link to shellygod66. You say you dont have a blue badge, well i got mine by applying to the local council, if you get mobility DLA you automatically qualify for a badge, its probably worth you trying to get one, perhaps you could show them that you get ind injuries benefit. Like you i dont get a darn thing other than DLA, it really [removed] me off when others get it and they have never worked, anyway i'm not going down that road again it only gets me mad. You sound like your doing pretty good, better than me i think, your friends are very good to you, its nice to know you can rely on people around you, it certainly helps. I see your into horses, i'm not a horsy person myself, if you see what i mean, but each to their own i guess. I couldnt contemplate riding a horse what with all the jerking etc, how do you manage? surely it must be painful for you or you would suffer afterwards. Do you find the physical sides of your interest like mucking out etc makes you suffer, and what do you do to combat that? I'm trying to sort something out for out holiday this year, my other half is off in August for a couple of weeks and i badly need to get away from it all for a while, like to go abroad get some sun but its so expensive at that time of the year and when its for 3 of us you can imagine the cost, anything from 1k upwards for 7 nights, not to mention spends as well, it looks like it'll be a week in a caravan for us, Scotland is lovely but a bit cold and i cant travel too far, we will just have to wait and see. My pm said to get away on holiday to clear my head, i tell you i feel like going away for ever sometimes the way i feel. Do you get facial pain? i get awful bad ache in my right side of face, up to my r temple and in my jaw and teeth, i know it's not toothache at its not localised pain and it comes and goes at the flick of a switch. It's all conncted to this crps and nerve damage to neck area, but i tell you it's [removed] crippling pain, and thats telling it straight, what with upper body problems and lower extremeties problems i dont know where to put myself at times. I'm gonna go now, hope your doing ok, keep them horses going and speak soon, ta ta for now tracex

Last edited by HBMod07; 07-12-2007 at 10:39 AM.

 
Old 07-13-2007, 03:44 PM   #11
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi trace, you sound really down and out at the moment.... book a holiday and go!!!! i did....the minute i was told i could drive I did... two weeks later I took myself off to exmoor, somerset for a week to a friend who rents out a bungalow and stayed in that and another friend joined me for a couple of days.... it does really help, different environment I think does it.
I manage my horses because I have to..I try and make it as easy as possible I bed on shredded hemp which means as its really absorbant I only muck out really well once a week the rest of the time i just pick up pooh and tidy up...then I muck one out one day and the other the next. I do struggle and some days it takes me untill lunchtime to finish but I try not to think of the pain and just get on.
No i dont have facial pain, I have pain in the back of my head radiating to my forhead.....occipital nerves I beleive hence the reason I had the nerve block in the back of my head, which has totally worn off now....I get chest pain, right shoulder, shoulder blade and arm pain...all on the right side...then hip pain in right hip nerve damage from graft bone....I too have been in alot of pain this week.....sounds strange but when I swallow I am getting a pain in my neck sharper than the regular one..like something is getting caught in my neck...oh well maybe it will settle. you know I did feel life wasnt really worth living for a while because of pain but my gp sent me on a course called living with pain where a group of about 9 people all with cronic pain for whatever reason get together once a week for a couple of hours and chat about what helps how to cope etc its run by a physio and pshycologist...was informative,,,teach you how to deal with setback and stress. teach you relaxation techniques and exercises etc...it has helped me I am also going to the a pshycologist that deals just in chronic pain....it does help....and I thought I would be the last person to see one...very anti that type of thing but its someone who does understand the pain and the feelings about life etc....maybe worth talking to gp about????look after yourself...hope you are feelin better pauline

 
Old 07-16-2007, 04:23 AM   #12
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

Pauline hi
It's interesting what you say about psychologists etc, that has never been an option to me as yet, i'm a little sceptical about those types and perhaps a bit scared, i always associate mental problems, not saying your mental of course, but i'll have to see on that one. You say you had a nerve block at the back of your head, did you have to be sedated for that? only i dont fancy that if it's ever mentioned, the lumb epi was bad enough. I hear what your saying about a holiday, i only wish i could just get up and go but it's funds at the moment, i know you cant put a price on your health but i'm certainly not going to get into debt over it. We're not quite hand to mouth but we're not flush with money either, if only my hubbies brother-in-law would come good with his loot from the lottery, but that will never happen, they like their money too much! I go see PM consultant on Fri so will know what the next stage is, another epi i think. The Lyrica i've been on again does seem to take the edge off the pain to my r arm but that's all, it doesn't touch anywhere else, your pain seems to be localised, i wish mine was perhaps i could get on a bit better, but i suffer in all extremeties,and my lower back is killing me, my face is playing up also that has kept me awake last few nights, i put wheat bag on back of neck and it eased the pain a bit. My knees still go red hot and swollen and my ankles are swelling again, that i put down to the Lyrica. I just seem to go in circles with it, there's no letting up for me, as soon as i start to do anything physical i suffer afterwards for it, i cleaned to w/c yesterday and it all flared up again, my legs, arm, face hurt and burned, i don't know what to think of it all, it baffles me. You do well to keep going with your horses, it's an interest which keeps you going, my interest was belly dancing (arabic) to think of what i used to do, now i couldn't dance my way out of a paper bag! What's the weather like down there? We're having a glimpse of summer here today, the sun is out, it's hot in the sun, but there are a few grey cloud's looming. It's about time we had some sun, all this rain is enough to get you down.
Well, happy riding, take care
ta ta for now tracex

 
Old 07-16-2007, 04:56 AM   #13
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi trace, we have had a taste of summer...but spectacular thunder storms with it!!! warmer but still wet!!!! Sunday was beautiful after a really good storm at 5am in the morning. ok now for phsychologist bit.......I felt like you, very much so maybe even more so...I had little option in the first place as solicitor sent me for an independent report to see how accident had affected me and my life style etc, she then recommended i had 15-20 sessions with one specifly specialising in chronic pain. i havent started that yet but did have one at living with pain....it is interesting and it does help....i was very sceptical. all my friends laughed saying you and a pshycologist...they would have loved to be a fly on the wall!!!!!and thats how I went, me and attitude, but it was ok and really helpful....you could if interested do it through gp. I am in pain alot all right hand side down but i will not give in, i have swelling in right ankle when the weathers warm since op they thought i had dvt but no, they dont know why and still got it!!!I know that i cant lift heavy items as I could cry with pain then, so i dont do that.I do what i can and if things need to be left thay get left till I can do it, you learn to pace when to stop,( the pshycologist did all this we me) any way enough of that. nerve block...well theres a thing...no sedation nothing...just whack in the back of the head with a major needle and yes i swore at him!!!! I didnt think i could go through that one again but the releif with the headaches was good so august 3rd the next one, yes it hurt but its for minutes then ached for a couple of days but was worth the pain releif. Got a letter from my employers on saturday they are no longer going to pay me my "special provision" as they call it!!!great....oh well i will get it in loss of earnings in court so kind of shot themselves in the foot there but with it came inland revenue saying i owed tax as work hadnt paid enough...great multi million company...and just cannot get things right....talk about rubbing salt into the wound ....sold my house just in time.
Lets hope you get on ok at pain management...he maybe will do more to help you usually they have phsycologist working with them as well!!!!! let me know how you get on and what he suggests....best of luck.
be thinking of you. pauline

 
Old 07-30-2007, 06:57 AM   #14
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

Hi Pauline

Sorry havent been on for a while, school hols, not able to get on computer, anyway, i saw my PM consultant last week, and he wants to do another epi but this time in my neck, i presume its what you had. I'm not relishing the thought of having it done but i've got to try anything, in the hope it works. He seams to feel alot of my problems stem from my neck, but its still a matter of eliminating problems, long long road for me, i've to see an ear/nose/throat specialist to have my ear looked at, i know it seams silly, but my left ear rings and has been deaf for almost a year now, it gets worse when the rsd flares up. The pm says it can be linked in with the rsd but he wants it looking at all the same, i've also to see his side kick and sister in pm i pressume its for psychology therapy, which might not be such a bad thing. My legs are awful all the time, swollen ankles, red hot knees and awful nerve ache running down to my toes, bottom of back goes red hot and hurts at times and my right shoulder is going hot alot, thats a new one didnt do that b4, only clicked and clacked alot, r arm still painful at times into neck and hand numb, my face is giving me alot of pain also. Well that's the update on me, hope your ok enjoying the sun at last even if its a bit late.
Best wishes tracex

 
Old 07-30-2007, 03:28 PM   #15
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Re: ANYONE ON HERE FROM THE UK - advise needed about treatment on nhs

hi trace, I had steroid nerve block in occipital nerve in base of my skull to stop nerve pain giving me headaches from back of head to front but does stem from neck,,,,it did work for a few weeks but has worn off now have another on thursday.....do hurt but for a few minutes pain I got a few weeks releif from headaches so yes was worth it. Ive been bad too, my right shoulder burns and pain down my arm and a new pain to me on back of hand....very painful but eased at moment. All sorts of weird and wonderful things seem to occur...i also have bad pain in my left elbow and cannot work out if its related or not....in the mornings my whole body aches and it takes me a few hours to get going and some things loosen up. hope you having good hols. let me know how things go and it will be interesting to see what my pm says thursday...i will let you know.look after yourself. pauline

 
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