Nerve damage

Bones, joints and muscles
1

Hi there.

First of all I am really pleased to have this forum to write. My problems started back in January and there was a sudden worsening in May. Referred by local hospital for MRI then to Kings College to see a neurosurgeon. A long story but my case turned into a complaint. Had another MRI today. Initially was told L5/S1 central disc prolapse and L4/L5 bulge, but since May it seems that more damage has appeared at L4/L5 hence the new scan today. The meds work brilliantly, but the surgeon had this stupid idea of wanting to see what happened if I came of them. duh!!!! I wonder what happened?????? I think it was her way of getting rid of me, as it then meant I was on no list, not for surgery, clinic or follow up! But I was having none of it!!!

The problem is that I have a lot of numbness in my leg and the surgeon says that microdiscectomy will not help that. Why??? I think it is because surgery has been left too long and the nerves cannot recover. I read that it should be done within 3-6 months of symptoms first appearing. Anybody have any experience? The numbness bothers me more than the pain if I'm honest, probably psychological, but when combined with the pain walking is a nightmare and my leg seems very weak. Also, I get a really severe pain in my foot when I go to the toilet (number 2's) and I have lost 2 and a half stone in weight without dieting since May. I read on the internet this is a 'red flag warning' but at the hospital I may as well be speaking Urdu for all the notice anybody is taking of me. Has anybody else lost a lot of weight because of this, or have pain in their foot when they go to the toilet? Do you know what causes it? Is it a bad sign? My instinct tells me ......YES!!!!

I have done a lot of reading on the internet, and thank God for the internet.

Thanks for 'listening'.

2

HI YA trulyfedup

THE NUMBNESS IN YOUR LEG IS A COMMON PROBLEM 85% OF PEOPLE ON HERE HAVE THE SAME PROBLEM.THE PAIN WHEN YOU GO TO THE TOILET , CAN I ASK DO YOU HAVE A PROBLEM GOING AS A LOT OF THE TABLETS THE DOCS GIVE OUT TO CONTROL THE PAIN CAUSE CONSTIPATION (MORPHINE IS GREAT FOR STOPPING YOU GOING)IF THIS IS THE CASE I WOULD RECOMMEND MOVICOL ITS A POWDER YOU MIX WITH JUICE AND YOU DRINK IT DOWN AND THE NEXT DAY NO PROBLEMS GOING JUST LIKE MAGIC !!!! .THE PAIN IN YOUR FOOT WHEN YOU GO TO THE TOILET I SHOULD IMAGINE IS YOU ARE PUTTING PRESSURE ON THE BACK TRYING TO GO IF THIS IS THE CASE YOU CAN GET A FRAME THAT FITS OVER THE TOILET (IVE GOT ONE) AND WHAT IT DOES WHEN YOU SIT DOWN YOU ARE NOT AS LOW EFFECTIVELY IT KEEPS YOU IN A BETTER POSISTION THE BACK IS STRAIGHTER AND THERE FORE NO PAIN . AS FOR THE WEIGHT LOSS I HAVE ALSO LOST A LOT OF WEIGHT ASK YOUR SELF ARE YOU EATING THE SAME AMOUNT AS BEFORE YOU HAD A BAD BACK IF YOU ARE THEN IT IS WORTH SPEAKING TO YOUR DOC ABOUT AS IT COULD BE A PROBLEM ALSO DO YOU HAVE ANY NUMBNESS ANY WHERE ELSE AROUND THE BOTTOM AREA .

KEEP IN TOUCH

REGARDS

GARY

3

hi trulyfedup,

my p disc's are in my neck, i was referred to kings i went in aug to see a neurosurgeon, i have nerve damage and he said he still gonna do discectomy and fusion (cos i also have DDD/CS) but it will not make me pain-free, it will help alot, i'm hopeing it'll help the severe pain, i can put up with little nigley pain's cos i think after years of pain any improvement will be brill! he said if you have nerve damage there's nothing can be done, only to stop any further damage,

quote;- trulyfedup said~

''i read that it should be done within 3-6 months of symptoms first appearing''

oh things very different in the real world!! i've waited since feb, and peps on here have been waiting even longer than that!! i know i read things too, and as i was put down as urgent (lol) i packed a case straight away :silly: , he he and its still waiting!!! i just put tumble-dryer freshners in it to keep it fresh, (i will wash the stuff when i get the go)

:huh: the only thing gonna happen if you come of your meds is your gonna be in more pain i should imagine!!!! but you will find, from reading some of the posts, you'll be put on one waiting list to another, but hang in there,

i'm sure others on here can help with your lower limb problems, cos with the neck it mainly affect's your upper body, i do have problems with my lower back (DDD)and that plays havok with the nerves, and i know first hand how frustrating it is not getting the answers you want, :x

so what is next, were you told? let the sight know :ok: , and take care,

:rose: mandy :rose:

4

Hospital rang, yesterdays scan shows the same as the one in May, so am going to go ahead with the op. Hopefully it wil be in next two weeks. They are going to call me back. It doesn't explain why I have L4/L5 symptoms if I only have compression at L5/S1 but maybe there is some sort of overlap.

On the 'toilet thing' it isn't to do with straining. As soon as I sense I need to go, it starts up then just gets worse and worse until it is over. Then it just vanishes again. The surgeon said it was referred pain, but I haven't read anything about this anywhere. I find it a bit freaky to be honest.

Thank you for your help and guidance. I do feel a bit like Tigger......like I'm the only one!

I hope you all get to have a pain free day. Or at least as good as it can get. :lol:

5

:roll: hi truelyfedup

replying to your message, think sometimes you,ll get refered pain in another region, i get that on the other side of my body (l leg and hip) and i have a problem with with cervical prolapse discs c5-c7, and been waiting since feb for a urgent op! my surgeon told me in july that i would get my op within 2-3 wks and im still waiting! have put in a letter of complaint , but alas they dont want to reply, i phone the secratary every month but no joy there now my gp has written to the surgeon to ask for me to be seen asap. dont want to seem nosy but, how come you,ll get your op in 2-3 wks, sorry for asking but im sure theres a few on the site wondering the same thing, i hope you do get seen quick as it is an agonizing thing to have to wait with to get the treatment we need. let us know your progress be good to find out how you getting on . gail

6

hi trulyfedup,

good news on the op! i am pleased for you, :D

and like gail was wondering how you get it done so quick? :shock: i had MRI done up kings in august, all i was told was still down as urgent and put on list for op, and what he's gonna do! ekkk!!!! i have to go to my GP's to pick up MRI results next week hopefully, i think if there not there than i shall ring kings, again!! honest its been phone call after phone call to kings, GP's and consultants and finally they said they'd fax 'em to GP and i should get 'em next week, lack of communication with them all i think!! :x

anyway take care and keep us posted,

:rose: mandy :rose:

7

Hi all,

I got put in the hospital system back in February. That hospital organised the MRI in May, then a few days later things got much worse. Was given all sorts of meds including Tramadol to which I reacted really badly. It didn't help the pain at all, but two days later I collapsed at the GP's surgery and separately, two days after that I ended up at a mental hospital. It was a never ending cycle of severe pain/panic and hyperventilating. A long story but the paramedic called out an emergency doctor but in the meantime I was totally unreachable in the street so he called the police and I ended up at the mental hospital for a compulsory assessment of my mental health. The copper put me in handcuffs behind my back (and covered my arms in bruises) and put me in the back of a police van on my own. My Dad arrived just as this was happening and said that at that point I couldn't stand and my eyes were up in my head. The heady cycle of tramadol (I could write a whole e-mail on that)/pain/panic and/hyperventilating was awful. Normally the worse that happens to people hyperventilating is that eventually they get all rigid from lack of oxygen and pass out and then it is over, but in my case the cycles just kept continuing. I'd come round then off we'd go again!! With this in the back of my mind and the fact that 10 days later I ended up in A&E on Morphine I decided that I was going to make sure that I didn't get lost in the system. Never again was I going through that.

I got referred to Kings in May and had my first appointment in July. The Consultant kept me waiting over two hours, the wrong name was on my file, they couldn't get the MRI results open and when they finally could they had the wrong date of birth on them so they couldn't even be sure they were mine! There were other problems as well and eventually I put in a formal complaint to PALS. They said they would formally reply in 25 working days, but that deadline has come and gone and even though there has been contact (including a second meeting with the consultant and a new MRI) they haven't met their deadline for sending a formal response to the complaint which puts them on the defence. Not that I knew that. My original letter was just to have a whinge. But it seems that they have broken all sorts of NICE guidelines in my specific case.

The fact is that in July the Consultant undertook to do this operation end of August/early September. From listening to other people's stories I can only assume it is because of the amount of numbness I now have, which suggests more neurological damage. Or maybe what happened with the paramedic/police/mental hospital. I was taken in on a section 136 for my own safety. It is one down from being 'sectioned'. I still can't believe that that can happen from pain from a herniated disc.

My advice to others that have been waiting a long time is to keep pressing. The NHS is not free treatment. We pay a small fortune for it through our taxes, both direct and indirect. I cannot understand why you should have to wait weeks on end for the MRI results, there is no reason for it. A friend of mine in Canada said to me once \"Be a squeaky wheel\". It is true. Don't suffer in slience, keep on their case. You will probably find that one letter of complaint to PALS will work wonders. It certainly cannot hurt!!!

I think that for everyone there is a defining moment when they have had enough. For me it was coming home from the locked assessment suite at the mental hospital. I was only there a few hours,but I am never ever going back to that for the sake of pain that can be stopped by an operation.

But I know what it is like when days become weeks become months. Keep battling on. Be a squeaky wheel. I wouldn't even bother trying to speed things up through your GP (mine is useless) as it is just another layer of people that you are putting between you and the man who matters. Write directly to the surgeon. Put him o

8

Hi again,

I've just read back my last post and want to add the following:-

1. Upon receipt of a copy of my letter of complaint to PALS the Consultant instantly offered me surgery the following week (which would have been the second week in September) which I initially turned down on clinical grounds because I wanted my questions answered first. So giving me a quick date now is to follow up on that.

2. Ringing Kings never got me anywhere. People say they'll ring back/pass on the message, but it is just a big black hole! It is always best to write.

Best wishes

9

hi trulyfedup,

:shock: omg!!!! you've had a terrible year, sounds like the ort of year i've had so far! thanks for telling us, and its answered my question, so thanks, oh don't think i'll bother ringing kings, they made some mistakes with me too, and yeh i've not got anywhere with each phone call i made, they 'lost ' me for ages my consultant had to re-fax everything, i kept ringing again cos they said i still weren't 'there', then said it takes upto 5 weeks for a fax to get through the system, oh thats when i started, 5 weeks!!! thats why we use fax i thought cos its the fastest way to send papers etc, surely, anyway they found me the next day!!! :roll: , as for my mri results, i'll ring my gp's cos i refuse to see one at the mo cos i've been treated terribly by 2 now, first one ignored my symptoms then the second (my current one) didn't like that i complained about my rheumatologist!! so i won't be complaining again, cos it made things worse,

anyway thanks for explaining again, and sorry for asking, :oops: but i thought ah i have to, cos just abit paranoid when it comes to the NHS now, cos i complained i feel as if they all against me, silly i know but its how i feel, lost all trust.

anyway glad you found the site and still glad for your op, think i'll just sit back and wait,

take care,

:rose: mandy :rose:

10

Mandy,

Have you tried complaining to PALS? It really could be the way forward for you. It is their job to deal with complaints against the hospital. It does sound as though you are well and truly lost in the system. Can I ask why are the results going back to your GP? What does he need them for? Shouldn't it be the Consultant that wants them so he can decide if you need surgery? Ultimately he is the only one that will be making that decision. All your GP can do is to ASK him to operate, he won't do that without reviewing your MRI results anyway?

The problem is of course that we are thrown into this 'game' but no-one told us the rules!!!

Best wishes :arrow: keep on moving forward!!!

Best wishes

11

hi trulyfedup,

i complained to hosp, to the 'shamed' rose gibb, at maidstone! she wrote back with such stupid excuses, my new gp asked for a copy of my complaint, i thought maybe he would help, so i gave him one, then i went to him cos of my lower back pain and i was having bladder probs, (explained in earlier post), he said he knew who i'd complained about, then when i told him my probs (with back, numbness down below and wetting myself) he just said ''well you think your the expert, you tell me whats wrong with you!'', :steam: with that i got up walked out and not been back since!!! :cry: . so i think i'm doomed! :shock:

as for my mri results going to gp, right erm... i went to kings on 23rd aug to see NS, told him of my probs, he said he wanted an urgent mri, so i went back next day 24th, had mri, on whole spine, he saw me quickly (i had to wait bout 3 hours!!) in between surgery, and said my s cord shows no damage, but i have alot of nerve damage and that he still going to operate, but won't help the pain 100%, i'll be left with some, the numbness may be due to swelling and pressing on s cord, but he looked at old mri of my brain and dropped the bombshell, he thinksi have MS! it has been mentioned b4, but nothing since. so i knew i was having op, in a letter to consultant a couple of weeks later, (i received a copy) he doesn't say anything bout mri results just that i was having one the next day (24th) and that he will write with the results. i just thought i would receive a copy of them too! i rang my consultant up maidstone hosp, he's not heard from kings with results, so i rang kings she said i'll ring you back, later she rang and said she gonna send me a follow up appointment to discuss results, but the waiting is so long,i'll probably have my op b4 the appointment, er... whats the point in that? anyway i rang consultant again, to ask if they could get them through for me, no they can't because they didn't arrange the mri, so i rang gp, they said i had to ring kings and request they send results to gp's, p'd off by now!!! so i rang kings, asked her to send to my gp, she said they have to request them.....ohhhhh thats when i flipped and said they just :bleep: told me to ring you!!! anyway she agreed to fax them to my gp, now i'm gonna be cross if i have to talk to gp to get results , cos i have absolutely no intentions of sitting in the same room as him again,

oh feels good to have a moan~~~ :magic:

so like i said all i can do is sit back and wait, the NHS has let me down big-time, they don't have my trust at all!!!

i have asked gail to do op for me!! abit of diy like :lol: but she didn't want to!! ekkk!!

so i have exhausted most avenues! :wah:

take care,

:rose: mandy :rose:

12

Hi Mandy,

I had a similar experience with the Rheumatologist at Orpington Hospital. That was where my GP sent me first in February. I saw the Consultant there in April and they decided I needed a scan. They were going to send me to the PRUH at Farnborough but I got put on the overflow list and was sent to the mobile scanner at Kings. Alliance Medical who run that get the results back to the hospital within 48 hours. They actually got them back in 24 hours by DHL. Then when they got to the PRUH the problems started. Before the scan the doctor at Orpington who ran all the tests said that as soon as I had a scan date to ring straight away to book the immediate follow up appointment, which I did but was fobbed off with a five week wait. Apparently the Consultant was off sick and then the whole world stops turning!! Anyway, after things had got really bad I rang up again trying to get something sorted out. Then I was giving the biggest lie of all \"Alliance Medical take weeks and weeks to get the results back.\" I said \"funny that because that wasn't what I was told\". They then asked that I leave it with them and they got back to me and said there was no sign of them, it would probably be six weeks for Alliance Medical to send the results. So I rang Alliance Medical (I had their number to arrange the original appointment) and that is when I found out that they had been sent 24 hours after the scan, by DHL. They don't keep copies. They guarantee delivery by DHL, so that somewhat blows the whole lost in the post excuse which was no doubt coming next. I rang the PALS rep and in 24 hours he had the scans found and in the right department. Apparently it really can take six weeks for them to get to the department after they arrive at the PRUH. That is a scandal. But it certainly isn't Alliance Medical's fault, they had gone a brilliant job.

My GP is useless too. There is one at the surgery that I have refused to see since 2002. The rest aren't great either. The last time I went in May they didn't even want to re-prescribe the meds that I had been given at A&E. The GP's had prescribed all sorts of stuff none of which had really worked. Here I was with a combination that worked and they didn't want to prescribe them! But I stood my ground. He said to me \"do you know these drugs have side effects\" I said \"I have read the boxes\" he said \"Good, don't hold us responsible if you get them\". I could see from the angle I was sitting that he noted the computer......'discussed side effects'. If that is his idea of a discussion!!!!!!!!!!

Why not give PALS at Kings a chance to sort out the mess for you?

Best wishes

13

hi truelyfedup

been reading your posts omg you went through it , i too had a bad reaction to tramadol (after taking them for months prevoius) it relly scared me . im in the middle of re-writing my letters to my mp and the hospital complaints dept(who never replied to my previous letter) i am appauled at the lengh of time i have had to wait on the nhs waiting game of 18 wks for everything, now after suffering a terrible night the worst in a long time i,ve had enough of being fobbed off. i am trying to get through to pals but im not sure if they operate(excuse the pun) in wales. your posts have been very informative and i do feel for you its like we,re in a battle and for what to get some treatment, all i,ve had for 2 yrs is pain relief now thats what i call a let down of \"duty of care\". i do hope you find a way out of this \"maze\" . take care gail

14

Hi gail,

Try looking at the hospital website. That will tell you if PALS operate there, or what the procedure is. Go for it. The NHS is a shambles. If they threw another billion pounds at Kings I don't believe it would help at all. The service would be just as bad. The system is seriously flawed. The joke is that it costs no more to treat an NHS patient than it does a private one, so why is the service so poor?

I think if you write you need to be very precise..........I am writing this letter as a formal complaint etc. And tell them your whole journey..referred date, appointments, delays, mistakes, unreturned phone calls, with dates if possible, the whole thing. Add in about the distress, pain and general inconvenience as well. Everything. As you write it out, you will see just how bad the situation is when viewed in the whole. I actually found it quite therapeutic, because I could see that the problem was not me. There was a point when I believed maybe I was just being pushy, impatient, unreasonable, or unworthy, but after I had written it all out, I saw it all in a very different light. THE PROBLEM WAS NOT ME IT WAS THEM!

Good luck. I'm sorry you were in pain last night :cry: I hope you are feeling a bit better now.

As for Tramadol, it has to be the most evil drug going. Never again.

Best wishes