Any ideas? The experts are stumped!

Push - Exactly....Are you saying tell your MP?  Ours would in England get onto the case but in Spain I couldn't even find anything about the surgeon I saw Dr March mmm just thought I might be searching his mother's name.  will try again.    You have to search for the right medication - I can't say that Pazital is fantastic I can walk 20 minutes and thats it.   But then they would say take more Lyrica and I don't want that.  A hot water bottle does wonders for me whilst watching tv but if helen has children, its difficult for her.   I was about 38 when I firstr started with a bad back and an Osteopath was fantastic but she went to S. Africa.  Then it took me another 20 years to find another who in the end told me he couldn't do anything more and sent me for an MRI and thats when I went to a stupid dr - honestly I can't tell you all the stupid things thats happened to me and hypnosis - oh that was a good one, to find that the two ops I had stand in the way of an operation.  Why scar tissue and it would be dangerous.

Hope some more people come onto the link its interesting what we all do.  There is a lady called Sharron Wass on facebook - there tends to be some people on there with back pain etc.  i could actually knock these surgeons heads together - they are supposed to learn from other surgeons, like there is minimal invasive back surgery but i never hear of anyone having it.  Where was your doctor in England.  I totally agee with you YOU MUST PUSH but unfrtunately if Helen is like me, you don't like to make a fuss and it still is the same for me in Spain.  I am coming to England for Xmas and wondering how i will go on. I am taking my TENS machine with me, some people tend to say that they are good so wondering if I am on a shopping expedition it will be useful. Last time i used it I dropped the lead down a not very clean toilet and never used it since.

So I will tell you how i get on.....

You know where to find me on facebook and Spine-Health is excellent with their videos.  They even have a video of a back operation.

Beware of artificial discs thought at my age I might have had it done but for the mess i am in, but usually the top or the bottom of an artificial disc will be the next to go - used to be THE way forward but don't know what is now.... 

I use a tens every single day swear by it on full power gives me some relief

Push hard for my treatment it's only way now either wise your get nothing done at all

I have one but not used it in years.   Yes, push push all the time for treatment, if you don't someone else will.  But there is nothing anyone can do for me now.  Hope things go well for you

Hi,

I tried the TENS machine but it only helped when it was on and not very practical to teach with lol! Glad it gives you relief hope you get treated soon. All the best!

Hi Enna1,

Thank you for your detailed response that was really helpful. I have seen everyone, so many specialists! I saw the Nuerosurgeons who said it was a neurological rather than a mechanical issue so no surgery for me.

I actually have a nerve root injection on Monday, I've had these before and they help for a little while but it's not long term. I'm seeing my Doctor again later in the week as I needs some answers. Aparently some of my nerve induction tests came back abnormal and I've been told nothing about this, the Ortho Consultant let it slip and then refused to discuss it further grrrrr!

Anyway, the pain has gone for now so maybe everything is on the mend. The Consultants keep mentioning MS but I've had the lumber pucture test and it was negative. I'm in Scotland and wish that I have th money to go Private, it's sooo slow waiting for appointments and information.

My Mother was fine and I have been fit and healthy apart from this issue. I am taking the maxmum dose of Pregabalin which has helpd get my foot function back. Thanks for your support and help, I'll link up to your FB page.

I've seen everyone too and had everything done - before I came to spain I had everything done except an op and thought that I might have problems in spain being an offcomer, I would have the op before I came here. It cost me £7,000 and its because of this op and the one before where they jacked my spine up with a sort of widget - that I can't have another operation.

When I first started with my back you couldn't go to another PCT do you remember, you had to go to a specialist within your area.  Well there wasn't one in Cumbria so  they just gave me injections of cortisone. Then I think that they got to the end of the line with what to do and by this time you could pick and choose where you went to - remember? and I was sent to Preston where that stupid dr put the widget in my back.  I did a lot of research - there was Inspace and X Stop and did lots of research to such an extent that I made friends with the X Stop man, and believe it or not he is in Valencia now.    But.... now they have such a backlog of people who it hasn't worked for they don't do the op now for either widget.  The hospital that made it like this was Leeds, can't remember the man's name but I think he was theatened with litigation or he had litigation against him and he no longer does private work.

I had been a member of ADRsupportUK for a few years and saw people come and go with private insurance and they had successful operations with a Mr Shackleford in Warrington that when I knew i was coming to Spain I asked him to do an op (decompression - where they shave the bit of bones that are growing off and inpinging into a nerve.  This cost me £7,000 and this was the surgeon that gave me my first really big cortisone injection (which I paid for £1,000) so I went back to him.  Of course i have become very cynical, if you got someone with money in their pocket wouldn't you say, yes I can do an op for you.  

I think..... once he opened me up he could see what was going on in my body and he wouldn't care would he if you were coming to spain... he talked non-stop about his daughter and her friendship with boys. and when I had the injection years beforehand he did nothing but criticise Barrow in Furness which didn't go well either because that was where we worked. 

Cutting out the bits in the middle when I came to Spain they insisted that I go through everything, even thought I had already had injections etc. I suppose thats the way it is - I even paid £60 to have copies of my case notes but of course, they were in English weren't they.....you forget. The first 2 appointments were an introduction - the second - how was I and another appointment was an injection.  4 in one thigh and 3 in the other and it was fantastic, walk? well I could walk a mountain and it lasted for over year  Please don't think you will get this in the UK you won't. The maximum you can have is 3 a year (I think)

Hope you get on on Monday, get a message to me.  I don't think you said where you lived. You didn't say where the injection will be.  I do honestly think it depends where you live as to whether injections, never mind operations, work. 

nerve induction tests 

Did you read someone else's post about asking for sedation when you have a root injection.  I think when I go to the clinic I will ask for that.  There will be one hell of a row if I get treated like I did last time at the pain clinic. In fact I can get a form and complain.  They were clever at the second appointment I complained and they must make a note who gets complaints forms and guess what, i got an appointment really quick.  In Spain when anyone gets an official form, your name and address are taken, even if you go into a tourist board office.

Anyway I digress - You were lucky that you saw so many specialists. My friend in Wales says that she saw lots of specialists too  and look at me, I only saw one and after that my dr said that Cumbria PCT was going bankrupt and she was sorry but could we try something else...... I could have complained at that but didn't. I didn't think.... when you are in pain I don't think unless you talk it over with someone that you think of complaining or suing,

Just to digress, I did in fact get a TENS machine, I came to spain on holiday and went to a cafe - went to the toilet and what with trying to get my clothes sorted, I dropped the lead down the toilet, which wasn't nice, and didn't use it again.  It only works when you have them switched on (lol) I mean in bed you can't use it - it has to be the centre of your life and I could do it.

Yes I have never heard of nerve induction tests II've just cut and pasted and can't find it - sorry)

Maybe if they think the pain has gone you won't get an injection.....don't tell them its gone or else they won't do anything. Never had a lumber puncture test either.  I think thats why they tested you for MS because pregabalin was initially taken by people with MS (nerve pain) and then realised that it could work for other nerve ailments.

Please let me know how you get on and pleased that we can link up on facebook. You can moan all you like to me because I know how you feel.  How much Pregabalin do you take?  I am on Lyrica and have just upped my dose to 1 morning, lunchtime and 2 at night.

I did a really daft thing yesterday, I walked along the beach - absolutely no-one on it and it was 24 degrees.  Fantastic and so enjoyed myself but this morning as the sun started rising, God my bottom and my legs I thought someone had cut them off but taken pills now and OK.  My partner thought it would be good for me, I am trying to lose weight which one of the side affects of Lyrica,   Did you put on weight with Pregabalin? I have been taking medication for well over 10 years now, I have had the lot.

I've just thought what am I looking at who can do ops in Scotland, you can still go anywhere in England can't you.   What does the MRI say - Just L5 or does it say that L3/4 is going too?

Please subscribe to ADRSsupportUK. because there are lots of written bits on ADR with the heading  ADR Hospitals & Surgeons - Just forget the ADR bit - and go into those headings and tell me what you have found that could relate to you.  ADR means Artificial Disct Replacement.  But.... once you have ADR in time either the bottom disc or the top ones goes haywire too so just remember that you are looking for a specialist.  Is your consultant on that list??????

PS I know what you must feel about the TENS machine in school, not ideal is it. But then you will be off work if you do have an op.  as you only have L5 (L4/5 I guess) they may do what they did to me, shave the spurs (bones or little threads of bones) off that are sticking into a nerve.  No big deal so don't worry about it if you have to have that. I have armed you with some information now. When you go on Monday ask how long is it going to be that you keep on having these injections? see what they say. Say you are not happy.   I think they do a spine stimulation with me, my Spanish friend read it out on the paperwork.  Don't know how that works really except you have a computer chip worked inside you. I have also heard about the computer chip put into your head.  No I defiitely won't have that.  But, suppose these computer chips don't work - and am in pain - you have to wait 4 months to see anyone here.  Unless you go to A & E and at the moment its 8 hours waiting.  its a fabulous new hospital but no money to work it lol.

Speak to you perhaps when you get home

 

For the  - Nerve Conduction Test, - try doing it with just EMG - or maybe

Electro Myloe Gram.

If there is a nerve problem and its more than a few moths old the EMG should locate it.

John11891

Hi Helen - and everyone else. My story of pain is short.  Four years ago I had the mother of all migraines and was in hospital for four days as they suspected meningitis.  They tried a spinal tap but I couldn't stand either the pain or the bright light as they had me in isolation in little more than a cupboard with no fresh air or natural light.

moving on in April of last year I kept getting the sensation of running water down my arms which left pins and needles in my hands. 111 said go to hospital as it could be connected to your heart.  Nope, heart is fine but from time to time I would get the sensation back.

june of last year I lent down, bending correctly, and heard one almighty crunch.  We don't know if it came from the table moving as I fell against it or it was me but to say I was in agony is an understatement.

since that time I have had the merrygoround everyone else has.  No treatment for seven weeks other than pain killers to see if my body would 'mend' itself and ending up on morphine which knocked me out which was preferable to the pain.

finally have my MRI after seeing the first surgeon and wait another four weeks.  Second surgeon looks at the MRI and says there is nerve impingement and he wants a full MRI of my spine.  Back to the chief honcho who says I have three slipped discs - excuse the way I write this, I'm no medic, L3-L4-L5-S1.  He tells me it's not that bad and the rest is usual wear and tear for my age.  Do you ever get the feeling someone is lying to you?

i asked for a copy of my full MRI and took it to a private surgeon and he spent 45 minutes explaining the MRI and charged £75.  Best money I've spent.  Now I know I have a facet problem with bone spurs and my running water turns out to be two slipped discs in my neck without impingement.  I also have osteoarthritis and spondylitis.  I have no idea to be honest what all that means but he said he couldn't understand why I hadn't been treated much earlier.  The trick to getting a private surgeon to do this us to say your NHS surgeon explained the MRI but you didn't understand it.  They don't like to tread on one another's toes unless there is money involved.  He mentioned whether I had any blood work done to exclude other issues such as magnesium deficiencies or thyroid problems or ms.  I told him I hadn't had any blood tests and he just stares at me.

moving on another few weeks and I get an appointment for pain management.  By this time I am on crutches, I have no sensation in the side of one foot I have what I was told was sciatic pain - intense burning from my buttock, hip, back of leg to knee p, down the front of my shin and then nothing.  My back feels like I have a brick in it and I can't lay on my back.  I can't sleep, I can't sit or lay on a sofa, I can barely walk, I have a device to put my socks on, elastic laces in my shoes, a long handled shoe horn, I drag myself upstairs and going downstairs is a nightmare.

the man I see in pain management tells me I have fibromyalgia after asking a few questions.  He's sitting there tapping one foot up and down at a furious speed at the same time as clicking a biro. Im in pain being fired questions at and I'm beginning to wonder what's wrong with the dr!

well, at least I got a diagnosis and a complete change of meds and scheduled for blood and bone tests.  The blood test form has enough things on it to keep everyone busy up there for a while including ms.  Like everyone else I get on the Internet when I get home and Google fibromyalgia and how they will cure this bloody pain. What I find is its the brain going into overdrive and thinks I'm still in pain so a psychological condition that can be bought on by injury or a crisis in the persons life.  So now after all these months of pain I'm diagnosed with a psychological issue!

relief turned to anger and I rang the hospital asked to formally complain about pain management and what do you know I get a cancellation to see a physiotherapist  the following day.  Armed with my private MRI evidence something else occurred to me.  How can you diagnose a problem before you have explored every possibility?

following day and getting geared up for my appointment the body spasms I have been getting for about two months suddenly decide on displaying a full on performance.  I put it down to stress and my newly diagnosed psychological issue.m by the time I am talking to this lady I cannot hear what she is saying.  The tinnitus or loss if hearing which I had put down to the amount of different meds they had been prescribing also kicks in.  I thank my lucky stars I had taken someone with me for moral support who could explain I wasn't shouting because I'd lost the plot but had lost my hearing!  Perhaps more evidence that it is 'all in my mind'.  My moral  support takes over and asks how I can be diagnosed without blood work, why if there is a possibility of ms haven't I been tested? He then refers to the MRI report we got privately and suddenly I am having all the tests including a bone scan this week.

everything you get told I have done. I have kept moving despite the intense pain.  I have returned to work even though I can barely function.  I never go through the night without waking in pain.  I can no longer bare the tens machine anywhere near me, ice makes me instantly throw up, I have urine retention which turns out to be a side effect if the meds and now I'm a junkie who has to be weened off morphine. I can't drive as I can't turn the steering wheel, I  can't walk without crutches and I am so bloody tired its unreal.

my next step if everything comes back normal is to push for an urgent MRI of my head.  I have one that was done so there is something to compare it to.  No one wants ms but I would sooner know now and start treatment than wait until more of my functional skills disappear or are impeded by medication.  If everything comes back normal and it's back to fybromyalgia then I will ask for a referral to a London hospital.  I will also ask for copies of all the MRIs I've ever had to take with me together with the bone scan results and the blood work results.

they won't like it, but I don't like being in pain. from what I can see fybromyalgia is the new irritable bowel syndrome.  They have no explanation for either so anyone who falls through the hoops of the standard testing is clubbed together until a symptom emerges to such an extent that it is obviously something else.

ms is first seen from a brain scan and yet as far as the NHS is concerned I definitely don't have it as it hasn't shown up on my spine MRI.  In other words it isn't bad enough yet for it to be obvious.

im sorry for the rant.  It would be easier just to say PUSH AND KEEP PUSHING.

Hi Dean, so sorry to hear about all your problems I can really sympathise it's just awful that we have to suffer for so long. Oddly the pain has completely gone away now both in my leg and back, this is the first time in four years! It was after my last session with the Osteopath, i wonder if he released a trapped nerve. Needless to say I'm on loads of Lyrica (600mg) and it makes me like a zombie but anything is preferable to constant pain. I had a nerve root block but as I have no pain I've no way of knowing whether that did anything or not. Your story makes me even more determined to avoid surgery at all costs. The Phisiotherapy I've had on the NHS has also made the pain much worse so I avoid them now. Im seeing the Neurologist again soon as they think that it's Neurological rather than my prolapses. My Osteopath thinks it's definately my back, oh well, I don't care as long as the pain stays away! Still have  very numb foot and ankle and only a little reflex in both of those. Good luck, I hope they can do something that helps,  found Lyrica much better than Garbapentin although I have put on weight with it. All the best

Yes he could have released a trapped nerve Helen. You are already on Lyrica, you didn't say - unless you are another Helen.  When did you have a nerve root block, I am off to the pain clinic soon (although I have had it in the UK) I think it was John who said you can be sedated so I'm going to ask) You can feel the needle go in and as they push the liquid into you you can feel the pressure. Horrible.  I was up in Valencia a couple of weeks ago and saw a Neurosurgeon who looked at my latest MRIs and said that because of scar tissue it would be dangerous to operate.  However, not many months before I went to see a neurosurgeon privately (he left the Health Service because they hadn't been paid) he seemed to think it was a regular operation, now I just wonder whether it is.   20,000€ he quoted me and I am glad that I didn't have the fusion as although there are obviously scar tissue from 2 previous operations, fusions are not always the answer.  The op was with titanium rods and screws which can slip or come out which also scared me. 

You are so correct, I eat next to nothing and still have put on weight which causes other things like circulation and when its 40 degrees I can do nothing.  I honestly don't think they can do anything for us. Operations by the sound of it are expensive and both health services are low on money.  

We will just have to moan at each other, it does help so bring it on.

Dea John,

Thanks so much for that detailed reply. I'm so sorry to hear whatyo've been goin through ut it sounds as though you have a detailed knowledge of your specfic condition.

Forunately for me I have no an now which is brilliant, I do have a lot of numbnes though which is located in very specific areas. My new Nuerologist seems to be on the ball and determined to get to the bottom of it. I am having the nerve conduction tests again very soon as there was a problem with those last time and a detailed MRI of my sciatic nerves and the nerves in my pelvis I just hope that these tests will finally show what the problem is.

Interestingly, as the numdness went out of my pelvis so the bladder problems have got back to normal. I just need to find the cause so I can prevent further problems in the future.

Thanks again for your reply and good luck.

Helen

How come they did so many ops.  They said with scar tissue they wouldn't operate on the health service in Spain but would for 20,000€

I think we are all the same - we seem to have issues with our spines, nerves etc. I laughed when you said you were getting really experienced with MRIs, but here they seem to be more interested in the X Rays. 

Everything you said is correct, and closed MRI machines are better, but only have ever had an open one - can't remember where - but when I came to spain I could hardly walk and I am so much better now which I presume its Lyrica/Tramadol etc. I can walk for 30 minutes and 30 minuts in pain after that I am at screaming point.  I think if we were going privately everything would be OK, you would get perfect treatment, or thats what I think. Have you been on ADRSupportUK everyone who had an op said they were fine afterwards but they were always on private insurance.  And as I said to Helen, the surgeon in Valencia who said he would fuse was charging 20,000€ and he was 100% sure i would be walking out of the hospital and I believe him.  Its taking care of yourself afterwards.  There were 2/3 surgeons that gave the finger to Rahoy a few years ago but it wasn't that so much as everyone went through a phase where they weren't paid for months hence the walk out.  I can't think that you get a decent nights sleep in a chair!!!! I didn't know that L4/5 was the area where you had problems, I have just prolapsedd my S1 because when I had my private op in Warrington (again I had to pay) I only had 2.  I will carry on, my partner says I have been at the computer too long. So will carry on tomorrow...... 

Helen, I have found that if my bladder or bowel is full, the pain is worse