7 years and still nothing

Hi there, LeahRuff.

Please don't give up. I have been fighting for help since 2004 I have had two microdiscectomies L5/S1 and sciatica all down my right leg. I have had physiotherapy hydrotherapy and epidural injections, the I had discitis an infection in the disk.

I now have scar tissue/fibrosis but by some miracle due to my consultant leaving the Nhs i have been referred to a private hospital and I have e-mailed Mr Martin Knight of the Spinal foundation uk and he luckily works for BMI Healthcare uk, he seems wonderful and the patient reviews he receives are excellent he seems to be able to help people where all else has failed. Check his website on google The Spinal Foundation UK. I think he is near your area in Huddersfield he does private and Nhs referrals if the Primary care trust will send you to him.

Also the other people on this site (nickname)Truly Fed up has provided myself and so many others on here help and encouragement when we have been fobbed off, I have had help from PALS and family and friends and I have prayed to God and I'm sure I am going to get better. I have been at least able to walk and drive a bit since my two operations and I won't give up I'm hoping Mr Martin knight can help me.

Get all the help you can and don't let them fob you off God Bless get well soon. By the way I did not know this on the NHS Choices website it says since april 2009 patient have a right to choose which NHS hospital they go to no-one told me this. I have tried Lyrica and it helped a bit for nerve pain. Also I when i was in excruciating pain waiting for ops I had Fentanyl patches, codeine etc. If you can't work you can get SSP or incapacity benefit if you enquire.

Mb x

Hi there leahruff and mb,

Firstly, leahruff, don't give up there is help out there, but you will just have to keep banging on doors to get to it. Doing a quick bit of maths, you are the same age as my son. Is it possible for your mum or dad to get involved?? They could help by telling your GP or other doctors about how bad things are for you on a day to day basis. It can be so difficult to speak up for yourself if you are in a lot of pain or upset or frustrated. I have come out of so many appointments thinking, if only I said that, if ony I said that!! There are all sorts of different medication that they can try. They tend to be in three groups...opiods, NSAIDs and other relaxants, and other drugs such as Gabapentin which work by quieting down the nerves. It took me ages to get the right combination of meds. Some of them can cause a lot of drowsiness. But even if you did find the perfect combination of meds, they are never going to cure you, just mask the pain, which is why you should keep having tests until they do find out what is wrong exactly. It sounds as though your Consultant as just dumped you into 'nothingness'. You need to get back onto his radar. Talk to his secretary and get another appointment, or ask your GP to write to him urgently. If all else fails, and if nobody is taking any notice, then turn up at A&E a few times when the pain is really bad. But please don't suffer in silence. These are supposed to be the best years of your life. Shout it from the rooftops......\"I NEED HELP\"... :evil: :cry: :evil: :cry:

Hi mb,

Thank you so much for your lovely comments about the help I have given people on this site. Right at the very beginning of my NHS journey I knew nothing about slipped discs/sciatica/hospital waiting times/medications/operations/dural tears/csf leaks/meningitis/scar tissue/cauda equina syndrome etc. and like so many people I felt so alone with it all. Then I found this website and realised that I wasn't alone and there were lots of people out there struggling along with similar issues. My friends and family didn't really understand, not that I went looking for sympathy. But at my darkest moments pain wise, if someone had offered me a gun I would have happily taken it. Writing on this site, looking back on it, was sort of a journal of my journey. There are a lot of great people that I have 'met' here and they have been my inspiration. We have all learned a lot from each other and I suppose that I thought that if I can write something that will help or guide someone a little way back down the path behind me then that will be a good thing, and maybe in time, they too will share their experiences with others. There should be something like this is real life, all hospitals should have a 'back club' where people can go to meet other people on an informal basis, say once a week, maybe run by a nurse and physiotherapist. It would probably save the NHS money in the long run. It's the simple things......for example, nobody told me about 'wheat bags'. I found out about it from Gail (on here). I brought one and it was brilliant for my back pain. No doctor recommended it though. But people chatting once a week at a 'back club' could swap information.

What a stroke of luck your local hospital is sending you private. Lucky you!! It will be interesting to know how your treatment differs. I hope you write to let us know. Ironic though isn't it, that it costs no more to run a private hospital than than NHS one, but the service is miles better, even though the doctors are all actually NHS doctors elsewhere!!! In the private hospital.......people smile!!! Hopefully this Martin Knight guy will have some new ideas. I saw my neurosurgeon on Wednesday, she is great, but can't really help me much now. I am going to have another operation to insert a sacral nerve stimulator into my back to help with some of the CES symptoms, other than that, there isn't much on the horizon and I think that I

Hi LeahRuff, Trulyfedup and everyone,

I have got an epidural steroid injection on Friday this week (day case) I will let you know if it helps.

Following contacting Mr Martin Knight of the Spinal foundation UK he e-mailed me back and said that if I contacted his secretary then they would see if they can help me.

Following talking to Mr Knights secretary she says I need my GP to write a letter of referral to Mr Knight and then they will apply to my local Nhs PCT to see if they would fund it under nhs to see Mr Knight. Here's hoping. I know it can't be guaranteed but its worth a try after all the struggles i have had.

I hope LeahRuff you get the help you deserve and proper pain relief. And TrulyFedup try Mr Martin Knight you never know. MB x

hello MB, well how did it go? its so sad that we all have to go through so much, 1, just to be listened to, then 2, to get the help we need, don't give up, i'm sure we've all felt that at times, but keep on pushing, don't let them tell you, you can't be in that much pain! :x we know our bodies and we know when something isn't right, good luck hunnie, and let us know :ok:

see ya, take care xx

HI Daisymoo, Trulyfedup, LeahRuff and everyone!!

Thanks Daisymoo, for your kind enquiry.

Here is an update on how I got on the other week.

The hospital in Harrow were very kind, and I was well looked after. Unfortunately the Epidural Steroid Injection did not work.

I had a follow up appointment to see my consultant there yesterday, The lady doc was extremely sympathetic and It was so nice to actually have a doctor listen to me.

I explained I had suffered with this sciatica for nearly six years now after two microdiscectomies two epidural steroid injections 2008 and 2010 neither helped. Discitis and wound not healing for over two months in 2008 after the second microdiscectomy L5/S1. And not being able to work for the last two years.

I asked her about spinal foundation she had heard of them and said she would like me to be referred under the NHS to a Orthopaedic Hospital in Middx to see a consultant there and see if I can have a spinal endoscopy, (I think that it is a procedure that can visualise the scar tissue and try and clean it up via a fibre optic camera.

I was so grateful she didn't say nothing more can be done for you.

I refuse to give up and will try all the help I am offered.

How are you Daisymoo, and Trulyfed up can they do something for you to make you better and LeahRuff hope you are finally getting some decent help and pain relief, anyone who struggles waiting for appointments for too long do contact PALS (Patient and Liason Service at your hospital) they do help a lot.

Also if this helps anybody on here the doc yesterday said look up this internet site its called spine-health just type it in google and they have good help, also I have been reading another forum in which so many people like ourselves are struggling for help this is called Healthypages uk and there is a 81 page forum (microdiscectomy after the operation if anyone wants to read it they are good.

Thank you everyone who has helped me on this site whether you have encouraged me or just been kind enough to post your experience so I have benefited from your help.

I will let you all know on here how the treatment goes at this new hospital, hope that maybe what has happened to me may help somebody else. love to all xx

hello again, your post brought a smile to my face :D it sounds so positive, i'll be going back to kings in london, but TFU was under kings and she changed to another hospital so i think i may enquire about this, because i have a prolapse in my lumber at L4/L5 and get terrible pains in my back and down my legs, so bad at times i can't move them forward, but was told two years ago, they don't want to go in and try anything cos i have alot of nerve damage, which has caused my paralised leg and drop foot/foot drop :lol: but at least they are going to do my two disc's in my neck now, i can't understand how the C6/C7 has gone again, i hada fushion and like a cage around to stop it happening :cry: but none of that wouldn't have stopped the disc prolapsing central which it has done :shock: i've been telling then for over a year its feels like the same one, but was constantly told there is no way it would go again!

aww i have lots of pain relief, haha infact i've just taken a big load so i won't be on here for long, or i start talking gobble-dee-gook :lol: only because i have MS too :cry: which they found when i first hurt my neck and back in a car accident 3 years ago............. see i think some things truely happen for a reason :wink:

right that me off, can't see the keys too good :lol:

thankyou so much for getting back, oh i went through the steriod injections too, haha didn't do me no good neither, i had one in my shoulder yesterday :shock: cos what a baby i am!

listen to take it easy, try to keep smiling, and i'm sure TFU will be on soon,

XX

Hi MB,

Sorry to hear that the injection didn't work. I go to the National Hospital for Neurology and Neurosurgery at Queen Square, London now and they really are very good. Under the pain management team I have been having Ketamine by IV every few months. Basically you go in for a few hours, have this stuff pumped into your arm and hey presto. For me it works really well for a couple of weeks. They also do the same procedure with Lidocaine too. They tried that first but it did nothing for me. Apparently which one works best depends on which nerve pathways are damaged. I have this for the pain in my back/leg, arising from the scar tissue. I use the word 'pain' loosely for my leg because it isn't like Sciatica any more, it is burning/numbness, apart from in my foot. They were going to let me self inject once a week at home, but now instead they are looking into whether I would be better off with a Spinal Cord Stimulator. What I am fast learning is that once the nerves are damaged longer term you end up with all sorts of secondary problems. My foot is quite weak, three toes are locked and don't move at all, but now all the bones in all my toes are shifting outwards and may need to be broken and fused. I have therefore taken the view that I need to look at the long term; be realistic, preserve what I have and most importantly try to minimise possible future secondary damage. I am having a trial of a Sacral Nerve Stimulator in a few weeks to help with my bladder/bowel problems. Again, for the reasons above. I would much rather not have to do any of this of course and I just wish it hadn't come to this.

I was interested in what you said about the Spinal Endoscopy. I did ask about the possibility of having the scar tissue removed, by whatever means, but they didn't seem keen. Maybe it only works in certain cases. I would much rather try that than the Spinal Cord Stimulator. The Surgeon did say though that while he was doing it he would \"tidy up the discs (I have two focal prolapses that don't cause symptoms) and do what he can with the scar tissue\". We'll see. The only thing that is guaranteed is that it will all drag on for months!! I think that the Harrow hospital is part of UCLH??? As is the NHNN in Queen Square, which should make it a bit easier if you need to be transferred there at any stage.

I just keep hoping that medical science will come up with something really progressive and useful in my lifetime. Yours too.

Hopefully, you will get your appointment through soon. The worse thing is the way it all drags on, and on, and on isn't it??? An endless all consuming cycle of....appointment date months away, thinking about appointment and what you want to say etc, appointment, reflecting on appointment, waiting for next appointment.

Best wishes

TFU

Hi Trulyfedup,

Thanks for your reply. I hope this Hospital in Stanmore doesn't have a long waiting list.

I'm going to my gp on wed so she can help with the referral to this new hospital also consultant I saw at BMI is writing to GP to recommend some tablets for me too.

I hope that you will get some relief, I wonder if the Spinal Cord Stimulator will help you,

I wonder if you remember the american comedian Jerry Lewis, I looked up this article on him it may have been through google or another site.

It said he had a lot of pain and back problems and he was fitted with i think a medtronic gadget and it helped him a lot.

Here's hoping you get helped soon, let me know on here how you get on.

Daisymoo, Thanks for your kind note to me also hope you get some relief why do we all struggle, I'm sure if we all had been treated at once when we had all the beginnings of the disc/back troubles it would have been better than us all having mega pain medicines and making us all suffer and wait too long.

Also why doesn't the nhs invest in decent back care, more specialists

and new techology e.g laser surgery and new techniques?

I Will post updates when hopefully I have the spinal endoscopy if it helps or not and anything new that will help everyone on here.

Also hi LeahRuff, how did you get on are you alright?

Love Mb xx