What to do next; I'm desperate for help!

Hi,

I am sorry to hear about your distress as I have been through the hell which ended up being an emergency surgery at L5/S1 due to caudia Equnia (when I say emergency it was left almost 4 weeks). I would firstly suggest that it should be a neurosurgeon that is dealing with you due to the complicated nerves involved. Also I would go back and insist it is an emergency by what you are saying due to the lost of muscle function in the leg. Insist that you speak face to face to someone at consultant level as often at A&E, it is usually only more junior levels doctors that attend. It took two years for the muscle function in the leg to return with me. I would suggest consider contacting higher up in the hospital like department heads (PALS should be able to provide these numbers).  Also, you can be seen almost immediately if you ring the consultant's secretory and ask they they will provide a consultation privately (I recently paid £250 and then went back to the NHS with the guidance). Finally has anyone suggested pregabalin which maybe more effective but often GP's will resist prescribing as cost on average £90 per month. Be careful of posture as I was without knowing was putting more pressure on the disc to get a way from the pain, you need guidance from a physiotherapist/ GP who can advised from looking at your MRI. 

Take care and I hope you get everything sorted out soon.

Sorry, I should have mentioned in the post- if there is someone who can be an advocate on your be half such as your health visitor or local children's centres have professionals who advice and lobby the hospital that this is having a serous impact on your quality of life. They can also help with more practical ideas?  

Also you you may want to mention or discuss the likelihood of these prolapses resolving on their own as some surgeons seem to have magically thinking about that?

Keep being strong as you sound very resilient. 

Hi Helen I am in the same place where u r at I have l4/l5 s1 degenerative disks but the doctors won't operate as it would make me worse, so my advice is to help u sleep is ask your doctor for mitrizpine it knocks me out I am on pregablin also which I as helped me with my nerve pain. I've had all the epidurals and none have worked so I hope u find something which helps u all the best .

Helen,

As per previous post you need to see a nuerosurgeon ¬ Orthopedic.I paid privately to see Neurologist ( I havng different issue with bulging disc pressing on my spinal cord causing nerve related issues in my legs- surgery in 2 weeks) worth it - I then went back on his NHS list and got MRI in 6 weeks post consultation (That's quick for NHS- if I had gone through the waiting list I would not have seen a consultant for 15 MONTHS!- shocking).

When I saw my nuerosurgeon I was not happy he had the experience so  sought a 2nd opinion (which you can do and you have the right to choose anyNHS trust in England- lots of centres of excellence), I am awaiting surgery in 2 weeks with 2nd opinion.

What I am suggesting is pay for the consultation privately- and try the route I did. Then seek a really good nuerosurgeon- what part of country are you in.

Medication and injections is not solving your problem - you have to push and push and push- its awful and going to A&E for you condition is a total waste of time & quite frankly very unprofessional of you them to suggest you do so.

 

Hi,

Thank you all for your replies. Part of the problem is that I live in a remote (but beautiful) part of the Highlands in Scotland. I am part of NHS Highland and have a three hour drive to Inverness which is insane. There is no one in Neurolagy at Raigmore that deals with spinal surgery so my GP said it would be Aberdeen which is a long way away. Our local hospital is very small with no Consultants.

On my GP's advice I have booked an appointment in Glasgow with a Neurosurgeon whose specialism is Spinal surgery, this is in two weeks. He works for the NHS also so I may be able to get on his waiting list, the only problem is that it is a different NHS authority. Hopefully he can give me a proper assessment, I'm sure he is the best person for the job.

I have tried Garbapentin in the past (didn't help) and the A&E doctor mentioned Pregablin but my Doctor is reluctent to start me on this at the moment. I agree that drugs aren't the answer. I have written to my local MP but am not sure that will move things anywhere.

I'll have a look into support from the health centre, I hadn't thought of that! My Husband could certainly do with a break. I can't believe that there are so many people on here in the same boat, just disgusting! I am very reassured however by all you replies. It is so difficult to fight for everything, especially with all that's going on. My GP sent me away two years ago saying "it was all in my head" that's why I didn't go back to the Doctors until desperate, he is eating his words now!

Hope we all find some resolution for our problems, if not at least some pain relief.

Thank you so much for all your support, I am a tough cookie and know how to get what's best for me. Thank you for all your help I will post again once I have seen the Consultant.

Hi there,

I've been in the Southern General Hopspital in Glasgow for three weeks and was discharged on Tuesday. I thought I would update in the hope that this helps someone else in some way.

After my visit to A&E and benn given more drugs I went home and my nerve pain just got worse. Had to call NHS direct out again, useless just gave me morpine and said I needed urgently seeing to! Hahaha, the Doctor was on crutches himself for a back operation that hadn't worked call that ironic! On the Saturday I was completely unable to pee, and thought hurray " cauda equina" now they will have to take me seriously, ambulance turned up and back to A&E.

Lots more sensation and pin tests, I refused to take morphine as didn't want any sensation dulled until they had assessed me, loved the gas and air though! They waited to see if I could pee for nine hours, ridiculous! Constantly scanning my bladder and sitting me on a comode with the taps running, obviously didn't believe me, I couldn't feel a thing even when they put a catheter in eventually.

At 11.30pm I was transferred to Glasgow Spinal Surgery by ambulance, was meant to be airlifted as my pain was so great but there was an argument about it (probably due to cost!). Two and a half hours of been shaken through pot holes and I arrived in a really bad way, four lots of morphine and two full canistors of gas and air couldn't relieve the pain the abulance ladies were absolute stars!

Don't remember much of the next 24 hours, put through thr MRI scanner and despite all my symptoms it wasn't the disc causing it, well everyone was totally baffled, you can't  make those symptoms up especially when someone is sticking pins in your foot! We all thought it was my L5/S1 prolapse it was a shock to discover spinal surgery was not an option. Saw the Nureologist after a couple of days, unfortunately no space in that ward so had to stay in surgical. He requested 35 tests of varying degrees.

I had a full body MRI, Lumber Puncture (to test for infection and MS), blood tests, nerve tests which in involved electrodes and needles basically electricuting my nerves until I felt something to test function which was agonising.

The outcome has been pretty non-conclusive. They found seven central prolapses two in my lower back, three further up and two in my neck. None show any nerve compression on the MRI scan. They are suggesting a trapped nerve in my lower back but could not test those as they are too deep in (not that my butt is too big as I suggested lol) as these don't always show up on MRI. Clear for everything else, tumours, MS (for which I am eternally grateful with two small children) and everything else. So no real answers which is unfortunate. The Neurologist said that he was sure it was a mechanical issue (ie don't strain your back) but it is common to see high achieving woman like me with small children with severe physical symptoms and no specific cause. I need to reassess my job and workload as a Depute and teacher.

The nerve specialist said that I did have an L5/S1 prolapse pressing on the nerve three years ago when pregnant and because it couldn't get treated properly with drugs and the pressure of a growing baby, that my body will remember that pain and if stressed or over-worked it will flare up with these symptoms. She talked about phantom limb syndrome being similar.

So I am home again and starting on Pregablin which the accute pain team and Neurologist insisted on. I was taking Diazepan and having awful side efects, couldn't read a book and my brain was mush, didn't recognise my family initially when they came to visit me, I'm off that now. I'm finding the transition hard and have been woken up at 3am with the pain, my leg also tremours uncontrollably which is a relitavely new symptom. It can take up to four weeks for the Pregablin to build up to an effective dose, I'm hoping it will stop the pain as it is my only hope. Going back to see the Oesteopath and will also try acupuncture as I hate all these drugs.

I feel positive that I've finally been assessd properly and that no stone has been left unturned. Of course I hoped for a miracle microdisectomy but that wasn't to be and I know they don't always work. Will be seeing an accute pain team support group at my local health centre and a check up with the Neurology Dep in three months. I also wrote to my MP about my experience and got a reply, my case will be used as an example for them lobbying for better patient waiting times at Holyrood. It is terrible to think that had I not had cauda equina symptoms I would still be waiting to see a consultant.

So if you've managed to get to the bottom of this post thank you for listening. I feel I need support even more now home, I felt so safe and looked after in hospital. I'm trying not to over do it but it's like changing my whole personality as I usually just get on with things. I hope that you all get the help and treatment that you deserve and if like me, you're going to have to live with chronic pain I wish you well. The world is a beautiful place and life is worth living even if it's just for the little things. I couldn't have survived all this without the love and support of my lovely family and am aware that there are people much worse off than me!

Hi Helen,

I was so sorry to hear about your recent experience as I know it can be beyond distress when the doctors are saying nothing is conclusive. I am going through a similar time as mentioned before I had an emergency microdisectomy L5/S1 surgery for a herniated disc causing Cauda Equnia two years ago. I was making slow progress from CES but then suddenly several weeks ago new Cauda Equnia symptoms developed with severe lower back pain. I went to A&E who done (after a 12 hour wait sitting on a chair) an emergency MRI which showed no nerve compression (as they say no disc practically left at L5/S1). I was left confused by the results and distrustful of the doctors as it was the same hospital that delayed performing the surgery last time for almost 4 weeks. So I went back to my GP who referred me to a centre of excellence and I am waiting for an initial appointment ( so, I remain hopefully they will have an answer?). The back pain is reducing slightly again and CE symptoms are now more intermittent, not sure what is going on? DDD?

Did your Cauda Equnia symptoms resolve? 

In your other post you ask about pregabalin and two years ago when the pain was beyond coping with, someone suggested pregabalin and it took about 6 weeks to notice the initial difference but the real difference took several months. Prior to this, the GP was keen to offer opioids and tramadol. The GP was really resisted to the idea of pregabalin but I fought as I would not have been able to work in my role on serious mind alternating drugs. I later found out that they cost about £90-100 per month and they prefer Garbepentin as a generic drug, so much cheaper. In fact the indifferent GP suggested at the time she would only consider neuropathic pain medication after a year of other medications (clearly, she had not experienced a herniated disc). If I had been left a year in that state I would lost my job and home.

I found the initial settling side effects such as dizziness and memory issues troublesome but I continued as I noticed the pain was greatly reduced and over time these problems resolved. There are several issues with pregabalin you need to be aware of such as it is an appetite enhancer and I gained a lot of weight quickly. But after finding out about this side effect I was careful with my diet and lost all the gained weight. My appetite has also retuned to normal and it remained effective in controlling nerve pain to a manageable level until this acute event. Pregabalin is also used in anxiety conditions and I found that I was so much more calmer (not a bad side effect in my case). 

You mention about mechanical back pain and I also find slow release 12 hour naproxen twice a day really helpful. You also have to be careful with naproxen such as take with meals and have prophylactic Lansoprazole or similar (proton-pump inhibitors) which protect the stomach while on NSAIDs.

To hear someone remain so positive about life when living with chronic pain made me emotional and tearful as sometimes I forget that how life can be still beautiful. Generally I do not speak about my back problems to friends and family as do not want to trouble them. However as I look out my window writing this post I did not notice that the sun is shining and the weather is lovely, I just got to work harder at using my mindfulness techniques and constantly remain myself that this pain does not define who I am as a person. I am so glad you got somewhere with the doctors and there is a good plan in place and thank you for sharing, you are an inspiration.

Hi Helen, so sorry for you, it must be awful , I have heard that there is a procedure that they can do to stretch the disks apart and insert an artificial cartlage replacer a kind of bone cement, try to find a really good spineal unit Google one, you should be able to see one on nhs choices, there is something that can be done, in desperation there is diamorphine, you are supposed not to get addicted to it as ordinary morphine, take care Chass

Thanks so much for your comments and kind words! They means a lot at 3am, woke up feeling like I was going to be sick and my leg is shaking, really hard to come off Tramadol even gradually when the Pregablin isn't working properly yet. Will ring my GP and have a moan about it, they are being supportive now which is great!

Got out for lunch in the sunshine today for the first time in 12 weeks. Had the usual todller refusal to eat/cooperate (no not me my nearly 3 year old) but once let loose on the play are happy children. I cried as my leg was hurting so much trying to sit on a wodden  bench and one of my lovely ex-pupils who was working there found me a nice soft cushion, all in all, the day didn't turn out too bad and the views are just amazing, have missed the great outdoors!

Pain definately not under control at the moment, I take 150mg slow release Diclofenac and find that works better than Naproxen for me, although there were some health scares about long term use so don't know how long I'll be allowed to take it long term, Weaning from 8 Tramadol 50mg down to 5, droping 1 every three days dropped the Amitriptylene and takin 2 75mg Pregablin. My guess is that I will need more of that! Actually it's been nice to feel like eating again, have felt so sick for so long and lost 1 1/2 stone in two months but will watch out for weight gain!

One of the reasons I'm going back to the Oesteopath is to see if the traction works again, then I know it's the disc never mind what the bloody MRI says. A private appointment with a Neurologist is also still an option on my mind.So I'll look into the idea of "spacers".

Thank you for your kind words, I refuse to give up and to an certain extent that I'm ill which can be couterproductive. I'm a really practical person and logical and am finding it hard that there's no conclusive answer, I guess the brain and nervous system are complicated things! I feel very loved by all my friends who have been constantly in to visit trying to stay positive is tiring too, at least everyone on her understands chrnic pain.

Take Care!

Just read my post and noticed my awful spelling, haven't found a way to edit once written. As a teacher it grates to not be able to type properly, I'm just knackered!

Fi03229,

Yes the Cuada Equina symptoms improved, especially if I avoid sitting for long periods. Also long term use of Amitriptylene this is a side effect, which I didn' know. Please let me know how your appointment goes, I found the nerve specialists most helpful. It could be as they suggested to me memory pain. I watched a programme once about phantom limb syndrome where patients who had lost limbs in accidents were in accute pain as their brain was fixed at the point they lost their limb. They treated them with mirrors using the good limb and tricking the brain, it was most bizarre. If you've had a previous prolapse then that may be an explaination. That's not to say that the symptoms and pain are any less real of course!

Hope it all goes well, keep us updated!

Many thanks, I am counting down the days to the appointment. 

I am going read up on memory pain, as I did get a lot of nerve damage two years ago.

You mention about Osteopathies, be careful as I am not a 100% sure but I suspect that my large posterior disc was moved towards the Cauda Equnia area due to traction by a Osteopath. Could be a total coincidence but mention the position of where the discs are bulging or bring your MRI scan results on disc to them (the consultant's secretary can assist your with this?).

Also as the previous post mentioned that there are the possibilities of procedures such as spacers (? Fusion) but newer techniques are available such as artificial disc replacements which reduce the likelihood of problems at adjacent spinal segments. Part of the reason for my referral by the GP is to discuss about having a disc replacement at a more specialist centre. Also if you are interested about whether the discs are generating a lot of the pain (even without a bugle) there is a test available (Lumbar discography)? Normally they use as part of investigations prior to disc replacement or fusion surgeries. 

Take care 

Thank you that's all really interesting and gives me some hope. Still not convinced that it's not the L5/S1 disc despite the MRI but know that an operation is out of the question for me. My Osteopath is very qualified and his sister is a Orthopaedic Surgeon. I know him reasonably well as I used to plat badminton with him. He tried to treat me when I was pregnant when no one else would help. He has asked for a photocopy of the discharge letter from the hospital so he has all the up to date info before attempting treatment. I think he will be extremely careful and I trust him not to treat me if he can't help. Thanks for the advice!