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

Bones, joints and muscles
1

Hopefully someone can give me suggestions of what to do next, I'm at my wits end! Three years ago when I was 12 weeks pregnant my discs in my back went after getting up suddenly in the night to see to my daughter. To cut a long story short I had an MRI which showed disc prolapse L5/S1 and L3/4. Being pregnant at the time was hell on earth as I couldn't take painkillers, I had two nerve root block injections which didn't work and couldn't walk for seven months.

After I had my son the pain was better (very briefly) and it wasn't long before it was chronic again. This time I started all the meds full on, I was told by my Consultant that it wouldn't get better until I stopped lifting my baby.This was three years ago and the pain has never gone away, I have been on pain medication the whole time and had been able to work again full time (I'm a teacher) as long as I modified my life.

For the past six weeks I have been off work with horrendous sciatic pain in my foot (can't wear a shoe) and unable to stand, sit or walk for more than 5 minutes. Stairs are impossible and my GP is concerend I'm losing the use of my foot as I have "foot drop" and problems with balance, they have given me crutches.

Despite an urgent referral from my GP to see a Consultant I rung the hospital to be told I had a three month wait. When I said that this was an ongoing issue and not a new problem she said if it was that bad to go to A&E. On Monday I did just that and was left on a trolley for four hours whilst they stuck pins in me to test for sensation. I spoke to an Orthopaedic consultant over the phone and he said he would refer me for an "urgent" MRI which I now discover may take 12 weeks to materialise. Once they established that I didn't have Cadaue Equine syndrome they sent me home with more tablets.

I am at the end of my rope with this, I've tried ringing the hospital but am getting treated like I'm a nuisance and in the meantime, my children don't have a Mother that can function and my Husband is my carer.

I have booked a private Consultation for the end of the month but really object to paying when I should be seen through the NHS. Also worried about the expense as I'm the breadwinner in the family and my Husband a stay at home Dad and we can't afford a big expense as I'll soon be on SSP. I am worried I'll be in constant pain forever and that I'll lose the use of my foot and leg completely, I haven't been able to drive for some time.

What can I do to move things forward? I am on every med; tramadol, amytriptylene, diclofenac and am taking anti- sickness meds as the pain is making me so nauseous. I get about three hours sleep and am barely functioning, I feel so sorry for my poor children. My youngest is 2 and he doesn't understand why I can't play with him. I've been unable to leave the house except to see the Doctor for the past six weeks.

If you've got to the bottom of this post thank you so much for listening. Any suggestions or shared experiences would be a lifeline just now!

Helen

2

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.

3

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. 

4

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 .

5

Helen,

As per previous post you need to see a nuerosurgeon &not 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.

 

6

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.

7

Hi Helen,

I have done loads of research into good hospitals for spinal issues and Glasgow has a great reputation. Keep positive (difficult) you now know that you cannot and will not accept beng "fudged" off (this is your body and too important). Seeing a neuro. in Glasgow will be a positive step n the right direction.

Keep us posted on your progress.

8

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.

9

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!

10

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.

11

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

12

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!

13

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!

14

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!

15

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 

16

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!

17

Hi there,

I saw my Osteopath today and he performed traction on L3/4/5 S1 and it was like flipping a switch no pain in my leg or foot. Let go, there it is again, so now I know it's my discs causing the nerve pain and foot drop despite the MRI showing no nerve compression. I knew it dammit!!!!!

So will be seeing another Orthopaedic consultant in a few weeks as my original referral appointment has come through. The Osteo said they need to MRI scan you standing or sitting to get a true picture of compression. I know that surgery isn't an option for me but if it is the discs then certain excersises will help. I am having some accupuncture next week so will let you know how that goes.

Coming off all the drugs they increased in Hospital has been hell! The worst PMS you can imagine and it goes on and on. I am unintentionally trying to fall out with everyone close, my dad my husband, kids. Feel so angry that I can't do anything like drive to the shops or take the children out and hate being so dependent on others. I hope that the Pregabalin works when it's increased to a larger dose. I'm a bit concerned about the side effects especially weight gain as I'm curvy already. If it gets rid of the pain at least I'll be able to exercise again.

I'm learning the hard way after having visitors every day last week, that I need to let people know how bad this is as I need their support. I tend to put on my makeup and look completely normal and laugh it all off, my Hubby pointed out to me that everyone goes away thinking I'm fine and then I get really distressed with the situation. So I'm trying to learn to be a good patient, don't overdo it, take each day as it comes, let others help, let my friends really know how this is effecting me, don't pretend it's all ok. I was doing well, think the reduction in meds is sending me a bit doolally! How are you all doing? Any progress or updates?

Helen smile

18

Hi,

I know it can be difficult time adjusting to find the right pain management and I hope that the pregabalin is starting to work?

when I had acupuncture two years ago it did make a positive difference to the pain levels. The acupuncturist also put these "hot cups" on my back which also believed to be beneficial? 

I am at the point of giving up hence why I have not been posting. It turns out my appointment with the specialist for next week has been cancelled. When I rang up to enquire they advised that I have been the transferred to another surgeon. In the process they rang my GP for the referral to be re- faxed to them as now they are suddenly not paperless (but ? accepted the original referral via the choose and book electronic system) and now I am put at the back of the waiting list again for the new surgeon with no appointment in sight. I explained I am getting Cauda Equina signs with some now persistent (saddle numbness) signs. The new surgeon's secretary confirmed that the re-faxed referral did mention about the Cauda Equnia symptoms but that the urgent request was put on the electronic referral but not on the accompanying GP letter that went with it and which was then later re-faxed. I could not make this up, if I tried. It appears that this new hospital in an attempt to reduce their waiting lists are accepting electronic referrals to begin with, only to cancel and demand the referral be re- sent and start the wait time from that date? I have called and attempted to speak with my GP about this situation but I am starting to feel I am been treated like a nuisance patient. I have not attended or call my GP over the two years since my surgery only collecting repeat prescriptions. I am articulate and professional person but it seems to make no difference and that I have little rights or autonomy in the NHS. 

 I am tried, in pain and the constant worry about the Cauda Equnia symptoms means I am at the brink and don't know I much more I can take. Does any one have any suggestions as I am at a lost for what to do! 

19

Hi mate try pregablin 150 mg knocked you out but takes most of the away, I just had facet joint injections last week, it's taken some pain away mostly the heaviness in my legs fr my scatica .but the back pain is still there . On a serious note made the pain bearable and I had a gd night sleep with it. I've had this 4. Along time so know exactly wat u r going through hope things work out

20

hi helen,

i was interested to read your post and sorry to hear of your misfortune.i went online today after seeing the report from my mri scan..my pain has been ongoing for at least 20 years and has gradually been getting worse and worse..the pain in my left buttock is now unbearable.mri shows prolapsed disc at L4-5 and nerve root irritation at levels L3-4  and L5-SI.I have been refered to a neuro surgeon at the southern general hospital glasgow with the view to surgery....i would welcome your opinion on this...i have been taking amitripyline for years with naproxen..have also been on gapapentin for 4 months with the varying tramadol,co-codamol ect..none of which is releive the pain.hope i am not bothering you.