What to do next; I'm desperate for help!
Posted , 6 users are following.
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 likes, 20 replies
helen10458
Posted
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
fi03229 helen10458
Posted
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!
max83505 fi03229
Posted
janette34023 helen10458
Posted
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.
helen10458
Posted
I'm so sorry to hear about all the frustrating issues with the nhs, I was experiencing similar issues until I developed cauda equine symptoms. It's utterly apalling to leave people in pain like this. I feel very angry as you must do fi0339, it's just not good enough. My only suggestion to you would be to go private for your initial consultation and then your could hopeful get on the nhs waiting list if you need surgery. That's the point I was at before I ended up in hospital. It would have cost £250, I also got a loan in case I needed surgery. That's how desperate I was, unfortunately that isn't an option for me.
other than that, the pregabalin is starting to work, I am seeing an osteopath and had some acupuncture which seems to be helping thank god! I have to say that pregabalin didn't start working until three weeks in and I'm on 375mg a day, it takes time to build up.
janette you're not bothering me at all
the surgeons at that hospital were excellent. They would have absolutely fixed me with surgery if they could have. Like other areas of the nhs they were very stretched, I waited in a queue of 60 to get an mri scan and if an emergency case came in, surgery for some patients was delayed. In terms of expertise they seemed very exceptional so I can recommend them not from personal surgery experience but from what I observed with other patients over three weeks. They weren't too concerned about back pain or leg. They only assessed me for surgery when I had complete foot drop and cauda equine symptoms, it was quite extreme !
I wish you both luck with your pain. Hopefully life will improve for us all I hope thats been useful. I'll update once I have spoken to orthopedic consultant maybe they'll have some other options to me! Try to keep positive , I know that can be hard , good luck !