Back pain and complications after surgery

[Megnstan]

Hi everyone

I'm finding lots of useful help on here and it helps to know I'm not alone.

I've had lower back problems for 5 years now which started after moving a child at school ( I work with autistic children)

At first I thought I'd pulled a muscle but it didn't go away and just got worse and worse . I got an MRI which showed degenerative discs from L4 L5 S1 bulging discs facet joint degenerative tavlov cyst spinal stenosis so many different things going on.

I've had lots of pain medication, injections nerve ablation ( which was horrible) months and months of physio but nothing has helped much.

Eventually I paid to see a neurosurgeon as I was going round and round in circles on the nhs. My foot started going numb which really worried me.

He looked at my most recent mri and said it was obvious I needed a discectomy at L5.

Unfortunately he wasn't the surgeon that did it and the one that did caused a severe csf spinal fluid leak which would heal by itself ( the surgeon said he had no idea how it happened and was very rude at first till there was proof on mri to show it)

I had surgery to repair it and 2 weeks in hospital unfortunately I was back in again with a deep spinal sepsis infection a week later. 2 more weeks in hospital on iv antibiotics and more surgery to clean out the infection.

I had a line put in so I could come home and have iv antibiotics for further 6 weeks and 3 months of tablet form.

After all this I'm 2 years on and pain in my lower back isn't good and leg pain too especially when walking and standing.

I had a second opinion in London who have just said surgery at the moment is too risky partly because of the infection history which they said could still be hanging around in the bones .

I have been offered a spinal cord stimulator trial so I guess that's my last chance.

It's been hard I was 45 when it got bad and I've had to drastically cut my work hours and very limited my family life as I'm sure you all know the toll chronic pain takes on your life.

Sorry for my long first post

[johnsmith]

Contact the AVMA for advice

avma.org.uk/

There is a time limit on medical negligence. I think it is three years after discovery.

[Megnstan]

I tried to get advice on compensation but infection and csf leak are risks of spinal surgery and although there were things that happened to increase the risk of infection they didn't think I'd have a chance of winning unfortunately.

[hosbay]

Hi Megnstan

I certainly know what you are going through. My clinical spinal history is not a thousand miles away from yours apart from the fact that your infection was post-op. whereas I had a discitis infection a year before my series of spinal events. My main problem area is at the bottom of the lumbar like yours is. I have been on all the usual medications which not appear to help me with the neuropathic pain. I have also had numerous scans, x-rays, examinations and tests by orthopaedic consultants/surgeons and neurologists plus physiotherapy, etc. I also had an operation to explore and decompress the L4/L5 sciatic nerve which has made no difference. I took a decision some time ago to stop all medication which had some bad side-effects (especially on memory, awareness and other cognitive functions) and which seemed to be doing very little to ease the neuropathic pain and nothing to address the underlying physiological defect(s). Instead of medication I have been concentrating on other factors to address my problem. I employ regular exercise, relaxation and mindful techniques and "listen" very carefully to what my body is telling me about my condition. I note and try to avoid or mitigate the factors which exacerbate the problems (e.g. certain activities, posture, clothing, anxiety and stress, etc).

By doing all this I find that I am now leading an acceptable life style with increasing durations of lower/tolerable pain and I find that when the pain reaches an unacceptable level (usually later in the day) an hour or so horizontal rest can reduce the levels of pain to acceptable levels again.

It is my belief now that medication can be counter-productive to a return to some form of acceptable life style. If pain is suppressed in the mind by medication (e.g by opiods, ant-convulsants, etc) then the factors which aggravate the spinal defect cannot be noticed or avoided and this can make the problem worse. I would like to stress that this is my belief based on my own experiences and is in no way a presentation by me of known or published medical facts.

You say you are being considered for a spinal chord stimulator (scs). I too am on the waiting list for this form of neuromodulation therapy but, if my condition does not deteriorate between now and when I am offered it, I will not have the procedure done. Th e reason I would not have it done is as I have said for medication.

I would like to say, however, that scs appears to be very effective in sciatic pain suppression. I have attended a couple of scs team meetings where previous implantees talk about their experiences and I have met and spoken to four who say it has been life-changing for them. Like all medical procedures, however, success is never 100% but I believe the success rate is quite high.

Good luck for the future

[Megnstan]

Thank you Hosbay, I have cut down some medication compared to what I was on I also find meditation helps relax me especially after I've been to work .

I desperately want to keep my job I love and I've been lucky they kept it open for me as I had a year off after the 3 operations and recovering from the infection.

But 2 or 3 hours is the most I can do and I have a day off inbetween.

If I lie still or find a comfortable partially sitting I can get the pain down it is with any standing or walking that flare it up. So the pain is from movement as it must be catching the nerve and I barely have any disc left at L5 at all where the discitis and osteomyelitis was mainly and I think some pain is from facet joints too.

I'm trying hard to accept that they can't fix any of it as a couple of times they seemed to think they could fuse then changed their minds.

I know I'm lucky to be accepted for the scs and they said im an ideal candidate so maybe it will help me. Then I can get off more medication and do more hours at work .

It's the waiting that kills me and the constant chasing things up or I get nowhere.

I'm 50 this year and they don't seem to give any idea what will happen in the future or if it will stay as it is or will it continue to get worse.

I am quite a positive person usually but its hard .

It's good to heard people get good relief from scs thank you for letting me know I don't know anyone with one.

Hopefully it won't be too long to wait after the MRI is done .

Take care and thank you for your help.

[waylay]

Hi there,

So similar... 11 years ago I ruptured my L5/S1 disc. Nothing helped, so I had a microdiscectomy. It cured the pain I had beforehand, but about 6 weeks later I started to have different pain. 10 years later now. Sigh.