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Degenerative herniation, but no definitive diagnosis

DiShDDiSh Posts: 8
edited 06/11/2012 - 8:44 AM in Lower Back Pain
Hi, didn't really want to post this in the DDD section as I'm not really sure if thats what my outcome will be. There is a bigger blurb on me in the intro section but to give a very rapid run upto where I am, my issues started 2 months ago with intense back pain and an overnight admission for cauda equina syndrome. I had 2 mri's post that admission one without and one with contrast and a referral following those to a neurologist.

I've now seen the neuro who has basically told me that surgically for him I'm not a valid case and there is nothing he can do. I have a 4mm neurofibroma in the cauda equina which is going to be observed over/in the next year and the herniation. The herniated disc is at l5/s1 and the neuro described it as degenerative and black and showed on the screen picture of mri it wasn't impinging on nerves due to location, he wouldn't however though expand on what this meant for me as "its out of his remit" (I became quite familiar with that term during my appointment). He was a really nice chap, but I've come out of the appointment with two answers and more questions as I'm still in pain and now have to await a referral back to orthopedics via a gp as the UK funding within the NHS dictates thats the path (this is despite ortho referring me to neuro in the first place).

Does anyone have any idea of physically what I should expect? I'm still having to work and maintain a fulltime job as I am not entitled to sick pay from work and the pittance the government would provide is not enough for my family and such a situation would put us in debt (I've also another operation and min two days sick for another condition imminant so am trying to limit my no pay days).

I've not been told what I should or should not be doing and I work within a laboratory where there is an element of manual handling and without anything written on paper, I have a line manager that is not willing to believe I can't do the same as everyone else. As you can imagine I have no idea if what I'm doing is making things worse/better or even just keeping the status quo, though I do try to explain I'm not happy with heavy weights and get assistance at such times.

I was told initially when my back issue was imminent that I was to remain as mobile as possible, to this extent also I've stayed at work as it means I am forced to keep going rather than wallow in my own self pity at home (which I would do as I'm one of those people that just has to have something to do, give me the option of nothing and I quake).

I've also managed to put on 1.6 stone since my back issues started and am struggling to think of a way to loose this as my mobiliy at the moment is down on my previous level having been advised not to do any, I've not had the all clear. Obviously I don't want to continue putting on weight but as I can't do the same level of excercise I did, I would like to do something to help before I keep increasing in size.

I was due to see PT prior to neuro appointment but I was then told neuro team would take over, of which now surgeon there doesn't want me I'm back in limbo on that too as I cancelled last PT appointment due to neuro.

Sorry realised this is all a bit higgledy piggledy so sorry, I struggle to get a point across atm due to medication ramping of pregabalin which makes me a bit fuzzy headed when the dose is going up, til it settles (sorta).

If anyones been through a similar situation I'd be grateful for the input as I won't get an answer from my gp for two weeks til neuro letter arrives with him.

Thanks in advance

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