Lumbar, Back pain (No Diagnosis Given)

[FierceAngel00]

Hi,

I'm new here, I have only just discovered (Today) that a long-standing Back Condition I have is more than likely down to the Nerves Or Something to do with my Spinal Column being injured in my Lumbar Region nearly 20 years ago & Not my Actual Spine. That I needed to see a Neurosurgeon. I was never sent to see one! Although I did ask for a second opinion, Years later, My GP sent me to see another Orthopaedic Surgeon, Who also gave me an MRI Scan & Did a "Spinal Probe" (That made everything worse) at a different Hospital. He didn't refer me to see anyone else either! I just got the same thing the first guy said "There is Nothing we can do for you! You are one of the 5% that cannot be fixed" I have deteriorated so much now that I am trapped upstairs in my home as I can hardly walk anymore & I can't manage the stairs. I am in absolute Agony all the time. I was put on MST (12hr Slow release Morphine Sulphate Tablets) Starting dose of 60mg, Twice a day in 1998. I went up to 150mg, Twice a day over the 20 yrs, up until last year when my GP decided to Lower my dose/wean me off the Morphine altogether, As she thought it wasn't working anyway but had No replacement Pain Relief For me! Can anyone help me, please? I am looking for a Trusted Neurosurgeon that is good at treating Spinal Conditions in the UK and would really appreciate it if someone could tell me if there are any pain relief methods that truly work.

[LadyZebra]

Hi there! I truly sympathise with you because I am in a similar situation, in that, 35 years ago I fell down stairs and fractured my coccyx but apart from never being able to sit properly and/or comfortably, I just got on with life not realising the unseen damage which was progressing undiagnosedmisdiagnose?! Then 32 years ago I had a lumpectomy operation and upon waking from the anaesthetic reported pain in my neck and shoulder area which intensified over the period of a month, when I saw my GP and reported the pain, which was recorded as "C6 - C7 post op" and no investigations, examinations, etc. carried out and the GP said it was because my "breasts were too large"!! Over the period of about 3 - 4 years my physical symptoms intensified and I lost the use of my upper limbs, being told I had repetitive strain injury - I also lost my career, my salary, my pension, my marriage, friendships, not to mention my functionability. However, again, no credible medical investigations and, over the years whenever I presented to the doctors, I was told it was imagined, due to depression (I was only ever depressed because of the way in which I was mis-treated and because of financial difficulties, etc.) When fibromyalgia became 'fashionable', I was told I had fibromyalgia, even though no standard fibro tests were ever conducted. Then little by little I started to lose the use of my lower limbs, as I had and with the same symptoms as my upper limb impairments. Again, when I went to the doctors, I was told my symptoms were "bizarre" (I was also having other neurological symptoms eg, headaches, vision probs, dizziness, bowel and bladder and intimate impairments, to name a few) but was sent away as if it was all in my head. Then when ME/CFS became a "convenient label" for doctors to use in place of valid diagnoses, I was told I had ME but my persistence to attend a ME centre amounted to incorrect referrals by the GP and progressed to being told, simply, that a referral wouldn't be accepted. I could write so much but I am mindful of the readers time. So, to bring this up to date, I have accessed my GP notes and researched them extensively (I was a medical secretary so know a little anatomy, etc.) and after two recent hospitalisations for suspected cauda equina syndrome - the GP and A&E doctors made the suggestion (I'd never heard of CES) and the related pathology from 8 years ago supports such a condition has been and is present, however, beyond the A&E examination room, I am told there is nothing wrong with my spine. Furthermore, reports have been "taken off the system", as one doctor told me, and whomever I have insisted on seeing, neurosurgeons, etc., have only ever supported their peers opinions, which they have seen whilst accessing their earlier reports (in other words, covering up for each other?!) In all of this, I also discovered that brain abnormalities are evidenced by a private scan I paid for because the doctor who did a lumbar puncture told me that I have a 1cm brain cyst - he asked if I knew and, of course, I didn't, and when I requested that it be monitored I was told it wasn't to be. The private scan also showed a significantly enlarged lateral ventricle, very probably indicative of unilateral occlusion of the foramen of Monro probably from a blockage somewhere along the CNS but, once again, this has been dismissed and my character, yet again, questioned. Therefore, "Angel", it would seem that you and I are in the same boat without a paddle but what keeps me strong is the fight (although last night I felt my essence draining out of me with all the pain, loss of function, nowhere to turn for independent, impartial opinion - private or NHS?!, or even legal, etc...) Lastly, as a new member of this forum, I have also learnt from another member about a condition of spinal infarction - when I looked up my medical notes I found an entry from 30 odd years ago which reads "cortical infarction of the anterior wall of the S5" - a spinal or cortical infarction is a type of stroke (as I recently read when I researched after reading Francesca's post last week) and the symptoms are consistent with my own of all these year; of all these losses. So, if there is any help out there for "Angel" and me and anyone else who are being denied diagnosis - probably because somebody 'misdiagnosed', it would be very much appreciated. It couldn't give us back our loses but it may give us back a little self-worth which the medical profession has stripped us of?! Take care and be brave - I don't know what for but, I guess, just to survive xx