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Assistance/help required, long post- complicated.

Posted , 3 users are following.

Daddyo
Daddyo

Hi all, I am new to this forum and am looking for some help or advice. Since 2009 I have had issues with my lumbar spine, it all started out of the blue as these things often do with major pain that floored me.

I will cut a very long and complex story short in the hope that someone might direct me somewhere that I might get some specific help.

I had three lumbar spine surgeries between 2010 and 2011. These have not been successful and have left me in constant pain and a lot of loss/changes of sensation in both legs. My legs are also now very weak, giving me severe mobility issues. I already have Rheumatoid Disease which causes mobility and other related issues, so life isn't exacly a barrel of laughs at the moment but one must make the best of it, my glass remains half full.

The whole thing has been further complicated by effectively being dumped by my original neurosurgeon when he retired, so after my last surgery in 2011 there was one follow up six or seven weeks post surgery, where I reported that there were still some major issues; I was told that they should resolve over time. I had expected a further follow up later in the year with possibly a further MRI just to get the lie of the land after the third surgery but, there was no further follow up!! I only found this out when I phoned his secretary to find out when my next follow up would be and was told that I had been discharged after my last appointment with the now retired neuosurgeon, well, retired from the NHS anyway!!

I then basically had to go back to square one and get a new referral. approached my GP in November last year reporting that I had been dumped and that I would need this re-referral.

Ok, I'll bring this up to date, I have a new neurosurgeon who actually appears to give a stuff, I had an MRI at the start of April but still await a follow up appointment to discuss the findings. In the interim though, I have managed to get a copy of the MRI report, it is not good reading, there are issues in the Cervical region, these will be related to the Rheumatoid Disease and were in some ways expected.

The Thoracic region appears to be ok but my lumbar region from L1 all the way to L5 is littered with some fairly major problems, all of which tie in with the symptoms I described to my new neurosurgeon.

L1/L2 Shallow posterior disc bulge causing minorcentral canal narrowing.

L2/L3 Posteror disc protrusion causing severe canal stenosis significantlycompressing the descending nerve roots in right para-central/lateral reces regions.

L3/L4 Persistant posterior disc bulge. Mild to moderate bilateralforaminalnarrowing. Moderate bilateral foraminal stenosis.

L4/L5 Bilateral spondylosis Grade I/11 anterolisthesis. Anterolisthesis and mild posterior disc bulge causing mild central canal narrowing. Severe bilateral foraminal stenosis.

The nerve roots of the cauda equina are buckled, particularly at the level of the L3/L4 extensive surgical change within the posterior elements and spinal tissue extending from L2 to L5.

All in all from a layman but also a qualified engineer's point of view, this would appear not to be a particularly healthy state of affairs and as I am still waiting for my follow up appointment with my neurosurgeon I really feel the need for some help and support, I found that patient.info has this forum and have placed this post as a starting point to gain some help.

Regards,

Daddyo

0 likes, 5 replies

5 Replies

  • Daddyo
    Daddyo

    Posted

    Bump. anyone?

    Just looking for some help, even just a link to a good site for people with spinal

    issues. life is absolute misery due to pain, heavy drugs (living on morphine). Any help or guidance would be geniunely appreciated.

    In desparation.

    Daddyo.

  • emilyc
    emilyc

    Posted

    Hi Daddyo.

    I happen to come across your post while doing some research myself about some spinal condition. I am certainly not a specialist in the spinal area, but being a doctor myself I can see that there are many severe narrowing and prolapsed disc in the lumbar region of ur spine. You must be getting a lot of pain from them .

    It also seems that from L2-L5 there are alot of post-op changes and fibrosis (scar tissues) from your previous surgeries.

    I came across this website which may be helpful for some reading : www.spine-health.com.

    I think the main thing now would be to achieve adequate pain control. Some suggest hot water bottle to the back for pain relief, you can give it a try and see if it works. You can try to see if you can get the appointment with the neurosurgeon any sooner, or suggest to your GP if a referral for pain clinic would be helpful?

  • Daddyo
    Daddyo

    Posted

    Hi and many thanks for your answer, I'll certainly give the spine-health link a try, as I say I am en engineer so am quite open to new concepts and making analogies between the body as a biomechanical system and many of the processing plants and their associated mechanical, electrical feedback loop and control systems I have worked with, it's truly amazing just how many parallels can be made.

    I have to admit in meeting defeat with using both heat and cold on my back to acheive pain relief, I think this is because the majority of the pain is now neurological.

    I have indeed been referred to the pain clinic but at this time we are making no progress. I have been on 1800mg Gabapentin daily split into 3 doses for 18 months now, the pain clinic introduced pretty much standard fare amatriptyline but this just descended me into a world of fuzziness, and rather unpleasant fuzziness at that with no difference in pain whatsoever. We then tried Nortriptyline but had exactly the same problem. I am due to try physio through the pain clinic but because of the relatively severe and currently active Rheumatoid Disease I am somewhat sceptical as to what this may offer me as the RD limits me severely in what I can actually do. That said I will be giving it my best shot, I need to gain some control over this pain to make life liveable, as said previously, this is an existence not a life at the moment.

    GP, Rheumatology consultant and myself have all been pushing the Neurosurgeons for a follow up post MRI, so hopefully pressure from the three of us may have some effect.

    Just going to look at the link you gave me though, many thanks for your kind reply.

    D.

  • tom84867
    tom84867

    Posted

    One thing you ma consider if you still have not reached a diagnoses is crowdsourcing medical professionals to help out. My uncle used crowdmed to post his medical complicated chronic autoimmune complaints, and the power of the masses narrowed his diagnoses... It's worth a try if nothing else works.
  • Daddyo
    Daddyo

    Posted

    Hi Tom,

    many thanks for your input. Since posting I have written an open letter to my GP outlining the issues that the failed surgeries have left me with i.e. completely life changing in a negative way. I genuinely believe that we have a full diagnosis of my situation but what I need is the healthcare system to lend me some useful assistance now. I am not a negative person, far from it, however, it is fair to say that the medical profession has left me in this situation, I do not believe that it is asking overly much fr them to offer me as much assistance as they can.

    Whilst my life will never return to what it was prior to the spinal surgeries, I do believe that the pain clinic that I was attending could have done far more than they did, the ultimate advice from them prior to being discharged was to enroll in a Tai Chi class, not the best advice to give to a man who can barely stand.

    My most recent MRI has indeed backed up all the physical symptoms that I have and yet the Doc at the pain clinic still insists that much of my symptoms are perhaps psychosomatic, a diagnosis that I find plain stupid when an MRI backs up symptoms.

    There are other options in the pipeline now thanks to my GP. Hopefully 204 will yield some results for me but I'm not holding my breath .

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