Undiagnosed and rare conditions
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No diagnoses, fobbed of by doctors

KatsuKatsu Member Posts: 5 Listener
Hi all.

I'm just going to jump straight in. Nearly 16 years ago i had an accident whilst trampolining at school. I landed a move badly which resulted in a temporary paralysis (literally only 10-15 mins until I could move) and I have had severe back pain ever since in L1,L2,L3 area and L5,S1,S2area. 

A few months after my accident, when I was 15, I was still complaining of back pain so was referred to a "specialist" who just poked my back and told me to do physio. No test, scans or xrays were ever offered.

8 years after this I was so fed up of continually going back and forth to the docs and having pain meds thrown at me I lost my cool at the doctor and eventually they agreed to do an xray. Aparantly xray showed no abnormality so I was told to go for more physio, despite having rounds of physio constantly for the last 8 years, which does nothing.

Fast forward to 2021, countless visits to docs, thousands of pain meds taken, private osteopath visits, I broke down and threatened to kill myself  because if been in pain for 15 years and I can't do it any more. If i go another 15 years I'm still only gonna be 45. The doctor agreed to an MRI and after 3 weeks waiting for results, yesterday I was told he was happy with the report and no further investigation will be given. 

I was shocked and requested a copy of the report and I dont understand how he thinks there is nothing left to investigate. The report stated:

1) An incidental note is made of heamangiomata in the L1 to L3 vertebral bodies. 

2) minor disk degeneration at L5/S1

3) minor facet joint degeneration

4) posterior disk protrusion with annular tear, but it is not compressing the nerve root.


I mean, come on!! 


Does anyone know what this means because you can't go by what you find on Google and I don't know what to do anymore. I'm so tired of being in pain and I'd much rather just end it all, once my son has grown up and no longer needs me, than continue on like this.

Replies

  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    It’s prohibited to give medical advice on here so we’re severely limited in what we can say. However, I too have 1 to 3 of your diagnosis so I can at least comment from my own diagnosis. At its worst I couldn’t stand without discomfort and I would buckle and need to collapse to the floor or a chair. Couldn’t stand for long. Couldn’t sit without constantly needing to move. Was on regular non prescription painkillers 25 hours a day. Couldn’t bend to plug in a plug or stretch upwards without needing support. Was told by one helpful private physio covering for my usual one that I’d best get used to it as it was degenerative and would eventually put me in a wheelchair. I currently have near zero pain; know what triggers it and can fix anything which does trigger it within a couple of days. I have a full range of movement. 

    Like you I couldn’t square the diagnosis of relatively minor spinal damage (in my case a misdiagnosed football injury from 20 years earlier) with what I was seeing on the x Ray and MRI. Like you I was temporarily paralysed and ended up in hospital. My diagnosis was absolutely spot on. What was not spot on was the management advice.

    So, in my case, the paralysis was simply the reaction of the muscles surrounding my damaged disks. They close up tight and give the appearance of a very large muscle spasm (which was the diagnosis as soon as I began to move again). In some people the muscle spasm causes paralysis and in others it does not. It depends what it’s up against. Hurried medics see muscle spasm. Thoughtful ones see further.

    The damage described is minor damage by medical standards but can cause significant pain only if you’re given poor advice on managing it. The heamangiomata is described as a small benign tumour which sounds worse than it is. Basically it’s a tiny sack of water or puss. They sometimes appear where gaps appear between discs where there wouldn’t ordinarily be gaps. You can have surgery on your spine to fix the damage and/or remove the tumour but most people decide that the risk of permanent damage from the surgery is too high. That was my conclusion and I’ve seen nothing to change my mind. 

    Now, here’s the thing. The NHS physio were useless. Barely hands on. Working their way through a check list of options but not actually listening to what I was saying i.e. that hands on worked. I only made real progress when I got a rehab physio at the end who worked on the floor with me and found two exercises which if done for 20 minutes at a time made some difference. I then found a private physio who was quite aggressive and that was exactly what was needed. It took her 6 weeks to do what the NHS couldn’t and bring my pain down and another 2 weeks to stabilise me. My first episode lasted 9 months thanks to NHS gate keeping delays and incompetence. The private physio was the person who ended it. My second episode saw me go straight back to her and the episode was done by the 8 week point. Longest episode I’ve had since then lasted maybe 2 weeks and involved pain levels of maybe 2 to4/10 compared to the 8 out of 10 I was previously recording. 

    I know someone with an identical diagnosis to me. They’re on high levels of morphine and walk with a stick and constant fear of falls of which there are several. I take nothing and am fully mobile. I’ve not seen my physio in 7 years. The difference?

    I did the 2 or 3 main physio exercises 5 times a day for at least 20 minutes at a time. If the TV was on in the evening I would lie there and exercise for an hour or more. After a year of that I could function fully and get away with doing 2x 20 minute sessions but I couldn’t not get away without not doing it at all. I then lost stone as I had a physio honest enough to say “no you’re nothing like overweight but if you do this you will see a huge difference”. Never a truer word. Finally I had a gait assessment at the suggestion of my physio. I was supposed to wear orthotics for 2 to 3x per week. Within 2 days I realised my 2 out of 10 was down to zero and I’ve worn them ever since. Latterly I realised that I could replace physio twice a day with 10 minutes on a cross trainer on the garage. I hate cross training but given the choice between that and physio it wins every time. During lockdown I’ve switched to an hours walk and I’m up to 4.7 miles an hour now. I can mow the gardens. The only risk I can’t take are a heavy rucksack or heavy bags of anything. If I do either of those then there’s no choice but the cross trainer and maybe physio on top until it’s sorted. Recently had an update on my spine. The disc deterioration has worsened considerably. Doubtless it will one day catch up with me but right now I wouldn’t know it at all. 

    The other person I know. They went to physio once a week and did the exercises when the pain was worse than it usually was. When the pain was really bad they didn’t do physio at all because it hurt. My physio told me that within reason I should do the physio whether I was in pain or not and should never use the pain itself as a reason to not do it. Best advice I ever got.
  • KatsuKatsu Member Posts: 5 Listener
    Thank you. That's given me more hope than 15 years if GP visits. Il definitely look into private physio if there is a considerable difference between the treatment.
  • Tori_ScopeTori_Scope Posts: 5,644

    Scope community team

    Hi @Katsu :) Welcome to the community.

    I'm really glad that mikehughescq's comment has been so helpful! I've also sent you an email from [email protected], so please do take a look when you get a chance. 
    Online Community Coordinator, she/her

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  • QueenofdisabilitiesQueenofdisabilities Member Posts: 91 Connected
    Hi Katy ring your dr & ask him/her to go through the report with you.
    Telling you exactly what the repor means.
    That way you will know exactly how things stand & a massive weight wil be off your shoulders bless you sweetheart 🐈🐈‍⬛🐕‍🦺🦮.
    Let me know exactly how you got on ok?
    Take care hugs xx
  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    I suppose my main message here could be summarised as:

    - I didn’t know but wouldn’t be surprised to learn that your diagnosis is accurate in every respect.
    - it’s not unusual for minor issues to have major consequences.
    - how much pain you subsequently have will not depend solely on having a good physio. It will depend on you doing whatever they ask more than they suggest you need to do it and doing it even if it hurts a bit.
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