Pain really getting me down — Scope | Disability forum
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Pain really getting me down

Spursboy
Spursboy Community member Posts: 23 Connected
I have suffered with back problems for the past 20years which over the last 7/8 years have gradually got worse.
It started of with pain in my lower back which was helped by regular trips to a Chiropractor.
This allowed me to continue walking with my local walking group.

But slowly over the past 7 years the pain has gradually worse with pain in my lower back, down my right leg plus both feet are numb.

I had an MRI scan November 2015 which showed problems at L5/S1 which causes moderate stenosis compressing the L5 nerve root.
Feb/2016 had a nerve block injection, this had no effect.
Pain management tried Pregabalin and Gabapentin, both did not help.

Pain was so bad now that I could only walk comfortably for 10mins, therefore walking group came to a stop.
Had a private consultation with a spinal consultant who made his own diagnosis of the MRI scan, which was that degenerative scoliosis was producing narrowing @ L4/5 and L5/S1 plus grade 1 spondylolisthesis @ L4/5 level. He suggested a lateral recess decompression surgery which I had December 2017 see his report below.

Result being that the surgery made no difference and the specialist said that I would have to learn to live with it!

Have tried living with it but GP sent me for a further MRI scan June 2019, followed by another nerve block injection, which also has had no effect.
GP now also says that I will have to live with it.


The pain is slowly getting worse sometimes stops me sleeping.
Also My main concern at the moment is that the numbness in my right foot is getting worse and is now making driving difficult in that It is hard to feel my foot on the accelerator pedal.

Any thought or suggestions would be welcome? 

Specialists report:

The underlying reason for the leg pain is likely to be related to spinal stenosis but I have explained to him that the long standing low back pain is likely to be related to the aging changes of the joints in his lumbar spine and that realistically there would be no good surgical solution to get rid of the lumbar back pain.

 His lumbar MRI scan shows scattered aging changes throughout his lumbar spine. He does have evidence of a degenerative scoliosis with the apex in the mid lumbar area convex to the right and there is a fractional curve below with the concavity facing the right side. The degree of scoliosis is not marked but is sufficient to produce foraminal-narrowing at both the L4/5 and LS/SI levels on the right side. However the foraminal narrowing at L4/5 produces L4 roòt‘ entrapment and he does not seem to have any relevant L4 symptoms. He also has a Grade 1 degenerative spondylolisthesis at the L4/5 level and not surprisingly there recess Stenosis which clearly would produce the L5 nerve root symptom. At the LS/S1 level he also appears to have a small disc protrusion which encroaches to the traversing S1 nerve root and he has a mild degree of lateral recess stenosis at L5/S1 as well so that it would be difficult to tell whether the current leg pain is also contributed to from the LS/Sl level.

 Assuming that his lower extremity symptom is primarily related to the lateral recess stenosis at the L4/5 and LS/SI level, the main surgical option would be to decompress the lateral recess and being an anteroposterior decompression it would be relatively straight forward However, doing so would not be able to address the foraminal narrowing and there is a possibility that he can develop subsequent L4 root symptom and if that becomes a problem surgical treatment would be rather more difficult as it would involve at least a total facetectomy and in situ fusion be best addressed by an interbody fusion, which clearly is an even bigger undertaking.

I have explained the pathological anatomy at some length and the nature of surgery that may be involved at some length. I have encouraged him to persevere with conservative care but he can let me know otherwise if he wants to proceed and consider a surgical solution with a lateral recess decompression and I will put him on my waiting list on receiving his transfer form.

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    Hi @Spursboy I'm sorry to hear about how your back pain has been impacting you lately.

    I'm concerned you say it's hard for you to feel your foot on the accelerator pedal, is this something you've spoken about with your GP and specialists?

    You mention when the pain began you had regular trips to a chiropractor which helped, is this something which would still be effective now? What do you find helps reduce the symptoms the most?

    I'm not a medical expert, so I can't comment on the specialists report here, but perhaps some of our users have had similar experiences. I've tagged this post as unanswered so it can be easily found.

    If there's anything further we can help with, please do let us know.

    Alex
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  • Spursboy
    Spursboy Community member Posts: 23 Connected
    Thanks for your reply.
    Regarding the numbness in my foot it was the Chiro who suggested I had a MRI scan as he felt that he was unable to help any further.

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    You're welcome @Spursboy

    Okay, is an MRI something you feel would help?

    Perhaps you can discuss it with your GP or specialist, and explain how the numbness you've been feeling has developed, and how the Chiro is now unable to help.
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  • Spursboy
    Spursboy Community member Posts: 23 Connected
    I have already had 2 MRI scans followed by various injections and an operation to free the nerve, all of which has not helped and now its getting worse, especially the numbness in the foot and lower leg.
    GP and Hospital just tall to learn to live with it!!
  • Spursboy
    Spursboy Community member Posts: 23 Connected
    Thanks for your comments Anabel.
    My GP has referred me to the Pain Clinic a couple of times and they have tried various injections which did not help and they seem to have given up on me, recently I was referred again to the pain clinic but now days you have to go through the Physio department first here in Devon and they told me there was no point as the pain clinic had tried all they had to offer, so I seem to go around in circles.
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Anabel said:
    Hi Spursboy

    I was recently told by rheumatology that they could do no more, but I still have a few more sessions with the pain clinic left and have kept the exercise sheets and have found that the breathing techniques and the exercises really help me. I try and keep positive, busy and moving, despite using a wheelchair to get around and crutches.Sometimes I do the exercises on the bed when I cannot get up!Housework even doing it sitting down or with perch chairs is another good idea.They told me it was a question of just keeping moving and exercising their motto ''if you don't use it you lose it''(I want to avoid further atrophy). I also had to change my diet as well.
    I cannot have anymore steroid injections (too much bone deminerilization) and the painkillers are causing havoc and other issues.With me moving and exercising is key.Not sure if you have a garden-I find gardening very relaxing and distracts me from the pain and I feel better after being outdoors and shifting and moving around.My ank spond is chronic and progressive/no cure but life is what you make of it.Music is another great distraction from pain for me/crosswords.Like myself some-times there is nothing that can be done but it does not mean that you cannot try and live as normal life as possible.I have started looking for social groups and started hobbies.It is not nice being told that there is nothing else they can do as I was but perseverance is key.
    I must say that strengthening the muscles around my spine have reduced pinched nerves and pain.
    Just a thought- ankle stints would be great for your driving and help with the sensory issues.I am taking refresher driving lessons early next year so that I can get out more (and load the wheelchair in the boot).The ankle stints provide strength and allow me to know exactly where and what my feet are doing.
    Good luck.

    Anabel

    Hi @Anabel

    Thank you for sharing your pain coping strategies :) I hope this is helpful for you, @Spursboy?

    I understand when you mentioned about keeping 'distracted' and less focused on the pain. It's great that you have found suitable activities to do this. I have endometriosis and I struggle with daily pain, but I do find breathing techniques to be really helpful in calming my nervous system. This actually helps ease the pain for me. I also love hot water bottles and I find eating an anti-inflammatory diet helpful too.

    @Spursboy, are there any activities that you have in mind, that you think could help distract you from experiencing pain etc?

    Libby
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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Anabel said:
    Hi Libby
    The hot water bottles I forgot about those,normally one in mid spine,one on shoulder and one on right thigh.My Ank Spond has given me awful problems this year,oesophagus and is now affecting my stomach.Not good.That said I try and remain positive but I always have down days when I feel completely overwhelmed.I am looking for a cleaning lady,thought it would be a great idea,take the pressure off me when the housework mounts up,there are also things that I am starting to strugge with.
    Remaining positive is key.Do you ever feel overwhelmed with your disability?Sometines I do and not knowing how my Ank Spond will progress frightens me at time.Having to run a home and stay on top of things and the financial stress sometimes is a huge wight on my shoulders and I have days when I panic about the uncertainty of the future.

    Anabel
    Thank you for getting back to me @Anabel :)    

    I'm glad you use hot water bottles too. I find them so comforting and I also like to sleep with one! I'm sorry to hear that you've been having problems with your stomach and esophagus too. Do you have a good specialist management team at the hospital?

    That's completely understandable and it's okay to have down days. I also have these dull days too, but when I do have them, I just remind myself that this feeling is temporary and tomorrow is a new day :) I think getting support with cleaning is a great idea, it might also help you reserve some physical energy which is always helpful. 

    It's great that you choose to adopt a positive mindset. I definitely feel overwhelmed some days and that's completely normal. I also fear certain things but I think it's important to focus on what you can control in the current situation and as difficult as it might be, focus on the present moment. Do you have a good support network that you can lean on when times are a little challenging?
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  • Spursboy
    Spursboy Community member Posts: 23 Connected
    Many thanks Libby & Anabel for you encouragement and comments.
    Hobbies, yes some years ago I had a go at watercolours and also built a small model railway which I eventually sold, I suppose to be honest I have in some way just not bothered and seeing what you both have suggested I need to make the effort and get started on one or the other in the new year.
    Non of my pain killing tablets seem to make any difference so it seems perhaps that exercise may be worth looking into, I did have some exercises suggested years ago but they also did not appear to help but I will give them another try.
    By the way what are ankle stints, put that in google and got many odd answers?
    Thanks again,

  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Spursboy said:
    Many thanks Libby & Anabel for you encouragement and comments.
    Hobbies, yes some years ago I had a go at watercolours and also built a small model railway which I eventually sold, I suppose to be honest I have in some way just not bothered and seeing what you both have suggested I need to make the effort and get started on one or the other in the new year.
    Non of my pain killing tablets seem to make any difference so it seems perhaps that exercise may be worth looking into, I did have some exercises suggested years ago but they also did not appear to help but I will give them another try.
    By the way what are ankle stints, put that in google and got many odd answers?
    Thanks again,

    Hi @Spursboy :)    

    Oh nice! It seems like you're very creative?! When you feel that the time is right, you should definitely try and pick up the watercolour brushes again. I think art can be such a great form of escapism for a lot of people. I think it's just about doing your best with the resources that you have :) if you'd like to start some exercise, maybe start slow and inform your hospital management team/GP about it. 

    I'm not sure if @Anabel meant ankle splints? If she did, there's a few options on Amazon that look good :) I've linked the ankle splints here. 

    I hope that's helpful. 

    Libby
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    Scope

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