Back trouble!

dibdab
dibdab Member Posts: 1,498
edited 19. May 2019, 08:25 in Living with arthritis
Hello all.
I've been AWOL for a while but have a reasonably good excuse. I went to South Africa with my daughter and enjoyed an amazing week on safari in and around Kruger national park, it was one of those dream holidays you long for , and when you get there it's much better than you can possibly imagine. We then moved on to Cape Town for 4 days, but 2 days in I developed the most excruciating back pain which meant I couldn't stand or walk, even lying down and sitting were painful. To cut a long story short I ended up in hospital for almost 3 weeks waiting for a medical evacuation home.


Scans showed I have collapsed vertebrae in my lower spine(lumbar region) with 3 slipped discs pressing on the nerve roots-hence the excruciating pain. I'm now home awaiting the spinal surgery- my GP referred it as urgent on 12th April and I still haven't heard anything :oops: , so on medical advice I spend most of my day sitting or preferably lying flat to take pressure off the nerves, and use crutches to potter around the house or a wheel chair to go out. Having experienced the chaos of an African hospital I was longing for the good old NHS, it's an amazing blessing to us all, but now I'm stuck in ever increasing queues to be seen, and hopefully eventually to get surgery, I'm so frustrated.


I was wondering if any of you lovely folk could offer me any insights or reassurance regarding the kind of spinal surgery I might need, or the period of recovery involved. As you can imagine I'm bored, frustrated and not a little fearful of what the future holds, my lovely family currently are wrapping me in cotton wool because they're worried, and I don't know what my limits are, even standing without crutched causes pain, despite the small mountain of pain relief I'm taking, and sitting makes the base of my spine sore. Needless to say we'll be chasing up the referral regularly , we pondered looking at a local private hospital but sadly the cost is prohibitive, and essentially I'm very uneasy about using private health care to queue jump. In addition to all that I'm fighting with the travel insurance company to recover the £20,000 we paid upfront for medical care in South Africa...…..having discovered quite how intimidating it is to lie in a hospital bed with 2 members of staff standing beside you asking for payment before you can have more treatment! :cry:

I'll try to catch up on what's going on with you all, but it may take a while.

Deb x

Comments

  • stickywicket
    stickywicket Member Posts: 27,223
    edited 30. Nov -1, 00:00
    I hope you find someone who has had Spinal surgery, Deb. I know that a lady at our church is currently making a good recovery from it though it is taking longer than she had hoped. I can enquire once I'm home from here - California.

    I wish you the best with your insurers. Having just forked out a ridiculous amount to Messrs Shylock and Co simply to spend 3 weeks with my son, I can't imagine what they charged you for a safari. A hugely scary experience. Good luck with all that has resulted.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am so sorry dibdab, what an awful end to a fabulous holiday but these things happen. I wish our NHS charged upfront for non-qualifiers but it doesn't have the cojones. I daresay you will have a very long fight with the insurance company, they charge the earth and then bitterly resent paying out, relying as ever on the small print which no-one reads but possibly states that you will never receive a penny no matter what. I don't recall anyone on here who had back surgery but maybe they will see your post and reply. Take care, do the best you can for you and keep us updated. DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks SW and DD. I'm sort of adjusting temporarily to life with crutches in the house and a wheel chair out of it, I've noticed how people stare as if trying to work out why , apparently looking relatively happy, I'm sat there being pushed around. My lovely hubby is beginning to become acquainted with the kitchen, he's become quite expert with the laundry, and has mastered making porridge and egg sandwiches! :lol: Our son rocks up periodically with home made soup, bread and pasta sauces-hubby can boil pasta quite proficiently too.

    I'll update as I have any further news.

    Deb xx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Things go from bad to worse. Yesterday I learned that the orthopaedic consultants triage GP referrals, and because my MRI report is an overseas one they won't accept it so my case has been downgraded from urgent to routine. It will be at least 12 weeks for an initial clinic appointment, then a wait months for surgery-the NHS website shows waiting lists for surgery here in the midlands is anything up to 34 weeks. :x

    I am beyond disappointed. Yesterday I was weepy and forlorn, today I am resigned to plodding on as I am, but hubby currently has compassionate leave of 2 months to look after me, after that I'm going to have to fend for myself in the day time so I'd better start getting more active now to find out what I can do. My consultant in South Africa said no bending, twisting or lifting, and I should be resting for up to 23 hours a day to protect the compressed nerves.


    The NHS is a national treasure, but it is starved of resources, and you don't realise just how broken it is until you end up on the waiting end of the crisis. I hear a lot of the inside story from my son and his partner who are hospital doctors, and they tell me that doctors are bailing out and going abroad because of conditions they work in and the intolerable pressures, suicide rates amongst doctors is alarming. It's really frightening when you need that help to hear those stories. :oops: :oops: :cry::cry:
  • stickywicket
    stickywicket Member Posts: 27,223
    edited 30. Nov -1, 00:00
    True the NHS is in a total mess. One partial solution, offered by Mr SW, is that no docs should be allowed to work overseas until they have 'worked off' the 6-7 years it took to train them. I don't know think I have a problem with that.

    I can see that your orthopaedic man might feel that resting for 23 hours per day would be good for the back problem but surely very bad for everything else? I think your own solution of tempering rest with tackling essentials is a better one.

    I can also see that foreign docs' interpretations of MRIs would be inadmissible as foreign docs can't just come over her to work without ensuring they are 'up to NHS' standards but I do think your GP could and should tell them to 'get a shift on' as mine did recently for a similar orthopaedic wait.

    Just remembered.'Nearlybionic' has had back surgery. Maybe a PM?

    Sorry, got to go. Famiy about to descend on us.
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Dibdab,

    I'm really sorry to read of your troubles. One thing I always do when I'm referred for anything (whether it's consultation or tests) is ring the relevant Department/person and ask to go on the cancellation list. It usually cuts a fair chunk off the wait, but you do have to ask for that, and regularly ring in to see if there have been any cancellations. Again, I did that once and a cancellation had just come in - I grabbed that slot when it was offered to me.

    I will ask - and apologies if I offend - but can you afford to get a private MRI? If you do that, you'll be given the reports/scans and can take them to a clinic appointment with you. Be mindful though, that should you go down the private route, those scans are your property so you should hang onto them safely.

    It may also be worth you contacting your Local Adult Social Services as, under the Care Act, you are entitled to an assessment should you ask for one. They may be able to assist you with some care/assistance, although here in Kent all such assistance is always subject to a financial assessment. If you use an internet search function and pop in "XXX Adult Social Services" that will take you to your local County Council website, then look for Adult Social Services - there should be a phone number there.

    I hope things improve for you as soon as they can.

    GraceB
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Dibdab,

    I'm really sorry to read of your troubles. One thing I always do when I'm referred for anything (whether it's consultation or tests) is ring the relevant Department/person and ask to go on the cancellation list. It usually cuts a fair chunk off the wait, but you do have to ask for that, and regularly ring in to see if there have been any cancellations. Again, I did that once and a cancellation had just come in - I grabbed that slot when it was offered to me.

    I will ask - and apologies if I offend - but can you afford to get a private MRI? If you do that, you'll be given the reports/scans and can take them to a clinic appointment with you. Be mindful though, that should you go down the private route, those scans are your property so you should hang onto them safely.

    It may also be worth you contacting your Local Adult Social Services as, under the Care Act, you are entitled to an assessment should you ask for one. They may be able to assist you with some care/assistance, although here in Kent all such assistance is always subject to a financial assessment. If you use an internet search function and pop in "XXX Adult Social Services" that will take you to your local County Council website, then look for Adult Social Services - there should be a phone number there.

    I hope things improve for you as soon as they can.

    GraceB
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Grace,

    I'm ringing the hospital tomorrow to ask about progress, so I'll ask about the cancellation list, it isn't something I'd thought of before, thank you. I'm also considering talking to the patient liaison department to see if they can suggest anything.

    We took my mum out for afternoon tea at the garden centre today, it was a lovely treat, but really bizarre both of us being trundled around in wheelchairs. :oops: I bought mine 2nd hand and it's surprisingly comfortable, it's got big self propelling wheels so I'm hoping to maybe be able to trundle with a degree of independence if it doesn't make my back any more sore......not really something I thought would be an ambition at this stage in life. :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, how are things going? I've been thinking of you and hope it's all not too bad. DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi DD, thank you for thinking about me in the midst of your own dross- arthritis is just rubbish. My rheumatologist advised stopping my RA meds in preparation for surgery (hopefully) so other stuff is now rumbling away and swelling up- if it's not one thing it's another.

    Thankfully the stupid amount of pain relief is keeping me comfortable(mostly), but having an interesting effect on the inner workings to put it delicately! :oops: :oops: :lol: lactulose has become my new best friend.

    After considerable nagging by our GP, and me badgering the PA to the consultant, I've just had a phone call offering me an appointment in outpatients tomorrow with the orthopaedic consultant. The neurosurgeon was adamant surgery was the only answer, so I'm hoping the orthopaedic man thinks the same and can do something to make it happen before too long. Not confident because the internet suggests waiting time for similar surgery in our area is upto 34 weeks! :(

    I hope things begin settling back to moderately grotty in your world really soon. xxx
  • stickywicket
    stickywicket Member Posts: 27,223
    edited 30. Nov -1, 00:00
    I do hope tomorrow's appointment is profitable. Please let us know.

    As for the plumbing, when I was on oxycodone I managed with just prunes but I have to say I haven't touched one since :lol:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    SW, my lovely husband has learned to make me porridge for breakfast which helps, and I'm consuming lots of fruit and salads and wholemeal bread--with very limited success! :lol: I'm drinking litres of water-and going to the toilet correspondingly often-night and day.

    I never usually take more than 2 co-codamol a day for my RA, but now it's 2 four times a day plus a butrans patch for break through pain, and gabapentin 3 times a day....to say I'm bunged is an understatement! :oops: I've never tried prunes-the appearance puts me off-I wonder if fresh plums would have the same effect-I'll put them on this weeks shopping list to try.

    When I was in hospital in Cape Town and asked the consultant neurosurgeon for some laxatives he began to chuckle and said he was waiting for me to ask. He then proceeded to ask whether I wanted movecol, suppositories or the nuclear option! Happily movicol did the job-but he did just check a few days later with a twinkle in his eye. :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I now rely on prunes and figs, never the fresh variety as fruit is unreliable in quality and costly. I agree that prunes do not look appetising but the snacking ones we buy from Sainsbriz are consistently moist, sweet and far cheaper than the fresh. I have mine with muesli, or Greek yoghurt and also munch at least five whilst brewing tea.

    Thank you for your good wishes, moderately grotty maybe just within reach . . . The BBs have definitely helped things over the past 48 hours. DD
  • stickywicket
    stickywicket Member Posts: 27,223
    edited 30. Nov -1, 00:00
    I have been known to chop prunes up into my porridge. They taste OK. Similar to raisins. The 'lots of water' will be good for kidneys too. (Sometimes we need an extra incentive to do the right thing :lol: ) I think plums, while being as good as any other fruit for the bowels, lack a couple of 'laxative' ingredients that prunes possess. I think sorbitol is one. I'm not sure of the other.

    When I was on the oxycodone I was sent home from hospital with both senna and something else. I can't remember the name. Both cautioned against regular use which is why I opted for prunes with just the occasional foray into senna. It wasn't until I came off the strong pain relief that I realised just how much of my day had been devoted to keeping my bowels in good nick :shock: I don't normally have any problems now but I've noticed that, when in California, things work amazingly smoothly :lol: I attribute this to regular salad lunches, beer and trail mix :D

    Suppositories? With RA? Never! In my early days, when NSAIDS first affected my stomach, I was given indomethacin as a suppository. Bearing in mind my RA started in my hands I can assure you it was not a viable option. I had to chase them all over my Mum's bathroom :lol:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Sticky you paint such vivid word pictures :lol::lol::lol::lol:
    Thanks for reminding me why I eat all the fruit and salad. Strangely when I can take my sulphasalazine I have absolutely no problems even with codeine-but the DMARDs are currently stopped until surgery.

    I guess the prunes will be on my weekend online shop which I intend to so this evening after I see the neurosurgeon. This morning I've been sat on my perching stool in the kitchen making cake to keep my mind and my hands busy (well my food processor rather than my hands) , and the house now smells wonderful.


    Here's hoping that the way forward is clearer after this afternoon's appointment.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Just a quick update on my consultant appointment.

    It took over a month from an urgent GP referral to get an appointment, and it was a bit of a mixed bag. He was very thorough in examination, and I'm paying in discomfort today in my lower back and left hip. He wants a more up to date MRI to compare the images, his hope being that mother nature might heal the extruded disc enough to need no more treatment in the fulness of time. In the meantime I'm instructed to go to a single crutch and try to walk around more which is interesting-I've tried a little in the last 12 hours and it makes the base of my spine really sore. Alongside that I'm to begin to reduce the pain medication gradually-beginning with the gabapentin reducing 1 dose at a time so from 3 to 2 for 2 weeks, then down to 1 a day and none over a period of 6 weeks, then start taking out the co -codamol in a similar fashion. He also recommends recommencing the DMARDs with the agreement of the rheumy-so I'll attempt to contact them on Monday as I was due to begin a new medication regime. If the pain returns I can return to existing levels.


    He said if reducing meds doesn't work he will offer me a spinal nerve block(?) injection, and surgery is the last resort.


    I'm not sure what I feel about it. My original neurosurgeon in South Africa was certain that the state of the vertebrae and the size and position of the disc extrusion meant surgery was the only real option, but wanted to happen here at home with the family to support me, it made sense. If an eminent and well respected neurosurgeon was so certain 6 weeks ago, how can another professional be so adamant it requires no treatment and I should take out the treatment and advice previously given. One begins to wonder whether it's related to the pressure on NHS services and the directive to use all conservative treatment routes before looking at surgery. For me it's frustrating because this really feels like a kind of half life where most of what I enjoy is out of reach-and likely to be so for many months at the very least. I would prefer not to have surgery, and worry somewhat about coping with the spinal injection - many (33) years ago when I had an epidural in labour with our twins the pain of the injection was so intense I almost fainted.


    So today I'm resting and trying to cope with the aftermath of yesterday whilst getting my head around what happens next.
  • stickywicket
    stickywicket Member Posts: 27,223
    edited 30. Nov -1, 00:00
    I'm sure that, in your situation, I'd feel just as ambivalent as you do. From the luxurious position of onlooker and well-wisher, however, that seems like a good plan. The NHS does reassure us that most herniated discs can, in time, heal themselves (https://www.nhs.uk/conditions/slipped-disc/ ) and, from what I can remember of relevant posts on here, spinal surgery isn't without its ongoing problems so best avoided if possible.

    I do understand about the current 'half life'. I was like that while on oxycodone. I was determined to try to get off it. But at least you have a reduction plan which I would personally consider as elastic ie treat it like steroids and be prepared to keep going at a certain dose for as long as it takes rather than just moving onto a lower dose because the time lapse says you should.

    The new MRI is a good idea. That will show what's been happening. Hopefully, some healing.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We are always at the mercy of professional opinion and it can make life very complicated indeed. I have no wise words and I recently smashed my crystal ball because it kept getting things wrong. :wink: Do what works for you, do what you can when you can, keep a diary of pain levels etc but not to the point of obsession, and we will see what we will see. ((( ))). DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    DD, a smashed crystal ball is probably best for our sanity, and wishing and longing seem to get us no-where other than discontented. How are you doing by now-have you managed to return the BB's to their allotted box or drawer for worse times yet?

    SW, I absolutely agree with the elastic nature of making the changes suggested by the neurosurgeon, and to fair he did say if reducing the meds caused to much m pain to return to the status quo. Tomorrow I will begin reducing the gabapentin, I may take our one of the 8 co-codamol and replace with paracetamol later in the week too if things are going well too.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    All we can do is our best. ((( ))). DD