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scared the doctors aren't believeing how much pain I'm in!!

I'm currently on the waiting list for a l5/s1 spinal fusion at RJAH hospital in oswestry for spondylolisthesis, a disc bulge and degenerative discs. I've only just turned 22 and I'm in so much pain and I'm scared that no one is believing me when I say how much pain I'm in.

i have been on the waiting list for 3 months and in the past 4 weeks the pain has got much worse with new symptoms are appearing. I've always had intermittent pain down my right leg as well as lower back pain but now the right side of my bum constantly hurting. the lower back pain is constant and keeps getting worse.
I've also experienced numbness on the top of both feet at the same time.

I contacted my consultants secretary to if i could get a date for my op and they said it will probaly be in around 6 months time. i also asked to arrange a review appointment with my surgion but have been told I will probably have to wait til October for that. I have an appointment to see my GP on Tuesday next week to see what I can do while waiting for my op. I don't want any more pain killers as I'm on 20+ tablets a day already. what should I ask for??

I don't know how I'm going to be able to wait 6 months for this op!! I can't afford to give up work but its hurting so much.
I no longer sleep I have had 1 good nights sleep this year after my 1st acupuncture session but that's been it. I just feel like I'm fighting a losing battle and don't know what to do anymore!!

how do I get across how much this is hurting??? should I ask to have a new mri???



  • Can you elaborate for us why the long wait? How old is your MRI?
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • baggers290691bbaggers290691 Posts: 22
    edited 08/03/2013 - 8:55 AM
    my MRI was taken last October and I had a CT done in march this year to confirm the diagnosis. I was told I have a grade 1 spondylolisthesis, slight disc bulge adjacent to the l5 nerve root and degeneration of l5.

    when i spoke to my surgions secritary I was just told its due to a long waiting list and that everyone is in pain and that's all they are telling me! it's really frustrating.
  • It made me think I am really scared on undergoing any operations even liposuction, I wonder how much pain will it cause.
  • You are on a lot of medication- 20 tablets a day? There are many other ways to manage pain aside from taking pain medications- physical therapy, ice, heat, massage, TENS (transcutaneous electrical stimulation) , accupuncture, biofeedback, over the counter heat packs, and creams, anti inflammatories.
    A grade 1 spondylolysthesis is not a huge slip- it is less than 25 % of the circumference of the disc, and a disc bulge simply means that the disc is sitting a bit outside the normal boundries on a vertebre. It may, depending on the location of the bulge be in contact with the nerve root , which may be contributing to the increased numbness.
    I am guessing that you are either in Canada or the UK, and the wait times there are a bit longer than in the US, but if you are concerned regarding your symptoms, then you need to make another appointment and learn to use other methods to manage the pain the meantime.
    Taking more and more pain medication is going to leave you with some real problems in the immediate future and especially post op. It is extremely difficult to manage post op pain when someone is taking a lot of pain medication prior to the surgery, so you really need to work on other methods to manage your pain levels and not focus so much on them.
    Melatonin is an over the counter natural supplement found in our bodies that helps many sleep, and it might be worthwhile investigating using that to help you sleep.
    I sense a lot of anxiety in your post, so you need to relax some- perhaps some time spent with a counselor who can help you in the meantime learn some relaxation techniques, which would also help you to learn to manage the flares in pain without adding more medication to the mix.

  • hi sandi

    I've got an appointment to see my GP in the morning. the big increase in pain meds is due to advice I had from an on call dr who I rang up for advice. when I told him how much I was Hurting he just increased my meds and that was it! that's why I'm going to actually see my regular doctor tomorrow as before this bad 4 weeks I had got my pain meds right down to just ibuprofen during the day and then 2 nefopam at night if the pain was back and if I could get away with just using my TENS machine and a ice pack I would. I think this last few weeks have scared me as I've had the new symptoms and I can't pin point what caused it (usually if I have a flare up of pain i no why)

    I've been having physio for the past 7months and was having good results in improving muscle tension and improving my general core strength and she would also use acupuncture to help if was having a flare up of pain.

    like you said the problems I've been diagnosed with shouldnt be causing a large amount of pain. my consultant said that both my scans show I have a lot of scar tissue which he feels may be the main cause of the pain as where it is located. that's the main reason Im concerned they won't take me seriously with the increase in pain. I think I want him to just reassure me that I've not made any problems worse!

    I am having anxiety about the whole situation. the idea of having the op is scary but the fact I had to leave a job I loved and have been told I probably won't return too is horrible. plus I don't know when I will be able to go to Uni to retrain as I have no idea when my op will be is all a lot to handle! but I live in England and I've never know anyone be referred to a councillor they tend to just give out anti depressants which is just more pills and thats want I'm wanting to avoid.

    I think I'm going to request trying the injections to help the pain until my op.

    thank you for the advice I will lt you know how I get on.
  • Scar tissue from what? Did you have surgery in the past? It is possible that scar tissue is messing with either the nerve root and that is causing the increased pain but there are other medications that are far better suited to that type of pain than opiates. Lyrica, gabapentin, topamax, cymbalta ( which has the added benefit of being an anti depressant as well as working well to treat nerve pain.
    We all can understand the fears of having surgery, and not knowing how things will turn out later for us. Many of us have had to give up working at our doctors insistance, and still others have had to change jobs or find other ways to be productive.
    Most back pain resolves itself over time, and our bodies do learn to adapt to it some, but then others need to have pain medication to function at all. Whatever avenue you wind up taking, is it at all possible to see another surgeon or two for a consult to make sure that surgery is necessary in your case? In the States, we tend to suggest that a patient consult at least with one board certified ortho spine surgeon and one neuro spine surgeon since different doctors have different recommendations. If you can avoid surgery, and there is no danger of further damage, I would try to hold off as long as possible, especially since the slip (spondylolysthesis ) is not very big.....unless of course, there is nerve involvement. In that case, waiting too long can risk permanent damage.
    I hope things get better soon.
  • Pink2lipPink2lip Posts: 123
    edited 08/06/2013 - 11:34 PM
    In my opinion youmshould look into pain management. I went through paim ,anagement which helped and they barely gavie narcotics.. They dolled out muschkr relaxers but it had to take them and work.

    Currently i had a fusiom 2 weeks ago and I insist I go to pain management again. It is to painful amd I feel llike l lomg ter paim mamagement is critical for ,r. There other menage,with out oral ,edicariom. Goood luck amdmare umim UK or,so where the can take time
    40 year old mom
    Tlif July 18
  • I've never had any surgery done before. not sure where the scar tissue had come from. I can only assume that it had formed where the vertebra has broken which is what's caused the slip, but the consultant has said that's there is a substantial amount of scar tissue around the area. they don't know what caused the break they think I could be due to the fact I walked from 6months old and would climb all the time which also meant I would fall all the time. other than that I've never knowing injured my back. I was in a very serious car accident when I was 10, there were 3 cars involved and I was the only person who didn't get any injuries all others involved were in hospital for weeks after with multiple injuries and I only had a couple of bruises. my mum is convinced this could have caused the problems and the additional scar tissue.

    i saw my GP tuesday morning and it was a waste of time really! all he has done is given me tramadol to take at night to help me sleep and to stop the pain that i get whilst in bed. i asked about getting injections and he said my consultant felt that it wouldnt help me to have them and that he agreed with him. so im not able to have injections and the doctors just seem to want to give me more and more meds.
    the surgery has been advised by 2 different surgeons but both orthopaedic.
    so I am hoping this flare up of pain will calm down soon so I have push on with my physio and cut back down on my pain killers. then hopefully my wait for surgery won't be to much longer.
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