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I just dont know what to do now!

Hi all,

I have said in a previous post that i am currently suffering with a lumbar disc injury. Results of MRI scans (ive had 2 now) show a disc rupture at l5/S1 and a disc bulge at l4/l5 with the bulging disc being apparently the one causing all of my problems.

Anyway things have suddenly gotten worse since around christmas and seem to be getting progressively worse. I ended up in hospital on new years eve because i had started with urine leakage, had a scan and got told that the results were pretty similar to the first one that i had. They could not explain why the urine problem had started as there was no pathology to show for it, so i got sent home. Between then and now its been a steady stream of developing pain and new symptoms that i havent either had before or since right at the beginnning 8 months ago.

Until yesterday, i was at home sat on my sofa and got up to answer the phone. Instantly i felt a lightning bolt type of pain down both of my legs from my back and i seemed to loose my strength in the legs. I ended up on the floor i couldnt stand up, not long after i realised i was leaking but i couldnt stop it - ,y bladder was not full but what was in there came out. My wife helped me up amd i was in incredible pain which still has not settled down. This was completely new, i have never had these bilateral symptoms before and the fact i could not stop my leak is alarming! But when i went to A+E they said the disc bulge is not central and is not compressing any nerves to di with the bladder? I just dont get it at all, I knew i should have perhaps gone back to hospital but i dont want to get messed around waiting for 12hours again for nothing to be sorted.

I have finally got an appointment with a spine surgeon next week to hopefully grt a decision on treatment whether it be surgery or other. As it stands though i am rather annoyed at being potentially messed about at this appointment ( its also out of my area) I have been told that the only thing that has been sent to the surgeon along with the referral is the report of the first MRI i had done, not the images and nothing else. Now i have had 2 scans done, the most recent on new years eve and none of this information will have got to the surgeon. After ringing around everywhere i have been informed that i cannot request the other scan report or the images to be sent to the surgeon in advance - this type of request has to be made by the surgeon himself. So basically i will be seen by the surgeon almost as a blank canvas, go through the whole story again and because he has not been sent the information, ive been told that the surgeon will more than likely arrange for the scans to be sent over, review them and then ask to see me again at a later date. This is getting so frustrating now! I kust want a solution to all of this and i cant even get results sent over to another hospital to speed up the process (lets face it, my surgeon would love to have all of this information to hand surely?) all seemingly because of NHS procedures and i now feel almost as if this first appointment wont be what i thought now.

I just do not know where to turn at the moment, i know that i have got this appointment now and its only days away but this injury is controlling my life completely and its making me feel so down because i just cant see a way out of the grip of this. I dont even like leaving thr house now for fear of any accidents happening. Im only 24 i cant be left like this without a respectable quality of life.

Has anyone else been in a similar position to me ? Especially on the bladder leakage problems and all of this muscle weakness. Could there be something thats not being picked up here?

I just want someone (at hospital) to realise how badly this is affecting me now!


  • SavageSavage United StatesPosts: 7,385
    I certainly hear and understand your frustration.
    I too am surprised doctor wouldn't have sent along the CDs of your previous tests.

    Maybe for future use, you could ask your primary to order for you to have copies of your CDs for in case you see another doctor. Sometimes it's trial and try again...so would help you to be prepared to show your history..along with current info. in case you are referred or need to see another doctor.
    Just a thought.

    You may want to use the search on this site, upper right on page...and maybe look up...incontinence.
    Reading on some information, not just posts but also articles and videos provided...may help you form your questions for doctor.
    You may read more about the nerves effecting the bladder...and the bowels.
    Of course, I don't know if it relates to you, but there is a conditioned called ...caudal equine...not sure of spelling?
    You might want to read about it and ask doctor.

    If surgeon does not think you are a candidate for surgery, you may want to ask for referral or suggestions on what to do next?
    Is it possible for pain management doctor to continue to monitor your spine and treat your symptom?
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

  • Interstingly, because im in the UK, we dont get our results on CD or anyhting like that under the NHS unless we go private. All of our infomation is kept on a database including scans etc. But where its confusing is the surgeon cant just access scans and has to request them from my records. But im not allowed to prepare for this and ask for my results to be sent ahead. To be honest i might try again on monday and see if i can speak to someone different because it just sounds like a rediculous rule/process to be honest.

    Il certianly have a browse on here and try and learn as much as i can, ive seen cauda equina mentioned on here before and looking at it ive definately had a combination of the symptoms involved (all except the bowel problems) but i just get really worried about the potential for lasting damage if its left untreated. To be honest if the incontinence keeps up or gets to a point where i cant control it il be going back to hospital!

    I know there are risks but i Wonder whether surgery would be an acceptable option now given the length of time passed since the original injury amd the fact that i have tried a range of conservative treatment ( rest, medications, multiple physiotherapy techniques) but none have worked and now things are getting worse. In terms of pain management as far as i have got is a prescription for gabapentin and told to take pain medication as and when i need it. The idea of a painkiller injection was floated around a few months ago but it never materialised and given how things have got worse etc - i wonder if they think the injection would not be worth it at this stage now.

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  • Hi, this may be a total Longshot and I can only speak by my own experience, but I've had similar symptoms with everything you are describing. My diagnosis was a tethered spinal cord, which can affected my bladder incontinence along with bilateral weakness, severe low back pain, nerve pain in legs and feet, sharp shooting, burning, stinging, crawling pains in both legs and feet. Maybe worth a mention. Good luck to you.
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