Disc prolapse, L5/S1, living hell for 18 months!

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hi everyone! 

Finally ly I have at last had a result!!!

18 months ago I was involved in an RTA. Rear end shunted. I was in A&E. X-ray done, sent home with painkillers.

Over the next 10 months, I took these along with several courses of diazepam, ibuprofen, and some other anti inflamatories. Then the co-dydramol did nothing anymore. So I was started on tramadol. This did nothing after 2 weeks of agony so I was put straight onto morphine. 30mg modified release with 10mg every 4 hours for a boost if needed. I also had approx 12-18 sessions of physio to no effect.

I was then in June when I went back to the doctor for n increase in morphine, sent for an urgent MRI scan. Why this has taken nearly 12 months I do not know! I was now on 60mg of modified release morphine twice a day plus boosters!

MRI scan came and went in June. Scan apparently showed nothing wrong and my GP told me to live with the pain!!!!!

In August, I was taken to hospital in horrendous pain. I couldn't stand straight! The doctor gave me a morphine injection of 30mg to try and help bearing in mind I had already taken 90mg throughout the day!

I saw my GP the next day, he refused to get me seen by a specialist at the hospital, would only send me to a pain clinic to manage the pain! He also increased the morphine again to 100mg modified release twice a day plus 10mg boosters if needed!!! This was now a max of 240mg a day!!!! This now was disrupting my sleep, hormones and my general life.

I realised this and with the help and support of my fiancé, I reduced my morphine during the night down to 60mg and stopped the daytime boosters.

With the GP refusing to do anything at all. I thought I had no choice but to live in agony. I started the pain clinic, and all the doctor said there was, scan showed nothing so we won't even look at anything anymore!

my dad saw his doctor at the same practice as me and voiced his concerns. I then made an appointment to see him and went along. He accepted my concerns over the results of the scan after I had a false result from a previous scan on the same machine some 7 years previously on my knee so he sent a scan request. I had the scan on 4th January and finally have an L5/S1 prolapse result!

I feel totally abused by my GP. I put my total trust in him to do the best for me and he basically refused treatment! I was also told by the pain clinic that the level of morphine he had me on was dangerous. 

Im now waiting for my doctor to call me on Thursday lunchtime, hoping to tell me they can do something! I was told by one friend that because it's been left undiagnosed for so long, it may cause problems!? He has had prolapsed discs many moons ago.

 

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  • Posted

    Hi James, your next step is an appointment with a consultant neurosurgeon. It is the duty of your GP to see to it and fast. My guess is you'll be offered injections first before an operation, good luck and keep us posted.
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  • Posted

    Thanks Joe,

    just seen even physio this morning who gives me acupuncture. She logged into the nhs system and looked at the scan results. 

    L4/L4 is a small bulge, L5/S1 is a prolapse touching the root nerve. That explains every problem I have had since the accident!

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    • Posted

      Cool, action at last. Remember mate, an operation is a very last resort. Even a micro-discectomy involves shaving some lamina off and some ligament being cut out just to get to the disc, once breached the disc never really heals, it's just scar tissue that forms at the incision site. Acupuncture and gentle excersise can really heip in the interim and i really hope your pain lessons. Good luck mate.
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    • Posted

      Hi Joe, don't know if you have seen my latest posts. OrthopedicClinic specialist found another bulge towards the Spinal cord, he has put me forward for a Disectomy. Said without a shadow of a doubt, I must have surgery and soon! 

      Seeing surgeon on 21st so will report back then!

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  • Posted

    Thanks Joe. The physio said due to the massive quantity of physio, acupuncture and impact this is having on me, not to mention the morphine. She reckons they might offer surgery straight away. I'm not interested in pain reducing injections, I want a fix. I've had agony 24/7 for 18 months and it's very wearing on your self esteem! I'm supposed to be getting married in 18 months and I don't think I will be able to stand at the alter for that long!
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  • Posted

    Hi James- I have lived in pain and sometimes excrutiating agony for almost a year now, so I understnd how you feel when a doctor is so dismissive- bet they wouldn't be so quick to give up on you if they had ever experienced that sort of pain themselves! My surgery refused me an appt as they have a triage system and I ws told to live with the pain, then my doc wouldn't give me a scan for 7 months and nothing more than codeine which didn't even take the edge off the pain- until I saw another doctor thank God. I have an L5 prolapse and had a relapse last week and couldn't even walk for 3 days-I had the injections on Friday but no difference as yet. I hope you are not right in saying that being left undiagnosed for so long will cause more problems- for you and me! All the best.
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    • Posted

      Hi Leisa,

      I'm rather annoyed the doctor is telephoning me rather than allowing me to visit him! I'm hoping this isn't their way of pushing me aside again!

      If they do I shall be contacting the GMC.

      I'm supposed to be dropping another 10mg of morphine tomorrow, I think it will be the night time dose although I'm not sleeping properly now! Was awake from 4-5am last night!

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    • Posted

      James, i'm following you with interest mate, tell your GP to get you referred to a consultant ASAP, that is your right as an operation could still be months away. The only way they'll operate right right away is in the case of Caudia Equina-( which is an emergency ), or foot drop. Dont wait for them to phone you, phone the surgery every day and make a general nusiance of yourself.
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    • Posted

      Hi Leisa, i really hope your injections work for you. You should feel a difference when your nerve root settles down a bit, good luck.
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    • Posted

      Hi leisa, Karen

      you said your doc doesn't see you, you get calls? Does he prescibe meds over phone as well?

      I know I read or show on news, your doc is suppose to see you in office to examine new or existing pain. What is really going on with these doctors nowadays?

      Have you changed from that doc?

      I can relate with you I just had an injection as well I'm on my third day and I see no results at all I can barely bend I have inflammation throughout my whole back but I don't have any relief.

      I wish the best for you

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    • Posted

      Hi Karen,

      Our doctors surgery will do anything to put you off-after it takes up to 2 hours to even get through to their queuing service (constantly hitting redial), and another 15-20 minutes queuing,you then speak to a receptionist who does her best to be unhelpful and obstructive, you then wait (4 hours is my record) for triage to call you and try to put you off again.

      At this point I have been refused an appointment altogether because "back pain isn't an emergency, loads of people have it, we only make appointments if you have been in pain for over 6 weeks" (God's honest truth this is what I was told when I was crying with pain and hadn't slept for 3 nights)

      If you still have the cheek to be tenacious and you haven't yet dropped dead then you wait for a Dr to call you which is deemed ok for an appointment-last 2 times I made a routine appointment in person to view my long awaited MRI results and for a thyroid review, the appt was a month's wait. So yes, a lot of the time I end up with phone "appts" and prescriptions being doled out on the phone.

      I haven't changed from that doc though as (when I'm not crippled with pain) I can walk there in about 7 mins which is handy as I don't drive and work full time, and the chemist is opposite. Also the other doctors nearby is even worse!

      Re my injection, after 11 days its very hard to tell if it has worked because I have no back pain at all but am still in agony with a trapped nerve down my left leg which has left me unable to walk far without terrible pain and with my calf and foot numb and as cold as ice. So, silly as it seems, I'm not sure if it has helped! BTW, if anyone reading this has had a trapped nerve from a prolapse- how long did it last? I'm supposed to be going on a cruise in 5 weeks time and am getting worried that I won't be able to walk around the ports now sad 

      I hope your injection kicks in soon though Karen, I was told to expect 5-6 days before it worked.x

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    • Posted

      Hi Joe,

      As you can see from my lengthy reply to Karen(!)- I'm not sure if it has helped as I've got a trapped nerve I think- my back feels fine but my leg and foot are numb,icy cold, and I can't walk or stand for longer than a couple of minutes. I hope this goes away soon!

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    • Posted

      Hello leisa,

      Wow reading that is so sad. I don't really even have words I'm so sorry you have to even be going through this.

      Please just take it easy!!!!!!

      Has the doctor said that he has any other plans for the pain in your left leg?

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    • Posted

      Yes it is Joe-the prolapse happened (2nd/3rd time) on 2nd Jan and after the excruciating pain came the numbness of the trapped nerve. Had the injections so my back doesn't hurt now, but my leg and foot are still as dead as a dodo!
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    • Posted

      Hi Karen,

      To be honest, its so much hassle trying to even talk to doctor that I haven't bothered. I'm hoping that the pain and numbness will gradually reduce on its own. Unfortunately I can't take it easy as I work full time, and although I have requested part time hours they are dragging their heels...

      However,I would be interested to know if you, or anyone reading this, has any experience of physio/osteopath/massage etc or acupuncture being of any help with L5 prolapse and the pain? Thanks,Leisa

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    • Posted

      Try not to worry, nerves can take a helluva time to heal, keep moving about though Leisa and hopefully it wont be too long before you start to get some feeling back. Good luck.
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    • Posted

      Acupuncture can help, i tried it and got some relief in my L5/sacral area, maybe not too much physio though, if they've no scan to refer to they may do more harm than good.
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    • Posted

      Hi leisa

      I know it is frustrating and you just want to throw your hands up, but this is your health you're talking about.

      the pain may not go away gradually by itself, and you are doing the right thing by reaching out to others to trying find different avenues.

      That will help you and you're also waiting on your job to give you the word, about part time but just don't give up.

      even if you have to keep going back to management and explain to them, let them really understand how this is affecting you in your day today living.

      No I do not have any experience in physio/osteopathic/massage, I have so much inflammation that can't even be touched.

      Since the numbing injection did not work on me, they are supposed to try the lumbar epidural injection on me soon. So I may gonna see how this goes..

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    • Posted

      Hi Leisa, my name is Clare and have been reading your forum.  I have had an L5 S1 prolapsed disc now for 10 months.  First of all I had all the physio which didn't work.  I then went to see a Chiropractor (please do not try this) they made me worse I could hardly walk and the pain down my leg was excruitiating.  I had already booked a holiday to Egypt and got there and could hardly walk.  The good news is, I had an epidural injection and after 3 weeks I started to feel the benefit, no more pain down my right leg.  I only now take one painkiller a day and am waiting for a second opinion to see if this will go to op.  The injection you relate to was it an epidural?  If so give a while to work they are normally very successful.  Please immediately, change your doctor you cannot carry on with them you have this right to change.  Are you now under a Neurosurgeon at the hospital?  You should be if you have had an injection.  This was the only thing that took the pain away for me.  I completely understand where you coming from I was in pain for 8 months and nearly demented with it it's horrendous and nobody unless they have been through this understands.  I know you posted this a month ago, have you had any relief at all?  If you have an email address I can give you my mobile if you need any advice at all.  Best Wishes Clare xxx
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    • Posted

      Hi Clare,

      Firstly apologies for my late reply as I went on holiday on the 23rd and ony got back yesterday. Yes you are right, it was a spinal epidural cortisone injection and I have slowy slowly improved since then. When I first had a relapse I thought I'd have to hire a wheelchair for my holiday since I was so weak down my left leg and could not walk far or stand for long without pain.( This was after the excrutiating pain and being unable to walk for a week episode)

      However, it has really started improving over the last month, bit by bit. Im so thankful. My calf and ankle are still partially numb though (at least its not my whole leg and foot now) which is nothing compared to what I have put up with but I wonder if I am stuck with this for good? Do you think so?

      Since the injection I have heard nothing from the hospital, my doctor, or the SATS clinic so I haven't a clue what happens next! I certainly haven't been told about being under a Neurosurgeon. I don't know how long the positive effect will last for, and if I will have a gradual re-appearance of pain and kind of know that I will need another injection or a total wipeout of agony- and whether I will need to go back on the old 4 month waiting list again. I'm totally in the dark!

      I still feel very wary about bending at all since even doing my holiday packing very carefully made my back hurt a little, and bending over can still give me a twinge. To be honest, I'm frightened to do anything that makes this happen again.

      Its so kind of you to offer some advice, not sure if we are allowed to out our emails on here or if it will get blocked though?? Any tips etc will be very gratefully received, thanks x

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    • Posted

      Hi Leisa,

      Who has actually done your Epidural Cortizone injection?  This is normally done by a Neurosurgeon injecting your back.  That is how mine was done, or did you have this done at the SATS clinic?  You really need to be under a Neurosurgeon who normally administers these injections as it is them that ultimately decide whether to operate or not.

      I will leave you my email: _______ and from there maybe give you my number so we can have a chat.  Go back to your doctor and ask him to refer you to a Neurosurgeon at your hospital.  I have my second opinion by a Spinal Specialist on Wednesday 17 March but I don't think mine will go to op now.  I like you, however, am terrified of when this injection wears off that I will have all that pain again, so on Wed when I see the specialist I am going to ask him to book me in for another injection as through talking to people they last around 5 to 6 months and I cannot go back to that pain.  I understand your concern but sounds like the injection as worked for you and you need to speak to your doctor about booking another one so you not in pain waiting for the next four months if you do go back to pain.  You may however, (you and I both) not need another injection the disc may heal on it's own as they say 90% generally do go back themselves.  I am hoping so.

      Anyway hope to hear from you soon.  Take care Clare x

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Hi Clare,

      Yet another very late reply from me, sorry! I'm hopeless. I was gaining strength and confidence after my injections-although I still have a numb lower leg and ankle. The injections were done in hospital not at Sats clinic.

      I found out why I hadn't heard anything from the SATS people when I was at the hospital for something else and decided to pop down there to ask-and found that they had supposedly written out to me with another appt which had bee the day before! I never got the letter and the receptionist said I was a week away from being dropped from their list!

      I could not walk properly from when I had them done on 9th Jan (I think) almost until last week or so of Feb. Since then I have been very very careful and more and more hopeful until... on Sunday 19th April I bent forward a little to clip a shrub and my back shifted in a sort of grinding clunk. I walked it out, took naproxen, amitryptilene and the codeine asap and it was stiff and a bit sore but with no excrutiating pain this time..yet.

      I was so careful all day, got up for work the next day and it did it again as I leaned sliightly to the side. I took pills again, laid down to ease it, and called in sick.

      When I then got up, I walked about 5 paces from the bed and it shifted and clunked again. I've no idea what is going on! there is no horrendous pain so far, my back just feels like its got a block of concrete in the middle and any slight move too far forward, back or sideways makes the spine shift with a horrible clunk.

      Luckily I have another appt at the SATS clinic on Friday. I can't understand what is happening and why this time there is no pain (don't think I'm complaining, mind)

      How did you get on with your appt in March? I hope youy were given more info than I'm working with!

      Regards,Leisa x

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