disc prolapse and degenerative discs

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hi ive had low back pain and leg pain, for over 2years. had physiotherapy for over a year which included traction and accupuncture and i take tramadol diclofenac paracetamol daily in large doses. I was finally sent for an mri scan after a year which revealed disc prolapse at L4/5 S1 and degenerated discs at L4 and 5. My notes went missing and i was finally referred to a neurosurgeon who i seen beginning of march this year. 10 minute consultation and an apology for waiting so long. Anyway had my op late march(referred as urgent). Had an overnight stay in hospital and apart from feeling sore and tired was fine. sent home with exercises to do and a list of dos and donts. Im now into my 5th week of recovery and im in more pain now than i was originally. The leg cramping is agony and im feeling a lot of pain in my left hip. I still have a terrible back pain but my surgeon did explain that this op would not relieve this as its caused by my disc degeneration which he will consider me for spinal fusion in 6month. Does antone know if i will be sent for a follow up appointment to see how my recovery is going or will i have to go back to my GP and ask to be referred. So far i have had no aftercare and would be sitting here clueless if it wasnt for the info giving on this site.

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  • Posted

    Hi Gypsy,

    I am sorry to hear that you are still having all this pain. To answer some of your questions, you should receive a letter from the hospital offering a follow up appointment about 6-8 weeks after the surgery. As it is already 5 weeks, with no letter in sight, I suggest that you call the surgeon's secretary. That said, apparently some hospitals don't do follow up appointments which is quite scandelous considering the nature of the operation.

    You should now be thinking about getting some physiotherapy post surgery, but again this is very hit and miss as to what is put on offer. Once you get it, it should make a big difference. I had acupuncture at my local hospital too which was brilliant. I hadn't been offered physiotherapy and by the time I got seen (4 months post surgery) I was told that I was \"beyond normal physiotherapy because it had all been left too long\" hence being given the acupuncture. As I say that was brilliant and cured a lot of the residual back pain after surgery. Apparently the function of the nerves and the muscles close to the spine are closely related and pre surgery, like me I'm sure that you were sitting in lots of odd positions and walking lopsided and all that affects those muscles. The phsyio post surgery is different from what you would have had pre surgery.

    Recovery takes a long time from this operation and the cramping that you are feeling is I'm afraid a part of that. I too suffered from that particulary in my thigh. It is all part of the nerves regenerating and generally learning how to function again after being compressed for so long.

    As the patient there are things that you can do to help your recovery, but likewise you do need follow up help from the hospital post op. I agree with you that for spinal patients so much is learned from each other and the internet. I wish that it wasn't that way. I was 'unlucky' in that my first surgery was botched up and I needed another operation less than four weeks later, after being made very ill. But even during everything that was going on I was still being fobbed off and my (urgent) needs ignored. Never again will I allow that to happen to me and I am the biggest advocate on this site for people getting proper help. Unfortunatey, what is heard over and over again from the people who write here is that help will not come looking for you and unfortunately you should fully expect to be the one making the running. If you do decide to call the surgeon's secretary, if you are not getting anywhere then tell her that you are in considerable pain and in need of a early consultation. If she tells you there is nothing for three months, then tell her that under the circumstances a \"forced booking\" is appropriate. That way you should be seen in two weeks and she will think that you know what you are taking about :lol: :lol: Just go for it!!!! You only have one body and ultimately the person that cares most about your recovery is you. But don't get disheartened, hopefully in the long run you will be pleased with the results of the surgery.

    Best wishes

    TFU

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  • Posted

    I was told that I would receive a follow-up appointment but needless to say it didn't arrive, however, I did have to chase up every single appointment, scan etc leading up to my surgeries (x3). Sorry to appear so negative but I have learnt from experience that you just have to keep on and on and on, it's almost as though the attitude is one of 'out of sight, out of mind'.

    I had a laminectomy done (L4-5) and had my pain return within 6 weeks, I had to fight to get the follow-up appointment and then a scan. It turned out that I should have had 2 levels treated, so I returned to the operating table 6 months later to have L4-5 and L5-S1 treated - laminectomy, discectomy and foramenectomy.

    I have never received any physio from the hospital. I was sent home with a photocopied piece of paper with sketches of excercises to do on my own. Luckily I received some through work.

    Once again, I apologise for sounding so negative, my symptons have returned on the other leg now and I have opted to be treated at a different hospital, here hoping I have a different experience. Although I can't praise the staff highly enough for their care and attention while I was actually in the hospital.

    Good luck and chase them up, don't be fobbed off.

    Sandra

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  • Posted

    Hi Gypsy

    I suffered with lower back pain for years before finally having an operation in 1997 in South Africa. My condition was such that the bottom disc collapsed completely & pushed onto the spinal cord causing pains in my right leg & a condition called drop foot. Within four days I had an operation to rectify the problem, the operation being a Laminectomy & a discectomy. In laymans terms they removed the collapsed disc & chamfered the two vertibrae to prevent them rubbing together after the removal of the disc.

    After the operation the first six weeks or so were very difficult, learning to walk again with all the pain & low blood pressure causing dizzyness etc. After the operation I completed physio for some weeks & got into the routine of exercising as per the specialist advice I was given. The exercise I believe really helps to protect the repaired area by keeping the muscles protecting the area in a reasonalbe state. I also have three badly degenerated discs above the one that was removed & was advised not to go for fusion at the time as I would have been left with a lengthy rigid portion in my spine which would of course restrict movement. To date I still have occasional bouts of trouble, general when doing things strenuous etc. When I do have pain I take a soluble pill called Cataflam'D' which help like you can't believe. I have even given a sample of this pill to other sufferers who can't believe the relief it gives them. Check it out - it is from Novartis & can be taken without food & does not cause any issues with stomach ulcers etc, a point verified by my doctor in South Africa.

    Hope this can be of help to you.

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  • Posted

    Hello Doof,

    Haven't seen you write for a while......maybe you have and I just wasn't paying attention :lol: :lol: That will be the drugs then!!

    I'm sorry to hear that you have had so many problems. For me there are two issues. The first is my body letting me down and the second is the NHS letting me down. The first I can't do much about, but the second I can. But just once it would be nice to feel that they actually gave a damn and it wasn't me making the running all the time. I can safely say that at no time did I ever feel cared for whilst I was in hospital (three times), but then I guess that because of the clinical negligence issues my situation is slightly unusual. 16 months on I still have post traumatic stress disorder from everything that happened and the main issue is that as things went from bad to worse nobody would help me. And because of the lies and cover ups I now don't believe a single word they say. From the damage they caused during the first operation, in 14 months, I have had 57 hospital appointments and my care is now spread over four hospitals. Like you though I have transferred my neuro care to a new hospital. My latest MRI scan shows two focally prolapsed discs, which will 'go completely' at some point and a huge amount of internal scarring, which is now causing the worse of my leg/foot symptoms. Officially I have Failed Back Surgery Syndrome, which brings me back to my first point that it wasn't my body that let me down, it was the dumb surgeon that failed me when she made a huge dural tear, didn't spot it and then caused a huge amount of nerve damage when the nerves were in the words of the new neurosurgeon \"left poking out through the hole\". the old neurosurgeon had speculated that maybe the damage was done to the nerves \"by stitching them in when she sewed up the dura\" like something out of a Frankenstein film!!!:evil: :evil:

    The hospital I was at just gave you a booklet when you left hospital about exercising etc, which I guess is one up on what you got given, but it is totally inadequate. I hope that you get a better service and care at the new hospital, at least this time you have experience on your side. I expect that like me you have learned an awful lot on this journey. And what a rollercoaster ride it has been , eh??

    Best wishes

    TFU

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  • Posted

    Hi TFU,

    Sorry to hear that you have had such a miserable time.

    I was keeping a low profile as I was foolish enough to believe that I was on the road to recovery but ohhhhhhh no ..... here we go again! I'm trying to keep my chin up but it's difficult at times.

    I'm off to the 'new' hospital on Tuesday, I know what's coming - mri scan, wait for appointment, chase up appointment, wait again - have the scan, wait for consultant appointment, chase up consultant appointment, have consultant appointment - oh it's been more than 6 months since you had the scan .......... have another one!!!!!

    Oh yea of little of faith I hear you all saying!

    I'll post again when I know what's going on ...... hope you all have a good weekend, the sun is meant to shine 8)

    Sandra

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  • Posted

    Hi Doof,

    I totally understand where you are coming from and some people will say \"oh, but you don't know it will be that bad this time\", but I'm with you on this one, YUP WE DO!!!! The system sux. Sounds like it is all making you quite weary. For the last two years +++ my life has been governed by getting appointments, going to appointments, chasing up appointments and being hugely disappointed to go through it all feeling that no progress is being made at all. Just to start the whole cycle all over again. I am totally worn out with it all now and ironically I have been signed off sick since last October with stress and I lost my job in December.

    But on a positive note as you say the sun is shining, summer is on it's way and I shall make every effort to enjoy it. I am totally skint from not working so it will be something of a cheapo summer.

    Are you by any chance at NHNN in London now???

    Best wishes

    TFU

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  • Posted

    Sorry to hi-jack your thread gypsy.

    I've been to my new hospital this morning (Frimley Park) and was seen by a really through army fella (Lt Col - thinks thats quite high up isn't it). He thinks my lower back is collapsing, I'm waiting for an mri scan to confirm it.

    Luckily the wait isn't so long at this hospital, I've been told 2-3 weeks for the scan but I'll believe that when I see it. Let's hope I'm back eating my words soon :D . This is one instance when I'd be happy to say I was wrong and that rarely happens!

    Hope you are all relatively pain free today.

    Doofie

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  • Posted

    Hi Doof,

    Glad to hear that things went well at the new hospital. Lets hope this is the start of something good for you. Regardless of what the diagnosis is, how good will it be if it is dealt with properly, in a timely manner and if you are treated with respect? You deserve that. Let us know how the scan goes.

    Best wishes

    TFU

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  • Posted

    Update - good old NHS!!

    I had my mri scan 6 days after seeing the consultant ...... STUNNED, CAN'T BELIEVE IT, wont hear a bad word said against the NHS!!

    Oh, stand by, follow-up appointment for the results is 7th July - NORMAL SERVICE HAS RESUMED.

    ARGHHHHHHHHHHH

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  • Posted

    Hi Gypsy

    Im in exactly the same boat im now week 4 from my L5/S1 decompression and im in as much if not more pain in my legs and back, surely this cannot be normal?

    I had my surgery at Nuffield Orthopaedic Centre in oxford (1hr 20mins from home)after being fobbed off by Northampton general, my GP sent it through as an urgent referal yet for some reason after 3 weeks the consultant had not even been made aware of my file (apparently an urgent referal is immediately viewed by the consultants and then graded on its urgency) after it all im really glad i changed as Nuffield was absolutely amazing after changing to them i had an appointment for the following day after just 45 mins and my surgery 1 1/2 weeks after my consultation as the bulge i had was central and pushing against my spinal cord (according to the surgeon once opened up he found another 3 discs requiring a shave as it were).

    Also i apparently have disc degeneration in the same area, what casues this? and should i be prepared for further surgery in future?

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