hello from tfu

Posted , 3 users are following.

Hi everyone,

I have just got on my son's computer and wanted to send you all a quick update before I catch up on all the posts.

I have just read my last post and boy I was down. Crushed by the NHS. Sooooo, I went into hospital on 3/12 and had the op on 4/12. Then was pretty much dragged out of bed and moved around, declared fit and left hospital less than 48 hours after the op, which to my mind was way too soon. Whilst I was in hospital I had some oozing from the wound on my back, which I told them about, but nobody was interested, they just changed the dressing a few times. I assumed it was some sign of a wound infection like Jules had. The day after I left the hospital, the wonderful Kings College in London, I went to see my GP. I showed him the dressing which was stained from the oozing but it didn't want to touch it. This was 7/12. He said to book an appointment with th practice nurse for Monday, 10/12. The receptionist told me the earliest I could have an appointment was 18 or 19/12. I said that was ridiculous the stitches needed to come out and the dressing changed, but she wouldn't budge. She said they would call me on monday 10/12 to see if I could be \"fitted in\". no after surgery care at all. Then on 9/12, I had a flood from my back and ended up at A&E. It turns out that during the operation there was a dural tear that hadn't been spotted and this stuff was a spinal fluid leak!!! I ended up after spending 12 hours on a trolley in A&E then being taken back to Kings, who of course had no beds so I spent another three hours on a trolley there!! I saw the surgeon and she wanted to operate the following day, but I couldn't bear the thought of two operations in one week. After the flood I had the very worse headache you could imagine because of this CSF leak and I couldn't bear to sit or stand for more than a minute at best. I convinced the surgeon to try conservative treatment, complete bed rest for three days and an MRI scan showed it had worked. I left hospital again 6 days later, but it will probably be some weeks before I completely get rid of the headache and generally feeling ill when I sit or stand.

I am very angry at Kings for not realising what it was whilst I was there and acting sooner. As a result the loss of spinal fluid was extensive, I risked meningitis, I was set to need a second op and I will probably not be well enough now to go back to work on 7 January as planned.

During my first period there, I didn't even get to find out what had happened during the op and the nurses' notes about the milestones I had reached were lies. The day before I ended up at A&E I sent an e-mail complaining about this and I asked for copies of all my medical records so I could find out for myself what happened. Then of course I got re-admitted and suddenly they were very attentive. Probably because they thought I would sue them!!!!

Has the op been a success? I'm not sure, as I can't move about much because of my head. I am still on the same meds as before and the MRI shows the surgery site is still inflamed and swollen, so it's too soon to tell. I wish I had never heard of Kings. Ironically, everybody who has seen the wound marvels at how neat it is and that there should be no scar. I think the mental scars from the whole KCH experience will take a long time to heal.

Gotta go, my head hurts. I will catch up on posts as I am able to.

Best wishes


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6 Replies

  • Posted

    hi tfu!! :hug:

    we were worried about you, god we had every right by the sounds of it!! :steam: i'm so sorry to here you've been through more :bleep: !! and i can't believe they still cannot get nothing right!! oh do you think i can change hospitals :huh: i really don't want to go to kings no more cos they've put me through some too!!! omg! i am so pleased you got in touch, i'll let gail know how you are cos she had her op last week! i'll text her later and let her know ok, we were worried. i'm glad your on the mend, things can only get better surely now eh? :cheerup:

    take care,

    :holly: mandy :holly: x is pigeon still ok? lol, take care,

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  • Posted

    This is dreadful, I'm staggered at how badly you have been treated. I've heard about someone else who went there to have an ACDF and they took the wrong one out!! I'll probably be sued now - oh well.

    When I had my laminectomy earlier this year, the lady in the bed next to me had a 'leak' and was on strict bed rest for a number of days - she wasn't even allowed to sit up to eat.

    You must be cross with your GP aswell. I checked my wound after 10 days and all was well, by the time I went to the GP 2 days later to have the stiches out the skin had grown over them - GROSS. How can they possibly justify not seeing you when you had concerns about your wound.

    Guess I'm a bit grumpy today - I hope you make progress and sorry you have had such a bad experience.


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  • Posted

    Hi Tfu,

    God what a time you've had, poor you!

    Hope your headaches don't last too long.

    Bye for now.


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  • Posted

    Hi girls,

    Thanks for your support. I have been pretty down with everything that has happened over the last few weeks. Between the after effects of the lumbar surgery and the CSF leak headaches, it has not been easy being mobile. But with Christmas just around the corner there is so much to do. I tried going shopping yesterday and today but the whole experience just knackered me each time. I think the chance of me going back to work on 7 January is virtually zero.

    I must thank my lucky stars though that I got away with not having a second operation. The surgeon booked it in, I signed the forms, spoke to the anaethetist....everything. But on the morning, I just broke down and couldn't cope with it. If the bed rest hadn't worked I would have had no choice. You are right Sandra about not being able to sit up to eat, even if you were allowed too, you wouldn't be physically able to anyway. The pain on sitting/standing was excruciating, but lying down was fine. It was quite serious, but most of my information, yet again came from the internet. I found out about the high risk of getting meningitis. They weren't going to tell me that until I asked!!!! Thank God I could get the internet on my phone.

    The risk of a CSF leak is only about 2-3%, and 90%+ are rectified during surgery. So what happened was pretty unlucky. I had never heard of a CSF leak before, now I would urge everybody to take any oozing seriously and most importantly make sure that the hospital properly checks it out. I would hate anybody else to go through this. But complications do happen, that is a reality.

    I know I have had a horrendous time at Kings Mandy, but you have to have faith in your surgeon. It is all we have. Anyway, statistically, you should have no problems. Hang on to that belief. They are supposed to be the best. Whilst I was in most of the people there were from Kent....Canterbury, Maidstone, Margate, Whitstable. It was a bit of a problem for their visitors, for some it was a day trip!!! There was hardly any local people there at all. Maybe the Kent hospitals should club together to open up their own Neurosciences Centre.

    I need time to recover both physically and mentally. I would like to think that in 6 months time I can look back on this and despite everything think it was all worthwhile. But I worry about not being able to go back to work as planned, as the time off will be unpaid and SSP is even less than IB!!!

    It is early days yet. What kept me going before the surgery was what others here said about having no regrets about their surgery and that they would do it all again. I don't feel like that, probably because of the additional problems post surgery. Maybe that will come with time. I just feel as weak as a kitten, and as though I have gone 10 rounds with Mike Tyson. Apart from my little disasterous shopping trips, I am still having to lie down for 22+ out of 24 hours. It is so boring!!!

    Right now the only thing I have to look forward to is Mandy's culinary delight of roast pigeon on Christmas Day. Is it OK to bring the family, Mand??????

    I hope that Gail is in better shape than me.

    Best wishes


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  • Posted

    hi, :lol:

    i got 3 pigeons!!!! all welcome :nahnah: , you sound abit happier, i'm pleased, oh its late, nite x

    :holly: mandy :holly:

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  • Posted

    OMG thats just horrific I am so angry for you!!! I hope all does turn out well for you and you can look back in 6mths time Pain free.

    I am sorry but need to rant how long can back sufferers just be ignored its like a big black secret ... IT MAKES ME LIVID!!!!!!

    I am 'fixed' now after my op 2 yrs ago but will never be able to forget such a hard and painful time and you are just sent home with no after care ....gggggggggggggggrrrrrrrrrrrrrrr!!!!!!

    Sorry again hun I Truly Truly hope you come through this fighting fit.

    Enjoy your pigeon pie and merry christmas, Lorraine xx

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