Angelas Update

Good to hear from you!!! Fingers crossed that someone will have some answers and more importantly some useful treatment for you on 31 July! I can fully understand your despondency though as days become weeks become months and on and on it all goes.

As for me, as of today I have officially given up!!! I have started legal action against the NHS for my botched treatment but as for any hope of recovery I am now beyond caring!!! Getting transferred to a new hospital is taking an age. Even though once I see a Neurosurgeon there I will probably need to be farmed out to various other Consultants assuming they agree the 'treatment' plan of the old hospital. Treatment plan...who am I kidding, apart from being passed from pillar to post there is no treatment, just months to wait between appointments!

Last Tuesday reluctantly I went to the old hospital for some urodynamic tests so they could try to work out why I have lost all desire to urinate since the first operation. Having made the decision to change hospitals I really didn't want to go and as I'm now suing them I thought it wouldn't be a great idea. But what am I meant to do???? If I didn't accept this it will be at least 6 months before I get the tests at the new hospital. Anyway, about hours after the test I got a really bad headache, just like the one when I had the CSF leak. Then over the next few days it got better, but I felt iller. I called the hospital Friday to find out if this could be an after effect of the tests. Was told a clinican would call me back, they didn't of course, just the secretary who said that they didn't think the two things were linked!!! Anyway, my GP sent me to the Emergency Assessment Unit at my local hospital (neither the one I'm suing or the new one) and to cut a long story short they think from the tests I have an infection and today they were going to do a series of septic blood tests from different parts of my body to try to find out where the infection is? But last night I walked out. I just can't take any more. I am now involved with 4 hospitals, numerous Consultants and I've had enough. So whatever infection I have is now going to have to sort itself out!!! I have been through so much s**t in the last 8 months and enough is enough. It isn't as if I'm going to get any better. I've got ongoing problems with my leg/foot, confirmed compression in my spine and they are going to adopt and \"wait and see\" approach. More like a \"wait and dump\" approach!!! Apparently after the Urodynamic tests everyone gets to discuss the results and a treatment plan. Everybody apart from me that is. The clinican I saw wanted to discuss them with the Head of the Department that evening and then get me back in 4-6 weeks for more tests, some of which are going to be repeats. It's not as if they are going to be able to cure me. All that I want is the results. Oh and an examination revealed various \"women's troubles\" completely unconnected, that I may need an op for in the future, In the meantime they want to make me an appointment to see a physiotherapist in their department about pelvic floor exercises, even though I am already seeing a Spinal Specialist for acupuncture (which isn't working) and generally physio (which hasn't started)!!! Well to me it is one referral too many and on top of being in hospital the last two days, I have had enough. I am cancelling all appointments now and walking away.

Initally when I joined this site the problems I and most of the people had were generally long waiting lists, generated in part by transfers between hospitals. Now I am learing a new game. Once you get past surgery if you have any problems, you can expect to be farmed out to all sorts of people, none of whom liaise, although they'll tell you they will, until you get lost deeper and deeper in the system. You wait months and months between appointments, to see somebody who is going to do nothing meaningful to help, be

I'm so sorry that you're still in the same boat, :shock: and that there doesn't seem to be any change since we last spoke. It is getting harder and harder to keep motivated isn't it. I wish that they'd just class us as Disabled and at least we could Claim for Disability. The Benefits that I received while I was working have now stopped, I'm struggling to pay my Mortgage and bills, life just can get any worse at the moment.

I've been to have more Bloods taken today as over the last couple of weeks I've been suffering with all my joints, it's now got to the stage where I can hardly walk, my hands are permanently closed as the pain in my fingers and knuckles is unreal. The Doctor thinks that I might have Rheumatoid Arthritis now. :cry: This on top of all my other problems has nearly finished me off. I just don't know how much more I can take.

How long do we have to wait, :x I don't think that I'll ever feel like I did before my 1st Op. I really wish now that I hadn't had the 2nd Op. Oh well I'll see what the Pain Management Team say tomorrow, then on 31st I have to go and have another 2 Sacral Steroid Injections, what is the point I ask myself.

Keep me posted as to how you get on. Take care and try to stay positive (that's a bloody laugh isn't it).

Angela

I hope that you don't have rheumatoid athritis on top of everything else. Good luck with the results on that. Would it be because of the spinal problems or is this just going to be a weird co-incidence??? I think that generally I am just falling apart. I am off work today because of this infection I have had since last week. I can't go to my GP who will just tell me that I shouldn't have discharged myself from hospital on Sunday night. About six weeks ago I had two teeth out under sedation at my local hospital. The main reason for the op was to remove the tooth that the other hospital had managed to break when they did the first op back in December! Yep they couldn't even yet that right! The other tooth would have needed to come out, possibly in a few years, but I thought they may as well just do both at the same time. It got infected after the op and I'm hoping that the cause of this infection is that it has got infected again. If not, I guess it will be back into hospital so they can find out what it is.

I tell you Angela, I am so fed up with all this. Barely a week goes by when I'm not at a hospital for something. But nothing ever gets any better. Before 2007 when I had my initial back problem I didn't go to hospital from one year to the next. Like you I wish that I had never had the (first) op. My body is falling apart fast. And trying to keep going is exhausting. I don't get sick pay from work, so I have had to use all of my annual leave since December for illness.....either recovery from the second op, when I needed to take days off because I could barely stand, or for the endless hospital appointments.

For you, because this has all been going on for so long, I think that they should do complete tests (MRI, CT, Myelography??? etc) to get a complete picture. Internally all of the swelling from the second op should have gone down now. Just picking at the edges and then sending you away again for another few months to \"see how you get on\" just isn't good enough. I have decided that if I win the lottery I am going to go to the USA and get every test under the sun. And I'll take you and Jess with me!!! But don't get packed yet, I have to win the lottery first :lol: :lol:

For me the problem is that I just have no trust left any more. That finally died at the end of May when the Consultant I saw sat there and told me that I didn't have any compression. What he didn't know is that I had a copy of the written report. And when I read it out to him, (it stated I have significant compression!) he was all \"oh, yes, um, ah, yes, sorry I must have missed that, um ah!\" He didn't miss it. He was just covering up, because I had complained about his colleague. The pair of them had obviously got their heads together and decided they weren't going to operate, so he decided to just lie and tell me there was no compression. So are they not going to operate because it isn't needed or because they don't want to dig THEMSELVES a deeper hole because they botched up the first op and I complained????

All that I want is some honesty and I expect that you are the same. If they are sitting there looking at my records (including the urodynamic test results) thinking that this is all hopeless and permanent and worse is to come, then I would much rather that they just told me. Sending me off for a few weeks/months to \"see how I get on\" is a waste of everybody's time.

I think you would feel better if you didn't have the constant stress of money worries hanging over your head. I know how frustrating it is, particularly when the answer is to go back to work and you are there, willing but just not able!! It sux Angela!!! It really does.

Fingers crossed I win the lottery then, eh!!!

Best wishes

TFU