Pins and needles

Hi all

I don't post much here any more because I don't feel that I am positive enough for you all. I have noted however that the people here that are having the hardest time are the people that have had two surgeries, such as Jessica and Angela. Maybe that is just a co-incidence but I suspect not.

Having been through a horrendous time, I had hoped that it would all be okay now. I went back to work two weeks ago even though I had a lot of ongoing problems with my leg, particularly at night. I had hoped that it was just because the nerve was learning to re-function again after being very badly compressed. I went to see the Consultant on Thursday and the bottom line is that all is very definately not well. I need to have another MRI scan. That will happen in the next few weeks. The surgeon wants to wait because of the extent of internal damage from the previous surgeries and she thinks that any problems will not necessarily show up now. Before the operations all the numbness was below my knee, but now it is also above my knee and into the buttock. It would seem that this may all relate to the mistake they made during the first surgery. They cut the dura but didn't spot it during the surgery, as they should have done and I had a major spinal fluid leak, but because of their ongoing errors it couldn't be treated conservatively and eventually it formed a pseudomenocele (basically a very rare large puddle of stagnant spinal fluid which filled the tissues) and I needed a second surgery to repair the damage and another discectomy, after being ill with suspected Bacterial Meningitis. Now it seems that maybe she didn't repair the dural tear properly and there is possibly a new pseudomeningocele forming that is pressing on a nerve, or that some nerve endings are caught up in the dural tear. Other options are another prolapse or permanent neurological damage. Either way, it's all pretty awful. If this does go back to the dural tear, then I will be very angry, not because the cut happened, but because of their total failure to have done the right thing afterwards. Not just once, but over and over. I dread another operation. I am mortified that I may be left with this damage permanently. I know that every surgery has risks. I accept that, what I have a problem with is how they didn't do the right thing afterwards. It's a long and complicated story, but the trail of events almost defies belief. I just feel so deflated and exhausted with all this.

A dural tear doesn't happen very often, about 3% or less for first time surgery. But over 90% are spotted and repaired during surgery. Those that are spotted subsequently are virually all able to be treated with conservative bed rest. The chances of getting a pseudomenocele are about 1500 to 1. They missed my tear during the surgery and afterwards in hospital, failed to spot that the fluid coming out of the wound was spinal fluid (CSF) even though it leaves a very distinctive marking....a double halo. Instead of conservative rest which could have sorted this out, their sole aim was to get me out of bed, march me around the ward, so they could discharge me home to free up the bed. Even when I had a flood from my back 3 days after being discharged and had the classic 'CSF headache' which was so bad I couldn't sit or stand for more than a few seconds, at best, all I could do was lie down flat on my back for days, back in hospital they still didn't do the right thing. They didn't even give me the right MRI scans!! It was only when I got very ill over Christmas, had the most unbearable head pain, blacked out several times and had a fit/seizure and was readmitted back via A&E that they finally woke up. They thought I had Bacterial meningitis, which is infection of the spinal fluid.

And now here I am being told that there may be further problems directly linked into the dural tear with the possible need for surgery and neurological damage that cannot be fixed. Having needed the second opera

Cheers guys

Going to A&E at local hospital tomorrow (Monday) as at weekend my local hospital seems to have no staff on??!!!!! dont understand that but hey thats the NHS for you. Got al lot of help at home at moment which is a god send and popping my pills like there's no tomorrow. (think I may be overdosing) hope not.

In response to TFU, Walton dont have an A&E section as she so rudley informed me.

I e-mailed Walton complaints section yesterday so the bleep will be in the s**t I hope. It just gives me sooooooo much faith to know when I'm ill and in need, the medics really care - NOT.

None of us here have asked or even wanted to be like we are, and I'm sure you'll all agree we wouldn't wish this on out worst enemies.

Well, I'm going to get back on with my degree studies now to keep focused on something. TTFN.

Jessica xxx

Hello TFU

Nice to listen to your experiences. With exception to spinal fluid leakage (my mate has that and is in a very bad way) I understand what you are going through.

This site has been a god send to me, but like you, I feel all I do is moan and moan. Got to let it out somewhere though mate as my poor family I think have heard enough. hahahaha.

I suffer from depression and have done for years and just when I thought I had it sorted, WHAM. I cough and all this crap happens. They ballsed my first op up leaving me with caudia equina syndrome. Luckily that went after the second op but like you, I have severe nerve damage to right lower leg and now wear a splint as it is permanent.

At present as you read in my other posting, I am currently in agony with no help, siatic pain back and losing feeling in whole of right leg and buttock. Haven't even been loo for over a week, waterworks ok though at moment. All is starting to go again.

Hope you keep in touch on this site - they are lovely people to help keep you going. Would be nice like you say to be a straight forward case.

We aren't though. Dont think we are the only ones though eh?

Jessica :D:roll:

OH MY GOD my deepest thoughts go out to you, you must have so many thoughts and feelings going through your head at the moment anger,pain desperation the works i really do feel for you i'm at the pre op stage at the moment with two ' specialists' contradicting each other as to which op is best for me quite frankly neither of them give me any confidence at all when they them selves can't make their minds up, think i will not have any op try to deal with the pain best i can ,don't think doc will let me stay on morphine for ever but having heard what others like yourself are going through better the devil you know i think unless matters get taken out of my hands and the prolapse disc ruptures and damages the bladder/bowel nerve then see where i go from there, but enough about me, have you consulted a good solicitor cause right at this moment not only would i be thinking about what THEY are going to do next but what your quality of life/every day living etc holds for you ,but they have to take responsability for the damage they have done to you and not even realising what their mistake was for such a long time i'm sure you must have a case against the hospital/specialist. just as a matter of interest wno is your specialist and which hospital were you at just trying to find out if antone has gone under Mr Cowie hope hos salford/Mr Krishnan leighton hos crewe.

Hope things start to go right for you keep posting we are all here for you words don't do the dishes ,shopping,look after the family etc but i have found it helps to just talk to others who understand what your going through. Take care keep your chin up XX

Hi Jessica

I so hope that you get a better response from A&E today. With a bit of luck you'll get re-admitted back to Walton Neuro Centre and won't even see this. I can understand you being so upset, you do need urgent help. Anybody at risk of CES should be seen instantly, particularly as you already have experience.

These big centres, specialise in factory style conveyor belt surgery and as we both know, when they mess it up, you can bang and bang on their door all you want, but they are very reluctant to open it!!! The sad thing is though, in my case, I would have rather gone ANYWHERE else, but in an emergency that just isn't possible.

I hope your friend gets her CSF leak sorted out before the situation gets out of hand.

I'll be thinking of you.

Hello jm,

Rest assured the hospital resonsible for my blunders is based in London not up north!! And yes, I am taking legal action against them, my insurance company has just agreed to support my claim.

Please remember though that most people have straightforward surgery and the results afterwards are often very very good. Besides which, you can't live on Morphine forever!!! But it must be difficult, when you have two 'specialists' who can't agree on the best course of action. It would make me wary too. Maybe you could get a third opinion??? I know you shouldn't have to, but it may put your mind at rest. Before my first surgery, I too struggled with this whole should I/shouldn't I issue. I think most people do. In my case, it was also looking to the 'devil I know', plus the fact that the operation would be a huge disruption in my life, as well as to my family and my employer. What swayed it for me was remembering back to the 'defining moment,' the moment when I would have done ANYTHING to stop the pain. In my case it happened on 13 May 2007, when I had a very, very bad reaction to Tramadol and that combined with extruciating pain and hyperventilating that wouldn't stop even though I passed out several times resulted in me being taken, handcuffed for my own safety, by the police to the local mental hospital under a section 136, for assessment. They let me go after a few hours because they could see it had all happened because of the Tramadol/pain/hyperventilating, but it was an experience I will never, ever forget. I don't suppose that there are too many sufferers of back pain, who's symptoms are so bad they end up at a mental hospital!! I have never forgotten and I never will. It was my 'defining moment'. I don't suppose that most people's are so dramatic, but I believe that everybody has one.

Good luck with whatever you decide.

TFU

Hi Tfu,

You poor thing what on earth have they done to you? :shock: I can't believe that a simple procedure can turn into something major with the risk of you having permanent paralysis. So after you've had another MRI Scan what did they say that they're going to do for you, the thing is the longer they leave you the more Nerve damage can happen. You should've had the scan there and then.

You must keep reporting on this site as I think it helps us all to get things off our chests as we all know what each others going through and we are all concerned about your outcome, I know if it wasn't for this site god knows what I'd of done, you've all been a great help and support I know some of us have had a moan now and then but we all know exactly why we're moaning.

I totally feel for you regarding the Sciatica, it's the most horrendous pain ever I like yourself had it in my bottom, right down to my toes on my left side. I couldn't sit, stand or lay, I've had 2 kids and even going through 2 labours was mild compared to Sciatica Pain. I also had a Severe Headache after my Op I suffer from Migraines but this one beat them all. It finally went off after a couple of hours.

How come these [b:4e715c3d49]Professionals[/b:4e715c3d49] didn't realise that the fluid oozing from your wound was actually Spinal Fluid especially after having a Dural Tear :? , surely they know the difference, although this is the NHS we're talking about.

Try to stay positive I know it's hard too when everything around you is going pear shaped but you can't let them get the better of you keep fighting. Keep your chin up. I'm thinking about you I hope that you have the scan very soon.

Keep us informed of your situation.

Bye for now, take care.

Angela

Hi Angela,

I will certainly try to keep my chim up. How about you, how are you doing? Are you in less pain now?

What will happen after the MRI will depend on the results. The surgeon did arrange an ultrasound that afternoon though, because since the first op, I don't have the slightest desire to wee. That is something else that needs to be sorted out. For all I know that too could be the result of the dural tear, or another 'little mistake' during the first surgery. It is all a mess. I need to think about changing hospitals but that all takes time and that is the one thing I don't really have. As we all know, there is a greater risk of permanent damage, the longer the compression or problem goes on.

New Years Eve, having had the second surgery in less than four weeks on 30 December, as I laid there on strict bed rest, wired up to an IV drip to treat Bacterial Meningitis I really thought that I would be finally leaving the problems in 2007. It would seem that is not the case.

Roll on 2009.........

Best wishes

TFU

Hi everyone

I know I'm one of the lucky ones, I've been very well treated/supported by my hospital and as you know my operation is booked in for 9th April.

I'm now panicking about the surgeon who's going to do the operation. Some of you guys are still really suffering after your operations and my heart goes out to you.

My surgeon is an Orthop surgeon who specialises in knees/hips. I got some advice last night from someone more in the know about hospitals who said that she would suggest a Neuro do the surgery and maybe pay to have a consultation privately.

I'm going round in circles now, should I just get on with it on the 9th April or possibly delay it to get the right surgeon? My pain is manageable but I have kids and can't drive so you can imagine.

I don't know what to do for the best

Love

Jude xxx

Hi Jude,

I am 3 weeks post op from a posterial 2 level lumbar fusion with instrumentation. Like you I had good support from my hospital and I was very anxious especially as it got nearer to the op itself. I had my operation done by an orthapeadic (sorry about the spelling) surgeon who is the only spinal specalist in the borough but he also does hips, knees etc.

What I would do is just find out how many back surgeries your surgeon has actually performed and if he hasn't which I'm sure he has as they surely wouldn't let someone do your procedure if they had no experience, and maybe it will put your mind at rest. If he has none or little experience talk through your options with the consultant.

As far as recovery, so far, so good, I'm doing well but be prepared for the fustration and days when you are down, my pain is much better than before the op and everyones different, think as positive as you can, take it easy and remember it takes a long time.

Good luck for April I'm sure you will be ok, what you are feeling is last minute nerves but check with the surgeon to put your mind at rest.

Take Care

Raindrop :lol:

Hi Tfu,

My pain comes and goes if I do anything slightly strenuous my back aches like hell, if I sit like a zombie all day then it's fine. I'm sick to death of sitting and taking things easy I've been doing this for 14 months now. I have to go back to see the Consultant on 1st April (that's a laugh April Fool or what). He says that he thinks the pain should have calmed down by then. But we know that these things are not straight forward.

I also thought that 2007 was going to be a better year but things never go right for me and you it seems!

Take care, keep me posted.

Angela

Hi Jude,

I know you must be worrying about your operation but surely they wouldn't let just anyone do your op. They must be qualified to do them, if I was you I would just go in April and have it over and done with. Why should we have to pay to go Private it's not on and you're likely to get the same Consultant doing the op anyway!

It's all about your pain if you cannot cope with it for much longer then go in in April. If not think about changing hospitals or going Private. I would possibly find out how many operations this Surgeon has performed then make a decision then.

Hope this helps, keep us informed of your situation.

Bye for now,

Angela

Hi All,

1. Has anyone else suffered from Mouth Ulcers that won't go away even after several courses of antibiotics, I had a huge one on the side of my tongue last August, I had it for about 12 weeks the Hospital done a Biopsy on it which turned out ok. But I have again got another one (7 weeks) in the same place as before and it's sheer agony, I've been to the Hospital today they say I have to go back in a months time and if it's not gone then they'll remove it again. They seems to think that it's all the medications I'm taking but when I've read the side effects, etc none of them mention Mouth Ulcers.

Does anyone have any suggestions! I've tried everything from mouthwashes to gels etc.

2. While I'm on the subject, I've also been using Morphine Patches (5mg) since August last year after my operation on 2.1.08 they put the patches up to 10mg, they've been fine until a couple of days ago. Where the patch was I have had some kind of reaction to it, my skins all sore, raised and itchy. I've tried it on other parts of my body but the same thing keeps happening.

Angela

Hye Jude

I've seen a neuro and an orthopod, second opinions can be very confusing mine have suggested two different ops wish i'd only seen the orthopod and gone with that option now theres two ops on the table both in disagreement , quite honestly if you got your head round what your doc has said then stick with it have faith you will be fine .Everything takes time to settle down don't try and run before you can walk allow the healing to happen when its ready to heal take things slow do your physio as and when your body tells you its ready. I think everyones body has the means to tell you alot about whats going on, everyone probably thinks ive had to much morphine and talking complete c*** im sorry if thats the case but what i'm trying to say is go with your gut instinct do you feel in your heart that this is right .

I hope you feel that its right to have the op and you can start to live your life,because lets face it living with the pain that we all live with every day is not right . My thoughts are with you praying for the right out come for you, keep talking asking questions ,big hugs take care xx julie

Oi oi

K have had the nerve root injection at four today, its now almost four hours ago, and at the mo, leg and back feel heavy9 but all ok, hopefully will all feel better in the morning.... so all is as expected, have already booked next one for eleventh Feb in case I need it, can cancell nearer the time, will keep u all informed.

On the positive side, I got Spag Bol tonight which my darling wife :oops: is happily making for me :P ( doesnt mean she doesnt the rest of the time :magic: ) but I always feel I should mention her as she has been so good to me....

Anyway, Thats a catch up from NO REGRETS RUSS

Love and hugs :lol:

Russ

hi russ

so far so good! how was it did it hurt? is the injection meant to work straight away? sorry all the questions just interested lol (never know whats around the corner eh) fingers crossed for you,. O and enjoy your spag bol , i like you have a brill partner and really dont know how i would have coped alone, but it is good to give their ears a rest from time to time and air our problems on the site and know theres peps that understand.gail