Pavlovthecat finally has surgery booked! Woohoo!

[PavlovtheCat]

No don't think for a moment that I want surgery. I don't. But more than not wanting to have surgery is me not wanting to be in horrendous pain any more.

Discectomy for sure. Possibly fusion as one of my vertebrae is out of alignment, not the full details, as DD is bugging me for dinner so will come back in a bit with details.

But fucking yey! Only had to wait 18 fucking months to be heard.

Ooh yay for you Pavlov. Remember talking to you about your back woes ages ago. So v. pleased you've got them to listen.

That's pretty much what I have understood too Pavlov. That is what has made this whole thing so difficult for me.

I have known I needed the surgery for some time. Because this was just a few weeks before I was moving the consultant said it was fine for me to wait 6 months, if I felt I could manage, as long as I continued with physio in my new area. (200 miles away) the plan was to return home in the summer and have the surgery then.

It was this issue with not being able to get physio, that has worsened things. As I said, they couldn't do anything without a scan, even though I had my scan report from October. As time passed, it was deemed I needed a new, more recent scan. Arranging that turned into a drama, as my referral letter was lost, I was sent to the wrong hospital trust, I turned up for a scan appointment , sat there all day, nil by mouth, cannula in in case of emergency surgery, only to be sent home at 4 o'clock as the registrar had not signed the form as urgent. I have sat and cried in front of more doctors than I care to mention and had more fingers up my bottom ( excuse that please, but they have been my lowest points!) checking for equina cauda. Everyone is sorry, paperwork blamed, no one seems to put on the computer what they say to you.

My DD is 11, she can look after herself somewhat, but this is central London so still needs some escorting to from school. My DH can come for a week or so but it's a tiny flat with one double bed that DD and I share, 4 weeks is impossible for him to do. There is no one else to help. After all this time, waiting 3 more months for the surgery seems doable. I'm too young, there is no need for me to be like this. I will be pain free ( but know it won't fix everything).

downton oh I so feel your frustration, anger and pain. I have not had fingers up my bottom but I have had the banging of my head against the brick wall, being pushed around etc, as everyone posting on here going 'yey!' for me will attest to, having listened to my moaning about it all for so long now. I have also cried in front of many professionals, have felt quite humiliated by the process of bearing my emotions only to be fobbed off. But unlike you I don't have the problem of being alone in an area without DH and a child to look after (and she still needs you, even if you don't have to carry her to bed now) and two different trusts involved.

I will also say. If it were not for some wonderful MNers - some of those have posted on this thread and others who are not on this thread at the moment - I would not be in this position now. It is through the advice and information about what I can ask for from my GP etc, what is possibly wrong with me and what I need to ask about who to ask, and how to navigate the mindfield that is the NHS that others have shared with me, along with the encouragement to kick up a fuss and not accept pain meds, it is all that, which has led me to even be in this position. I never ever knew for example that I could even ask to see a neurosurgeon (didn't really know what one was), did not know what Caudia Equina was, and what to look out for, didn't know I could use, or even ask for diazepam (my saviour on very bad days). I was given links by a MNer to the PCT spinal care routes which helped me know what should be happening with my care (that was a hugely invaluable nugget of info)

So, while it is not going to help what has happened in the past, do use all these wonderful people on here for advise on how to manage the NHS now, and some ideas of how to cope either with surgery, or if you chose not to have it, without.

Have you spoken to PALS? See if they can be your advocate to get something actually sorted properly so that when you return to your DH you can get your surgery planned/coordinated in some way?

I am almost the opposite to you, although our health problem seems to be the same. My home PCT were brilliant. I got everything I asked for and had all the information I needed. It was the timing of it all that did for me.

Wading through the mire of London Hospital Trusts has been the complete opposite. Possibly incompetent, certainly over stretched, this is why I have so much more faith in the team back at home. How naive I was to think my care would just be picked up by the team in my new area. My GP and a senior physio both suspected Cauda Equina at one point and sent me straight to A&E with a letter and also phoned ahead to let them know I was on my way. After sitting in A&E for four hours I meekly asked if they knew how long it would be, cue absolute chaos, the receptionist had not informed the team WAITING for me that I was there! After various prodding and poking by more and more senior people, and me wondering why no one was mentioning a scan, I find out the MRI is not working, the neuro is on leave and they are arguing about which ward to put me on as the surgeon on call won't admit me to the surgical ward because he knows full well I will be sent to another hospital. There was no way I was being admitted to be transferred the next day, they are discussing putting DD into social care, it's 11pm by now. I discharge myself on the understanding that I go straight to the other hospital the next morning.

I put things in place for DD and warn my DH that he will need to come and then sit at the other hospital all day, as I said above, to be told the registrar has not put urgent on the form, therefore there is no scan slot for me. No one has examined me there, the registrar was incredibly rude, asked me what was wrong and when I started explaining for the hundredth time said "who has told you that? Tell me in your own words, not medical terms. " then pronounced that he didn't go off what other people said, he only worked from a scan. And that was that. Thank God it wasn't Cauda Equina. Which I know it couldn't be because I'm 6 weeks past that point now and no worsening of symptoms in that respect.

I'm sorry for such long posts. It is so helpful to be able to tell someone what has happened. Added to this DD is being treated at GOSH and had her own surgery pencilled in yesterday. It maybe goes some way to explain why I am having to make the decisions I have and why I am having to prioritise her before myself, if you like. Emergency surgery is one thing, then there is no choice, but planned surgery... Well ideally it can be when I only have myself to think about. I really worry about people who are not so well informed or who cannot fight to be seen. What happens to them? Navigating the pathway is difficult enough when you know what's wrong with you. When you deviate from that pathway by moving, like I have, it's almost impossible.

What a horrendous experience for you . You ask what happens to people who can't navigate the system. Well, there are a lot of people out there not getting the right treatment, and a lot of people out there suffering unnecessarily with conditions that are treatable, or at the very least manageable, without knowing that there is help for them. As I said earlier, if it was not for the wealth of knowledge from MN I would not be here with the knowledge I have now.

Well good luck to you. I know I will feel immense relief when this is finally over. A friend had just this same surgery last year. She too, asked to wait for surgery as she works in education and wanted to have it done over the summer. However, in the end she was begging them to do it sooner and sadly the first discectomy caused a second disc to prolapse.

After her second operation things are so much better. She has her life back and was pain free almost immeadiately. This is what we have to hold on to pavlov. There is relief at the end of the tunnel. It's not how we get there that counts, just that we do, finally get there.

OMG Downton that is more or less what happened to me 3 years ago!

I was sent for an emergency MRI after becoming incontinent and having sciatica in both legs. I was told to wait after having the MRI as the orthopaedic team were looking at my scan. I was in the A&E waiting room for about half an hour when a doctor came and said I was going to need an operation on my spine and was going to be transferred to Hurstwood Park neurological unit to have the surgery there. They sent my scan over to Hurstwood Park and they said it wasn't bad enough to have surgery!!

I was then admitted to hospital and over the weekend became paralysed and began retaining urine and had to be catheterised. They then thought I had GBS and I had a lumbar puncture. They said I may be transferred to the ICU as I may need ventilating if the paralysis stopped me from breathing.
The next thing I was sent to Hurstwood Park anyway where I stayed for about 2 weeks and they did nothing and I was sent back to the DGH and discharged 3 days later in a wheelchair unable to walk.

Bloody hell, that's awful. Certainly sounds like Equina Cauda. And they did nothing?

How are you now? Have you recovered somehow or do you still have the paralysis? It is just unbelievable that what one person says is a medical emergency another just brushes off. I had a number of professionals seriously concerned, my GP, physio, A&E doctors, a consultant and a registrar saying I needed the surgery and it was all wiped out by one registrar, who refused to look at my previous scan, dismissing me because I could still lift my leg 6 inches off the bed. Thankfully I did not have paralysis, although there are areas in my leg that I cannot feel anymore and they say that sensation might not return now.

I do hope you are alright.

Just to say, it is not an orthopaedic team you should have seen anyway. You needed a neurosurgeon. I expect you know that now.

The neurosurgeon at Hurstwood Park said I was depressed!!!

I'm still not fully recovered and was then diagnosed with fibromyalgia which is nothing like what I had!

I've been told all sorts of things, my GP said it probably was GBS and the chiropractor I go to asked for a copy of my MRI scans and he said it probably was Cauda Equina! My back is still so painful but since going to the chiro it has been tons better then on monday I slipped over and hurt the right side of my back (it's always been the left) and now in agony again. Been given tramadol and naproxen but still painful and I have a burning pain in my right calf.

I don't know anything about fibromyalgia.

The injury you have done now sounds like a disc pressing on a nerve in your right leg. This usually fixes itself in a short period of time but if it has not got better within 3 months it won't fix itself.

Have you had an MRI recently? Give it a while and then press your GP for a new referral. Are you taking any nerve inhibitors? I have found Pregabalin(Lyrica) helpful. So much so that I don't use any painkillers, not that it doesn't hurt, but I manage without.

Really though, your scan should have been definitive. Cauda Equina is a medical emergency that requires treatment within 48 hours. So if it was that that caused theparalysis and they didn't treat you correctly, well I would want to find out exactly what had happened and how it was missed/ left to get to that stage. Easier said than done.

downton, we've spoken before on pavlov's previous thread - I had a discectomy/foramenotomy back in 2011, for a huge prolapse at L5/S1. I was in permanent, severe pain, loss of sensation in my right foot, the whole nine yards.

I was back at work, more or less pain free, 3 weeks after the op. (And I could have gone back after 2 weeks, but I fancied another few days watching daytime telly.) I remember waking up after the surgery (that lovely pink fluffy feeling ) and thinking "bloody hell, my back is SORE but that burning feeling down my leg has all gone!"

2 years on, I am 95% pain free. I still get a bit of sciatica, particularly if the weather is about to change (the Met Office should employ me, I'm that accurate). But it's not usually enough to even pop a painkiller for. I have also had another child in the intervening period and that part of my back stood up to it ok. I do now have problems with my left sacro-iliac joint, but that's a muscular thing rather than nerve, so much easier to cope with. (It may be linked to the scar tissue which inevitably builds up after a discectomy, but equally it could be linked to the relaxin released during pregnancy. In any event, it's getting better all the time.)

Let me know if you have any questions about the surgery and I'll try to help.

Hi Pavlov,
I'm glad they are listening to you and that you have the go ahead for surgery. I really hope it reduces your pain.
I do know people who it has helped, but I know many more that a fusion has made much worse.
I hope you are in the minority and it helps you.

delighted for you!!

Such good news Pavlov, glad the waitings coming to an end.

Just found this

What fantastic news, hopefully this is the beginning to the end of all the pain you have had to endure.

My DH had the surgery in Feb & his surgeon was frustrated that the system had made us wait so long for the operation that has totally fixed the problem. Only 1 1/2 hours in the operating theatre and DH's life has been transformed.

It took quite a few weeks to withdraw from all the pain medication that he had been taking with some 'interesting' side effects. He has also discovered that he now has a problem with his knees which is probably due to his twisted posture that he had adopted for so long to try to minimise the pain. Hopefully, as time goes on and with more physio and exercise then his knees will improve.

The sciatic pain has completely gone, aside from a few twinges now and again something that we hardly dreamed would be the outcome.

Hopefully you will get your surgery date very soon, now I've found you again, I will keep coming back here for updates