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Pavlovthecat finally has surgery booked! Woohoo!

(42 Posts)
PavlovtheCat Tue 07-May-13 18:29:46

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 <bad mummy> so will come back in a bit with details.

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

grin finally, that's good news and hopefully a big step forward! week for for persisting at that horrid gp wonder what he will say now

That is really good news smile

Madsometimes Tue 07-May-13 21:07:20

Bloody hell, finally someone has listened to you.

May your surgery be a total success, so you can get back in the kayak.

In the mean time, have some wine while you wait.

PavlovtheCat Tue 07-May-13 21:18:16

denial Funnily, since I burst into tears on numerous occasions on him and insisted he refer me (literally stomping, crying, demanding how he can let me leave the surgery in that physical state and do nothing) he has changed his tune, and now on my side! He was encouraging me last week to insist that I had surgery if the neurosurgeon felt he would waiver. He said I must have it as he has seen my condition deteriorate and it is clear there is no other option now. A complete sea change! He has seen the latest MRI you see, and the letters from physio (which I read some of while waiting for an x-ray today, as they gave me my entire hospital notes - 'mrs pavlovthecat is now clearly in a bad way, and her physical examination correlates with the results of the MRI. I have spoken with Mr xxx who agrees she needs to be seen in his clinic. Mrs Pavlovthecat comes across as a proactive woman who has has clearly had enough...' and things such as 'mrspavlovthecat has shown willingness to try different therapies and has continued to try working throughout this last episode, for which I have given high praise' along those lines in my notes! that last bit from my own GP!). How about that eh?!

PavlovtheCat Tue 07-May-13 21:29:54

so, now I am able to give details, the kids are almost asleep and I am done with work for 30 mins, I can update.

Neurosurgeon has said that the vertebrae of L5? (the top one of the L5/S1 section is out of aligment, it's sort of hanging forward and this is probably why the disc prolapsed. He doesn't know why this happened - could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is a tear there (which may well have been the shower curtain hitting my back, but the disc would probably have already been bulging at that point).

He said he would not normally enter into the idea of spinal fusion and right at this moment he is not doing so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, he said that this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition (he said that if my lower half were not visible on the MRi he would not be able to age my spine as it is as well as it would have been when it first finished growing) that indicates that there is a large enough coincidence between me having severe localised back pain, my back 'going' regularly and the potential instability of the vertebrae due to the misalignment. For that reason he is considering fusion. So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. If it is, he will review his decision and consider/discuss with my fusing the vertebrae, if no movement, he will wait and try the discectomy first. He said there is around 15% chance that will help the back pain, but it's not huge - it will only fix the leg pain and even than is 80-90% chance of an 80-90 improvement. That's enough for me to live a better life so I am ok with that. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. (he will put two rods downwards and then one across between the hips into a t-shape shock)

Anyway, recovery for this is like a month so not huge. And if all goes well, I could be bodyboarding within 8-10 weeks! YEY!!! Maybe even this summer! (maybe as I got to wait 2-4 months)

ovenchips Tue 07-May-13 21:34:36

That's great news! I am mainly a lurker and have read some of your posts about what a very difficult time you've been having.

Goodbye pain and hello bodyboarding!

Treelander Tue 07-May-13 21:43:06

Good for you! Another lurker here - I usually notice the posts about bad backs having had one for years. I had a fusion last year and for me, it was definitely the right decision.

The emotional stress of coping with a bad back is huuuuuge so sounds like it's onwards and upwards for you smile.

fengirl1 Tue 07-May-13 21:58:57

Pavlov - about time! Spondylolytic spondylolethiosis by any chance? Sorry if spelling is wrong, it's a long time since I've written it - or tried to say it!

Ubermumsy Tue 07-May-13 22:04:38

Yay!! Not got time to respond more fully just now, but....yay!!

Ubermumsy Tue 07-May-13 22:05:00

(PS fishandjam as was)

PavlovtheCat Tue 07-May-13 22:54:39

thank you everyone. Sounds daft, but it's good to feel listened to, and i know there IS something wrong. I mean, of course I always knew it, I cant possibly be in so much pain and there not be, but, no-one seemed to do much, give me any hope, suggest anything that actually worked. It was like 'yeah, shit happens, oh dear, have some drugs' I actually felt like the medical teams thought I should buck up and get on with it, it's just one of those things, you know, like a wart or grey hair 'it's just what happens when you grow older' (heard that so many times).

But now, there is a proper real problem that is causing all this and no it might not be fixable completely in on go, and possibly I will have some pain/discomfort forever, but, it's being dealt with by someone who has actually said 'yes, we can do something'.

And, also sound daft, but I now feel it's ok to take some fucking strong pain meds which I have been trying to avoid. Why is that? Almost like it's ok to give in a bit now, for a day or to, and just be in pain and take the meds.

PavlovtheCat Tue 07-May-13 22:55:46

fen he didn't give it a name - I'm going to google that though, see if it matches what he said I had! It is literally one vertebrae that is not in the right place. The rest of my spine is as it should be.

PavlovtheCat Tue 07-May-13 23:08:18

fen yes that is pretty much exactly it, including symptoms (the slipping of the spine included!) But the low grade, not the high grade.

how mad is that! i wonder why he didn't give it the name it has? I guess 1) it's a huge mouthful and 2) it's probably irrelevant. But I love knowing all that shit!

BreastmilkCrucifiesAFabLatte Wed 08-May-13 06:54:30

I'm so pleased for you. You've been in so much pain for so long now. Did you get any idea of waiting lists etc?

PavlovtheCat Wed 08-May-13 09:10:26

bm thankyou! 2-4 months, which is what I expected, but he did say its not a long procedure, an hour, two at most, so he may well be able to fit me in around another surgery, unlike full fusion which takes hours (waiting list is maxed out for that - wow there are a lot of people with back problems in this neck of the woods). I'm ok with that, there is light at the end of this tunnel now, I've waited this long, I can do a few more months now I have some hope.

gallifrey Wed 08-May-13 21:44:46

wow that is fantastic news xx

gallifrey Wed 08-May-13 21:46:08

quite jealous now, I want a pain free back too!!

Ohwooisme Thu 09-May-13 10:00:50

Oh great news - am sooo pleased to hear its finally ) (posted under previous name on your old threads !)

I had a discectomy earlier this year - happy to give you the low down if you want any infosmile

Ohwooisme Thu 09-May-13 10:01:08

Finally going to get sorted that should say!!

DowntonTrout Thu 09-May-13 10:50:16

Hi Pavlov, we have spoken on here before.

I too have a date for my discectomy, in about three weeks. I am still debating whether to go for it or put it off (again). I have 2 prolapsed discs at L5/S1 and L4/5, although the L4 one is broad based and they say they will not touch that for the time being. Although I was approved for surgery in December, but was told i could safely wait until the summer with ongoing physio, I moved, and had to start the whole process of getting referred again, which has been fraught with problems but I finally got to see the neuro here 2 weeks ago.

I was in with his registrar, who was not being very positive, when the consultant, Mr M, popped his head around the door, glanced at the scan on the screen from across the room and said "you need surgery! I can fit you in in May." he then took over the consultation and I was so relieved that I had FINALLY got back to the position I was in 5 months ago, before I moved. I am still angry that the different health authorities don't share information and that this has gone on all this time, with me in so much pain, and having to fight every step of the way.

Even so, I am scared, I never wanted surgery, I have tried everything else and the physio was helping but of course that stopped when I moved here and what I was fighting for was a new physio referral, so I could keep the surgery at bay as long as possible. However, with no information being shared, so no scan to look at, no physio would touch me. So I needed a new scan and a new consultant opinion. That is what has taken the time. Those months with no physio mean my condition has worsened, the sensation loss and reflex loss may now be long term or permanent, and physio now will not help. I have to move again in July, hence not knowing whether to have the surgery at the end of the month alone in London with my DD to care for, or wait til I move back and have family support, but no guarantee that I won't have to go through the whole process a third time. I'm tired and fed up of the pain but circumstances have made it almost impossible to make a decision. Sorry for rambling on, it really is very complicated and just trying to explain even confuses me!

Glad you are on the right path now, hope you get sorted and the result you want.

DowntonTrout Thu 09-May-13 10:53:47

ohwooisme realistically what is the recovery period like? I mean, how soon can you comfortably walk about- do normal day to day things? I am wondering how long I would need someone else here with me afterwards to get to the point where I could manage with DD alone?

Madsometimes Thu 09-May-13 15:58:48

Downtown, I know nothing about this op, or backs or anything really! But I do know about waiting. If you feel that your condition has deteriorated because of moving hospitals, then I really do feel that you should go for the operation. Given that the consultant glanced at your scan and immediately pencilled you in for surgery, then I think that speaks for itself.

You are almost certainly not going to be able to care for your dd, but you mentioned family. Can someone come and stay with you for a few weeks, or can you and dd stay with someone? You have time to plan this, and don't be afraid to call in favours. When you are better you can help others out.

I understand that you are scared though. But don't let fear prevent you from getting the treatment you need. Realistically, if you cancel you will go right back to the end of the waiting list for both physio and surgery. I'm sure that if family were willing to help if you were being treated locally, they will still help. You do need to explain to them the impact that cancelling this op will have on your long term health.

DowntonTrout Thu 09-May-13 18:12:50

Thanks mad. Believe me when I say I know all that. It's just been a cock up really, from start to finish and it is a very complicated situation.i have been at the point where I was admitted to the surgical ward only to be told the neuro consultant was on leave for a month and that I would have to be transferred to another hospital trust, who promptly lost my notes and referral letter and had no knowledge of me. I had to be re-referred by my GP and even then it was only by me complaining to PALS that I got this appointment.

That was from an urgent (two week) referral back in January. It has been like swimming through thick mud. I just need to know if I will be ok after a week to be moving about, otherwise, unless it becomes an emergency, I have an appointment with my previous consultant at home in July and he will arrange it fairly quickly, as he understands the situation. It's been a nightmare though.

PavlovtheCat Thu 09-May-13 19:20:03

downton my expectation from paperwork/leaflets, discussion with neurosurgeon and being on here and other forums is that I will not be in a position to lift anything heavier than a kettle for about 4 weeks. I can expect to return to 'normal' activities with caution from 4-6 weeks, but not heavy lifting, twisting, bending etc, sitting for 15 mins max, standing for 15 mins max etc. So, I would say that you will definitely need some help for the first few weeks - how old are your children? There is no way I would entertain this op if I was sole carer for my 3 and 6yr old. It's going to be tough enough with my DH and friends to support me, but doable with that help.

I have just done my final session of the Expert Patients Programme and one of the biggest barriers to successful health care provision that came up from pretty much all participants was lack of communication between healthcare professionals. This has been my personal issue too, although it has been failure to share info quickly because each person involved seemed to think they knew how to manage my problem the best so seemed to refuse/take their time to move me onwards.

I am not scared yet. I am oddly excited, as despite preferring no surgery, I would prefer surgery over what I have now. I have been told this won't 'fix' it all completely, but I am not ready to accept long term pain as my fate, I am not ready to do that at all, so if I need surgery to give me a chance of being half of what I used to be, I will do that happily.

PavlovtheCat Thu 09-May-13 19:21:22

downton but, also in terms of being on my feet - I have been told I will be walking out of the hospital the day following surgery, and will be moving slowly and increasing that in the coming days/weeks, so not immobile, but leading up to being back at work by 4-6wks (providing no complications arise).

smee Thu 09-May-13 19:25:43

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

DowntonTrout Thu 09-May-13 20:15:03

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).

PavlovtheCat Thu 09-May-13 23:22:43

downton oh I so feel your frustration, anger and pain. I have not had fingers up my bottom grin 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?

DowntonTrout Fri 10-May-13 08:33:46

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.

PavlovtheCat Fri 10-May-13 08:41:41

What a horrendous experience for you sad. 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.

DowntonTrout Fri 10-May-13 08:50:26

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.

gallifrey Fri 10-May-13 10:23:44

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.

DowntonTrout Fri 10-May-13 11:30:29

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.

DowntonTrout Fri 10-May-13 11:32:12

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

gallifrey Fri 10-May-13 12:02:04

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.

DowntonTrout Fri 10-May-13 12:28:41

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.

Ubermumsy Thu 16-May-13 10:42:15

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 grin) 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.

Reenypip Fri 17-May-13 23:21:00

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.

ClocksInALine Sat 18-May-13 02:03:13

delighted for you!!

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

chocolatelime Sun 19-May-13 10:29:45

Just found this grin grin grin

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 smile

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