More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

So come and join us for moans, advice, downright rants or just a laugh.

[PavlovtheCat]

this is awesome and one my favourites.

[PavlovtheCat]

(watch this last video and look at the bloke in the suit behind him! clearly not a fan…)

[PavlovtheCat]

I think it rocks! I shall stop now...

[PavlovtheCat]

the man can sing pretty much anything and make me feel a little bit like a teenager

[livelablove]

Does your friend dh have good sense of humour and appreciate the need for internet shopping matilda if so he could come and chat with us mums when he gets out of hospital. Anyway sending him fellow backpain feeling and manly

[PavlovtheCat]

loon you just informed me that the sun is indeed over the yardarm, I don't need to be pushed too much! it's red, so still good for me

It's such a shame he is an arrogant prick, as he is dashingly handsome. Does himself such a disservice

[PavlovtheCat]

That is exactly what he is going to write, between the lines

I will ask my GP for the referral if the pain clinic can't do it. I don't think they can as it's in another hospital? If not, GP will I am sure as he is pretty certain that this is not going to go away any time soon. He ain't gonna be happy when I tell him the news although he is not someone I can see getting feisty, he is too nice and laid back

It's 4:30pm. The sun is over the yardarm now isn't it?

[LoonvanBoon]

So sorry you've had to deal with such an arrogant fucker of a surgeon, Pavlov.

Trying to get my head round the idea of someone quibbling about intrinsically invasive nature of surgery in this particular context. It's awful that he can't even remember what he said before about fusion.

Nothing helpful to say - but I wouldn't wait 'til 6 for the .

[livelablove]

Yes Matilda I think you summed up his attitude there! What an arse. Well at least you won't feel bad about going for that second opinion now. Lots of and and maybe a little more internet shopping if your credit card can stand it.

[PavlovtheCat]

oh wow it must be a horrible prolapse for them to be operating so soon hope it gives him some answers.

I hope your injections go ok. Funny how things that make people go make us go 'meh' these days. I guess it's the same as medicine, i forget when I talk to people that tramadol, diazepam etc are strong addictive medicines. DH reminds me to not openly discuss them like I am popping paracetamol as I am so used to them being normal.

And, my physio/hydro guy is lovely. Discussed swimming and continuing these exercises between hydro sessions especially as only one next week as he is on holiday, he was pleased and keen to encourage, as long as I keep my pain levels low doing it, motivational without being patronising.

[Matildathecat]

Dear Mrs Pavlov,

Please fuck off and stop bothering me. I really couldn't give a toss about you or your life.

Best wishes,

Prof. Rightupmyownarse.

[Matildathecat]

Yes, onwards and upwards. One thing for sure, surgeons hate nothing more than a patient saying that their wonderful surgery hasn't fixed them just insist on a second opinion for your own peace of mind. As you know my second surgeon had very different thoughts to no.1 and expressed this quite clearly.

In the meantime injections. Have mine on Friday. Again. Weird to feel so blasé about what is surely a big deal but just been there, done that. Don't want to be discharged from top London pain clinic so accept anything on offer.

Out with friend today whose husband has just had a disc prolapse diagnosed last week. Having surgery tomorrow. Not sure if I think that's good or not, really. Hope it works for him but honestly haven't met anyone for whom it was the full answer. And nobody tells you that.

[PavlovtheCat]

and finally, he said no need to make another appointment to see him, he will write to me with the outcome of the x-ray when he has viewed it later day and when het gets MRI results. 'don't call us, we'll call you'. That's a clear 'piss off' if ever I heard one

Roll on the earlier yardarm of 6o'clock so I can pour wine.

[PavlovtheCat]

denial One part of me is glad he didn't sugar coat it. And I sort of expected it, following his letter. And I didn't really want to be told surgery is the way to go as it's a big deal (whatever terminology he choses to use), he could just have been nicer about it. I don't need handholding or hair stroking, just not being treated like I am interrupting his day.

I had my surgery on a wednesday, I was in at 8:30am being given sleepy juice, and his clinic starts at 10:30am, finishes at 2:30pm, so he probably has theatre before and after, and he had 13 patients to see in those 4 hours. He was probably reading the notes of the next patient!

matilda That's exactly what I wanted, to be told 'this is what will work and I will speak to the pain clinic about getting those things happening'. He was uninterested 'that's not my area' was his attitude. He was annoyed with my questions, sort of raised his eyebrows when I said I had a list of my symptoms and some questions.

It's not the first time he has been so arrogant about his skills either, when he thought there might be another prolapse he was very annoyed that there was a chance his surgical skills had not fixed me.

I felt something odd as well. He had my spine x-ray from last time as a close-up, I couldn't see it very clearly but he had his mouse over a certain area and said he would get the x-ray to concentrate on that area. It was weird him being so casual with my spine in the raw of an x-ray, like he was looking at me naked or something, how strange is that, that I felt like he should be being more sensitive when looking at my spine?

I felt like he was a bit all over the place with his opinions and thoughts. He didn't know, but probably was xyz, but not sure, but probably was, but no surgery but possibly surgery if outcome of MRI/xray is different than last time, but not surgery, didn't know what what going on, but probably related to xyz. Make your mind up!

Anyway, it's done now. Luckily I have pain clinic next week so can get on with the next battle.

Thank you for all your good wishes, and my kisses and hugs!

on the plus side the hydro pool was warmer than it was last week, lovely!

[Matildathecat]

What a wanker.

So sorry. Get onto those injections pronto. Sure have the MRI but under no circumstances agree to wait for the MRI result.

So, so fucking angry on your behalf.

Why can't these surgeons get their heads out of their own arses and speak to is like humans?' Sorry but I don't think surgery is the answer BUT I'm going to make sure you get help.'

Hope you can find the strength to dust yourself down and keep going on our weary journey. You are not alone. (((())))xx

hugs and kisses?! Surely not on Mumsnet!

[denialandpanic]

ok that's totally crap but at least he was clear. Honestly? He doesn't sound very nice at all

If I were you I would seriously chase the pain team and ask for a referral to the guy in Exeter for a second opinion. A dual pronged attack.

oh and wine ++++

[PavlovtheCat]

[PavlovtheCat]

And I don't think he actually remembered me, he doesn't remember the conversations where he suggested that fusion would be the next step due to vertebral movement. He has said stuff this time that contradicts previous conversations. Today was just a pacifying appointment following his letter. He had no intention of actually having a discussion, just a face to face 'piss off'.

[PavlovtheCat]

Some pointless conversation about what's going on. He appeared to not really be listening/reading my notes while I spoke. He made his mind up already, not interested in what was new.

Cause: i don't know. Probably due to to the movement of your vertebrae which is not stable. It's possible that it's moving occasionally and catching the nerve, that would explain the fluctuating pain levels'. 'why does it hurt all the time? 'i don't know, despite advancements in medical technology we know very little about what goes in with the back and why there is pain' (? contradicts earlier suggestion of movement of vertebrae). There is no prolapse any more'. 'can there be a prolapse now given that it's been 4 months since MRI? 'yes, that's possible. I won't know unless I do another MRI'.

Outcome: Fusion not recommended as success is 60% likelihood of 60% improvement, unless the vertebral movement has increased. So, as a surgeon I can fuse it, but I don't think this is going to give you the outcome you want. Surgically I don't think I can help. However. I would like to see if there is more movement so I am going to send you for an x-ray. And an another MRI. But we need to have the MRI done when you are having a 'relapse' or else it won't show anything. There is no point doing it when you are feeling ok'.

We also had a conversation that went something like this
'I agree I don't want horrific surgery for the sake of it…' 'well, it won't be horrific surgery, I would be doing it, and I don't do 'horrific' surgery 'ok, evasive surgery 'well, all surgery is evasive…' 'you know what I mean , I can't believe he wanted to spend this valuable time arguing about his bloody surgical skills and use of language

I told him how fucking shit it all is, he looked at me like 'i don't really care' and then said before I finished 'well, I am a surgeon and surgically I can't fix those things. I don't want you to think I am not interested, but I am a surgeon and surgically we can't get you to where you want to be'.

So what can be done to get me where i want to be? 'i don't know. You need to talk to the pain clinic about that'. 'will injections help?' 'oh yes! if your pain can be managed with injections I am all for it but you need to talk to them about it, what do they say? Ask them for them'.

I think it was his birthday. There was a bottle of something in a bottle gift bag and a card on the side.

He didn't even offer me a tissue despite me crying even though I said I wouldn't cry.

Had x-ray of L5 area specifically, got to wait an age for MRI. As usual.

Round and round in circles. Came home to two fighting children and a trashed front room, with increased pain due to waiting for 45 mins to be seen and bending forward and backward for the x-ray, after hydro.



Ok. mememe post done for now

[livelablove]

Good luck again. Keeping all crossed for you x

[PavlovtheCat]

Ok, got iPad with notes on, wearing smart casual with glasses. Several people have mistaken me for someone important who works here (shall I do take away cup incas e you get called away.)


K got to go.

[Matildathecat]

Take the crutch. Much more powerful than saying 'sometimes I need a crutch'.

I'd do the dress and boots look or similar. Don't think they really notice unless you're really 'out there'. Do print off that list and bring it out and also write down the answers! Most people forget this bit.

I know it might seem a bit of a cheat but I might skip my meds and make sure I really am in pain at the time of the consult because it's so much more tangible to them if they can see you are actually in pain right now rather than an abstract pain from last week Iyswim?

Treat him like a colleague rather than some esoteric god-like figure. He's just a guy at work.

Really, really hope it goes well. Enjoy the hydro, it sounds lovely. Bit like my massage. Lovely at the time.

[livelablove]

Hmmm I would go for smart casual lol. You have to wear the green flyboots. But want to look fairly sensible, so he will take you seriously. I think it is best to look like you are making an effort to live normally and are not depressed, but be sure to tell him honestly how much it is affecting you. One thing I have noticed is hcp sometimes seem to act like pain is just unfortunate side effect, when pain is the main problem. I think you can cope much better with restricted movement, than being in pain all the time. Well probably because if they can't do anything about it they like to downplay the problem.

[PavlovtheCat]

OMG! We have only just started this thread

Talking about important life changing decisions left to us, did anyone watch any of the south pole trek with Prince Harry? I didn't watch all of it but i watched one of the episodes where the woman doing the trek talked of her story. She had her ankle/foot/lower leg shattered (she said it was referred to as a jigsaw puzzle to put back together). She was told that they could save her lower leg but she would be in pain constantly and would have difficulties with mobility in that leg. She asked if the surgeon removed the leg would she be able to ski etc again and the surgeon said yes, so she told him to remove the lower leg. She would not have been doing the trek to the south pole if she had kept her leg as she would not have had the mobility. Yes she had different hurdles and pain to overcome but she is certain it was the right decision. Wow. How brave is that woman? That was a major elective surgical decision for sure!!

I need to get ready, as I have hydrotherapy before my appt. I have not printed out my list yet. Bad me. But, importantly how should I dress? Power dress like I am not letting this bother me, that yes it hurts but I am cracking on regardless or rockchick style? Should I wear make-up to look like I am getting on with things ok, or no make-up to show how much this is wearing me down. I don't like looking like a 'victim' of this shit, but on the other hand I don't want to appear that there is not much wrong other than a little bit of pain. Should I take my crutch, which I need for longer walks (and it's a trek to the clinic from parking) or leave it behind as the physios don't really like me using it. I don't want it to look like I am being dramatic, but also, don't want to increase my pain levels just for this appt.

Who knew these decisions would be important just for a meeting with a doctor

[Matildathecat]

live, very good point about the laxatives. Lactulose works well for me with codeine. Don't wait until you are already constipated to wait and see. Codeine is a guaranteed bungler upper!

pavlov, good luck. Let us know the outcome (if there is one)

Have a good day everyone. Off to Wisley after last week's aborted plan ( due to friend' DH having a prolapsed disc). Let's hope he's better enough to let her come to the aid of another needy back soul!