Spinal surgery and travelling long distance after. And some other panics...

[MulledWineMincePie]

I am having a double level laminectomy and decompression on 7th January (removing bone from lumbar spine that is pressing on nerves at two vertebral levels).

I live in the depths of the South West of England, and I am travelling to London to see a top surgeon for this operation. It was my decision to go to this hospital, in order to see this top surgeon and not remain under my local surgeon who chose to leave me, mid thirties, virtually unable to walk and not even tell me wtf was wrong.

This surgeon is confident he can improve my pain and mobility levels by around 50% with this surgery. I of course snapped his hand off, as I am fed up with my life being on hold and this surgery will possibly be the key to a better physical life, a return to some activeness and the chance to be a better, less tired and grouchy mum to my young children.

I have had no problems with the distance, other than practical ones. Found solutions to most of them. I will unfortunately be in London on my own as there is no-one to care for the children if DH comes with me, due to timing of xmas and holidays etc, no family close (up north or on another far flung country), and so I will be in London for hopefully 3 days including day of surgery. DH will come to collect me when I am discharged to bring me home.

I am worried about travelling home. It's gonna be a 4 hour trip, approx, hopefully 3.5 hours on the actual main train journey. Been to-ing and fro-ing about whether DH drives me back, or first class train back. Talked it through with various people and decided train would be better as I can stand if I need to (will need to possible), lay across two seats, move about freely to reduce the risk of DVT etc, where car will be much harder to plan, will be driving through London which is relatively unfamiliar territory for driving, and all that might entail with braking hard etc etc.

I am worried about whether I should tell them about this in hospital. Will they keep me in longer if they know that I need to travel 4 hours, maybe more with any delays. I don't want to be kept in longer. (surgeon knows I live a long way, they must have a management plan of some kind, people travel across the country for the surgeons at this hospital, and the pre-assessment team didn't discuss with me other than the practical stuff of them confirming the bed space before I travel).

Anyone done a long post surgery trip? Am I going to actually be able to make this journey home? Any suggestions? ideas of how to manage the trip, advice, helpful hints? I can't get pissed as I might otherwise do without children in first class

I am not even sure I am expecting you to have answers. I am just worried that this is not going to be an easy trip and it might make things worse for me and undo the good of the surgery. I am just rambling.

[MulledWineMincePie]

yes, I am a bit worried he might not find the Square - he'll be coming up on his own, and driving through London on his own. Unless he drives me up on tuesday as well, to learn the route, but it'll be dark by the time we arrive, so might not help him.

Do hire cars come with satnav? or will he need to rely on his own iPhone/satnav?

[MulledWineMincePie]

he likes the OLD ones Matilda the new ones are lovely, he likes old smelly dirty ones, not ones with heated seats and fancy sat nav.

[MatildaTheRedNosedReinCat]

Old men 's cars? . I was going to recommend the Honda CRV as a good option for comfortable ride home. My new one is as comfortable as I've yet been in a car. But now I won't bother . Although the hospital discourages driving and says parking is horrendous, we have always parked in the Square without much difficulty. Finding said square in the car is another issue so make sure you have sat nav.

The heated seats are blissful but I would definitely check before you use them that it's ok from the pov of the wound. Hopefully they will say yes.

[MulledWineMincePie]

waswondering my DH would love a Volvo, they are one of his favourite cars. But, he always likes 'old man' cars - Volvo, Honda Civic, Honda CRV, Saab... (well, Saab until his friend bought one and engine failed within a month, rendering it useless)

[MulledWineMincePie]

magi I spoke to PALS about trying to help me organise having my pre-surgery assessment in local hospital instead of travelling 500 miles round trip with a fucked back for a 1.5 hour appt to have tests and discussions that are done locally in the same way. She was not at all helpful, and happily told me that my issue (that particular one) was way down on the list of priorities she had out of 60 cases to deal with. I expect that my transport issues will not be much higher up the list.

Their liaison involved them calling the same person I had spoken to 30 mins before and asking the same question I asked, given the same reply and relaying that to me.

Therefore I have no confidence they will be helpful.

And, actually I think I will be ok in a car semi flat, with some nice music on in the background (new CDs from christmas to start with), and my DH to look after me. As long as I don't throw up due to meds...

[magiandco]

It might be worth contacting the patient advice and liaison service usually called PaLS, which most hospitals have, just in case they can organise an NHS ambulance for you, or have other ideas.
Good luck. Hope it all goes well.

[Kristingle]

Sorry to hear you're having such a bad day

[MulledWineMincePie]

festive I know, it's barking isn't it? Feel much calmer about it today. Not called transport people as been working with horrendous pain, couldn't walk when got home so laying flat with painkillers while my friend is making my children tidy their bedroom. I'll call tomorrow when I have day off.

[festivehopeandfrolicks]

at cost of ambulance!?

[MulledWineMincePie]

much thank you for your kind wishes

[MulledWineMincePie]

matilda looking forward to the floating home yes come and visit me if you can cope with the journey! don't need to bring grapes though...and if you are not up for the travel, just keep in touch online.

[Muchtoomuchtodo]

Good grief

That's a bit of a no brainier, even if you do have to make multiple stops to stretch your legs.

Here's to a less painful 2015 and beyond xxx

[MulledWineMincePie]

muchtoodo hire car will be about £150-£250 for a week, DH is thinking if he books a whole week it will allow for any delays in my 'release' he can drive it while I am in hospital and pretend he is rich and can visit me on the day of surgery for a couple of hours. Our car is reasonable, but not the most comfortable for long journeys, and the clutch is misbehaving recently (due to my inability to use it properly due to leg pain and so I ride it too much, apparently ).

Private ambulance, approximately £1400 for 500 mile round trip

[MatildaTheRedNosedReinCat]

I think the driving option is the best if possible to arrange. As I said, NHNN is very generous with the oromorph and you should float home in quite a relaxed state.

Try not to stress this stuff too much. You will be fine. I will visit you if you are really bored.

[Muchtoomuchtodo]

I really hope the secretary can put your mind at rest and that your surgery is as successful as it can be.

Hiring a big luxury car can't be cheap, have you looked into the cost of a private ambulance if the hospital are unable to transport you? I'm thinking that lying comfortably on a stretcher would be better than a non purpose built car seat, and that would be the best start to your recovery.

Do let us know how you get on.

[Kristingle]

That sounds like a much better system, although a bit Big Brother , as you say

[MulledWineMincePie]

kristingle they will write to you before the end of your photo card expiry to tell you it's due to be renewed, you can renew before the end - it's quite clever/scary as you can do it online now, using your passport photo instead of having to go through the faff of getting to a postoffice in your lunch break, queuing for two hours only to be told they don't do it at that postoffice as long as you are ok with Big Brother watching you even more closely - you just have to enter your passport number online and they will go get your photo from it.

DH's actually expired about 3 months ago. so probably was illegal to drive then...the info about being fine to drive while the renewal is done was in the confirmation email 'driving while waiting for renewal' or something, with the details about it being ok to drive if there are no restrictions due to disqualification, health issues, and if any special conditions usually applied remain adhered to.

[MulledWineMincePie]

tough glad your day was good but to being in bed with pain my christmas was lovely, low pain, first christmas for many years with limited pain, probably helped by alcohol and doing absolutely fuck all apart from playing with the children. DH cooked the entire dinner, and we didn't entertain or visit family so no pressure to even get dressed (although we did put on fancy clothing for dinner, mine stayed on a total of 45 mins before jimjams were put back on ).

kristingle meant to say, you came across as concerned, a little bossy, but concerned

I feel calmer about it all. I think I had some jitters around travel, also because my pain reduced a bit for a few days, I wondered if the effort of travelling so far to be cut open then travelling so far home was needed after all, was I just making a big old fuss about nothing? You know, those in chronic pain, possibly, how that might feel. But, looking back on my life since last surgery, my slow ebbing away of mobile life, and a couple of good days is nothing. And, today, just to remind me, pain has returned with a vengeance and I know that, regardless of the return journey being a pig, it's worth it, as I have no alternative that I am prepared to take surgery wise.

I have discussed at length with friends and with DH today at a post christmas gathering, and all agree that stretched out in a brand automatic luxury car with pillows and duvet etc to keep me comfy, along with lots of painkillers, and a pit stop in a service station or two to eat/not eat -normally vile except when travelling-- burger king and have DH help me wee is better than eating (ok, i probably won't eat much) train food and attempting to wee in a moving carriage with no room for DH to come in with me to help . Not that I am expecting it to be as smooth riding as costa sleeping most of the way with a sympathetic taxi driver (DH is lovely, but he worries, which overtakes the sympathy as worry makes him stressed, which makes him a bit testy in these kinds of situations).

[Kristingle]

Thank you, that's useful information

< checks license expiry date >

[MulledWineMincePie]

kristingle he can drive as he has applied for renewal, as long as he is not disqualified, etc etc. as the actual licence has not expired, it's the photo card ID that has expired. Apparently according to hire car peeps he can also still hire a car as long as he produces the counterpart and photo evidence ie passport. So, if new card not arrived in time should still be ok as actual licence is still legal.

[Kristingle]

I don't think he can even drive without a license ? Isn't it a £1,000 fine? Or is it ok to drive if you have applied for a renewal ?

Sorry if I sounded very negative or unhelpful before, I was just concerned about your damaging your back further on the return journey . I'm glad to hear that you will be getting soem travel advice from the hospital

[MulledWineMincePie]

therein good guess but it's the National Hospital for Neurology and Neurosurgery in Queen's Square.

DHs licence is expired anyway. Just applied for his new one, but it says within two weeks, which means he probably won't get it back before we need to hire a car, and I expect he won't be able to hire without his licence.