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

(57 Posts)
MulledWineMincePie Sat 27-Dec-14 22:05:20

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 grin

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.

Loveleopardprint Sat 27-Dec-14 22:12:02

Hi. I had a spinal fusion at c3,c4,c5 and to be honest I found the 10 minute journey home very painful. I don't think I would have coped with a train journey. I was in a surgical collar. I would discuss this with the surgeon as you might be undoing all of the hard work.

MulledWineMincePie Sat 27-Dec-14 22:18:28

I had a discectomy last year, and the 20 min car journey was bearable. Spinal fusion at multiple levels is pretty hardcore! I am not surprised 10 mins in the car was painful shock

Talking to the surgeon is like talking to God. It's just not gonna happen.

MulledWineMincePie Sat 27-Dec-14 22:19:26

until the day of surgery that is.

How long were you in hospital before you were discharged love , a week?

festivehopeandfrolicks Sat 27-Dec-14 22:44:17

I don't have any answers but I just wanted wanted to say hi. useless I knowwink

OddBoots Sat 27-Dec-14 22:55:48

That journey sounds far too long for only a few days after that kind of surgery. Could you stay in a hotel for a couple of days or even hire a private ambulance?

I had a similar surgery for tethered spinal cord, I tried to do too much too soon, ended up with a spinal fluid leak that allowed infection in so I had a further 7 weeks back in hospital with the leak and meningitis. It's big surgery to a very vulnerable part of the body.

I totally understand the want to get back home ASAP but in the longer term you really need to be careful.

Kristingle Sat 27-Dec-14 23:02:47

You must get medical advice on this. It's madness not to .

Do you want to risk jeopardising the success of your op?

Why would you go by what someone on the Internet says? This is very specialist surgery . Other can give general advice but they are not surgeons and they don't know the details of your case

RandomHouseRules Sat 27-Dec-14 23:07:25

You need to get medical advice about this. I had significant spinal surgery (admittedly many many moons ago) and 6 WEEKS later the hospital made me travel by ambulance the 30 mile trip back for a check up. Not suggesting that's necessary but you may need to consider a couple of nights in a B&B in / near to London before travelling back to the SW. I wish you all the best for your surgery.

MulledWineMincePie Sat 27-Dec-14 23:14:12

festive waves! you are always helpful my lovely grin

kristingle i am not expecting my entire decisions to be made from strangers on 't'internet, but sounding out my thoughts and getting different perspectives is how I do things. I love Mumsnet for the diverse opinions, views and suggestions and use it as part of my decision making i so want to say toolbox but its such a wrong word to use isn't it sometimes it helps to say things aloud, sometimes, it helps to be given a kick up the arse and get advice elsewhere, sometimes i get the answers I require to make different decisions.

MulledWineMincePie Sat 27-Dec-14 23:17:05

odd <waves> We have spoken before. You won't recall, as I still have my christmassy name. It's PavlovtheCat. You still might not remember me... grin

oh private ambulance would be lovely. I wish.

How about if I broke my journey up, say did half of it, then stayed in a hotel, then did the other half the next day?

If I discuss this with them in the hospital, will they keep me in longer?

Kristingle Sat 27-Dec-14 23:19:25

I love Mumsnet too and I'm a regulator poster. But there are some things in life that you need to talk to an expert about and I think this is one of them . Getting advice on the day of surgery isn't good enough, you need to make your provisional travel plans now

RandomHouseRules Sat 27-Dec-14 23:21:06

I don't think they'll necessarily keep you in longer but they will give you the advice you need to make the right decision provided you can be honest about your willingness to be flexible in your plans. My Ddad had an op recently and wanted to travel 300 miles the next day. They told him 'no'. But didn't keep him in longer, just wanted to see me come and collect him and say that I'd keep him at my house for 24 hours before he travelled again. There's generally no desire to keep people in hospital any longer than necessary these days (huge huge cost) but they will want to be assured you are not making any silly decisions if they can.

OddBoots Sat 27-Dec-14 23:21:39

Hello Pavlov. smile

If I discuss this with them in the hospital, will they keep me in longer? Maybe, if they think that is what your body will need in order for the operation to be a success, that's not a bad thing. I know you don't want to be kept in longer but you want the surgery to work.

MulledWineMincePie Sat 27-Dec-14 23:32:44

kristingle I have made my provisional travel plans. I have my disabled rail card sorted, checked that DH can travel on the return leg of his own journey (which will be booked separately as no guarantees I'll be out on the provisional discharge day) sitting with me using this etc etc), children are all sorted in terms of care, I know how I am getting there, getting from hospital to train is all sorted, as is from train to home.

So, I am not waiting until the day to make my decisions. I cannot talk to the surgeon on the telephone, as well, not surprisingly, he is generally in surgery or in clinic.

I don't have anyone that DH and I can stay with overnight, so a hotel is possible of course, but it will only delay the journey by 24 hours, which will still be less than a week.

OH will be coming to visit me when I am in hospital. I wonder if this is the type of thing they will be talking to me about.

MulledWineMincePie Sat 27-Dec-14 23:33:39

OH will be coming to visit me - I mean Occupational Health, not the Other Half grin

MulledWineMincePie Sat 27-Dec-14 23:35:31

I can't physically book my train ticket to london until the day of travel, the day before surgery, as they have told me clearly not to do this until I have confirmation that there is a bed as sometimes beds are not available as planned. So, ticket to be booked on the day, as open first class ticket to allow for travel on any day within the month, as I know i might not be out on the day they have said they hope I will be ready to go home by.

Toughasoldboots Sat 27-Dec-14 23:35:37

I don't think that they will let you do that pavlov- they might insist on ambulance transfer home. They did for me.

Costacoffeeplease Sat 27-Dec-14 23:36:42

I had a spinal fusion T10-L5 and a 4 hour journey home, which we did by taxi with me lying across the back seat wedged in with duvets and pillows. We had gone up by train but decided that I couldn't cope with the train back. I actually fell asleep and we just stopped once to change my position from on my side to on my back. Almost 6 years later I still can't sit comfortably, and never do unless I absolutely have to, so staying in any longer wouldn't have helped at all - I was in hospital for 10 days. However, I'm sure your surgery will have a much better outcome, good luck!

MulledWineMincePie Sat 27-Dec-14 23:39:46

odd they wouldn't get an ambulance to drive me home some 250 miles surely shock, not when they wouldn't let me have my swabs for MRSA and blood tests done in my local hospital due to cost of chasing the paperwork!

(just had to travel to london and back for pre-surgery assessment, and the journey was a little tough on my ol' back, although not in first class, it was Very Busy and no room to move At All).

MulledWineMincePie Sat 27-Dec-14 23:42:52

costa wow how much did that cost by taxi?!

so, maybe it would be a better idea for DH to drive back and I sleep in the back. Although, that's actually illegal and not entirely safe...

Sorry to hear you can't sit down for very long still. Did you feel your surgery was a relative success? I can't sit down for long at the moment. Or stand for long. Or walk for long. Or do much for long except lay flat... I mean, I can, it just hurts.

Fusion is the next option if this doesn't work, but the odds are not brilliant and still won't 'fix' me.

Toughasoldboots Sat 27-Dec-14 23:45:53

Hmm, yes my journey was only to Kent. This must happen a lot as he operates on people from all over the country.

You are probably right to call his sec and talk to her about it, I just can't see how you can travel without lying down.

MulledWineMincePie Sat 27-Dec-14 23:58:30

tough the admissions officer told me, when I discussed having my pre op assessment locally that 'people come from all over the country for surgery with these surgeons here (three I think that do this surgery)...' plus a bit more, so definitely is something they will be used to dealing with. They just haven't furnished me with this information!

I'll call the secretary on monday. I've also found the 'transport' number so will have a chat with them about whether this is even in their remit.

I think in terms of transport home, if this was an essential surgery, i.e. the hospital locally sent me to that hospital as there was nowhere else to do this and there was no other option but to have it done, I guess it would be expected or considered for transport to and from the hospital to be provided, but the decision to go to this hospital instead of another one, was my decision, so i guess that leaves the transport issue my own one to deal with.

I wonder how much private ambulance costs... grin

MulledWineMincePie Sat 27-Dec-14 23:59:16

Btw, hope your christmas was good tough and not too stressful or painful.

Costacoffeeplease Sun 28-Dec-14 00:34:55

My fusion was done to stabilise my spine, not to take the pain away (as the surgeon continually reminds me!). I'm not in the UK and AFAIR it was around 120€ as it was out of the main tourist season!

I'm sure it's illegal here too, but it was the taxi driver's suggestion, and he actually called past his house to pick up sufficient duvets and pillows to tuck me in!! I had been absolutely dreading the journey home, but was asleep within 10 minutes and woke up after about an hour and a half. Once we got home he even insisted on waiting until I was tucked up in bed, and then coming in to see me and pat my hand! He was so lovely

I am in continual pain as soon as I am upright, my left leg is weak, I can't sit, stand or walk very far, so my quality of life really isn't that great most of the time, but the surgeon's response is that I am on my own two feet and not confined to a wheelchair, so, job done!

By the way, we had the option of an ambulance, but it would have been shared with several other people and would have taken 7 or 8 hours, so we politely declined!

MulledWineMincePie Sun 28-Dec-14 09:13:10

costa I am so sorry you are in so much pain still after such surgery. I have retrolesthesis, and so there is some very minor instability of the spine, and my surgeon has said the only reason he will fuse in the future is to stabilise the spine not to remove pain as the success margin for reducing pain is so slim.

Oh how lovely of the taxi driver! that's such a nice story!

Been awake a lot of the night worrying about this. Discussed it briefly with DH and will consider driving back, maybe look into a hire car with super comfy heated seats for me to recline right back and a ton of leg room (or jump in the back if I have to). He is ok doing that, so will look into that.

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