The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

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

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.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Do you know, I didn't seem to get any jet lag at all. I think the Ami makes me sleep so I didn't do the normal thing of waking around 4am. Sleeping is perhaps one of the few things I do really quite well.

Because my DH and ds1 are away skiing, this week has the feel of a holiday. I actually love having the place to myself. Have pets to keep me company. Of course, it's fine knowing it's just a few days. Must be miserable if it's a permanent situation.

I'm now counting my blessings.

Ami does make me sleep well too!
CT is of my chest not my head ;)

matilda x-posted too! problem with the tickets is that it costs a lot of money, DH is worried that it will be a waste. They are strict on transferring to other people so not as simple as just giving them to someone else I don't think, not these days anyway. Yes to camping. have done some camping with back problem, pre -surgery, when I was going through a 'better' phase and I slept on the floor on a thick rollmat instead of the air mattress (not intended, blame DS) but it was fine for my back, the solid seemed to help. I won't be drinking alcohol so don't need to worry about stumbling into things and making it worse I have quite a good camping chair but might need to invest in a better one. We have a lovely Soulpad tent (bell tent) but not used for a while.

I also stayed in a yurt 1 week pre-surgery and then again less than 3 weeks post surgery!!! (DHs birthday and then my birthday). That was bloody marvelous actually. The first time I could barely walk, but we took almost nothing as it was a well catered place. It didn't make my back worse. The second time I was with my bestest friend though as well as DH, and another two friends, and they knew I would be doing Nothing. My best friend is a district nurse, and so she brought all her kit and checked/re-dressed my wound, made sure it was ok. We organised it properly (well I did from bed!) and DH cooked a dinner in advance, they did too and we had take away another day, so 3 days food sorted. It didn't make my back worse, even though I had surgery shortly before.

I think they might even hire out Bell Tents at Beautiful Days... oh! that might be LOVELY! But, of course it's not just relaxing at beautiful Days, it's listening to music and dancing and stuff... and FT might be there this year.

Goodness the injection will probably go in your elbow or similar, the dye pootles round your body in your blood and up to your brain where it shows up all the blood vessels if it's what I'm thinking (it can have an interesting flush side effect which makes you feel all warm and as though you are weeing yourself, medicine is just so weird). Although I am way out of the loop on all that stuff now. Such an idiot life that when you need time to check out and recuperate you have almost a full time job organising the recuperation.

Yes big yay for all of us doing The Stuff

Iodine contrast will also pootle around your veins to your chest not just your head .

matilda oh best of both worlds, get to travel, then recover in peace!

I don't sleep well. Not even the Norty (!) helps with that. I wake on what appears to be the end of my sleep cycle, around every 1.5 hours or so. Sometimes for a few minutes, but enough to be fully awake, and feel awake, sometimes I lay awake for what seems like hours but may only be an hour or two. Sometimes I have to get up for a bit. I have noticed it as I have aged so quickly over the last two years. I had looked, even in my own eyes, relatively youthful for my age, now I look very much my age and probably older. I feel older for it.

Elbow?!?!
Tell me (pls): does it hurt? There's no fat on my elbow.

Pavlov the back experts have spoken and it is a yes, as they say on x factor. Another good thing about it is you will fit right in if you are feeling a bit stoned lol. Also if FT is going to be there, well he needs your support. But you will have to go and lie down as much as possible between dancing. Actually I have a friend with a really bad back and he is always going to festivals, he takes the kids too, they love it.

live right. I am booking it ! the biggest issue though, before booking is that MIL wants us to go to visit her in New Mexico in summer hols. Am I being a right proper misery guts to not want to go, and go to BD instead? I know you might think of that as but there are lots of reasons - it's 24 hours travel away, with two children, two flights, plus car journey to airport of 4 hours or so. It's 8 hours behind, and I suffer from jet lag going out more than coming back. DD last time suffered horrendously with JL both ways, worse there as she was up at 2-3am most days! She was 2 though. DS has never been abroad, and he sleeps poorly at the best of times he will probably be horrendous. I am sat here now, feeling my eyes hurt with tired and probably meds and they hurt even more thinking about jetlag. As I will deal with it. DH will get drunk with his brothers who will inevitably come too. It is hot there though, really really hot (desert) and there is the Albuquerque Balloon Festival in August I think which is quite spectacular. But. It's not UK at a festival as a family, with maybe some friends who go a lot, but doing our own thing with no jetlag. Am I really being a pooper to not even want to go a little bit? Children do, of course, and it is family. And DH is up for it. and MIL offered to pay for flights I feel all happy just thinking about Beautiful Days. I feel all stressed thinking about USA.

Goodness sorry not explaining myself well, you know the crook of your arm where they take blood and stuff, the easy access veins!

Pavlov there is no way I'd survive that much travelling with a good back and bigger children let alone your back and two small ones. Tell her you can't get travel insurance at the moment, you can't go to America with no travel insurance!

I can see your dh would be upset, as he probably wants to see his family and have sunshine holiday. It is a much bigger trip though and sounds like it would be really hard on you. But Matilda made it to Singapore so maybe if you can get a lot more help with managing the dcs and get really good seats on the plane. Can mil afford them? Also what is medical care like there if you have problems, could Losty be right, can you get good travel insurance to cover medical care if you need it over there? Or would your existing problems make it difficult?

sounds like we were all having heavy days today- I had decided to take ds out to softplay today but before i did i "popped" round to the nearby shop with dd, holding her hand. This was a big mistake as i was off centre and had to pick her up a few times and carry her across the rosd because roadwork was on the bridge, and then carry a bottle of diet coke- how feeble does one feel when a bloody 2l bottle of coke can set you off? I knew the sneaky bum pain was going to get worse but i did go to softplay anyway, extra codeine etc to get through and went round the shops quickly after. It was worth it because he had a fab time, raced around smiling and went off to sleep tonight like clockwork ( he has trouble getting to sleep for hours sometimes). I had decided I would lie down as soon as i got home at 4 but didnt get round to it until 8! I'm sure you guys know this situation too well grin

I will go on the defensive tomorrow. Think I may be a bit devil-may-care because I know it's being seen to soon now. That might be an unwise attitude.

Thanks pavlov

cowmop That is good news for the back pain clinic- even if you are just about coping, still good to try to get your pain level down further so you can reduce meds or get to do more fun things smile . Yes , it is very much in and out- "day surgery" and had to sign something saying I accepted the situation. Not much choice really, dont sign, dont get op for months and months. I have to go in the day before so i reckon it may be early am - so quite likely they will ship me out the same day as the surgery. I have a doc's appt Friday and I may ask for a "post-op stash" and talk through my concerns with him regarding the op and whether they give me enough pain relief to go hme with. I have been taking paracetamol and codeine on and off for about 3 yrs (during both pg's spd) so it does not have anywhere the effect it used to on me- as it would on the average person. I have a tens machine i keep meaning to dig it out as it did help me alot in both my labours. Also I am going to stay at my parent's for a couple days so i wont have to do stairs while i am there.

What is up with your knee Matilda? I cannot recommend yoga enough for knees. I had a ligament reconstruction in 2000 (snapped when i was 14) and it never felt right or stopped aching until I had done yoga for a few yrs (not religiously mind). The Isabelle Blow show sounds cool. The nerve damage sound a bit shitty- can they like deaden them or anything like that if they are always causing pain? sorry if that is a stupid question

what is "Flexiseq" lost ? never heard of it.
Greek salad lovers- the nicest olives are from Graze, they do alot of good stuff- flapjacks, dried fruit nuts etc, and you can always find a code to get the first box free somewhere.

Goodness I am not envying you to have a ct of your head- how was it last time , did it make you feel stressed/ freaked or was it ok. They had radio on when i had my mri- the one 4 yrs ago they didnt so that was a good improvement. That is the one thing that makes me worse than anything else is if i have to lie flat on my back- was about 45 mins for the mri and it actually made me worse ever since. Hope you are feeling a bit less tired xx

sprouts and all the others with kids with sn, it is hard road indeed- have you guys got statements and support? How old are they? my boy is 4 and we were lucky coz they spotted it at 2.5 yrs. Time flies by, it's hard to try to fit in all the extra stuff we are supposed to do to help them. His nursery are great and i know they have had a big impact- he used to go to diff one and they were shit! We didnt even knoe it until we had a meeting at the school and the head teacher walked out to take a phonecall 15 mins in and nevr came back! someone else picked up the meeting, it was embarassing.
sorry rambling again, it's late, hope you are all getting a good and restful night's sleep smile smile

Urgh, screamed awake from tramadol infused nightmare at 5am, couldn't get back to sleep because of really low amounts of leg pain and now it is nearly 7 I am tired and ready to go to sleep! Morning all .

www.flexiseq.com Flexiseq, I am too tired and stupid to make a clickable link on my iPad (please don't tell my tutor!). DS1 is on school action plus and where it was very hard and scary about three years ago he has had amazing schools helping him and has discovered a voracious appetite and ability for chemistry so he just geeks out at school with his little gang of similar children and ignores all the weirdo NT kids with their music and clothes and popularity obessions. TBH I'm quite jealous, he's just chosen to do triple science, graphics, D&T and a BTEC in Engineering for his options and DH and I would like to go to school with him!

:-D

I meant my chest. I was v tired. Seeing as the tumour was in my sacrum n spinal canal, why r they doing that?! I'll ask consultant's secretary. Getting pissed off now. I know it's unreasonable of me but I just want my life to slot back together. None of this shit any more. Stick it away. Under the floorboards. In cupboards. But not 'on show'. Sick of follow ups, Physio, meds, etc.
had a bit of pain last night but nothing compared to What it used to be pre-op (I used to call it 'achey hip' before found out it's chronic nerve pain). It's not a typical shooting one but more of a deep throb that gets deeper n unbearable until I move position then starts on other hip, vs fades n returns.
I had 3 MRIs before the op. And two CTs. But none with iodine.
Grumpy this morning, aren't i!
My DCs have been shipped to grandparents (15 mins away). DS is also 'interesting / eccentric'. Aspie I reckon. His 'thing' is electricity. He's just turned 6 and has rerouted every electrical contraption under the bed base of his cabin base. Everyone I show takes a huge gulp of gasps air when they see it. He's also a little tea leaf at the mo! Scones, iPods belonging to us, etc. but it all ends up (predictably) in his hidey-hole.

Ah I imagine you are having it done because it is protocol' ass covering. Still you get so spend more time with lovely Radiographers who could complain about that .

Your DS sounds ace, I think one day they will realise that naturally scientific/mathematical thinkers just have slightly different wiring to 'creative' types. We are a household of people who do maths for fun and I am fairly sure if we were all assessed we would be on the spectrum just DS1 is further in than most.

goodness have had the dye twice. It's truly nothing. They scanned me for a bit then stopped and injected the dye than carried straight on. Easy. Only one thing, the first time they sited the venflon in my elbow crook (forget the real term!) then insisted I fold my arms over my chest which was sore. Next time it was arms by sides which was fine. Since yours is a chest scan I'm sure it won't be crossed arms anyway. Just make sure you get a wedge under your knees to reduce pressure in your lumber spine.

pavlov, I would be very, very cautious about that trip. Yes, I did manage Singapore ok. But, I travelled with one supportive adult. So all attention on me. I also live half an hour from the airport and even with the dreaded wheelchair assistance there is a lot of walking. And, I don't want to sound either rich or showy off, but I travelled Business there ( ok comfort) and first class home ( very comfy, thanks ). There was very little difference in price for the first class upgrade. I would have died in economy. Have in the past, pre back, done premium economy which is better. Would your DH consider upgrading you and sitting in 'the back' with dc? Or even go alone with dc? Hard one but I couldn't do the trip you described.

I'm having a quiet one today. Must get up. Now! iPad, tea and hottie all preventing me from moving.

Thank you for the tip, malt. Think I'll take my friendly OxyNorm with, shall I?
Will it b uncomfortable on my back? Tumour removed from sacrum so I'm not keen in laying flat on my back.
You know what, I just need to show up. Nothing is as bad as I think it'll be. Hopefully not, anyway. lol

Oh yes, insurance? No, I checked with my travel insurers and they refused to cover my back. I can't think anyone would really or at least it would cost a fortune. Having said that since the beginning stages of all this I've never needed emergency care for my back. Just endless routine appointments.

maizie, I had an operation on my knee 30plus years ago and now have arthritis under the patella. Apparently I have bone on bone and need a replacement but I can assure you that's not happening any time soon! I'm surgery phobic now. Yes, I swear by Pilates. Love it and do my exercises every single day.

Goodness I've also had the injection/scan thing and it was fine. A woman there was bigging it up telling me how much it burnt and hurt and I was in tears by the time I went in, but honestly it was no different to any other scan I've had.

I seem to be constantly falling over/down at the moment. Last night I fell down a flight of our stairs. All the way with a bang on the base of my spine and a clout on my right shoulder to boot on each step. Lovely.

I also had a call from the docs and have to go today about the results from my internal and blood tests last week. I'm hoping it's a different doctor, I've been debating whether to relate the conversation during the legs akimbo, but hey, I can only die of embarrassment once!
Doc - What size speculum do they use when you have a smear?
Me - (humour to cover embarrassment) I'm not sure, I've had 3 children so somewhere around builders bucket?!? (nervous laugh)
Doc - Vaginally?
Me- Er yeah.
Doc - (still scrutinizing my bits) Hmm, you tore badly with one of your labours.
Me - Er yeah. (crawl off feeling verrrr little/embarrassed)

It's a joy being a woman innit?

Pavlov I would go for it, we've got a week child free in June and DH booked air tickets to Helsinki a couple of days ago. Talk about rash!

Can I ask please, when people talk about loss of pelvic sensation what exactly do you mean? I recently started having trouble weeing and can't seem to pull the muscles in during pilates, I also have some bedroom related issues

Hello to everyone else, sorry for the huge post!

Oh cowmop you poor thing, having falls and horrid internal. That pelvic numbness does sound worrying,could you have knocked something when you fell? You should see dr I think that is what they always say as being quite urgent.