The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

goodness congratulations!

live I went to the gym yesterday after my first day back, it may be that is why I am tired . seriously, the tiredness is that 'been in pain all day' tiredness, which is so strange as I just don't get that at the gym. It's the constant moving, twisting, turning, sitting, standing, sitting, shifting stuff that is wearing me out. I just need to get back into the swing of it, I guess that's why GP said short week this week, and only one more day to go before the weekend It's mad that I can do 1 hour on the cross trainer and feel great (I do take codeine/paracetamol/napraxen first!), but 5 hours at work and I am Done. If they got rid of some of those blinking doors I would be alright! I used to be fit. I never planned to be fit, just did lots of active things. I took that for granted and now wish I was more aware of how fit I was. I am trying to think to myself, that if it hurts, but I am enjoying it, that's ok. But work, well, that hurts and I am not enjoying it

This rain is overdoing it now. It's like a modern version of 40 days/40 nights, taking into account how we are all much more hardy and have houses and things, so let's make it 100! trainlines are mangled this end of the country, houses are flooded, a fab chinese restuarant on the edge of the sea on Plymouth Hoe has been gutted by storms, I wanted to cry when I saw it, I know you take a risk with businesses like that, but it's not a patch up job, it's going to have to be knocked down and rebuilt. If they even have insurance as they have been hit before, but not like this. There are just tons of people out cleaning the debris on the Hoe, and doing what they can to protect their homes and businesses in preparation for what I have heard is going to be the worst storm yet at the weekend

Slept 6 hours
I love drugs

Well done!

Quick word of advice, go a bit easy on the laxatives now you've started to move those sluggish bowels. I ended up with profuse, bloody ( as in actual blood) diarrhoea two days after surgery and I'm telling you it wasn't nice.

Balance...

So glad you are sleeping. How are things going at home? Are the dc ok and not kicking off too badly. Do hope so. The fact that your dm helped with the pharmacist sounds promising. Since she's clearly not going to step in with being a wonder granny I hope you can find other ways of utilising her.

Go Steady everyone. I'm resting on my bed, air con on in order to rest for an evening out. Just loving it here. Warm weather, domestic help and please myself. Bliss and helping my pain quite a lot. Can't tell if my injection has helped, though think it has, because I'm doing so little.

Guess I'll soon be finding out when I return to the deluge of rain in the uk.

matilda so glad you are enjoying your holidays and finding it eases your pain.

goodness that's wonderful you have slept well again. Did you hear any news on what type of tumour it is, did I miss that?

pavlov hope you are doing ok at work with all those doors! hope you make it through the day ok and look forward to the weekend. According to what I have read working hard at the gym despite some pain is exactly the right approach. As long as you know the exercises are suitable and won't harm your back. Apparently many people avoid exercises as they feel some pain and get worried it will injure them further, this leads to them becoming increasingly unfit (like me) which is actually bad for the back. I must say I have never been a keen exerciser, which I need to work on! But I do like walking esp when it is not a case of wading through mud as at present. I hope the floods are not affecting you too much. Feel very sorry for those who have lost their homes and businesses.

denial happy Friday to you also as you were having a bad week at work. Hope you are ok now.

scone how are you getting along?

Live. You asked the one question that is driving me mad. But I'll let you off. Lol
No

Matilda - noooo
Oh dear. Good advice

Matilda, remind me which country you've escaped to.
I'm sure that I saw a glimpse of sunshine (a single ray) as I closed the blinds to lie down again.
So much more relaxing than being on hospital - being at home.
Until the children get home...

oops goodness sorry I mentioned that. But glad you are getting on well at home.

Live, don't worry. Tring to sleep with head by phone waiting the inevitable 'No ID' call. Tummy in mouth today.

Hope you hear soon and keeping all crossed for good news x

Oh gd this is awful
But they expect it to b the bad benign one needing future hard core cancer treatment t despite it not being cancer

Oh goodness, have they just been in touch. What is it called, can we google for you and give you some positive facts?

Although if you could just read that last comment then ignore it because I'm not supposed to say about that and I'm not as anonymous as I could be one here...

Just got The Call
Low Grade Sarcoma

Telling you (all) first.

Crying now with relief.

This is good
Never ever did I think that I'd be grateful to be told I have cancer.

Because I don't.
It's low grade
Margins are clear (they got the whole thing out)

I need to be monitored

(Still crying)

But it's not the bastard benign type that needs chemo, radiotherapy, cancer drugs by the truck load as it's so aggressive and pretty much always comes back.

It also means I'll have support. Macmillan for a start.
I'm with the centre of excellence for these rarer cancers. My doctor was thrilled to have his first 'case'.
Lol

I'm here to please ;)

I'm glad to hear it was this kind and not the bastard one. What sort of treatment will you be having now?

Margins are clear , low grade, congratulations 'Center of excellence' is also a most pleasing phrase. I hope this is the start of the good bit, where you can go 'I kicked it's butt and look at me here smiling'. I'm so happy for your doctor he's probably outlining his paper in his head and deciding where to send it first, he is going to take amazing care of you. And it was there and now it is GONE, in the bin somewhere. I'm so pleased for you.

yey! I mean, obviousy it's not fab that it's anything like cancer at all, but, its not the nasty benign one, and they got it all out!!!! So, this is the start of your recovery right here?!

I am so pleased. I bet you are relieved! It still means you must take it steady, take the meds, be very very gentle on yourself, as you are NOT recovered yet, you have only just had major surgery, but at least you can now concentrate on that steady recovery, sleep without this stress on your mind.

lost oh yes, your doctor owes you big time. he has just upped his game because of you. So you make sure he knows he owes you glad you have macmillan support to, use them now, asap, especially with all the additional support you might need at home right now.

Goodness that is really good news. I heaved a sigh of relief on your behalf! A bit of healing and away you go, it will make the whole process a lot easier knowing there's nothing else to come won't it?

Lost on the injections front the consultant I saw said the initial relief would be from anesthetic, but longer term results could take a while to kick in.

Matilda I'm glad you are still enjoying your break. Make the most of it and take 5 minutes out for me!

I hope everyone else is toddling on ok. I've been back to the doctors today to see yet another locum. She claimed to have no access to any of my previous consultant letters so I had to start from scratch again. She is going to refer me back to the ortho team as apparently she's not allowed to order tests or refer me to the pain clinic. I had to ask for more pain relief so she upped the dosage of the patch. The pharmacy then wouldn't dispense it as she hadn't given adequate instructions on the script, so back to the docs, then back to the pharmacy. One and a half hours later I was back home adding another lovely sticker to my arm. I also have to have a scan and some blood tests because of awol periods. Yay! I'm hoping the change of dose of the patch doesn't give the same initial side effects as before and that my energy levels will start to pick up soon. I'm cream crackered tonight, but did have 2 of ds's friends for tea and a neighbours son came to call, then had to bake with dd1 to make up for all the boys. Luckily dd2 is a tomboy and was happy doing laps of the house with the prisoners and policemen (ever changing rules and imo the cells weren't kept properly locked!)

Happy Friday!

OMG cowmop that sounds like awful treatment. That is terrible she did not have your notes. At least she upped your dosage but screwup on the script is rubbish too! Very poor! Maybe some of the others will know how best handle this. I think maybe it is holding up your treatment as you can't be referred.

GoodnessKnows - great news!

we are raising money for Macmillan at work doing silly things

now planning to do do sponsored Prancercise in Business park near our office in Reading

I was instructed by my physio to let him know if and how I experience pain.
To keep inform him if any pain appeared during , soon after or some time after exercise.
This will help further diagnose what the next treatment should be.
last week I was doing my exercise wrongly and nearly damaged myself

A low grade sarcoma is cancer. But it's a slow growing, non-aggressive sort. It can grow back but slowly and with monitoring can and would, please gd, be spotted. It's been removed, they think, in its entirety. There's a journey ahead and more slow recovery to be done. Hurting a bit today. Think I took the physio's instructions of 10 of each a bit too literally. They probably meant for me to work up to doing 10 reps. of each. Haha
I've consultants to visit and tests to go through. Support is available, too.

A diagnosis of fibromastitis from histology would've been really rather different: very high likelihood of aggressive tumours growing back which, though benign, would need to be treated by the most aggressive forms of cancer-fighting treatments - chemo., radiotherapy and awful drugs.

Thank gd I'm on the road I'm on, I think.

So I've learned many things:

The 7 Wonders of My World

1. There are 'friendlier' cancers.
2. There are parts of my spine I don't need.
3. I have many friends who really are there for me. They're not all the ones I thought they'd be. Many are those that I didn't know were friends.
4. Mumsnet is an oasis and incredible haven of support and advice from those who've 'been there'.
5. Secret Facebook groups are, too.
6. I'm not immune to spectacularly rare things happening to little old me - maybe I'll meet the Queen one day, too !
7. Life is more precious than ever.

The meeting re. my care plan will be held next Thursday. My consultant/ surgeon will contact me (write to me) after that with the details of the plan, and see me six weeks after surgery.

Well, I never ever thought I would be pleased that someone has a sarcoma. What a weird way life has of making you think differently. I am relieved and delighted for you that this is the outcome and perfectly manageable. The goodness household can breathe again. I love the list. All true esp the bit about friends. OMG what a difference that makes.

I'm suffering big time. We had a brilliant night out on the waterfront. Laser show then a surprise firework display. Met a really old chum of DH who has, really bizarrely become a Dr of backs and is offering advice. Didn't really come away for medical stuff but who knows? Small bits of help and advice can make all the difference.

Hope everyone is surviving the grim weather. It had better improve by next week or I'm staying put! The guest who doesn't leave!