Scoliosis (curvature of the spine)

[Irons]

I was diagnosed some years ago and have always paid for private treatment through physio and chiropractors. My scoliosis causes me a lot of pain and now I have a baby its even worse because of having to pick her up all the time. Being on maternity leave I can't afford private treatment so went to my GP who referred me for physio on the NHS. I've been 3 times and all they've done is give me exercises to do.

Firstly, I don't have time to spend half an hour 3 x a day doing exercises! I don't feel very happy with the treatment and don't feel I'm being taken seriously. I've not had an X-ray and I'm being treated by a very young girl, who probably has no idea what it's like to lift a 20lb baby all day long!

Do I go back to my GP and complain? Does anyone have any advice for me regarding the scoliosis. Any specialists you might know of etc. Please, I'm in so much pain. Monday we were at soft play and today we went swimming and now I'm in bed and feel like I can barely move!

Ibuprofen is becoming my best friend.

Irons, I have Scoliosis and had a rod put in my back when I was 15. I then spent a year in plaster.

Over the years I've learnt to manage the pain myself because GPs know hee-haw about it and referrals to hospital specialists have proved to be of no help.

The best way to prevent pain is no cease lifting anything heavy. Drastic I know but it's the only way.

I am exempt from many household chores and haven't really lifted dd since she was under a year old.

Don't wear heels.

Acupuncture helps every few months as does massage (from dh).

Sorry, I can't offer any more advice but I do understand your pain.

Thanks Yama. Heels are a definate no no. I've learnt that now. Pity because I have a cupboard full of lovely heels that I can't wear

Unfortunately until my little girl is walking I'll have no choice but to lift her. Lets hope she is an early walker!

I had hoped for acupunture as the GP had assured me that the physio would be able to offer it. Perhaps I'll have to bring it up myself.

I like your thinking on the household chores

Oh Yama, I meant to ask. Did the surgery help much?

Yes, I believe the surgery saved my life. I had a 72 degree curve and it was only going to get worse. Consultant explained that my organs couldn't have coped.

An extreme case I guess.

As I was 15 it was my Mum who placed the housework ban.

I do cook and bake well though so that keeps dh sweet.

I found my own practitioner for the acupuncture.

I find that Syndol works quite well as (I think) it has a muscle relaxant.

I bet your neck and shoulders are really tight. Rub sideways across the back of your neck. My acupuncturist does this and it feels great.

Again, my advice is 'Just Do less'.

I had the same problem for years, well I've still got it but it's much less painful now. I also saw lots of specialists (icl acupuncture) to no avail until I saw a lady in Wimbledon Village.

Her name was Joy Walters and she was a Kiwi, I'm gonna try and find the details.

She gave me some exercises to do and recommended very expensive one-to-one pilates style stuff with her. I went along with it expecting it to be useless as normal, but it was brilliant. She also gave me things to do when I was in 'difficult' situations. I used to get a lot of pain when standing up for a while (eg: on my tube journey, in a crowded bar, etc), it was amazing to be able to ease the pain whilst it was happening.

Here's the link: www.joywalterclinic.co.uk/

BTW, she was quite rude and brusque, but was absolutely brilliant. This was about 5 years ago, but what she taught me stuck with me. I have a heavy 19m old and have no problem picking him up.

HTH.

Although I'm wondering if I can convince DH of the "no housework" rule...

In our health authority it's the Physios who refer you on if they can't help you, so it might be worth checking with them what happens next if they can't improve your pain levels. I had a slight curve following absurd back to back delivery of DS, which then led to lots of disc problems. I've just had surgery to fuse the bottom two vertebrae. Before that though I tried everything from acupuncture to physio to spinal injections. The only thing that gave me more strength and actually re-aligned my spine was pilates. Not cheap as I did one-to-one, but it was worth it and definitely improved my mobility. Swimming if you're strong enough - just gently, I did backstroke - is also good.

Irons, I've suffered with this for 15 yrs, since having DS1 (10lb 5oz), then DD (11lb 10oz).

Mine has never been nearly as bad as any of yours, the worst I think was when my SI joint 'gave' about 12 years ago and I had to get the cleaner to come 3 times a week for a couple of weeks just to 'pick up.'

I agree that GPs know squat, ditto the two hospital consultants I've seen. The first one was when I said I didn't take painkillers daily, diagnosed the scoliosis and told me to take Ibuprofen. Brought me out in a rash so that was the end of that.

Then another who implied I was a lazy old cow and what did I expect if I didn't do any regular exercise - sent me to another useless physio.

I've seen several osteos and chiros, had sports massage (ouch) and dry-needling (the conventional form of acupuncture), one to one physical therapy and three lots of physio but nothing worked to a sustainable degree.

I do have light at the end of the tunnel now, I hope - the

tbh the only thing that helps is the exercises and keeping active. make time to do the physio exercises and make time to do a pilates class. my back is unbearable when i stop being active (if i get a cold or too lazy!). i think you have to take some responsibility for your own health.

sorry this is getting long.

The thing I'm pinning my hopes on now is cortisone injections; the last chiro I was seeing referred me for pain management - I went to a consultant anaesthetist who explained that I have Myofascial Pain Syndrome - tight knots in the muscle fibres due to the curvature, which are almost impossible to shift without intervention.

I had the first lot of injections a month ago and, while I'm not pain free, it's much more bearable, and I feel that I can build up the muscle strength without causing myself further pain.

I agree that the right sort of exercise definitely helps but it's a matter of finding the right person - otherwise pilates can be a case of the emperor's new clothes.

I really feel for you with your little one - maybe you could speak to your gp about pain management as you shouldn't have to go through this when you're responsible for a small child.

ourlady - did you try deep tissue massage? that really helped me.

Don't think I have tried that one Eleanor - I'll add that to my list of things to try in the future.
I've also heard good things about Rolfing(!)

Thank you for all the comments. I'll try and look into some of it and will definately ask the physio what's next. I've always been active so I know I'm not a lazy bum, but you know something is wrong when you take your daughter swimming and then you can't get out of bed the next morning!

The Joy Walter Clinic looks very good and is probably just what I need, but unfortunately it's a bit expensive and I'm on maternity leave now, which runs out soon, so just don't have the money for it. Pity because it looks very good. I'll have to see what pilates classes are on offer at out local sports centre.

Irons

Just to add my experience for what it is worth, I think you should demand an x-ray, how can the physio work properly or target your weak areas without that first?

I had an x-ray after months of pelvic pain which came on after pushing a buggy with a flat tyre! and although it found my bottom disc has slipped right out of place, I also found I had mild scoliosis and spina bifida occulta (hidden) which means one of my discs never formed properly - that is the disc that had moved and the rest of my spine was unstable.

I really understand your pain, it is torture and so unrelenting.

Go and make a fuss - DEMAND an x-ray so they can properly see what is going on.

xx

Muriel, thank you. I think that is probably a good starting point. It's what I expected they would do from the beginning! I will have to put on my brave face and "make a fuss"

Irons, muriel's right - you need to know what's causing the pain before anyone can treat it - a good physio will refer you for a scan anyway. And if you do Pilates, I'd avoid general classes - tried those and they made things worse. One to one with a very well qualified teacher was the only thing that worked for me.