[ALWIN]

Good evening

Sorry I don't suppose this is a strictly related condition, but did not know where to post it.

I have had a 'bad back for' around 12 years after an injury. Later diagnosed as osteoarthritis and scoliosis.

I have had episodes where my thoracic spine hurt badly and looked out of alignment (from the back) to the onlooker (no surprise there) but have largely ignored it, apart from pain killers. It comes and goes.

Can anybody tell me if there is more I should be doing because after my yoga instructor pointed it out to me I took a proper look at myself in front of the mirror and I have changed shape a lot during the last 2 years. Even my husband is surprised.

My left shoulder seems to have rotated inwards, the clavicle on the same side is higher than the right, so my shoulder appears higher and that side of my neck measures 2 inches shorter than the right. My left breast now sticks out considerably further than my right (not a breast size issue - the rib cage has moved forwards).

When I lie flat my left shoulder does not lie on the floor.

Is there any point going to my doctor to see if there is anything I can do to slow this process down, or is it just tough? They have never mentioned doing anything about it in the past except for painkillers, but the last time it was examined it only showed up on x ray - nobody could actually see anything on a normal examination.

This is no longer the case. It is obvious, and I am quite shocked at the difference 2 years has made visually. :worried:

I would be very grateful if anybody else with scoliosis could share their experiences. I do yoga, but will take up anything required to help myself because I really, really want to try to stop this. :sad:

I am 43 with the posture of a poorly 83 year old ... and I have only just really noticed. I knew my posture was bad and that I was somehow walking differently, but thought it was because I had been so tired with the autoimmune problems, so had become unfit.:blush: It's why I took up yoga - to improve my posture and flexibility.

I have been walling today, and don't ache any more than usual. Still able to lift quite heavy stones, just get tired as one would expect.

Thank you very much.

 

[raggedyann1]

Alwin,

Have you ever had a bone density scan (it may go by a different name in the UK)? I would definitely bring this up with your GP and see where to go from there. There may not be anything more you can do but you won't know if you don't ask.

Take care,
Karen

 

[LoopyLoo]

Hi Alwin, :flower2:

I'm sorry you are feeling a bit skew whiff at the moment. I've posted the link below for the Scoliosis Association UK, you may have already googled them.

http://www.sauk.org.uk/

I understand that with an exercise programme it can minimise the effect it has on your posture.

Sorry I can't be any more help lass.

Hugz, :hug:

Pam xxx

 

[Lily]

Hi Alwin,

It does sound like it's getting worse for you I wasn't aware that a scoliosis could get worse (I have one but it's mild, never really caused me any problems) but what you describe makes sense.

When I was diagnosed with mine, I was concerned about it and of course me being me :lol: and ever curious, read a lot about it. All I could come up with at that time was what Pam has mentioned: that there is physical therapy and certain exercises that can help a little. I hope your doctor can refer you for these and you don't have to pay out of pocket like we do here

love
Lily

 

[LolaLola]

A good Physiotherapist can be a lot of help Alwin. Unfortunately I have to pay as I was told my problems were "too widespread" for NHS therapy. I go to a Physio at the local Private Hospital when I need to. HSA pay half the cost.
x Lola

 

[ALWIN]

Thanks ever so much for your replies.

I will look up the site Pam, ask about bone density Karen , and go to gp when I have a minute, Lola and Lily. I will probably do the same thing Lola, because of the waiting and waiting.

I am a bit fed up with this aging thing you know and I'm losing my eyebrows already. I feel like a very old lady on the outside, but I am simply not ready for it on the inside. I did not think people felt old until they got to about 80.

Do lupies age quicker?

Take good care verybody and thnk you for your replies again.

 

[LoopyLoo]

Alwin - I'm beginning to think lupies do age quicker. At the moment I think I'm living dog years rather than my real age. :hehe:

Hugz, :hug:

Pam xxx

 

[mysharonna]

Hi Alwin,

While putting myself through college I worked for a chiropractor for 4 years...In that time I can honestly say I saw amazing transformations and spine realignment take place. In my years there, he taught me how to read xrays and I saw first hand how people's bone structure was radically changed, children and adults alike.

I know many people are hesitant to see a chiropractor, some view them as nonmedical professionals. I myself have always turned to them for migraines, joint pain etc with positive results. Obviously not a cure, but just some additional relief!

Not too sure of the availability of them in your area, but wanted to offer my experience and another option.

Hope you are standing taller soon..lol
Sharon

 

[sam101360]

Alwin:

i have a friend who suffered from scoliosis all her life, she had a brace made, she wore the brace in the day, and did physio and exercide in the evenings, she saw some improvement with her posture due to the combined brace/exercise routine.

I do not know if there is a difference between the kind you are born with and that induced by an accident??? so I don't know if this will be an option for you, I also don't know if they still use this method??? I am not at all current with her any longer, we drifted apart after we both moved away from home.

I think an orhopedist might be the best Dr to consult with on this.

Hope this helps - Stephanie

 

[raggedyann1]

Alwin,

We have joked in chat over the years that to arrive at a correct age equivalent for lupies take your chronilogical age and add 50. :hehe: That seems about right as my FIL who is 91 is in better shape than I am. My lupies corrected age is 97 at the moment.

Karen

 

[ALWIN]

Flipping heck - I don't want to do dog years Pam!

Well Karen,
that makes you a right old gimmer in my book - I'm only 94!

Sharon
Will do when I find one up here. I saw a chiropracter in the past and she was great once she'd relaxed me enough to pull me about a bit. I moved, and have not had anybody recommend anybody local yet.

Thing is Stephani, I don't know if I was born with it or not. I only sought help after accident. I'm a bit suspicious of braces, but combined with exercise and stuff to improve flexibility I s'pose it might be useful. It will depend what specialist thinks, I suppose.

Going to ask GP if there's any point in getting it looked at again. Osteopath would be good.

Will speak to yoga man too.

Thanks for help

 

[SoCalEric]

Our son was diagnosed with it three years ago. Doc. had a brace made....but it was rediculous, when he had it on he couldn't put his arms down. A friend is a chiropractor and he's helped our son quite a bit. We've had xrays done in the years since and with treatment from our friend its actually improved. So I'd recommend looking into it, we go twice a week to the chiro.

Eric

 

[ALWIN]

Thanks for that Eric

I have seen little to recommend a brace, and would prefer not to go down that route, but am impressed with chiropractic treatment.

I hope your son is well.

 

[DnA]

Would specialist rehab help?

Hi Alwin

Sorry to hear about your problem - I also have scoliosis but in my lower spine and can't stand up straight or walk properly without crutches.

Here's my opinion based on my experience, which I accept is not the same as yours, so please excuse the rambling...

Can you not get your GP to refer you to an Orthopedic Consultant specialising in rehabilitation? They're really big on this now and if you've gone downhill quite quickly you can push for an urgent referral.

If you have a medical condition which has caused the problem you might be best seeing someone who specialises in these problems... My local rheumy, who knows nothing about lupus, has refused to treat me until my back problems are sorted out - for me this is quite good, so I'm going to ask my ortho consultant who works in a different area to refer me to one of his colleagues who is more knowledgeable!

I've just done an intensive Active Rehab Programme, and the Physios were fantastic - they don't push you into doing anything you can't do and adapt exercises specifically for your problem and are quite specific in telling you not to do more than you are able.

I had physio a while ago under a non-specialist team and they made things so much worse - so I personally would say be very wary.

Anyway enough burble

Sammy

 

[ALWIN]

Thanks for that Sammy.

I will do as you say. I am sorry you cannot stand up straight or walk properly without crutches, and I certainly bow to your experience. It is SO helpful. I will ask for same - word for word. And I will be wary. It is surprising how much damage people can do.

Your last comment is true for me - that's why I have been on a bit of an alternative therapy route. The last phyio that came near me gave me pain that lasted for 3-4 months, and it is hard to forgive and forget.

And i went to a pain clinic to be told i had a pulled muscle by somebody who had clearly not even bothered to read my notes. It all makes you feel a bit insecure.

Thanks again everybody

 

[ALWIN]

Being a bit cheeky ..

Does DnA mean DID not ATTEND, THEN?! :rofl:

 

[DnA]

Something like that - I got blacklisted from a hospital until I made an official complaint because I missed 2 pre-op appointments - once I was in hospital with serious thyroid failure and the 2nd was a day of snow - it took me 2 hours to get 4 miles, so I turned round and abandoned the car at my mum's. Both times the hospital was informed, but when I went for 3rd time I was told they wouldn't treat me as I was a double DNA. The consultant had the cheek (excuse the pun!) to say in a letter to the referring neurosurgeon that I was red-flagged as I was overweight. Interesting as according to BMI I was middle of normal range - comments based on fact I still looked like a chipmonk from thyroid probs

Good job I'm stubborn and got sense of humour!

Sammy

 

[JoD]

New treatment for scolosis

My son has spastic quad cerebal palsy. He can not stand by himself. He uses a power chair ( most of the time) or a walker to get around. He is 13. He has developed a very mild version of kyphosis, more of a C shape to the spine than a S as is typcial in scolosis. He tends to be the expermint kid at the hopsital and was approved by insurance for the spinecor brace.

http://www.scoliosissystems.com/

It is hot FDA approved for cerebral palsy but the company is looking for examples to expand their clientle base. My son sits but so straight with the brace and it is comfortable to boot. He says it feels like a warm hug all day long.
Joanne