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Friday, March 21, 2014

Scoliosis Brace Correction & Quality of Life

ScoliosisJournal posted a new article which talks about the correlation study between in-brace correction, compliance to spinal orthosis and health-related quality of life of patients with Adolescent Idiopathic Scoliosis

Authors:  Siu Ling Chan, Kenneth MC Cheung, Keith DK Luk, Kenneth WH Wong and Man Sang Wong

Background
It has been proposed that in-brace correction is the best guideline for prediction of the results of brace treatment for patients with Adolescent Idiopathic Scoliosis (AIS). However, bracing may be a stressful experience for patients and bracing non-compliance could be psychologically related. The purpose of this study was to assess the correlation between brace compliance, in-brace correction and QoL of patients with AIS.

Methods
Fifty-five patients with a diagnosis of AIS were recruited. All were female and aged 10?years or above when a brace was prescribed, none had undergone prior treatment, and all had a Risser sign of 0?2 and a Cobb angle of 25-40?. The patients were examined in three consecutive visits with 4 to 6?months between each visit. The Chinese translated Trunk Appearance Perception Scale (TAPS), the Chinese translated Brace Questionnaires (BrQ) and the Chinese translated SRS-22 Questionnaires were used in the study. The in-brace Cobb angle, vertebral rotation and trunk listing were also measured. Patients? compliance, in-brace correction and patients? QoL were assessed. To identify the relationship among these three areas, logistic regression model and generalized linear model were used. Result For the compliance measure, a significant difference (p?=?0.008) was detected on TAPS mean score difference between Visit 1 and Visit 2 in the least compliant group (0?8?hours) and the most compliant group (17?23?hours). In addition, a significant difference (p?=?0.000) was detected on BrQ mean score difference between Visit 2 and Visit 3 in the least compliant group (0?8?hours) and the most compliant group (17?23?hours). For the orthosis effectiveness measure, no significant difference was detected between the three groups of bracing hours (0?8?hours, 9?16?hours, 17?23?hours) on in-brace correction (below 40% and 40% or above). For the QoL measure, no significant difference was detected between the two different in-brace correction groups (below 40% and 40% or above) on QoL as reflected by the TAPS, BrQ and SRS-22r mean scores.

Conclusion
The results showed a positive relationship between patients? brace wear compliance and patients? QoL. Poor compliance would cause a lower QoL.

To read the completre article please follow the link for a PDF version.

Monday, October 7, 2013

Simone: From the Heart

Simone Icough August 2011
Well, I haven't posted here for some time, not from my own words anyway! I wanted to try and touch base with everyone again as it seems my Scoliosis support has lacked some enthusiasm since the death of my husband (Chris Icough) and I have been trying to find the strength to get involved again and be who I used to be - this journey has been hard so far and I know I will struggle with it for the rest of my life, however, Chris helped me start my great support group (which ended up being called "howtolookgoodtwisted") and he would be sad if I chose to give it up, we helped create so many great friendships for people with Scoliosis and when all is said and done, I hope that can continue.

I suppose this post is mainly an apology to the members of the group for slipping away into the darkness and hiding, but to be honest I didn't know what else to do, this was an inevitable reaction from my mind, body and soul and I guess it has taken me this long (30 months) to step back into the light and fight again. These days I struggle to focus, before I could do 10 things at once and not be fased by it but now the majority of my thoughts are filled with wonderful memories of Chris and this sidetracks me quite a bit, don't get me wrong I am not complaining about that but it does make me very, very sad and then the rest of my day just seems so pointless. The easiest way I can explain the feelings is; every thought or feeling you have which is remotely happy and makes you laugh or smile, you are left feeling guilty because you are alive and they are not - it has taken me 30 months to find a way to swallow those thoughts................and place them deep inside me so I can continue my day.

My life is a lot more hectic now as I am still running the business which Chris and I did together but now I am doing a lot more of the work so my time is very limited. I am trying my best to organise myself efficiently so I have plenty of time for my twisty friends, my group and the website, however, this is what I have been failing to do the most: ORGANISE, it always used to one of my biggest strengths but due to the trauma of losing Chris I have lost my way somehow, however, I am now back in our home and I can feel Chris all around me which is helping me build the strength to fight, not only for me but for the cause of Scoliosis.


Scoliosis: Making People Stronger from Within
I have had many a moment where I have hovered over the delete button for the howtolookgoodtwisted facebook group as I felt I couldn't cope. I felt I was letting the members and the moderators down, I wasn't replying to messages, creating new content and fund raising ideas; I just stopped. BUT, from somewhere within me there has always been a voice telling me that I would actually be heartbroken if I walked away after 9 years of running support groups. Luckily that voice was right and I walked away from the button!


It has been a rocky road, for me, my family and friends, but in so many ways I am lucky girl, I have a great family on both sides, some stunning friends and I know Chris will always be with me; I just wish it didn't have to hurt this much!

Thanks to all the members of the group for bearing with me and for offering support. To my amazing moderators, I love and adore you all so much you have no idea, thanks sooooooooo much for all that you do, you all deerve a medal!

I will be making more of an appearance from now on and gathering information from as many places as I can to keep supporting you through your journey - let's do it together and in true TWISTED style!


Simone

Wednesday, August 28, 2013

Pulmonary Function after Anterior Instrumentation

iScoliosis recently published an article in relation to: Pulmonary function after less invasive anterior instrumentation and fusion for idiopathic thoracic scoliosis

Published: 21 August 2013

Purpose: Standard thoracotomy for anterior instrumentation and fusion of the thoracic spine in idiopathic scoliosis may have detrimental effects on pulmonary function. In this study we describe a less invasive anterior surgical technique and show the pre- and postoperative pulmonary function with a minimum follow-up of 2 years.

Methods

Twenty patients with Lenke type 1 adolescent thoracic idiopathic scoliosis were treated with anterior spinal fusion and instrumentation. The mean preoperative Cobb angle of the thoracic curve was 53[degree sign] +/- 5.8. Pulmonary function tests (PFT) and radiographic evaluation was performed.

Results

The mean postoperative correction in Cobb angle of the thoracic curve was 27[degree sign] +/- 8.2 (49%).
The mean preoperative FEV1 was 2.81 +/- 0.43 L, which increased to 3.14 +/- 0.50 L at 2 years postoperatively (P = 0.000). The mean FEV1% did not change (89.60 +/- 7.49% preoperatively, versus 90.53 +/- 5.95% at 2 years follow-up, P = 0.467). The TLC increased from 4.62 +/- 0.62 L preoperatively to 5.17 +/- 0.63 L at 2 years follow-up (P = 0.000). The FEV1% at two years of follow-up improved to 104% of the FEV1% predicted value. The FEV1 improved to 97% of the FEV1 predicted value.

Conclusion

Anterior spinal fusion for idiopathic scoliosis by means of a minimal open thoracotomy proved to be a safe surgical technique that resulted in an improvement of pulmonary function. Our results are similar to those of thoracoscopic procedures reported in literature. 

Download this article about pulmonary function after less invasive anterior instrumentation and fusion for idiopathic thoracic scoliosis as a pdf

Monday, March 4, 2013

Scoliosis Charity Ball

Jess contact How To Look Good twisted to talk to us about her Scoliosis Charity Ball which is taking place on the same day as our own event in York.
 
Jess is 15 years old and is raising money for Scoliosis, her event will be held at Jocasta's Lincoln. 
 
Jess says "Scolio is a charity that I set up which sends gifts and grants wishes to children around the UK with serious conditions and illnesses. I set up Scolio after an operation to correct my Scoliosis where unfortunately I suffered rare complications (I have now made an almost full recovery)"
 
Tickets for the ball are £40 which includes a welcome drink, 3 course meal, coffee, raffle, disco, auction, photographer and live entertainment by Off Limits! 
 
This will be a brilliant night which shouldn't be missed, says Jess.
 
"I really hope you are able to join us as it would be great to see as many people as possible there."
 
For tickets to the Scolio Ball, please contact Jess via her Facebook Page: Scolio Ball
 
The How To Look Good twisted team would like to wish Jess the best of luck for her event and hope she has some fun and raises the amount she needs.
 
 

Tuesday, January 15, 2013

Physical Therapy Intervention - AIS

ScoliosisJournal recently reported about physical therapy intervention studies on idiopathic scoliosis-review with the focus on inclusion criteria.

Authors: Hans-Rudolf Weiss, MD, Elisabete Santos Leal, OMT, Ulrike Hammelbeck BSc

Background
Studies investigating the outcome of conservative scoliosis treatment differ widely with respect to the inclusion criteria used. This study has been performed to investigate the possibility to find useful inclusion criteria for future prospective studies on physiotherapy (PT).

Materials and methods
A PubMed search for outcome papers on PT was performed in order to detect study designs and inclusion criteria used.

Results
Real outcome papers (start of treatment in immature samples/end results after the end of growth; controlled studies in adults with scoliosis with a follow-up of more than 5 years) have not been found. Some papers investigated mid-term effects of exercises, most were retrospective, few prospective and many included patient samples with questionable treatment indications.

Conclusion
There is no outcome paper on PT in scoliosis with a patient sample at risk for being progressive in adults or in adolescents followed from premenarchial status until skeletal maturity. However, papers on bracing are more frequently found and bracing can be regarded as evidence-based in the conservative management and rehabilitation of idiopathic scoliosis in adolescents.

To read the whole story and see the diagrams then you may do so by visiting ScoliosisJournal

Monday, January 14, 2013

It's time to Get Mad....

If there's one thing I've gotten very good at, it's complaining. Not about pain, mind you. Pain is inevitable and there is no point in complaining about it beyond the average "Ow, I hurt" and "Darling could you pretty please get me a heat pack?" followed by the batting of eyelashes. No, there is no point in complaining about pain.

Unless you are really, super mad. I'm talking rage-infused-throttling-mind-blowing-full-of-hate mad. And over the holidays, literally a day before I had to pack up my world and move to a new city (incidentally, big cities are pretty sweet), I got mad.

You see, I've been battling with the Alberta Government for some time to get AISH support. AISH either stands for Assured Income for the Severely Handicapped or As If, Shit, Hahahaha! I'm beginning to lean slightly towards the latter simply from this experience. I can't work full time. That's a given because of the pain. I also can't really afford my medication, which is also a given. Essentially, I am poor, in pain, and caught in the biggest Catch-22 someone in this situation can imagine. I was rejected from AISH because my condition was not considered severe nor permanent (Apparently the concept of a 'fused spine' was lost on the AISH worker making the decision.) But hey, I can appeal the decision so that's good! Appeal it I will! I will charm them with my banter and my rhetoric! I will stun them with the pieces of metal they pulled from my back! I will-

Wait, I'm sorry, what? Oh, you say because I am moving in with my boyfriend my financial eligibility now has to be reevaluated? You say because he is employed full time, and because we are living together, we are considered cohabitating and financially interdependent even though we are not financially interdependent? He doesn't pay for me, I don't pay for him. Oh, oh I see, that doesn't matter even though the legal terms for adult interdependent relationships in Alberta say that we have to be living together for three years? Oh? The rules don't apply to AISH? Well, why the hell do we even have- no, no don't answer it, I don't want to know.

So there you have it folks, now not only do I have to appeal my original rejections. I now have to appeal my financial eligibility based off of this ridiculous rule. Apparently the legal terms used in Alberta Legislation do not apply to AISH. Go figure.

Needless to say I was upset. This whole process has been going on for almost a year, and I am not getting in any less pain, nor am I miraculously getting richer. So, what do we say when we are upset by the Alberta Government?

Not today, Alberta Government.

Aaaand then we write a mass email to every. single. MLA. in. Alberta. (For the record, MLA's are our Members of the Legislative Assembly. They represent us on a provincial level. Essentially they go to bat for us in the legislature.) And when you write an email to every single MLA in Alberta decrying their poor treatment of you and the rest of the province, and telling them that they are pathetic and their laws are pathetic, and how ridiculous it is for someone in pain to be going through all this for a measly $200 bucks a month to cover medication... well, you eventually catch someone's attention.

Now, as it turns out, by moving to a new city I actually ended up moving into the Constituency of the Alberta Premiere. That's right, Alison Redford is my local MLA. As soon as I was told that I got the biggest shit-eating grin on my face, because who better to make waves at (or poke relentlessly in an effort to say "you there, notice me! Notice my pain!) than the person that is allegedly running the Province.

I got a lot of generic emails back. A lot of "Please tell us your address so we can forward this message to your MLA" yadda yadda. But then one email stood out above the rest. An email from another MLA in Calgary who is a member of the Wildrose Opposition Party. I don't like their politics, but I damn well appreciate what happened next. As it turned out, this MLA was the official Health Critic for the Opposition. Essentially, it is her job to hear these complaints and beat her fist in the legislature in an effort to draw attention to the problems. So I made contact with her assistant, who passed my angry (and perhaps vaguely insulting email) on to Premiere Redford's MLA office, as well as the office of the human services minister (who I still haven't heard from) and someone else (whose job is probably primarily to dance in a circle going "alalalala").

Well brilliant! Thank you for actually responding to my email! That made me happy. Then lo' and behold, I get back from school last week and there is a follow up email from the assistant asking if I had heard anything from them. When I told her no, she resent the email requests to the three offices and then emailed me right back to update me on the situation.

I'm not saying anything is going to happen. I will still end up appealing my financials, and if I don't end up winning that, I will still send my speech to every MLA and every newspaper in the Province in an effort to draw attention to the needs to those in Chronic Pain. I have an appointment with the Chronic Pain Clinic in the next month, so I'll speak to my nurse and ask her to help me go through the letter and see what else can be said. If it comes to that point, it won't be an appeal for help (at least not personally), but an appeal for attention to the problems of my Provincial Health Care System. Crusading by halves won't accomplish anything, but so help me god I will do whatever it takes to have people notice me and this problem that myself, and so many others must be suffering day in and day out.

And after that, well I suppose I'll just have to find something else to get mad at.

Thursday, October 25, 2012

Scoliosis Campaign Fund Run

As we seem to be blogging about people raising money of late, Laura pone of our very own moderators on the How To Look Good Twisted fan page, sent me some details of other people who are raising money for the SCF. Teamscoliosis will be running 13.1 miles which starts and finishes at the O2 Arena, London, 28th October, 2012.

The people who are running this 13 miles were inspired to do this by one of our very own Moderators, Laura Campbell.

They said

"Our friend Laura has suffered with scoliosis since she was 13. At 18 her curve had progressed to 72 degrees and she underwent 10 hours of major life threatening surgery at the University Hospital of North Staffordshire, when surgeons drilled titanium rods and screws into her spine to straighten it. After three days in intensive care and a week in hospital, Laura made a great recovery. However, she has since broken her back twice and two years ago her spine showed further signs of curving. She has recently had to have three more major operations to add more rods and screws down into her pelvis.

So after seeing what a painful struggle it can be to cope with this condition, we would love to raise as much money as possible for The Scoliosis Campaign Fund and perhaps help to improve treatment and support for patients"

ScoliosisNutty would like to wish them well for this weekend and hope you can raise a good amount of money for this event that will help people with Scoliosis.

You can donate to their charity page and pay with either Visa, Mastercard, Delta, etc

Good luck guys and thanks for sharing