Magic!

Today I took Laura back to the Royal National Orthopaedic Hospital (RNOH) for her one-year post-op check, all is well and she doesn't have to go back there for a year.

What I hadn't appreciated is that Laura had an S-shaped curve, the surgery was on the lower bit. Either because of that, or via some kind of magic, the upper curve has gone from about 25 degrees to 18 degrees all by itself.

I can't rate the RNOH highly enough - they've become a Foundation Trust and I've become a member.

Axial Biotech Wins 2009 Award

Axial Biotech Wins 2009 Innovation Award for Biotechnology

Company recognized from more than 100 companies for innovative technology

SALT LAKE CITY, May 4 /PRNewswire/ -- Axial Biotech, Inc., a company revolutionizing spine care through the development of molecular diagnostic technologies, was selected as the winner at the 9th Annual Utah Innovation Award Ceremony. The award recognizes significant innovations and the companies that created them. The Utah Technology Council and Stoel Rives, LLP presented the award to Axial Biotech during an awards ceremony held Thursday, April 30, 2009.

Axial Biotech's award winning product, ScoliScore(TM), is the first-ever genetic test for patients diagnosed with Adolescent Idiopathic Scoliosis (AIS). This new molecular diagnostic tool marks a major advancement in which medical treatments can be personalized to patients diagnosed with this deforming disease.

ScoliScore(TM) was developed by utilizing a genome wide association study that identified a panel of genetic markers associated with severe curve progression. The scoliosis research used in the development of this test included collecting DNA samples from over 9,500 patients from 85 clinical sites throughout the world. The test was then further validated in two separate clinical trials.

"We are honored to have won the Biotechnology/Pharmaceutical category given that the other finalists were Nanopartz and GlycoMira, LLC, which are both remarkable companies that have developed impressive technologies," said Kenneth Ward, M.D., Chairmen of the Board and Chief Medical Officer. "Past winners in the Biotechnology category include the 2004 winner, ARUP Laboratories, a leading national diagnostic reference laboratory. To have Axial Biotech viewed in this same league represents an important accomplishment for our company."

John Climaco, CEO and President of Axial Biotech, said, "I am pleased that the distinguished panel of experts from private industry, government and higher education, recognized the unique value of ScoliScore(TM). Winning the Utah Innovation Award represents tremendous validation for all of the hard work of Axial's employees."

For more information on the ScoliScore(TM) test, please contact Axial Biotech's Customer Service at 877-AXIAL98 (877-294-2598) or visit Axial Biotech website

About Axial Biotech
Axial Biotech, Inc. is the leading developer of molecular diagnostics for common spinal diseases and disorders. Axial is accredited by the College of American Pathologists (CAP) and is certified to comply with the Clinical Laboratory Improvement Amendments (CLIA). Founded in 2002, Axial is based in Salt Lake City, Utah.

SOURCE Axial Biotech, Inc.

Is there a link between scoliosis and dance?

Hmmmm... could there possibly be a link between scoliosis and dancing? One of my friends, who also has scoliosis, thinks so. She did gymnastics before her scoli was discovered and she was forced to quit.

Now I LOVE dancing (have i mentioned that here before?) and dance 5 classes a week. I do 6 hours in total: 3 classes of ballet n 1 class each of Tap and jazz. im not on pointe yet by the way.

When I first found out I had scoliosis, I thought I'd have to quit dance and cried. Then I found out ballet was supposedly better for my back!

So how can dancing be bad for your back? I have realised that on spinekids, loads of girls have something along the lines of "Dancer" on their profiles. And 25% of dancers have scoliosis, according to statistics. Could there be a connection?

After being diagnosed, scoliosis didn't affect my dancing much, apart from keeping me from cartwheeling and holding my posture up straighter (thanks to my brace).
My doctor also told me that exercises haven't been proved to actually enhance curve improvement. However, he encouraged me to stretch daily to keep my spine flexible.
What do you think? Is there a link?

Scoliosis, Bowen & Frustrations

I finally managed to get down and see my therapist on Tuesday after I slipped in the street, we were doing the coccyx move and that is a 2 weekly affair, one side is done on 1 week and then the following week she will carry out the move on the opposite side, unfortunately for me I could not get to her the following week so she had to wait until I could get there, she did the other side anyway to see what would happen - so far so good.

I am still very stiff and in pain but it is not as bad as it was before, I am slowly repairing myself, trouble is I have a long car journey ahead of me next week as we are going to Murcia on holiday next Tuesday, car journeys are never good for me at the best of times but when I am suffering like this the journey will be a struggle, it also seems that our villa is up a hill so I don't expect I am going to enjoy walking up and down that hill everyday, hopefully it looks worse online than it actually is.

At least I am now able to stand and walk better than the previous few weeks, I was struggling to even stand for 5 minutes last week without bad pain from my right hip muscle, if I stressed it out too much I would go into spasm, and I wouldn't say that standing or walking was stressing me out but my back had other things to say!

I am not a depressive person and I tend to take my Scoliosis issues in my stride, however, the past few weeks have really been getting me down, I get annoyed and pissed off that I cannot even just walk round the shops without having to sit down all the time, walking round the shops trying on clothes with my walking stick is never a fun affair, I can't carry everything and the stick gets in the way but if I don't use it I don't have anything to give me support but without that I cannot carry everything without being worn out and then it becomes a chore rather than fun!

To be perfectly honest I just want to be normal and put one foot in front of the other without being in pain, I am FED up with moaning about the pain, FED up with not being able to be as fit as I would like, FED up with the rib hump pain and the sharp shooting electricity pangs that I get and just generally pissed off with the whole Scoliosis thing!

FED up with moaning to the people around me who love and care for me, they don't know what to say or do to comfort me, they know they can' take it away. Trouble with me is I have huge amounts of OverCompensation Syndrome going on where I think I have to be the only person in the World with Harrington rods and chronic pain and climb Mount Everest!!

"I can get through the pain"

I should know by now I am not SuperWoman and when my back is telling me to give it a rest I should do just that, but I don't, I continue with my life, running here, there and everywhere and then I wonder why it hurts.

What is Scoliosis OverCompensation Syndrome?

In order to understand the entire psyche of the Scoliosis patient, an examination of the culture surrounding this disfiguring condition as it has developed through time is in order. Historically, societal intolerance for people with the curved spines of Scoliosis has created a psychological outlook inexplicitly bound up primarily with the condition's deforming aspects--while neglecting the serious internal health problems crooked spines produce that can even be fatal.

Literature and film abound with examples of the reviling nature of the upper back "hump" and the distorted bodies and walking gaits that curved spines produce. Everyone is familiar with some version of "The Hunchback of Notre Dame" with its titled Scoliosis victim pilloried and otherwise vilified as describably the ugliest creature that ever lived. Even more realistic films such as the critically-acclaimed "Europa, Europa" has a striking scene with a crooked lonely woman galumphing hideously after the only person to befriend her--a young Jewish outcast in World War II Poland--when he is rounded up. Then there is the small hero in "The Secret Garden" who fearfully took to bed as a cripple just in dread of the thought that he might develop a scoliosis hump like his father's.


While modern society has made great strides in separating frightful-looking medical conditions like Scoliosis from evil spirits, religious condemnation, and the like, it will never entirely be able to discard its prejudices in the face of seeing crooked bodies that cannot move normally. The unfortunate fact is that until Scoliosis can be effectively prevented and/or treated in a relatively unobtrusive and more successful way, judgmental behaviors will remain. This is particularly true because the great majority of cases of curved spines are attributed to Adolescent Idiopathic Scoliosis (I was diagnosed with AIS), making the cause of 80-85% of the cases unknown. With nearly 10% of the teenage population found to have at least small degrees of Scoliosis, and most high schools of any size having at least one if not more students with severe curvatures needing extensive surgery, the threat of Scoliosis becomes real and unpredictable to others.

Some people in the general population can only handle such fear for themselves and/or their children with avoidance of the victims of Scoliosis, granting them only pariah status. It is difficult enough for Scoliosis victims to have to fight societal ignorance throughout all stages of life, but worse is the fact that they are usually discovered to have shockingly distorted bodies right on the cusp of adolescence, a stage of life already fraught with identity crises and insecurities. Particularly because of the fragility of time in their lives when most Scoliosis patients are first diagnosed, they can develop unhelpful, defensive coping strategies that become a part of their permanent behaviors. These aberrant behaviors have been defined as Scoliosis Overcompensation Syndrome.


Scoliosis Overcompensation Syndrome (SOS) is often seen most severely in Adult Scoliosis Patients who had spinal fusions for Scoliosis as adolescents, particularly in the early years (1960s and 1970s) when the emotional consequences of such a deforming condition and its treatment was not deemed important to recovery. It is caused primarily by a strength-from-adversity outlook on life, developed as a result of patients having to face what are now recognised as barbaric Scoliosis treatments such as weeks at a time in halo-femural traction preceding surgery. (In halo-femoral traction, the bed-bound patient had his or her back stretched with ever-increasing traction weights connected to screws that were inserted in the knees and skull.)

To continue reading the article about Scoliosis Over Compensation Syndrome visit our Scoliosis Support Website

Scoliosis: FINALLY!

I have FINALLY given an approximation of how long I will have to continue with my brace!!!
I'lll HOPEFULLY be done by early 2011!
My current curves are 16 degrees and 19 degrees! It is most likely that I'll never need surgery!
I'm getting a new brace in 3 weeks! My orthotist has said that since I've done well with my bracing (I've now nearly HALVED my original curves of 31 deg n 31 deg), it may be possible to try to overcorrect me. Seems very very painful to be honest...
Apparently the long side on my boston brace will be shortened a fraction and the shorter side will come up further, to control my upper curve.
My next post will probably be on the 4th of June, when I get my new brace.
Also, when we told the orthotist about my skin condition, his reply was:
"Excellent! The brace is doing its job!"
But after some moisturiser, my poor skin is nearly back to normal. There are still scars all over my back though.

Scoliosis: Neuromuscular & Pedicle Screws

Scoliosis journal published research about surgical complications in neuromuscular scoliosis operated with posterior-only approach using pedicle screw fixation.

Authors: Hitesh N Modi, Seung-Woo Suh, Jae-Hyuk Yang, Jae Woo Cho, Jae-Young Hong, SuryaUdai Singh and Sudeep Jain

Abstract (provisional)

Background
There are no reports describing complications with posterior spinal fusion (PSF) with segmental spinal instrumentation (SSI) using pedicle screw fixation in patients with neuromuscular scoliosis.

Methods
Fifty neuromuscular patients (18 cerebral palsy, 18 Duchenne muscular dystrophy, 8 spinal muscular atrophy and 6 others) were divided in two groups according to severity of curves; group I (<90>90 degree). All underwent PSF and SSI with pedicle screw fixation. There were no anterior procedures. Perioperative (within three months of surgery) and postoperative (after three months of surgery) complications were retrospectively reviewed.

Results
There were fifty (37 perioperative, 13 postoperative) complications. Hemo/pneumothorax, pleural effusion, pulmonary edema requiring ICU care, complete spinal cord injury, deep wound infection and death were major complications; while atelectesis, pneumonia, mild pleural effusion, UTI, ileus, vomiting, gastritis, tingling sensation or radiating pain in lower limb, superficial infection and wound dehiscence were minor complications. Regarding perioperative complications, 34(68%) patients had at least one major or one minor complication. There were 16 patients with pulmonary, 14 with abdominal, 3 with wound related, 2 with neurological and 1 cardiovascular complications, respectively. There were two deaths, one due to cardiac arrest and other due to hypovolemic shock. Regarding postoperative complications 7 patients had coccygodynia, 3 had screw head prominence, 2 had bed sore and 1 had implant loosening, respectively. There was a significant relationship between age and increased intraoperative blood loss (p=0.024). However it did not increased complications or need for ICU care. Similarly intraoperative blood loss >3500ml, severity of curve or need of pelvic fixation did not increase the complication rate or need for ICU. DMD patients had higher chances of coccygodynia postoperatively.

Conclusions
Although posterior-only approach using pedicle screw fixation had good correction rate, complications were similar to previous reports. There were few unusual complications like coccygodynia.

Download the Provisional PDF file regarding surgical complications in neuromuscular scoliosis

Scoliosis: Information & Supports Needs

Scoliosis journal published research towards and understanding of the information and support needs of surgical adolescent and idiopathic scoliosis patients: a qualitative analysis

Authors: Radha MacCulloch, Sandra Donaldson, David Nicholas, Joyce Nyhof-Young, Ross Hetherington, Doina Lupea and James G Wright

Abstract (provisional)

Background
Informed decision making for adolescents and families considering surgery for scoliosis requires essential information, including expected outcomes with or without treatment and the associated risks and benefits of treatment. Ideally families should also receive support in response to their individual concerns. The aim of this study was to identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery.

Methods
Focus group methodology was chosen as the primary method of data collection to encourage shared understandings, as well as permit expression of specific, individual views. Participants were considered eligible to participate if they had either experienced or were anticipating surgery for adolescent idiopathic scoliosis within 12 months, were between the ages of 10 and 18 years of age, and were English-speaking.

Results
Two focus groups consisting of 8 adolescents (1 male, 7 female) and subsequent individual interviews with 3 adolescents (1 male, 2 female) yielded a range of participant concerns, in order of prominence: (1) recovery at home; (2) recovery in hospital; (3) post-surgical appearance; (4) emotional impact of surgery and coping; (5) intrusion of surgery and recovery of daily activities; (6) impact of surgery on school, peer relationships and other social interactions; (7) decision-making about surgery; (8) being in the operating room and; (9) future worries.

Conclusions
In conclusion, adolescents welcomed the possibility of an accessible, youth-focused website with comprehensive and accurate information that would include the opportunity for health professional-moderated, online peer support.

Download the Provisional PDF file towards and understanding of the information and support needs of surgical adolescent and idiopathic scoliosis patients: a qualitative analysis

It's been a year

May 6th was the first year anniversary of my daughter Laura's surgery at Stanmore. She is completely back to normal and is just as flexible as she was before the operation. We were to have seen the surgeon again this week but she's got exams in school so we've had to put it off till the end of the month.

If anyone out there is unsure about whether to go ahead with surgery, I would without hesitation say go ahead. Each case is different, but if it is recommended to you then go for it. If anyone would like to know more, e mail me at eynbrera at yahoo dot co dot uk.

Judith

Scoliosis with Prader Willi Syndrome

Scoliosis journal reported comparisons of conservative and surgical treatment in patients with Scoliosis and Prade Willi Syndrome

Authors: Hans-Rudolf Weiss and Deborah Goodall

Abstract (provisional)

Background
In children with Prader Willi syndrome (PWS), besides growth hormone (GH) therapy, control of the food environment and regular exercise, surgical treatment of scoliosis deformities seems the treatment of choice, eventhough the risks of spinal surgery in this specific population is very high. Therefore the question arises as to whether the risks of spinal surgery outweigh the benefits in a condition, which bears significant risks per se. The purpose of this systematic review of the Pub Med literature was to find mid or long-term results of spinal fusion surgery in patients with PWS, and to present the conservative treatment in a case study of nine patients with this condition.

Methods
Types of studies included; all kinds of studies; retrospective and prospective ones, which reported upon the outcome of scoliosis surgery in patients with PWS. Types of participants included: patients with scoliosis and PWS. Type of intervention: surgery. Search strategy for identification of the studies; Pub Med; limited to English language and bibliographies of all reviewed articles Nine patients with PWS from our data-base treated conservatively have been found, being 19 years or over at the time this study has been performed. The results of conservative management are described and related to the natural history and treatment results found in the Pub Med review.

Results
From 2210 titles displayed in the Pub Med database with the key word being "Prader Willi syndrome", 5 different papers were displayed at the date of the search containing some information on the outcome of surgery and none appeared to contain a mid or long-term follow-up. The PWS patients treated conservatively from our series all stayed below 70degrees and some of which improved.

Discussion
If the curve of scoliosis patients with PWS can be kept within certain limits (usually below 70 degrees) conservatively, this treatment seems to have fewer complications than surgical treatments. The results of our retrospective study of nine patients demonstrate that scoliosis in this entity plays only a minor role and surgery is unnecessary when high quality conservative management exists.

Conclusions
There is lack of the long-term follow-up studies in post-surgical cases in patients with PWS and scoliosis. The rate of complications of spinal fusion in patients with PWS and scoliosis is very high and the death rates have been found to be higher than in patients with Adolescent Idiopathic Scoliosis (AIS). The long-term side-effects of the intervention are detrimental, so that the risk-benefit ratio favours the conservative approaches over spinal fusion surgery.

Download the PDF file for comparisons of conservative and surgical treatment in patients with Scoliosis and Prade Willi Syndrome

The "Creeping Crud"

Oh my gosh.
I have an addiction.
I just can't seem to help myself.
It all started on Friday night. Two spots on my back, that were red, swollen and puffy. I immediately thought something had bit me and ignored it.
Then Saturday. The spots had expanded to the size of a small notebook! I showed Mum, but she thought it was some random insect bite as well.
And then Sunday. The rash had taken over my whole lower back and crossed over to my waist and hips. There were about 12 random bumps as well, which were sticking out, scattered across my back.
It's soooo itchy! I look forward to wearing my brace now to stop myself scratching!
The Creeping Crud, as named by Judy Blume in "Deenie" (FANTASTIC scoli book, btw) THIS is what happens when you don't wear a singlet under your brace.
But the fact is:
I DO!
So now I wear 2 singlets under my brace. Next Sunday, I have a community event in which I have to dress up in a short costume that shows my stomach. Now I really don't want to. It looks like I have some sort of terrible disease on my skin.

My new brace stinks. Big time.