Scoliosis: Life, Support & Friends

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 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 ...

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 ...

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 bet...

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 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 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,...

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

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 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 r...

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 ...