Showing posts from September, 2008

Dutch guideline for the treatment of scoliosis in neuromuscular disorders

Authors:M. G. Mullender, N. A. Blom, M. De Kleuver, J. M. Fock, W. M.G.C. Hitters, A. M.C. Horemans, C. J. Kalkman, J. E.H. Pruijs, R. R. Timmer email, P. J. Titarsolej, N. C. Van Haasteren, M J. Van Tol-de Jager, A. J. Van Vught and B. J. Van Royen

Children with neuromuscular disorders with a progressive muscle weakness such as Duchenne Muscular Dystrophy and Spinal Muscular Atrophy frequently develop a progressive scoliosis. A severe scoliosis compromises respiratory function, makes sitting more difficult, and is perceived as unaesthetic. Spinal surgery is considered the primary treatment option for correcting severe scoliosis in neuromuscular disorders. Surgery in this population requires a multidisciplinary approach, careful planning, dedicated surgical procedures, and specialized after care.

The guideline is based on scientific evidence and expert opinions. A multidisciplinary working group representing experts from all relevant specialties performed the research. …

Scoliosis: Fighting the Pain

The last 9 days have been a little hectic, bad news on our adoption from China which has really taken it's toll on Chris and I. We completed our home study last June and passed panel last October (2007), a few weeks ago (August) we were requested to send our money orders to the DCFS ready for our paperwork to be sent to China, this made us very excited indeed and we were loking forward to the day we would receive our LID (log in date).

All these great plans and positive feelings we soon shot into space when our adoption agency (PACT) called us and asked us for CRB checks from Spain, we had never hidden Spain from them and in fact was a positive part of our passing panel, anyway, they had forgotten to ask us to get these done, putting us weeks behind sending our dossier.

2 weeks agao the CCAA (China Centre of Adoption Affairs) relased a statement to the French ministers indicating that many Chinese families are now eligible to domestically adopt these children, meaning the wait for a…

Looking for a Dr

I had a lady call me this morning who is in Hull, UK.

She has an 8 year old daughter who has lumbar scoliosis, however, her GP will not refer her to a specialist as the GP does not agree that her daughter can be in pain, nor will she prescribe pain killers.

The woman who called me was clearly distraught and in her words said “I am ready to kill someone”.

Her daughter is having hydrotherapy but this is not working and renders the little girl in pain for the rest of the day – this is like a broken record for UK GPs, they don’t listen and think they know best – they are NOT always right and it disgusts me that a GP can let a child of that age suffer.

If there is a member here from up North, please get in touch if you can recommend a Scoliosis specialist in your area – the lady is prepared to travel so if she cannot go closer to home she will go down south and see someone there.

Thanks for any help that can be offered :)

Must sort this back ache out

I've got a new sort of back ache as well as the rib bump one just now, it's right below my shoulder blades in the middle, every time I wake up in the morning. Plus my neck hurts. And quite often I wake up with a numb arm. I wonder they're all scoli things? I have a habit of blaming everything on scoliosis though...think I will go to the GP and see if I can get something done. But what treatments are there for adults, that you don't have to pay for, other than pain killers? Will they think I'm malingering or trying to jump on some sort of bandwagon because of Laura's surgery?

I once went to a chiropractor but it cost £££ and all I got was an X ray taken at a dodgy angle that made me look like I had a 90 degree curve and didn't even show me in sexy shoes like the one on the right. The treatment for it all consisted of trying to wrench my head off my body (which wasn't having any - loud popping and crunching noises told me that), while I sat with a silly gr…

A visit to the Drs

Well I had my follow up appointment with Dr Ayllon yesterday (I would have blogged last night but we didn't have internet!).

I was scheduled for an x-ray prior to meeting with Dr Ayllon and I have to say I was impressed, especially for the Spanish! Bless the Spanish we always diss them for being late and slow and yesterday in the hospital they blew me away - we arrived at 17:45 for my x-ray and by 17:58 I was out having 2 x-rays done, waiting in reception for my results! In the UK you have to make an appointment which takes weeks, wait around for ages for the x-ray, pay an absolute fortune and it gets very tiresome, then you make another appointment weeks later to see the Dr with your x-rays.

I turned up at the USP Hospital and had my x-rays done in 13 minutes, walked to their other office to see Dr Ayllon and was in for my appointment with him on time - bloody marvellous, but hey I guess that is also the beauty of private healthcare, however, my last x-rays in the UK cost me 199 GB…

Scoliosis and Stiffness

I am back from my holidays, we went to Doñana National Park camping with my husband's brother and his wife in our lovely Quechua tent.

Before we left we bought 2 camp beds, we usually sleep on a double blow up mattress but our family needed something to sleep on and I am not all that happy with sleeping on the floor, I struggle to get up in the morning.

You should have seen what we managed to ram into an Audi A6 for 4 people to go camping together - hilarious, I swear that the boot gets larger when I show it "stuff" that I need to get into it! HEHEHE. The photo does not do it justice to be honest, not everything was in the car at this point, we still had a table out because we were cooking breakfast on it, so the last things to go in were the cool boxes, food, camping grill, backpack with all knives/forks etc in it, not forgetting 4 rather fatter adults to when we arrived! LOL

I had an appointment today to see a new spinal surgeon in Marbella called Dr Ayllon. My 2 year che…

Scoliosis in Males vs Females

Studies on adolescent idiopathic scoliosis have well documented the differences between natural history of male and female patients. There are also differences in responses to nonoperative treatment, but the results of operative treatment in male patients compared with females have not been widely reported. Only few studies had compared the outcomes of operative treatment between male and female patients with different results.

We retrospectively reviewed the outcome of 150 (112 girls and 38 boys) consecutive patients with diagnosis of adolescent idiopathic scoliosis who were managed surgically between May 1996 and September 2005. Next, male radiographic parameters were compared with female ones pre- and postoperatively. Then, a subgroup of 38 matched girls was compared regarding the age, curve type, curve magnitude, and the instrumentation we used.

In comparing male patients with unmatched girls, the boys had greater mean age (17.3 +/- 2.3 vs. 16.3 +/- 2.9; p=0.…

My daughter had a go at me!

Just goes to show that someone reads my posts! My eldest (23) has reminded me that she is also a member of the scoli community. She's got it as much as I have and describes the same symptoms (pain in icky chairs, goes in more on one side than the other). Well, in my case I am too fat to have much of a waist so it's harder to tell, but I know it's there!

So that's two out of three kids, and I am going to have to watch the youngest like a hawk. The fact that he's a boy will, I hope, mean less chance of his developing scoli. He's autistic and it would be impossible to explain any treatment that became necessary. Still, he's lost weight and, as far as I can see, he "goes in" to the same extent on each side.
I hope Simone is feeling better and that the trip was great.
Best wishes to all