Monday, 30 December 2013

Rotary Subluxation of the Atlanto Occipital Joint

Lucy was first admitted to hospital in August. She had been diagnosed as having a rotary subluxation of the atlanto occipital joint. Now, I had no idea what this meant at first, other than it was a bone in her neck that had moved.

The atlanto-occipital joint is the top join of the cervical spine which connects to the skull. It is very rare for this joint to move, it is slightly more common for the atlanto axial joint to move, especially when involved in an accident. My little girl did not have an accident, the bone moved by itself, probably due to lax muscle control holding it in place. I'm still not completely sure why it moved, neither are the doctors, but I do hope to find out.

First the doctors talked about manipulation, then they talked about traction. They spent five days locating a traction bed for Lucy, then changed their minds. In the end we were sent home with a Miami J collar and regular physio appointments. The only treatment she had been given in hospital was muscle relaxants in the hope that her neck would just spring back.

We came home and really nothing had changed except that with the collar on the pain was not so bad and Lucy was able to eat and drink again. We went for physio therapy every week. There was no improvement but we managed to keep her neck from completely stiffening up.

Thirteen weeks after we had first taken Lucy to the hospital she was given another CT scan. We were told to stop physio therapy and keep the collar on all the time. We then waited and waited to be seen by the hospital. I had to call and make a fuss before they finally found time to see us.

Lucy was given another scan and then admitted for a manipulation. We were told that she may have a Halo Collar fitted while in the theatre. It wasn't until a few weeks later that we learnt that the joint had continue to move out of position, from the first scan to the last it had moved just over 2 mm, in total it had moved 4 mm.

When I went to see Lucy after she came out of theatre she was very distressed and horrified by the halo. It really is an awful contraption, but it is something you get used to. Lucy was amazing, her initial distress soon passed and she has just got on with things. She was in a lot of pain for the first couple of days, and the anaesthetic had made her sick, but she was soon up and walking about, she has been so brave.

Day 1 Of Halo wearing
We are currently starting week four of halo wearing. Just two more weeks to go!

Monday, 23 December 2013

Lucy's Story

In August 2013 my little girl, Lucy, woke up with a bad neck. A visit to the GP didn't really help, he thought maybe tonsillitis but she wouldn't open her mouth far enough for him to see inside. I wasn't happy and took her to A&E. We were told she had torticollis (bent neck) and that it would likely correct itself within 48 hours. It didn't and my little girl was finding it difficult to eat or drink. A CT scan was done one her brain, but that came back ok. A couple of days later a CT scan of her neck revealed a rotated bone at the top of her spine. In medical terms, a subluxation of the atlanto occipital joint.

Now, I tried to Google this term and all that came up were medical records, difficult to understand and some quite scary. I figured that the condition might be quite rare, and apparently it is, but it does happen and it's quite scary when you can't find anything that can offer advice or help. This is why I have set up this blog. Hopefully, the next time someone searches for subluxation of the atlanto occipital joint, or even atlanto axial joint, or even C1, then maybe they will find some support in my words and the story of my little girl.

Another reason I have set up this blog is to raise awareness of Hypermobility Syndrome, because I am certain that this is why my daughter had the subluxation. I'm still travelling this journey so I want to share my story as I go and maybe help or inform others of our experiences along the way.

Lucy was first diagnosed as hypermobile when she was six years old. She'd been having pain in her knees and I'd asked the GP to investigate. He sent her to the hospital for x-rays but nothing showed. They did point out that she was hypermobile. Shortly afterwards I was having her assessed for Autism as her teacher suspected that she might be on the spectrum. I did too, but I'd kept it to myself until it was noticeable by others. As part of her assessment she was seen by a physio therapist who diagnosed her as hypermobile. She was also diagnosed as high functioning autistic, but I'll talk more about that later.

Now, being hypermobile is quite common, most people know the condition as being double jointed. However, when the hypermobile joints cause you pain and discomfort then it's known as hypermobility syndrome. The assessment is based on the history of the patient and their score on two charts known as the Beighton score chart and the Brighton Criteria 

Lucy scores 9 on the Beighton score chart. She's not been medically assessed yet on the Brighton Criteria, but seeing as she currently has a subluxation of a joint and has suffered chronic pain for years now, then it's likely that she would get a diagnosis of Hypermobility Syndrome. 

When it was first discovered that Lucy had a subluxations of cervical joint the consultant was convinced that she had had a fall. I know that she didn't (not even at school because it happened during the holidays). She woke up with condition which is very unusual. It's also scary because it means it could happen again.

In my next post I will write about what happened when Lucy was admitted to hospital and how her treatment has progressed. 

Thursday, 19 December 2013


"When you hear hoof beats think horses, not zebras"

Zebra is the medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely.

Medical students are taught to look for the more commonplace diagnosis. This means that those patients with a more exotic condition tend to wait longer for a proper diagnosis.

Hypermobility Syndrome type III or Elhers Danlos Syndrome are often ignored or mis-diagnosed. I am currently awaiting a proper diagnosis for my daughter and this blog is to record our journey.

Lucy is my little zebra.

A Day in the Life

 I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in...