Thursday, 15 August 2013

Star and the Broken Neck

Star is hypermobile, she was diagnosed almost two years ago when we were having the pain in her knees investigated. We didn't really understand the full implications, or that there were several types of hypermobility. We have now been promised that she will have a full diagnosis of the type of hypermobility she does have and I'll post more about that when we learn more ourselves.

Almost two weeks ago Star woke up with a stiff neck. I thought it would pass, but it lasted all weekend. On the Monday morning I took her to the GP who didn't really know what was wrong. On Tuesday we went out for the day and her pain just got worse, by mid afternoon it was so bad I took her straight to Accident and Emergency. She was diagnosed with Torticollis and given some muscle relaxant to help. She was due back for a review two days later and because of a blood rash that had appeared she was taken for CT scan of her brain. It came back clear. We were told she would be back in for an MRI scan the next day which was Friday. Then we got a call to say they didn't think Star would cope with an MRI and would have a further CT scan on her neck on the following Monday.

Monday arrived and we spent five hours at the hospital, two and half waiting for the scan and two and a half waiting for the results. Only we didn't get the results because they hadn't been marked as urgent and we waited all that time only to be told they would call us the next day.

They didn't call us. I called them twice, only to be told they didn't have the results yet.

I took her back to the hospital the next morning and she was seen by a neurosurgeon who admitted her. Because of her hypermobility the joint in her neck had rotated and was misplaced, or dislocated. She was immediately fitted with a neck brace. This made her feel a little better and she was finally able to swallow properly. Up until this point, thirteen days in total, my little girl had been in agony and had been unable to eat or drink properly. If only she had been fitted with a collar on her first visit.

This morning we were told that she was going to be put on traction to try and pull her neck back into position. We waited all day, but I guess they will be doing it tomorrow now. I just hope and pray that they can fix her and will do it soon. I really can't bear to see her suffering any longer. It's her birthday next week and she really doesn't want to spend it in hospital.

Here is my little girl trying to enjoy her day while in pain.


This is her today, in her hospital bed but still smiling because she's been treated to two lovely new cuddly toys.



I'm praying hard for my little girl.

Update: 20th August. 
diagnosis:  rotary subluxation of mid atlanto occipital joint.
The consultant has decided against traction despite the hospital spending three days locating a traction bed for Star. It is a relief though, I'm sure she would have hated it. Next step is a further CT scan on Thursday to see if the Diazepam along with the collar and physio has made any difference. To date I can't see any improvement, but I figure a scan is the only way to see what is actually going on. Depending on the results the consultant will then decide on a further course of treatment. There has been talk of manipulation but I'm still undecided on how I feel about that. It's not something I'd like to happen and I've heard that it's not very successful. It may be possible for a complete recovery by using the collar alone, but it could be a long drawn out method. It's all pretty stressful. We have Star home at the moment until her scan. Sometimes she is ok, sometimes she's in pain, we are trying to keep in control of the pain and doing regular physio (which she hates, but if she stiffens up it will only make it worse) I'm scared that something is going to happen to her, a fall could be very dangerous and Star is incredibly clumsy. I just want to wrap her in cotton wool.


8 comments:

  1. Gosh, that sounds like a hugely unpleasant experience. Am glad that you're getting somewhere now, poor girl.

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  2. What an absolute nightmare, I'm so glad they finally found the cause of the problem, just wish it hadn't taken so long! I hope it gets sorted soon and she has a lovely birthday x

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  3. Oh bless her. I have hypermobility myself, but it took me nearly 30 years to be diagnosed. I used to have chronic pain in my knees and hips. When I finally got to see a specialist he took literally 1 minute to tell me what my problem was. I had to learn to stand differently, when I stand straight I'm actually pushing my knees backwards. It was such a revelation, I realised I've always bent my elbows backwards, but never really thought about it - but it happens with all my joints. I do have to careful with my neck too.

    So pleased that yor daughter has been diagnosed now x

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  4. wishing her a speedy recovery love carolinexx

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  5. So sorry to hear she is going through this, it must be awful for her - and you. It sounds like the endless NHS delays are only making things worse. Thinking of you all and keeping fingers crossed for a speedy recovery.

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  6. Oh no :( it sounds horrible. I hope she is slowly feeling better now, and that the collar will help and you won't need anything else. Sending you my thoughts and prayers. x

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  7. Oh my gosh, this must be so worrying for you. I am so sorry. Please keep us posted on how she is getting on. Thinking of you. Thank you for linking to PoCoLo xx

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