Free

Today Lucy had her halo removed (again)
We arrived at the hospital at 8am, she went to theatre at around 9.15am and was back on the ward by 10.15am

She was drowsy for a while as the anaesthetic wore off. She'd been waking a little and asking if the halo had gone, then falling back to sleep. The she'd wake again and ask if the halo had gone. Finally when she woke up properly she expressed her joy at not having the halo anymore and said.

"At last, I'm FREE!"

Then she started crying, which made me cry.

She had a collar on but the consultant had told us that she needed to take it off as much as possible so she could strengthen her neck muscle which hadn't been used for two months. Two months! It's been over 12 months that she's been in a collar or halo, the consultant can't see past the current situation which was removing the halo after two months.

We took the collar off and Lucy exclaimed

"I'm normal again" 

Then she started crying again, which made me cry again.

Truly an emotional day.

Cock Robin

We had a hospital appointment today to see how Lucy was getting on after having her halo removed.
The Doctor straight away noticed that her neck was not straight. He asked several times when the halo was removed, I'm not sure why, it was two weeks ago, it seemed like he didn't believe me. He said that she had a xray on 3rd March and her neck was straight. I said 'yes, that was two weeks ago, when she had her halo removed.'

He took off her collar and asked her to look to the left, which she did (and grimaced). The he asked her to look to the right, which she couldn't do (and grimaced even more). He asked her if she was in pain, she replied 'a little bit' She hates admitting to being in pain for some reason.

Then he said he would need to speak to her consultant, but was certain that she needed a scan. So we waited around for a while. Then he got back to us and said that they couldn't arrange a scan until tomorrow so could we come back. On the way home I had a call to say we had to come in Thursday instead.

So, still no answers. We really don't know what is going on.

I have two theories.

1. The muscles are too week to hold her head up straight and that's what is making her lean. Perhaps if they can strengthen her muscles then she will be recovered.
I worry that maybe her muscles were lax in the first time and that's why the bones subluxed. In which case there may not be a way to strengthen them. I'm not sure what the answer would be if that was the case.

2. Her joints are starting to sublux again. In which case then they will need to find another way to fix her, if that's possible. It also means the last three months of enduring the halo have all been for nothing!
It also brings up the question, why are her joints subluxing all the time?

One thing that the consultant has mentioned in the past is fusion. The joints in her neck would be screwed into place to stop them from moving.

I hope it doesn't come to that, but I do want her fixed.

Pin Wounds

When the halo is applied it is screwed into the skull to keep it in place. There are four pins at the front and four at the back.

This is what the pins look like when the halo is on.

I was worried about what sort of wounds would be left behind. If I'm honest I'm quite pleased because they are not as bad as I expected. 

The wounds are actually quite small. It's hard to tell from the photo but you can see that they are deep. Well, the pins did go straight through to the skull. There is a lot of healing to be done, outside and in, and the scars are bound to be lasting. I'm pretty sure they won't be too noticable though. The ones on the back of her head look slightly bigger somehow, but they will be covered by her hair anyway.

I'll be updating in the future on how the wounds heal.

Six Days Post Halo Removal

I thought I'd give a little update on how Lucy is doing now her halo has been removed.
It feels a little strange, like we have gone back in time. Back to the beginning, when Lucy was first fitted with a collar, when she couldn't eat, sleep or move properly. She's been in so much pain this week it makes my heart bleed for her. Her neck muscles must be so weak, she can barely hold her head up in the collar. If I take it off she's in agony.

It's still early days yet though and I'm hoping and praying for improvement. Currently she can't get in or out of bed alone or turn over in the night. She can't lie down without help. She's having trouble swallowing and is barely eating or drinking. She has bad headaches and the pain in her neck has her grimacing constantly.

She's still not complaining much though. I'm giving her regular painkillers and asking her if she's ok. She told me tonight that it's best when she's in bed. I've given her a big plump pillow which is what the consultant recommended. It gives her neck extra support and she is comfortable....until she needs to turn over.

I gave her a bath. It was wonderful to not have to wrap her up in bin bags first. She could actually sit in the water, although she needed help getting in and out of the bath. I took off her collar to wash her hair but it hurt so much it was a very quick wash. Also, I was wary of her wounds so I had to use baby shampoo, and not rub very hard.

I haven't yet removed the plasters off her forehead wounds, she won't let me. The wounds on the back of her head are looking ok though, nice and clean. Just one is a little bigger than the others, this is the one that gave her the most trouble while the halo was on. She complains that they are sore and itchy, but I've not seen her scratch them. Fingers crossed they will heal quickly.

pin wounds

Today she had another bath. She was a little more relaxed than the first time. I took her collar off for a little longer and she didn't complain so much. I noticed that she is not moving her neck, to turn she moves her shoulders. This is understandable, she's not used her neck for three months, it's bound to take time to work again. A little more worrying was that her head is once again in the cock robin position. she is not holding it straight. I keep reminding her to sit up straight, and hold her head straight, but it must be so hard for her. I just hope that as her muscles get stronger she will be able to hold herself straight again.

The Halo is Removed

On Monday March the 3rd, after exactly thirteen weeks, Lucy had her halo removed.

Daddy took her to the hospital while I got her sister to school. I figured I should just about make it to the hospital in time for her to come out of theatre. Thanks to traffic I was five minutes late, and Lucy wasn't happy with me. Not the best of starts, but she soon forgive me.

The removal was quick, probably only took about 20 minutes with her being under anaesthetic. The pin wounds are clean and look like they will heal quickly and well. I was told that with adults they do not bother with a general anaesthetic to remove an halo, but it's better for children because it's less distressing and less risk of the child moving or trying to move while they are taking it off.

I was surprised to see that Lucy's skin looked fine under where the vest had been all this time. You can't wash under the vest, just wipe with a baby wipe or damp flannel. I thought she might have been marked or wrinkly but she just looked normal.

Lucy woke up hungry and the nurse fetched her some toast and squash, which she devoured. She seemed a little quiet at first, which is understandable, but she was soon her smiley self.
At lunch time we were asked if she would like to go to the playroom as they were having party food for lunch. I got Lucy out of bed and took her to the bathroom before dressing her. It seemed strange putting 'normal' clothes on her again. She has put on weight, so it looks like I'll be shopping again. We walked the length of the ward to the playroom and Lucy chose some food. We sat at the table but she said she felt all wobbly and wanted to go back to her bed. I think she was out of bed a total of fifteen minutes. She did eat and drink a little more though.

The nurse caring for Lucy told us that she just had to have an xray, and drink one more glass of squash and she could be discharged. We went for the xray around 3pm by which time Lucy was feeling a little pain and looking pale. The nurse decided to take her in a wheelchair rather than make her walk. By this time I was getting worried that Lucy just wasn't doing as well as we thought. Her head was floppy and she was sticking her chin out, which is something she does when she's in pain. As usual, when asked if she was ok she gave her usual reply, 'I'm fine'

I have to say at this point that Lucy's nurse this day was really brilliant, she was so attentive and told us what was going on all the time. Despite being an incredibly busy day she never left us for more than half an hour and listened to everything we said. So when I told her I was worried that Lucy wasn't acting like herself, she actually listened to me.

The Doctor came around and said Lucy's xray was good and she could go home. He said she should be sitting up though, and not in bed anymore. So I took her out of bed and she sat in the chair watching some tv. Then her nurse came to take her candula out and Lucy started vomiting, everywhere, tons of it. She was crying and complaining of headache, not like Lucy to complain at all so she must have been feeling really rough. The nurse said to put her back in bed and we were to delay going home for a couple of hours at least.

Thankfully, Lucy wasn't sick again, and after a dose of medicine her headache cleared up and she regained some colour. She was refusing to eat anything, scared of being sick again. The nurse said she'd be happy if she just kept a cup of squash down.

At 7pm Lucy had perked up a little, she'd kept her squash down and was talking to me again. The Dr came and said it was ok for her to go home, so the nurse finished the paperwork and we got ready and left to spend the night in our own beds.

As we were leaving the ward, literally just about to go through the door, Lucy's consultant was just coming in and he saw Lucy and said 'no, no, no' My heart sank, I thought he meant he wanted her to stay in. He took off her coat and then the collar and carefully straightened her neck before putting the collar back on. Her neck flopped again. He said 'the xrays were good, her bones are straight, but they will come out of place again if she can't keep her neck straight. The collar she has is not strong enough to hold her neck straight, and Lucy's tendons are not strong enough. I'm not sure what is going to happen, but we have to keep telling her to straighten up and keep our fingers crossed that we can buld up strength in her neck to hold her head up again. She can't start physio for two weeks as it's too risky, so it's going to be down to us and Lucy to try and keep her neck in place.

We have been referred to a rhuematologist for Lucy's hypermobility. I want to know if it's her loose tendons that caused the slipped discs in the first place. I also want to know if it can be prevented from happening again. My biggest fear now is that it can't be prevented and Lucy has what is known as cranial instability...i.e. her neck isn't strong enough to hold her head. Only time, and the doctors, will be able to tell.

Is it ironic that the hospital uses zebra wristbands?

12 weeks, but still one more to go!

Well Lucy reached the 12 week mark of halo wearing but she's not having it taken off until next Monday. The good news is, this is definite, she had the first theatre spot booked for Monday morning.

Apparently, taking off the halo is not as bad as putting it on, phew. However, it is a long and uncomfortable process and in the case of children they prefer to do under a general anaesthetic. Lucy is fine with this, she doesn't like having a general anaesthetic, but who does? She is happy, however, that she will wake up without the halo. We are all really looking forward to it coming off. I'm looking forward to a cuddle with my girl.

We've just finished a week of half term here. This means Lucy has had her brother and sister around to keep her company. We tried to get out of the house and do some fun stuff, but we were limited. First up was a tript to the cinema on Saturday morning. We were there for the first showing at 10am and there were only three other families in the theatre. We watched Monsters University and all really enjoyed it. I wanted to go home for lunch, I do feel uncomfortable eating out with Lucy. Her dad says I'm being stupid, but in reality it can't be nice if you have to sit and eat your food opposite a child with a halo screwed into her skull, can it? I just remember my feelings when I first saw her in it, I felt sick. We can't forget that we are used to seeing it and it doesn't bother us anymore, for others it's more distressing.

I didn't win my argument and we went to Mc Donalds. We did, however, manage to find a quiet table right at the back of the restaurant. Yesterday we all had lunch in the hospital restaurant, I felt much more comfortable there!

Then on Tuesday we went to Toys R Us. This is a trip I've been promising the kids for a long time. They have been missing out on sweets and treats and saving up the money for a special treat. They managed to save £25 so I made it up to £45 so they could have £15 each. I was a little worried because there is so much in Toys R Us, and such a lot of expensive stuff. I really thought I'd have trouble on my hands as they rushed around the shop wanting everything in sight. It wasn't like that though, they were really good. The girls both wanted My Little Pony toys and Lucy really wanted the wedding castle. It came with two ponies, so I suggested that I bought it between them as it was £30. They agreed and were really happy with the idea.

We had to get to the shops by bus and again we had lots of stares, but also plenty of questions. I really prefer it when people ask what's wrong with her instead of just staring. Of course, after three months it's getting a little tiring explaining it over and over, but I'm still glad that we've been asked.

We didn't get to go out again. Lucy does find it really tiring, and we end up having very disturbed nights as her body catches up with the exercise she has taken. Thank heavens for Junior Ibuprofen and wheat bags, it's the best way to stop her pain.

She's had a lot of pain in her neck too which has been very worrying. We even had an impromptu visit to the hospital at one point when her screw came loose and I found blood in her hair. It was ok though, soon sorted. The pain seems to have eased in the last week though, so fingers crossed everything will be ok when the halo is taken off.

Just one more week to go...YAY!!

Moving Forward

We had another hospital appointment today. It's amazing how quickly you become familiar with a hospital, well I say quickly, we've been going there for nearly six months now! Lucy has her appointments on the ward where she stayed, now as soon as we go in the nurses and helpers all know who she is.

Today we saw one of our favourite consultants. I know you shouldn't have favourites, they all do a very important job. However, there is always one that seems to listen more, take more interest and remember things better. This doctor has promised to get us a referral to a rhuematologist so we can find out what type of hypermobility she has and get a proper diagnosis. I know that in the long term the actual diagnosis is not relevent, but it will give us some answers and allow us to find the right support groups. There is no cure, no real treatment, all we can do is manage the symptoms. Of course, with a diagnosis it will mean that if Lucy has problems in the future the doctors will know where to begin. It took a long time for them to take us seriously this time, it was as if they didn't really believe that Lucy had anything but a crick in her neck at first.

Today's appointment went well. There was not much tightening to be done which pleased Lucy. She has been complaining for a couple of days of a pain in her groin area. She told the doctor and he examined her. I didn't think he would because I thought the pain was nothing to do with her neck. However, it turns out that it's possible for her lymph nodes to swell, which could be connected to the lymph nodes in her neck. She could also have pain there because of the restriction of the vest. People see the halo and think that it looks uncomfortable, but the vest is just as bad. It is fixed tight around the abdomen and can be tight under armpits too. If it gets too bad then the doctor (and only the doctor) can release it a little. Anyway, Lucy is ok at the moment, we just need to keep an eye on her and get in touch with the hospital if it gets worse, or doesn't get any better.

people don't realise that the vest is uncomfortable too.

Next step is a CT scan in a couple of weeks time. Then if all is well they will take away the halo. I asked about the procedure for taking the halo off. Normally, for adults they just take it off with a topical anaesthetic, but it does take a long time and can be distressing. For children, they prefer to give them a general anaesthetic. So Lucy will go to sleep and wake up halo free. We can't wait now.

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!

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.