After July 2004 Fi's spine deteriorated rapidly moving from a 52-degree to 68-degree scoliotic curve. The decision was made to correct the curve and prevent further deterioration by inserting metal rods from her neck to her hips.
When Fiona was admitted to Queen's Medical Centre in Nottongham for the spinal surgery, details of Fi's progress were posted regularly on this site and those entries can be found in the main previous updates section.
Now Fiona has been admitted to the Spinal Injuries Unit in Sheffield for more detailed assessment of her progress and hopefully some neuro-rehabilitation, and once again updates are being posted regularly and can be read here.
17/01/2006 15:33
Hi!
Finally a January update! Since I last wrote I have had several hospital appointments and lots of little things have been happening.
The spinal surgeon has written me up for another 4 spinal injections - 2 in L5 and 2 in my sacro-illiac joints (I had 3 put in at the end of last year L4 and L5 - but they haven't helped with the pain, so they will be taking me back to theatre to put more in). I also have to have another full spine MRI - to check the discs at the base of my spine and to look at the area of spinal cord damage. Apparently further surgery might help to stabilise my spine and to stop the pain but it is major and difficult surgery and having it will mean I may never be able to walk again...AAAGH why does it have to be so complicated??
To help me further understand the state of my spine, my prognosis and whether further surgery is the right thing; I have decided to consult one of the leading spinal surgeons in the country. He works in Bristol and was featured in the 'Your Life In Their Hands' series on BBC One. I am seeing him on the 6th of Feb so will keep you posted. All I can say is he better be good - £225 for the basic consultation - I nearly died when they told me the cost! It's so much money, but I need an independent opinion that I can really trust so I think I am doing the right thing.
Last week I saw an Occupational Therapist who looked at my hands and legs. She is going to provide me with some special splints to try and stop my fingers from subluxing (semi-dislocating). She also said that I need splints for both my legs to stretch them out as I have contractures at the back of them from spending so many years in a wheelchair. This will all be done next week - I think I will hate the splints but I have to try and wear them.
Today I saw my endocrinologist - I am still struggling with energy levels - this may because of all the drugs they have me on to control the nerve and back pain, or it may be because I am not being given enough steroid replacement - I can't make my own cortisol. To sort this out I have to go back into hospital for a day of intensive blood tests. I also need to learn how to give myself an injection of cortisol in case I have an accident or get very sick. I am waiting for the appointment for this to come through and hope it will be soon as it will then be another thing out of the way.
A positive is that physio is going well and I can now stand up on my own, with confidence, between parallel bars. I have agreed a plan of therapy which includes working on my shoulders which have become very weak and are therefore very easy for me to dislocate. We are also going to try and work on my abdominal muscles and to improve what little leg movement I have. I am still waiting for my re-referral to hydrotherapy to come through.
So that's it. My first 2 weeks in January have been packed with hospital appointments -But the news is mixed and I am still moving forwards. I refuse to think about the negative side of things at the moment and am very focussed on the progress I will make in intense rehab. People have been immensely kind and supportive and Fi's Fund has now raised almost £6,000 - that's over 25% of the way there - eeeeeh!
Going to end on that high note! Fi
26/12/2005 23:45
I hope you have all had a great Boxing Day. I spent the day with family and although this was very nice and relaxed, I have found it hard to switch off and to stop worrying about things.
I am frightened by the thought that I may need more surgery and I am worried about the building work, because it is such a big job and I so want for it to be right. I am also worried about my mum and dad. My mum because she doesn't look after herself properly and isn't in great health and my dad because he works too hard.
I always thought my dad (who is 76) was continuing to work because he has a passion for medicine, for learning and for teaching. But tonight he said I wasn't to worry about how much all the extra building work was going to cost (I am already in quite a lot of debt and the disabled facilities grant will not cover the cost of all the adaptations needed), because he had lots of money and will help out with the building costs. I didn't really know what to say and before I could thank him properly my dad went on to say that he had been working extra hard this year and has been furiously saving and saving. When I asked why, he said because he is very worried about me and my half sister (who is mentally handicapped).
This suprised and saddened me, and now I feel a whole mix of emotions that I don't know how to sort out in my head. Part of me feels slightly angry and rebellious. I am proud and don't want someone to feel responsible for me. I don't need to be 'taken care of' and I believe that no matter what happens to me I will be alright because I am a fighter and I won't give up on life. Another part of me feels guilty. My dad should be retired, enjoying his life, spending his hard earned money on himself and doing the things he wants to in life. What if one of the main reasons he is still working so hard is that he is worried about me not being able to look after myself in the future because of my disability? It is such an awful thought. His worry for me is might be making him work himself into an early grave. I feel guilty and sad and like I am a worry and a burden and I don't know how to change this. I don't ask for my dad's financial help with things and even though I've told him that I will always get through life, and he is not to worry about me, he still does. My dad's plan is for his money to go into a special trust so that when he dies anyone in the family who needs help can get it through the appointed trustees. This way no-one gets spoilt and everyone can be looked after according to their need. I agree it is vital that my half sister, who is in a special house with Home Farm Trust, is looked after for the rest of her life. But that is it. I can't see me ever asking for help so he has no need to do this for me - I am not in need of access to a family trust. My dad is not responsible for my health or ability to make my way in the world. I just hate the idea he thinks he needs to work and save for me. I know it is because he cares and loves me, but I see myself as pretty ok. I don't need looking after, really I don't...how can I make him see and believe this?
I can't seem to resolve my thoughts and it has once again turned midnight. I am reminded of a thought that I cannot seem to escape... 'I must try harder'. Have you thought about your New Year's resolutions yet? I have so many thoughts and desires and dreams and goals I don't know where to start! All I know is that whatever I do, I will do with passion and commitment and 110% effort.
As I go to sign off I am left hoping that you are all relaxed and happy, or drunk and oblivious or sound asleep, dreaming sweet dreams rather than worrying about life! I am about to try and join those of you who fall into that last category....Fi
25/12/2005 21:00
HAPPY CHRISTMAS everyone!
23/12/2005 22:00
Hi,
Its been a long while since I have last written anything on here and I have missed it. In some ways lots, and in some ways little has happened since I last wrote about how I was feeling. I would go into detail, but with Christmas nearly upon us now is not the time! I've had a relatively busy day buying food for when the rest of my family arrive and wrapping up presants. Its only 10 o'clock but I am shattered so I will sign off here...promise to wirte properly soon...sleep well. Fi
22/12/2005 23:00
Fiona has had a very bad day for pain - her back has hurt her non-stop all day. This morning she went into her work and met with some of the people she works with for lunch and a chat. In the afternoon her Mum arrived from London and they both headed to Loughborough Town Centre to do some Christmas shopping and to pick up some food for the evening when Sarah, one of Fiona's friends, came around for some food and drinks.
Fiona hasn't really felt up to writing about the time she spent in Sheffield yet. She knows that when she does it will stir up a lot of emotions and feelings which she doesn't want to go through quite yet. She promises that she will do it as soon as she feels up to it and it will appear up on here as soon as she does.
21/12/2005 22:29
Fiona is back home now, very tired and very sore. She arrived home just after 16:30, went straight to sleep and didn't wake up until 19:45. She is now slowly reading her way through the many e-mails she has recieved while she was in hospital so if you are expecting a reply from her please bear with her, I'm sure she'll get there in the end.
Tomorrow Fiona has said she will write a more personal update herself about how Sheffield went and how she is feeling about everything. Tonight though she just wants to enjoy being home again.
20/12/2005 18:30
Today Fiona has made her best attempt at standing unaided yet! Her physio was no where near her when she did it, which shows how much she has come along in the last week. The physio has captured it on video for Fiona, so it will appear on here once Fiona gets home.
Tomorrow Fiona has got one last physio session in the morning and then in the afternoon she will be coming home, something she is looking forward to very much!
19/12/2005 18:30
Fiona has returned from her afternoon physio session feeling rather frustrated. The physios are very happy with the progress that she has made, as is Fiona, but they do not seem to want to push her any further. They are suggesting that Fiona should leave the spinal injuries unit happy with what has happened (which she is) and then just get on with her life rather than pushing herself harder and further at future physio sessions (which she is certainly not happy about). They feel that any further nerve recovery will happen regardless of whether Fiona does more physio or not so there isn't much point in doing anymore. Those who know Fiona will realise that this is not her at all!!! Fiona is not expecting miracles, she realises that things take time and she needs to exercise patience - but all the same she wants to know what she should be aiming for and concentrating on to accelerate her recovery and push her to new limits.
Tomorrow is the last day that she will get any physio time and so she has put together a long list of questions she has for her physios and doctors at the spinal injuries unit. She is asking them to put together a programme of physiotherapy that she can bring back to her physios here in Leicestershire for them to follow (which is something her physios at Loughborough General asked her to do). She has also got a lot of questions about how her back is doing and what further treatment and alterations to her medications may be needed to aid her recovery. The time she has spent in the spinal injuries unit has helped her to achieve some new goals (like managing to stand unaided) but it has also revealed a few weak areas for Fiona and things which she needs to work on to get further (her leg muscles are very tight for instance).
After spending the past week and a half in the spinal injuries unit, Fiona now realises how much of a difference there is between an NHS run facility like this and a private rehabilitation centre like the one she is hoping to spend some time at next year. Here they have very conservative goals and don't really have the time or inclination to really push you to your limits and stretch you as far as you can go. At a private rehabilitation centre like Physability they are much more proactive in the work they do with you, designing a special programme of work especially for you and really stretching you and constantly reassessing where you are and where you are going. A lot of the difference between the type of physio offered by the NHS versus the type of physio offered by private centres like Physability can be explained by the massive difference in cost, but still it would be nice to be pushed harder and really encouraged to work hard to reach new goals and achievements.
Fingers crossed that tomorrow will bring a lot more for Fiona in the way of further information about her current condition and what she can expect and aim for in the future. Then it'll be Wednesday and time for Fiona to rejoin the real world and come back home to Quorn - something I know she is looking forward to greatly.
18/12/2005 12:45
First of all an apology for the lack of updates yesterday, you'll see why in a minute...
On Saturday Fiona escaped the hospital for the afternoon and evening and went to Meadowhall with Alec to do some Christmas shopping and to see Harry Potter and the Goblet of Fire. Both Fiona and Alec really enjoyed the day and it was nice to get some fresh air and just do normal things again rather than the whole day revolving around physio, OT and meal times. We spent quite a bit of the afternoon looking around shoe shops for some boots which would fit Fiona. In the end we found a lovely pair of childrens boots in a size four which fitted Fiona and looked really cute. Unfortunately the long time spent sitting took its toll on Fiona's back and she was very sore by the end of the day.
Alec also took all the get well messages, letters and cards which had arrived for Fiona while she's been in Sheffield for her to look at. The cheery messages and wishes of good will really cheered Fiona up and she is grateful to everyone who has been in touch.
Fiona now can't wait until Wednesday when she will be discharged from Sheffield. She has found her time there very useful, not only for the assessments and physio but also because she's managed to get pretty much all her Christmas cards done inbetween sessions. It is not home though, and she has really missed her friends and family while she's been up there. Sheffield has helped Fiona to see what she can and can't do right now and where she needs to be aiming and concentrating in the coming months. It has also been a sad time in some respects - finding out more about how her whole body has been affected by the surgery and the longterm effects this will have upon her recovery. Hopefully though, Fiona will overcome all the new limitations and barriers, and will continue to soar to new heights not previously expected nor hoped of her.
16/12/2005 12:00
This morning Fiona managed to get from sitting, to standing in the parallel bars and then back into a sitting position all by herself. Her physios were on hand in case anything went wrong but nothing did and so they were relegated to just watching!Although she has only done it in the parallel bars so far, she hopes that this afternoon she will be able to progress to standing unaided in her standing frame. When she manages this, it means that she will be able to do standing therapy at home whenever she likes, rather than having to rely on others being there to help her up and down.
15/12/2005 19:20
Fiona spent this morning in Occupational Therapy practising car transfers. It went alright, but there was no way Fiona could lift her current wheelchair into the car herself - even with the help of two members of staff they only just managed it. This is something that Fiona already knew really and it is one of the reasons that Fi's Fund was set up. Thanks to fundraising by Croft Car Boot Sale, and in particular their organiser David Freer, Fiona will be getting a new wheelchair, which she will be able to lift into her car herself, very soon.
This afternoon Fiona has x-rays taken of her back, and so missed the afternoon's physio session. The doctors have not had chance to study the x-rays and pass the results back to Fiona yet so she is still in the dark with regard to the state of the bottom joint in her spine. It is for this reason, amongst others, that the doctors have decided to keep Fiona in until next Wednesday. She would have liked to have come home sooner so that she'd have longer to do some Christmas shopping but she doesn't feel that she can really pass up the chance to get more physio and the chance for further assessment by the specialists in Sheffield.
14/12/2005 20:25
Today has been very 'swings and roundabouts'. This morning Fiona was on an emotional high with the new goals set by her physios and the big step forwards in what she could do. This afternoon though has not seen such a large increase and it has hit Fiona very hard both emotionally and physically. She managed to stand a few more times, but still needed a little help from the physio. The effort of standing has drained her of all her energy and when she got back from physio this afternoon she went to sleep for a few hours.
When Fiona stands up on her own like this she has to lock the knee joints of her calipers before she starts. This means that she is going from sitting to standing, using just her arms, with her legs locked straight out. Give this a try yourself. I don't know about you but I find this hard and I have fairly strong upper and lower body strength so it's understandable that Fiona finds this hard and it tires her out so quickly. The strain of standing like this is also causing her quite a lot of discomfort in her back. As a result the doctors are going to take some more x-rays of her back to see if there is any damage to the bottom joint in her back where the rodding stops. This is where the majority of the pain has been radiating from in the last few months and Fiona is worried that as her back is roded straight it is putting all the strain on this bottom joint and possibly causing further damage. Hopefully tomorrow's x-rays should shed some more light on this.
Some more information about the effects of the nerve damage in Fiona's spine has come to light this afternoon too. The muscles on both the left and right sides of Fiona's abdomen have been effected by the nerve damage but one side is weaker than the other. Weak abdominal muscles can have a number of effects on the body, from issues such as asymmetric muscle-tone to reduced lower body strength and problems with stability. Only time will tell how much this will affect Fiona but hopefully it will not stop her from achieving her goals.
14/12/2005 12:00
This morning has been a much better one for Fiona. The physios have set her some new goals - and she is already making excellent progress on them. They have said that they want her to be able to stand-up, lock the knee joints on her callipers and then sit down again on her own. This means that she will need to work hard on building her upper body strength so that she can pull herself up using her arms. They are starting her on parallel bars but hope to be able to progress to using her standing frame to lever herself up too. This will mean that Fiona will be able to go from her wheelchair into a stable standing position and then back again completely independently.
Already she has made an impressive start on this by standing with just a little help from her physio. At the moment this is taking a lot of her strength and energy but she is confident that she will manage to do it all very soon and so make her physios think of some new goals for her to aim for.
She is also wearing her callipers much more so that the physios can see their effect on her legs, and in particular on her skin. Hopefully she will be able to wear the callipers for extended periods of time and so once she gets the new, low-profile callipers she is aiming to get as part of her rehabilitation, be able to wear them underneath her trousers all day without any problems developing.
Keep your eyes on the site for more updates on Fiona's progress toward her physio's new goals later today hopefully!
13/12/2005 16:00
I think the word "gutted" goes some way to explaining how Fiona feels at the moment. Unfortunately she wasn't able to walk in the parallel bars this afternoon. We knew it would be a long shot, but Fiona being Fiona - "Failure wasn't an option I even considered". The physios are either unable or unwilling to say for definite right now whether or not Fiona will be able to walk in the future but they are not expecting her to walk before the end of this week. I'm sure that Fiona will be pushing herself and the physios as hard as possible throughout the rest of this week, and so if there's even the slightest chance of it happening, she'll do her best to achieve it. Right now though she doesn't really want to think or talk about it, rather just get on with life and other things. It's another setback for Fiona but one I'm sure she'll bounce back from and push herself harder to beat in the future.
13/12/2005 12:00
Well there's been good news and bad news this morning, so I'll get the bad news out of the way first...
Fiona has been assessed to determine the extent of the damage she suffered to her spine during the surgery earlier this year. Unfortunately it turns out that rather than the nerve damage being around the T12/L1 joint as she was told, she has actually sustained nerve damage around T6/T7. This is much higher than expected and means that the hypersensitivity across her shoulder blades and the paralysis of her chest is going to be permanent. This could also explain the weakness and reduction in movement of her legs. Fiona is hoping to get some more information from the doctors about the effects of this damage and what she can hope for in the future. This has understandably hit Fiona quite hard and left her thinking about what she has been through and what is still to come.
The good news is that this afternoon the physios are going to put Fiona in the parallel bars and see if she can take her first steps!!! If she manages to take them it will be a massive boost to her self-confidence and her recovery. I'm sure that everyone out there is thinking of Fiona and wishing her all the best in her attempt. There will be an update about how her afternoon goes as soon as possible.
12/12/2005 16:00
Fiona has arrived safe and well at Sheffield Northern General's Spinal Injuries Unit and has just been admitted onto the ward. She is there for more detailed assessment of her progress and hopefully some neuro-rehabilitation.
She asks for people not to send flowers or cards as in her words, "I am not sick - they are just trying to sort my back out a bit more!"
We don't know how long they will keep her for, but updates should be posted here so please check back regularly.
Contact Fiona at fiona@dare-to-dream.co.uk for more information about this site.
© Copyright Fiona Neale 2007.