Moving forward… could this be it??

 

 

In August 2017, I was asked to have another Intracranial Headbolt in order to see what my pressure was doing. I really didn’t want to do this as you can imagine how uncomfortable it is, having a catheter inserted into your brain.  But – I agreed as it was the only way to keep things moving and rule things out.  It was put in under local anaesthetic, with heavy sedation but taken out on the ward.  I won’t lie to you when I say that that part hurt!  Unfortunately, it hadn’t sealed the next day when I sneezed – you can see the lump on my forehead where the brain fluid accumulated under my skin.  On alerting the doctors, they reassured me after a quick scan that all was well and that it would reabsorb – which it did.  It was a bit scary at first though but showed very little after having it in for 48 hours…  just some unexpected high spikes of pressure.

It’s May 2018 now (8.5 years since this all started) and things are moving again with the focus on the large jugular vein in my head…

I have now been seeing both my neurologist (waiting for a decision to re-patch my dura or not and waiting to have a new DSM scan to look for any leaks) and my Neurosurgeon (investigating anything else he could think of to rule out and explain my symptoms) at Royal Stoke for a year now, ever since I was told I had a tumour, that now looks like a very enlarged jugular vein. No one can work me out…as although I look fine if you see me around and about, behind closed doors is another story…

I still have a bad, increasing daily headache, some foods make me spazzy to the point of needing help walking, sounds and lights make me jerky, spazzy or put me in a seizure, being upright affects me after a few hours and any exercise affects me to the point of jelly-like weak legs that make me look drunk. I still can’t shop for long, walk far, dance, sing, go to the cinema, go to a party, go to a wedding reception, etc, without limiting time extensively or just leaving. Flying is traumatic… I do it, but boy, does it hurt and that’s without discussing the embarrassment of non-verbal communication and odd ‘camel-like’ noises that erupt from my mouth – embarrassing for me and all around!

So – what to do…

I still want to work – I love it and it gets me up in the morning. If I spent all day flat or head down, I’d be fine – but it’s hard to teach like that! I will do anything I can to still go to work and have now built a website to promote my own business for English Consultancy. I am a part-time teacher-trainer and fit any training in with my limited diary where flat-time must be scheduled in. I’m so very grateful for my understanding family and colleagues who work with me on this. My symptoms have increased since the new year and I’ve increased any medication to counteract it wherever I can.

However, I think I may have been given a life-line!! Maybe. Possibly. We’re cautiously optimistic after 8.5 years but the optimism is there…

Last December, I was contacted by a doctor in Cambridge asking if I would be interested in seeing him as he had found the scans I sent there when they were investigating if I had a tumour or not. He said he thought he may be able to help me, but I would need some diagnostic tests first. Well, after making quite a nuisance of myself trying to get an appointment on the NHS and still failing after 4 months, I finally agreed to use some of the funding left-over from 2014 to start the ball rolling again. Last Saturday we went to Cambridge and met a wonderfully understanding doctor who totally understood why all my tests came back as clear. Every one. He has a theory and has already tested it to good effect. Here’s what he thinks…

An increase in pressure in the veins in my head, causes an increase in cerebral spinal fluid (csf) pressure. This in turn makes me feel poorly as the difference between my high and low pressures is very small (7-11). As the pressure increases, it can cause the cysts to rupture or leak csf fluid – sending me into low pressure – like a seesaw!! Blood patching helps temporarily as I pop them out again after a while. As I have a very thin vein on one side of my head, and an extremely large one (with a narrowing too) on the other, the veins may increase in pressure as a result of any trigger. This makes me poorly.

His theory is to open up the thin veins with a stent, maybe needing to cut away bone either side of it to allow room for it to expand. This should reduce any pressure that may arise and therefore keep the csf pressure more stable. This could give my dura/cysts the chance to heal themselves without being ‘burst’.

I have to book a venous catheter ‘pressure’ test next and after that he’ll decide on the best course of action. I really want to try the surgery as soon as possible now, as I’ve had enough of the stresses and pain of this for me and my family and am now excited again at the prospect of being helped – either partially or totally. Anything would be a bonus!

We’re preparing for surgery. The NHS list is long, and I can wait for it. But – I want it done as soon as possible – in the summer holidays if I can: then it won’t affect my job. The funds we raised have been used up now with the CT scan & catheter study so it’s likely we will try & fund raise again to meet the timescales. We may need to borrow the funds to get it done. I don’t know the costs until after the next tests but will know soon enough. My wonderful friends & colleagues at school have already started by planning to fund raise for me by completing a 5k fun run. I was humbled and amazed at how quickly they got this organised…I do know how lucky I am to work with such a wonderful group of people. I really do.

If this surgery works, it’ll open up a whole new avenue of investigation towards csf leaking and will hopefully support others with similar problems. I will make it my business to raise awareness for others at Royal Stoke and other hospitals and get others helped in a more-timely manner.

Here’s to the next few months!!

Sleep tight.

C x

If you would like to donate – please click on this link – Justgiving  xx

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Head scans… but nothing to report?

Head scan – what do the results mean? Does anybody know?? Anyone???

I have suspected a brain fluid head leak for a long time now. It could be explained by the constant problem of headaches that I have and the occasional ‘dripping’ of clear fluid from my nose. So, after discussing this, my neurologist ordered a CT of my skull base and MRI of my head. This was in March. He was in agreement that I send the scans to a specialist in USA to get their opinion and go from there.
Royal Stoke reported the scans as clear.
But Colorado didn’t. They emailed me and asked if they could Skype me as they needed to talk to me. Of course, I agreed. Dr Hepworth informed me that he had found a crevice/a crack in the bone in my head that was causing a brain fluid leak. He said the bony area by my left ear was full of fluid, possibly brain fluid. And – that I had a mass in my head. A mass. What do you say to that?? I asked what to do next and he asked me to order further scans to clarify. I was pleased they’d found a crack as that meant it could be fixed! Finally! I tried to ignore the ‘mass’ part.
Well, to cut a very long and frustratingly worrying story short, my Stoke neuro ordered the further scans. It didn’t take long, but felt like months… I was also referred to a neurosurgeon by my gp.
The neurosurgeon was extremely kind and sympathetic and promised he would get another opinion on the original scans as he said they weren’t that clear. He said he’d get back to me in 5 days.
He didn’t. I rang. He didn’t reply. I rang again. He wasn’t getting another opinion till the next day. I waited. No call. No email. I waited the next day. No call, no email. Finally I received a letter saying nothing was seen and that it would be wise to start testing the fluid again. Not again…. please no – not more fluid collection tests!
I rang. He had gone on leave for 2 weeks and his secretary couldn’t comment…
What would you do? Talked about being churned up! What made it worse was receiving an email from Stoke saying my new scans were also clear – no crack, no tumour; but almost at the same time receiving one from Colorado saying that they were most certainly not clear!! The crack was there and clear evidence of a tumour. They had both had teams of experts looking at them. Two completely differing views. Complete opposites. Both absolutely adamant that they were right. Colorado even sent 5 annotated screenshots of my scans to explain them… and a Skype message stating they were concerned that Stoke couldn’t see it. He asked me to show them the screenshots.
I was now getting more and more confused and I decided to visit my gp for advice.
Immediately, she could see my dilemma and referred me for a second opinion at Addenbrookes, Cambridge.
And that’s as far as the story goes… that was today – it only took a week – but they couldn’t see it either. Just an enlarged, dilated jugular. None of the screenshots were agreed with either.
Now what? What would you do? Colorado want me to go out there to them to be fixed. They know it is a huge commitment and have tried to refer me to a surgeon in Milan (not heard yet), but they are convinced it is the cause of all my troubles. (Tumour causing bone erosion, causing a slow brain fluid leak).
My Stoke neurologist is keeping in contact with me when he can, and is advising me that I haven’t got a tumour, but they’ve referred me to Birmingham for a second opinion – to reassure me. (In the meantime, my gp had already referred me to Cambridge).
I still have a headache every day, I struggle at the weekends after working with upright time and walking (but I LOVE my job), I spasm and body jerk and still seizure 1-2 times a month. Our lives are severely restricted as a family as I tend to put limits on everything we do. But we plod on…
I’m tired tonight and confused. But tomorrow is another day.
Thank you for asking about me and for all your concerns.
It means a lot!
Sweet dreams to you all. C x

Multiple Patching Round Two

Multiple Patching Round Two!
Now I’ve had a total of 35 with the extra 12 done today. It’s all done. All done and I’m so glad and so, so grateful for this chance to be on the mend again. I’m now hoping for some longer days upright!!

I haven’t been too good since the scans that were too poor to use. So I’ve been waiting, spasming, waiting….
How long would you wait for someone to return your phone call? I think I made a bit of a pest of myself this last couple of weeks – if I were in the receiving end I think I may put the answer phone on too.
They had no answers for me. Sent home with two new holes in my back to wait until next week to start all over again. But it wasn’t next week and I didn’t know what was happening or when. I had some children booked in for lessons and I was starting some tutoring the following week, I’d just been accepted back as an Associate Teaching Consultant – all of which I love- so I really needed some answers. The added problem was the additional pain, pressure and loss of coherent speech the longer I was upright. At my age, losing the ability to walk as I should be able to (without having imbibed even a tiny amount of alcohol) as the day wore on, instead of someone of approximately 40 years older, does not feel good. The dear old lady who is 89 years old managed to overtake me outside when I tried to get some fresh air. Thank goodness for the keen eye of my local friend who just happened to spot me struggling to get home. She stopped her car, ran down to meet me and guided me straight to my settee where I spasmed and jerked until it fizzled out. Oh, it hurt. But, how kind was she? I know her well and she has visited me in hospital during my worst times, so none of this was a shock – but she cared and she helped and was so lovely. Thank you again. I would’ve made it home eventually – but the relief came so much sooner with your help. I was foolish – I thought I could do it. I only wanted some fresh air & thought I’d timed it with the arrival home of my family. But I misjudged my abilities to walk with the extra leaking. Lesson learned.

It wasn’t next week. Or the week after. It was the following week. 25 days to be precise – and I’m finally able to say that I’ve been patched again. This week was not a good one with things not going to plan and I got caught out on Wednesday when I was told that the Ward knew nothing of my imminent arrival on Friday. I had had enough. I was on my own all day just waiting for a phone call back to confirm and I let it get to me. I know I shouldn’t have but I couldn’t help feeling out of sight out of mind again and that all the preparations at home for Friday would be a waste and I’d still not be able to do what I wanted – work and be upright for longer without head pain or meds. But, I made another nuisance of myself ringing anyone I could get hold of and was finally told to ring the next day instead. It was finally sorted. I came in last night and was taken down this morning. I had the same skilled, wonderful doctor who was willing to repeat the multiple patches in the same places. He is so kind and understanding and talked me through it all the way.
I won’t say it didn’t hurt as it did! But it’s done and I’m so pleased I’ve had the chance to be mended again. Twelve needles placed in my back and blood inserted into each one. It took about an hour in total and I was awake throughout due to being able to respond when a nerve was touched. I’ve spend nearly six hours on a thirty degree head down tilt and I have just been able to get up.
I should be home tomorrow to be able to take it easy & let it all recover!

I have some good news for my csf leaker friends in the UK. I was told today that they think they’ve figured out the problem with the scans that I had that were too poor to read. That means that they’ll be called in for scanning soon as the doctors can try again. Some have had over a 12 month wait and are bed bound for 22 hours out of 24 every single day. This is what I was hoping for. Now the doctors completed the treatment twice on me, others can now hopefully be treated too. This could and should be life changing. I can feel a celebration coming on!!

Thank you to everyone who has continued to support me all this time. It’s sometimes very hard to explain what is going on and writing it down helps me and my family keep people in touch. I don’t think anyone realises how much this large network of support helps – both on Facebook groups, WordPress or at home & work. Thank you to you all.

Sweet dreams from my old ‘bay’ on the Ward 231! Have a great weekend.

Keep smiling! 😄
C ximage

The saga continues…

Cagnes cafe Nice Stones

First of all, good news.  We managed to get away to find the sun!  We travelled to Cagnes sur mer near Nice via the train, travelling all the way south through France, finishing along the coastline.  It was an amazing experience, but also still quite stressful for my poor husband!  He had arms like Popeye when we got home as he carried my suitcase as well as his own – up and down stairs and on and off 5 trains each way! I must have looked so spoilt just following behind him with just my sunhat in my hand and laughing as he tripped up the escalators  in the middle of Paris Nord station!  We felt it was worth it though as we were able to find the sun and our daughter and partner joined us too for a few days! Lovely!  However we were limited by myself, as I could not walk too far and I had a couple of mini seizures whilst actually on the beach.  Luckily my family were able to cover me up and leave me to quietly get on with it. We had plenty of space around us. This usually occurred if I tried to walk too far or went in the sea.  I was watched like a hawk whilst in the sea as previously I had blanked out and just floated on top of the water… none of that this time…. no snorkelling allowed!

Well, the next part of the leaking saga continues! I was asked to go into hospital this week in order to finally have the “state of the art” scan that we have pushing for since December 2014 to look for any leaking areas of my dura.  It is the same scan as I had last year but as it was used as a one off, it had to be approved by the hospital via various committees in order to use it again.  This is because it is using the scanning material off licence as it is to be entered into a person’s intrathecal space, their spinal fluid, via a lumbar puncture injection rather than intravenously.  It took 9 months to be scheduled. There are a number of people also waiting for this scan that I know of personally now and we communicate regularly.  I am the first to have it done in Royal Stoke and any problems can be sorted out by my outcomes. It is essential that this test is carried out and that it works, as so many people are now relying on it to help them live their lives to the full again.  If leaks can be seen using this test, then people will be able to be blood patched in the right areas.  I know people who are at the same level as I was last year, lying flat for 22 out of 24 hours a day, unable to go out, socialise or spend quality time with family.  It can easily lead to depression and loneliness with some people in the  communicating group actually considering suicide (some have committed suicide already).  Some of the constant pain and life altering changes are just too much for some people.  If we can get this right in our hospital then the process can be used in other hospitals and help more and more people.  It’s success is vital.

So I arrived on Monday evening ready to start the scanning in the morning.  At first all went nicely to plan.  I was taken for my lumbar puncture at 9:30am and the scanning material was injected into my spinal fluid.  I was then taken to the MRI scanner.  I wasn’t in as long as I usually was, only about half an hour instead of an hour, so I wasn’t surprised when they told me something was wrong.  The images were poor quality and so they decided it would be a good idea to add more of the scanning material and try again.  I was happy to start all over again as there was no point doing this if the images were not clear – there was no way they would be able to detect a leak. So, off again to the radiology department to be lumbar punctured again and more gadolinium inserted.  Back again to the MRI where I was in for a longer time and I was feeling more optimistic.

However, I was met by both the neuroradiologist and my neurologist as they had looked at the images as they were no better.  We discussed what to do and decided to have another MRI scan in 6 hours to see if they were any better.  I was taken back to the ward where I waited and slept before I was taken down again.  This scan took a full hour – it gets so difficult not to move!  I had ear plugs and earphones on so it wasn’t as loud as it could have been.  I then had to wait until the next morning to see what the scans showed.  I went into a huge seizure in the evening that lasted around 10 minutes so I was obviously thinking that the new holes were now leaking causing me further problems.

In the morning I had a second lesser seizure after breakfast and was now wondering if I was going to have to stay in. When my lovely neurologist visited me, the news was not good.  The scans were still of a poor quality – not as expected at all and no one could understand why.  The same scanner, the same neuroradiologist and the same patient were used as last year so the only difference was the gadolinium.  We came to the conclusion that it could be the batch of gadolinium that may be at fault.  What a disappointment for everyone.  The doctors were so upset with the outcome, as was I, it meant that we have to start all over again.  I decided to relax at home to recover from the lumbar puncture and possible leaks and start again as soon as possible.  I’m now home and recovering quietly waiting to follow new instructions next week, hopefully trying again with a new batch of gadolinium.

Moving on.  We will get there.  We have to get there.  We will!

Sweet dreams

C x

Summer’s wait….

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Thank you to everyone who is still taking an interest in what is happening in my life. Your endless support is wonderful and I never expected it – not then and not now. But if you’re reading this, I know you are still wanting to know what is going on.

I have spent the whole time since Christmas in a totally priviledged position of teaching just mornings at my wonderful school. My class were wonderful and adjusted to my needs as much as I adjusted to theirs! I was probably the only teacher in the Country who was really sad to see the end of term!! Saying goodbye was a tiny bit easier knowing I am still working one day a week there in September, even teaching some of the same children. The Headteacher who made this possible really doesn’t realise how much this has helped me – both this year and the next. It has helped me survive as I have a purpose that I enjoy. It has also allowed me to begin to pick up on work I was doing previously to becoming poorly too as I was asked to moderate for Key Stage One and Two SATs in June. It was great to be able to do this and I thoroughly enjoyed it. I’m now hoping for more work in the September term.

Well, the intrathecal scan has finally been approved by The Royal Stoke Hospital and so we’re now awaiting scheduling. I started this ball rolling before Christmas. This seems to get more and more difficult. How much time must pass by before anything is done? There are people in the group I am involved in that are flat on their back for 21 out of the 24 hours in the day waiting for this procedure. I have been there and it’s no joke, no life, no pleasure. Another suicide has occurred in the group this week too – it’s just wrong. People are living day in day out with this condition and still doctors don’t take the condition seriously. I know my doctor and neurologist do, but I’m lucky. And I’m still waiting too. I thought I’d be fixed in the holidays…. once scanned I should be able to be patched again – hopefully in the same places and in Royal Stoke Hospital. We’ll wait and see.

People ask me how I am – “You look fine,” “Are you fixed now?”  I wish I could tell the truth but it’s often easier to say I’m managing. Which I am. People care. People are concerned and I’m grateful and humbled. But it’s only my close family who know the truth; I still have to lie flat in the middle of the day, every day and rest and take medication to ease the symptoms. One day I’ll be ok again – I will.

I’m enjoying continuing to work in the mornings – tutoring from home is great as I can lie down in between lessons & sleep at lunchtime! I’m hoping to continue working in the new term – I will do what I can! Hubbard Consultancy is now up and running!!

As for my nose drips – the results were finally found in Burton – they’d been sent to the wrong place. As explained last time, we’re not convinced they were tested correctly.. No one can explain, or wants to explain, what the fluid is. But it’s wrong, we know that much.

Well, here’s to the rest of the Summer holidays and hopefully some sun!  It’s going to be a different term in September for us at home –  all change! One daughter now a teacher and the other off to Uni! Time moves on and we must just move on with it.

Keep smiling!

C x

Sunday, 31st May 2015

  

 Here we go again…. Time for an update. 
It’s been a while since I last posted and things have not changed much, apart from I am starting to have mini seizures much more often now in the evening and I am finding the days even more difficult. If you saw me, you’d think everything was fine. You’d expect me to say that all is ok again and that I can now get back on with my life. Sadly, my family know better. 

I am managing to work in the mornings as the people I work with are wonderful. They have taken over the role of looking out for me as my twin sister is now working at another school. I do have to lie down in the classroom at times, even upside down in the Staff Room if necessary – but they lie down with me so I don’t feel so conspicuous! I can then continue with the rest of the morning before I get myself home & flat again. Recently my “flat time” has been creeping in earlier in the evening and the painkillers I am using have gone up to the maximum level. 

So, I decided to visit my neurologist during half term, by booking a private appointment. He was very kind and was just as frustrated as us with the time it is taking to get the scan passed that I need. It’s the same scan I had before but it now has to be passed many times by many committees – four of them – and three have now been agreed. As we don’t know how long this is going to take, he has decided to try and go along with the same patching as last June and hope it works as it did last time. There is thinking that the patches may have a cumulative effect – it’s worth a try in my view. 

There is a group of four us on a messenger page discussing this progress quite regularly. We are all in the UK, all had treatment already for CSF leaks and are now all under Royal Stoke Hospital for treatment. We are all similar but different- supporting each other with any news we find out about, what could be next for any one of us and how we can help one another. It really does help knowing there are other people out there with similar problems to yourself. 

Another issue that my neurologist is concerned about is the daily watery leakage from my nose. It happens whenever I exert myself in any way, when I bend forward or eat – it can be quite embarrassing! He is concerned as it is a daily occurrence and the fact that it could be CSF leaking needs to ruled out. I have had a CT scan of my cribriform plate to look for cracks in the past but my neurologist is convinced that the scans would not be clear enough.  I have investigated this before but after looking into recent procedures in the USA I am really not convinced that my fluid collections have ever been tested entirely properly. A lady with the same symptoms as myself has had 5 negative tests before finally receiving a positive test this week. Her procedure was so different to mine. She had two tiny pledgets put into the side of each nostril, attached with strings and she could still breathe! I had two tampon like cylinders of cotton pushed into the end of my nose , which protruded out like walrus teeth! As far as I’m aware, the lady in the USA had hers frozen, kept absolutely sterile and then they were tested immediately. Apparently only a couple of drops is needed to detect the essential protein.  I know the ‘walrus teeth’ were definitely not frozen (one had fallen down the toilet and one was found down the bed as it fell out in the middle of the night) and they were taken to Birmingham hospital for testing after a few days. It does make me wonder if this procedure was correct. I’ve heard the protein in CSF has a shelf life of four hours.  I have questioned it and have had the chance to collect the fluid for testing again. I kept it on ice and gave it to the hospital to go via a courier. We never got the results. Apparently they were inconclusive. When I asked if there was a possibility that they had been lost I was given the answer that they supposed they could have been, they didn’t know. Wow. I’m going to investigate this now…. 

On a lighter note, I’ve set up my own business!!! I was approached by my old Consultancy work team to see if I could help them out with any moderating of the Year Two and Year Six SATs tests.  Of course, I was more than happy to. I am currently teaching Year Two anyway so am right in the middle of it.  I love it! So, I start in June – this week. I am hoping to pick up some work in September too and so have applied to become an Associate Consultant. In order to do this though, I have to make a limited company for myself. So – let me introduce you to the newly formed “Hubbard Consultancy Limited”! It is very exciting. Just need some work now. Maybe I can work full days in the Autumn term if I’m patched over the Summer.  

New medication – more medication – to try when the Consultant letter reaches my GP.  This one should help me retain some water to compensate for the loss. We’ll see what happens. It’s only supposed to be short term until the patching. In the meantime, I have my inversion table in the garage – I can lie inverted during the day when I need to – it really helps. Thank you to the Goodships for their kindness in letting me use it for now. I can’t use it in the evenings as I can’t get there – it’s too far to walk, but it really helps if I start to lose the ability to walk or feel nauseous or a really heavy head. Bet you all want one now!! It does go steeper than the photo- it’s just to show you how it is used. 

  

Anyone want some light reading? I found this link in my research. It states that even if a leak is seen at a higher level, patching at that level may not work and to patch lower down. New information comes to light all the time.   

http://spinalcsfleak.org/imaging-findings-in-sih-misleading/

Thank you so much for keeping in touch with me through this journey. When people ask how I am, it makes me feel less alone in this new part of my life where the newness is still apparent even in the medical profession. 

Sweet dreams everyone. 

C x 

Sunday 22nd March

   

   

It’s been a while since I posted and many people are asking me how I am now, so I thought it would be nice to try and get everyone as up to date as possible. I look relatively normal in the day – to the point where people say to me that I look well! I wish people could see into my head! ….this is up until the point where it’s just past lunchtime and my head pain starts to show some outward features. My legs slow down and the world becomes wobbly. My concentration decreases from now on & the only thing to do is to get flat and usually sleep. This buys me some time. I even have to do this now if I feel I need it or not, otherwise the rest of the day will be too painful and I’ll not be able to do anything later on.  The weekends become my catch up time. Unfortunately this can mean that the seizures return and it takes Sunday to recover …. like today. I need to sleep and will have to give in otherwise it’ll just get worse.  
Some of you will know that unfortunately, this is because I have started leaking again. I tried to pretend it wasn’t happening at first, as the first few symptoms, mainly head pain, started way back in October last year. I had an accident at home and landed up back on the Ward in hospital for 24 hours due to constantly repeated seizures every time I lifted my head – or even when I was just lying there. I was extremely grateful that they just stopped the following morning and after a week of rest, I returned to 3 days a week of teaching. 
After a few weeks, I started increasing my medication to get through the day and I found myself having seizures after the 3rd day of working. This then took me the whole weekend to recover. I knew it was time to change. We decided that I would try & work mornings in order that I could rest after dinner time to try & balance out the brain fluid for the afternoons. 
This has worked well up to now. I really love going to work and will manage my time to do just that and only that. It is my priority- I know people say my health should be – and it is -but I would not be the same person without work, being with the children and having all the rewards that teaching brings. I need that outlook on life – that I have a use and that I can still do what I’ve been trained for all my life. Watching the solar eclipse on Friday with the whole school was simply magical. The children were amazed and they were fascinated with the dusky feeling outside and the fact that the situation was so rare. The writing they produced afterwards is what teaching is all about…. That’s why I love the job. Spontaneous learning.  
I was also extremely chuffed to be recently asked to consider some Consultancy type work for the County too. Being recently trained for this with my twin sister was just the best feeling – being able to be a teacher adviser again was something I thought I would never be able to contemplate again. It shows that anything can be achieved, even with weird illness problems! I spent the lunchtime of the course on a duvet in the corner of the training room and also part of the afternoon – but I did it! I’m so glad my sister was with me – not sure if I could have lay there on my own in front of people I didn’t know! 
My twin sister is leaving the school at Easter to work for a different one in the area. She is like my right hand – I work in the classroom right next door to her with the same year group and we can chat through the gap between rooms to check resources, ideas etc. it’s going to be so strange without her. She’s like a part of me and she won’t be there. It’s a change I suppose that I have to get used to and we all have to deal with change. I am very pleased for her and am proud of what she does – she’s a fantastic teacher. I have supported her in what she wants to do and always will. Just saying I will miss her…greatly. 
I need the scan again – the one I had to get special permission for. It is difficult to get as it uses gadolinium off licence into the CSF fluid via a lumbar puncture, so will not be agreed by the hospital without a lot of thought. Luckily, I have heard that this has now been agreed so we can go ahead. I’m sure I will be able to be patched in Royal Stoke hospital this time, not North Carolina. They know what I need, so again, it’s just a waiting game to see what can be done after being scanned. My Consultant is really fighting for our corner as now there are about 8 or 9 of us that we’ve heard of needing this treatment, in order to move forward.  Many of these people are new acquaintances of mine from the CSF site – travelling to the Midlands for support! It’s stopping all of our lives in different ways, but is no better or worse for any one of us. We all have possible leaks with no found site. Some people have asked me why are there so many – we thought it was rare? Well, every 5 in 1,000 people can be affected in one way or another- it’s just not diagnosed well due to the scanning equipment previously available or it is disbelieved or regarded as a migraine.  Hopefully now, this will build an awareness and help people sooner. I’ve had it 5 years now – 4 of those fighting to be believed. This should change. The doctors in Royal Stoke have now worked with USA team with regards to targeted patching on myself, so this is maybe something others could now benefit from sooner rather than later. It certainly did the trick for me! 
I’m not sure if I’m releaking in the same place, new places or if the patched areas have weakened. I just know it’s slow leak (which means I can work in the mornings) and that it’s getting worse week by week. I spasm almost every night now regardless of my day and have started having mini seizures once or twice a week. I will keep going and keep going till I get the patching date. I’m now in full meds & more than I was before in order to stay upright and have sleeping tablets so I can sleep at night; otherwise the head pain takes over for an hour to subside. I hang my head off the side of the bed like batgirl again to get the only relief. 
I’ve heard blood patches can become cumulatively better. I hope so. That’d mean each procedure could be effectively building up to a permanent closure of any gaps. 
Some good news…. My eldest daughter has secured her first teaching post for September. She’s currently training as a teacher undertaking a PGCE Primary Teaching course. I’m so proud of her – as I am of both my girls. They’ve both continued with their education as well as supporting me throughout – something many others would’ve crumpled under – because of the stress and worry. I couldn’t ask for any more from them. I’m sorry that my condition is still affecting my family so much – if I could do anything to stop this, I would. I’m so grateful that they are all so supportive and constantly watching out for me. 
Anyone got one of those puncture repair kits? Might try that next!! 
Here’s to a good week, upright mornings, flat afternoons and less seizures. Here’s to a prompt scan for all of us! My Consultant is a star – without him, I don’t know where I would turn. 
Sweet dreams everyone. C x