Tag Archives: story

Learning Patience: Eighteen Months of Spinal CSF Leak Recovery

“What doesn’t destroy me makes me stronger.”

 – Martin Luther King, Jr.

This timeless quote has certainly been my experience over the past four years or so of having – and then recovering from – a long term spinal CSF leak. Although, to be honest, at times it did feel like I was being ‘destroyed’ through the process. My journey has taken me to immensely dark places of wrestling and torment on so many levels.

It often felt like so much of who I was – at the deepest level – was simply being destroyed.

However, as I slowly recover physically, mentally and spiritually from the trauma of the last four years, I can see more and more how even what felt like ‘destruction’ has actually ultimately made me a more rounded, secure, loving and compassionate person. I have found that some things, and attitudes in my life, needed to be ‘destroyed’ or at least ‘shaken’, so that I could become the person I am now.

I am stronger on so many levels – but the strength comes from a more authentic place.

The strength comes from a deeper acceptance and acknowledgement of my human frailty and weakness. I no longer feel the need to have to ‘muster up’ an outward – or even ‘inner’ – show of strength to look like I ‘have it all together’. Instead, I can rest in my weakness and rely on God’s strength to carry me through the ongoing challenges of life in a more REAL way.

And there are ongoing challenges…

Eighteen months since my fourth high volume (40ml) lumbar epidural blood patch sealed my leak, I am still not back to where I was before my accident in January 2015.

My head, spine and nervous system still do not operate as they once did.

And yet…

Month by month I see more of the new ‘old me’ being restored.

Slowly… gently… patiently… Becky Hill is returning to a ‘fuller and deeper strength’.

But did you notice that I said the ‘NEW ‘old me’?

I had to add in that extra ‘new’ …. because the ‘old me’ doesn’t actually exist anymore in many ways!! And in fact I wouldn’t want to return fully to who I was before my accident anyway. Because there is a ‘new me’ that has emerged from the ‘wilderness cocoon’ I was catapulted into for those years. It is the ‘new me’ that will walk into the future and face whatever comes my way.

It is the ‘new me’ that is better in many ways than the ‘old’

However, the reason I am writing this article is to get into the nitty gritty of my experience of spinal CSF leak recovery. I want to continue to tell my story in the hope that it connects with and helps you, or someone you know, on their own seemingly impossible journey. I want to tell you the REAL tale of what it’s like to walk along such a difficult and desolate road, whilst attempting to keep focusing on the beautiful horizon of hope and redemption.

A new horizon that thankfully, for me, is growing ever closer.

So let’s get back to basics.

What is my life currently like day-to-day, eighteen months into recovery from a nearly three-year spinal fluid leak?

Corrie ten Boom said:

‘Worry does not empty tomorrow of sorrow; but it empties today of strength.’

That has had to be my ongoing ‘mantra’ throughout my illness and recovery. At first, fears for the future and fears of relapse consumed and crippled me. Unsurprisingly, of course, because – until this last blood patch – that had been my very real experience. These fears have reduced so much through a combination of learning to stay focused and thankful on the present, whilst accepting what IS today’s reality, and also seeing the progress that I continued to make day by day. I had to ‘throw myself’ into God’s arms of grace to find the strength to keep moving forward and keep trusting that things would keep improving.

As they currently do!

If you try and fight the slow process of recovery to ‘speed things up’, I found it simply makes you worse! Your body can’t handle the stress of the striving to do more than it can do. You instead have to ‘fight’ from an inner place of strength, peace and acceptance of the way things currently are, whilst being gentle with your body and mind as you trust for better days in the future.

The reality is, my head, spine and nervous system still struggles with hypersensitive reactions to changes in ICP (Intracranial (head/ spinal fluid) pressure). I still seem to have some ‘higher pressure’ issues in my head and spine (as I talk comprehensively about in my year of recovery update). The same old movements and actions still bring a clear reaction. My head, neck and spine fills with pressure, my ears pop and crackle, my cognition (mental processing) gets a little more sluggish, everything feels harder, and I often have to just take some ‘quiet time’ alone to still my head.

This might mean being silent for a bit, sitting down quietly or going for a quiet walk.

But I have to say that this becomes more and more manageable and less and less of a major problem. The adjustments needed are not so dramatic anymore. They are still there, but more subtle. And they thankfully keep improving. Over time you realise you are less aware of symptoms – they are still there but less and less prominent. They seem to impact things that little bit less week by week, month by month.

That’s when you feel like you are recovering more of the ‘old healthier’ you.

Blog learning patience_edited-1

Here are some of my personal ongoing symptoms and the way that I approach managing them. They may not be the same for others, but I share this to help educate other sufferers, their family and friends, and any medical professionals that may be reading this blog. This way, we can all show more understanding and compassion to one another and ourselves.

  • My head can still get very overwhelmed with a lot of things happening at once. It’s the ‘layering’ of things, one on top of another, that causes the biggest issue. Noise especially. My family and I are all natural singers so we love to have music on, and their default can be to sing along (singing can still be more of a challenge for my head). But I really struggle with both the music and others singing simultaneously – especially if there are other noises around too. It becomes a ‘mental overload’ for me, as does trying to think, listen, talk and cook at the same time. I often just can’t ‘compute’ it all as well as I used to. But this is also all improving over time.
  • Multi-tasking is slowly getting a little easier but is still a lot harder than it was before the accident. It’s again a ‘layering’ issue.
  • I can’t rush about, which although frustrating has actually taught me to ‘flow’ through life more calmly, and to be even more organised. I have to keep moving around gently without rushing about. My head and spine can’t take the twists and turns that rushing often brings. Also, moving around and talking a lot at the same time is still very hard. I can focus better if I stay still whilst talking.
  • Speaking for a long time can be hard still, especially if my head is already feeling more hypersensitive, or if I’m walking or moving about at the same time. I can talk for noticeably longer than I used to be able to though, which helps me with relationships in general, as well as with the mentoring and pastoral visits and teaching groups I do with church. I do find once I have talked for a while I often need some ‘quiet time’. My family know to let me be quiet, and I often put my headphones in and go for a walk, or focus on being quiet to still my head.
  • I still spend quite a lot of time being quiet at home doing the housework I can do, looking after my family and cooking. We love having people around for food, or to stay, so we are really enjoying re-discovering this joy of ours. I just have to plan everything well in advance to avoid any last minute stresses. I also love to cook for others who are struggling for any number of reasons (as people did for us when I was at my worst) so I often take food with me on visits to suffering people. I have been able to increase my ‘pastoral visits’ and the church admin that I do from home. I also continue to teach and speak in smaller groups and do a lot of ‘one-to-one’ personal development work with people. I am so very thankful to be able to take on what I can, when I can through our church, and this it fits in with our home life and me keeping on top of that.
  • Bending, lifting and turning my spine and neck still makes my head worse. I usually get a burst of pressure into my head that can take a little while of being calm and quiet to clear. Generally, the straighter I keep my spine the better. However, it does mean that I remain very careful with movement and what I carry. We still have a cleaner (who we employed when I was leaking) who comes for a couple of hours every two weeks to do hoovering, mopping and bathrooms, since this would involve at a lot of bending or lifting for me, and I avoid it where possible.
  • I am still very careful to always go on my knees or crouch instead of bending my back to get things from low down. This action is better for my head and also protects my spine (although it’s not as good for my poor knees. However, the garden kneeler I bought does help a bit with that in the kitchen and outside!!). But I’ve found that it’s just not worth pushing my spine and head. It’s too uncomfortable (sends pressure into my head) AND too much risk for me to see how much I can ‘push’ things safely. There are too many unknowns to take the risk, too many memories of multiple relapses. And treatment and recovery takes such a long time, if I was to relapse again. So I keep movement and general rehabilitation gentle and safe. I want to give my spine the best chance of full and lasting healing.
  • I can carry much heavier things than I used to (with clear self-imposed limits) but I avoid lifting them from low down and I always – by default – tend to carry things against my chest with both arms i.e. one ‘heavier’ shopping bag at a time. This seems to put less strain on my spine and so is better for my head and I guess protects my spine more too.
  • Bending my head to look down (i.e. to read, write or use my phone) is still uncomfortable and can send more of a ‘pressure rush’ into my head. But again, this is improving, and I am aware of it less than I used to be.
  • Sitting down for a while in one position can leave my spine and head full and my body very stiff, possibly linked to my spinal nerves and the pressure changes throughout my spine. So I still have to regularly get up and have a walk about.
  • If I sit down I am still better sitting on a harder surface with a very straight spine. Sitting on the sofa is especially bad for my head. If I’m watching a film or something of length, after about 30-45 mins my head can often feel fuller and cause me to yawn. I can feel very sleepy and my ears start to pop. I often have to get up and move around slowly to ease it a little. I can’t relax back on the sofa or lie down on it either – it’s too uncomfortable for my spine and head.
  • Going to the loo can still affect my head, I have to be very careful not to strain in any way. Even normal slight straining (just going for a wee) can still affect my head, especially first thing in the morning or if I’m trying to clear my bladder last thing at night.
  • When the pressure increases in my head, the tension and pressure in my neck, spine (particularly the bottom of the spine) tangibly increases as well. I feel it as a full pressure-like pain which is uncomfortable, but not unbearable.
  • In the mornings (especially but not exclusively) the feeling of pressure increasing in relation to action or movement can still occasionally make me want to cough, sneeze or even gag. It’s a bit like the sensation of having a ‘head cold’. This is especially true if I end up talking too excitedly OR too frustratedly (normally with difficult children :-)). It can also happen when I am getting ready and using more exertion to put on clothes and things like socks (even though I rest my foot on the end of the bed to avoid bending to do it). But it will normally subside reasonably quickly with some quiet and still time. It has also improved a lot recently.
  • The weather being rainy and stormy can make the above a bit worse (probably due to atmospheric pressure changes), as can having my monthly period.
  • I still have some light and noise sensitivity. Particularly to flashing lights, fast moving images (both of which can still feel overwhelming and make me feel nauseous) and listening to heavier music with a lot of drums and beats.
  • The worst times for my head result from increased stress, rushing or a lot, or talking a lot whilst doing things. I had an occasion a couple of weeks ago when I had to get ready for a church group that meets at our house weekly. Matt was away with work and one of my daughters was being persistently ‘difficult’ and talking frustratedly at me a lot. It completely overwhelmed my head, which quickly filled with pressure, and everything just felt so difficult to do until I could hardly think straight, or concentrate on anything, and simply felt tearful. In these situations I just know that I have to be completely silent to get what I need to done, then try and be as still and silent as I can until people arrive. But sometimes convincing my kids that I cannot deal with talking to them any more when they are already frustrated is the challenge. It took a little while of being very quiet but, by the time people arrived, my head could handle a bit more and I could lead the meeting OK. (Thankfully we began by listening to a recorded group Bible meditation for 10 minutes, so I got to be quiet – which helped settle my ‘full’ head too).
  • Sometimes a lot of talking, stress or attempting to rush can build the pressure and leave me feeling a bit sick and nauseous – like the above occasion did at first.
  • My general biological ‘coping mechanisms’ are still not what they once were. My body and head still cannot physically – and subsequently mentally – cope with and manage stress very well. I was always pretty good at coping with stress and pressured environments before my leak, but now I have to very carefully manage stress and anxiety because of the natural impact it has on ICP. (As I talk more about in my year of recovery update post). As with everything else though, this is thankfully improving slowly but surely.
  • The acute headaches I got post-blood patch whilst lying in bed – especially when I woke (that I mentioned in my year update) have improved a lot in the past two to three months. So I can thankfully generally stay in bed, even if I wake in the middle of the night or early morning, rather than having to get up at crazy hours. But I still often feel uncomfortable and have a milder headache, or my head will especially feel strangely ‘full’ (sometimes it’s still a bit worse and I just have to get up). So I don’t really do ‘lie ins’ and I still NEVER lie down in the daytime. My sleep can fluctuate a bit too, although I tend to have really good times followed by more wakeful times. But that is normal for many people anyway.
  • I am now medication free! About 3 months ago I finished weaning myself fully off the last of my Nortriptyline prescribed for neurological pain. I believe taking it somewhat helped some of the higher pressure symptoms from a couple of months after the last blood patch in September 2017, but more recently I wasn’t sure it was doing much, and I was tired of the constant dry mouth. Coming off it slowly didn’t seem make any significant difference to my symptoms, apart from I no longer have to drink as much in the night or early morning, or chew gum constantly to deal with the dry mouth. Interestingly, though, when my head pressure increases, the dryness in my mouth can return too.
  • My heart finally seems to beat pretty normally again these days. This took a long while to settle from the constant mis-beats and irregularities that a previous ECG confirmed (but were considered annoying but not concerning medically) when I was leaking badly during the summer of 2017. My leak definitely seemed to affect my heart, and then the increasingly poor conditioning probably made the issues worse. Even after successful treatment, this took a long time to gradually get better. All the strange beating patterns made lying down and relaxing harder at first, as they were more prominent when lying down. And this all added to the anxious feelings at the time. So life is more restful not having this problem anymore.
  • I have had to learn to live and ‘flow’ from more of a place of ‘inner peace and rest’. I am learning a whole new, more peaceful and less chaotic and busy ‘way of life’. I have embraced the lessons learnt from this over the past years and vow to maintain a more restful balance in my life moving forward. I want to resist falling back into a more ‘busy or chaotic life’ in the future, even when I can cope with those pressures more. Living from a place of ‘spiritual peace and rest’ is the best way to live long term.
  • I still find long, gentle walking helps my body, head and mind – as well as my connection to God. So I still generally take two approx. 20-50mins walks a day, when I can. I appreciate the surrounding countryside so much more since my years of debilitation. My pace has also picked up a lot in the past year, but I still cannot rush.
  • Filling my mind with positive, calming, spiritual thoughts is so important to enable me to live from a place of increasing peace, rest and love.  I am enjoying using this new peaceful Christian meditation app to help with this (mainly whilst walking or quietly doing housework) www.soultime.com. It’s a great resource to bring more peace, rest, calmness, love and spiritual connection into my day. I also love more peaceful contemporary Christian worship music but generally have to avoid louder heavier music.

So that is a summary of some aspects of my day to day life and the ongoing challenges of recovering from such a life-changing injury.

People often ask me these days …

‘Do you think you will ever get back to feeling ‘normal’ like you did before all this?’

I have learnt to answer honestly…

‘I simply don’t know’.

Perhaps only time will tell!

But my hope and faith rests in God alone and in the fact that I do see so many ongoing improvements all the time. Yes, they are slow, often so very gradual, and sometimes frustratingly subtle in the short term. And yet, as we look back we can see the MASSIVE changes in the past year, and even in what I can do and cope with over the past six, or even the past three, months. That is the hope of continual improvement we hold onto.

When you can keep seeing change it does encourage you to never give up believing for better times ahead.

When I was obviously leaking, we would, at times, also see very slow, gradual improvements. But any improvement would ALWAYS seem to plateau in the end. I would always reach a kind of ‘lid’ that I couldn’t break through. And even if things remained a bit better for a while (especially after treatment) in the end they would always regress or I would fully relapse again weeks or months later due to clear or unclear triggers.

So, seemingly having no ‘lid’ to my ongoing improvement brings us so much encouragement for the future. 

So again I want to share my hope with you all.

It’s a clear hope for the future but mixed with realism about the journey. My journey has been made somewhat easier in that my family never relied on me bringing in an income of my own. Thankfully my husband’s salary covers our family’s living expenses. My ‘church work’ is voluntary – which has actually been beautifully freeing because I can balance it all with the general demands and pressures of family life.

Had I had to try and get back to a demanding career, or had we been reliant on me getting back to earning a wage, we know that it would have made my recovery and our family’s lives unbearably chaotic and perhaps impossible. The reality is, even now I know I couldn’t function working full or even part time in a busy and intense job or career. It’s important that people are aware of this as a potential longer term consequence of living with a spinal fluid leak followed by walking the slow and complex road to recovery.

It is not as simple as ‘being fixed’ then quickly ‘getting your life back’!!

Life may now look very different to what it did before – long term.

And yet, we are all different…

Blog learning patience quote_edited-1

Our stories and experiences will be different. Each of us has to learn to work it all through as best we can with the lives we currently live. Some people may find that they can give more time and energy to re-discovering a job or career, especially if they don’t have so much responsibility around the home and family, and if they have a very understanding employer that is aware of their limitations and their need for a quieter work environment. It’s a balancing act and will take much wisdom to find creative ways to embrace what you can do, whilst being very aware of the limitations and sometimes unknowable risks of what you can’t.

This all takes a certain level of acceptance in finding true peace about your ongoing limitations.

So my deepest prayer for all of us is this…

That we may all receive more of God’s grace and strength to find the way through the unique storms, and sometimes living nightmares, that this broken world throws at us. Your story might have some parallels with mine – or it might be completely different! However, despite the differences, ALL of our stories are powerful. So please consider who your own story might help – today, or tomorrow.

And please don’t suffer in silence!

Speak up, get the help and support you need, and then maybe you can BE help and support for someone else.

Because you never quite know what a difference your seemingly ‘boring’ tale of suffering and pain might have in the life of another desperate, struggling and often lonely soul. You never know what your REAL tale of living in and rising from the ruins of destruction might mean to someone else who currently feels so trapped and destroyed by their seemingly never-ending struggle.

As I was reminded recently in these profound words;

“Your story is the key that can unlock someone else’s prison.”


Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a short or long term complication following epidural blood patching – as I seemingly experienced at least after my last three blood patches. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and very difficult medical journey.

Living With a Spinal CSF Leak.

“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou

I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.

“What if I write and nobody wants to read it?”

I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.

One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’ I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.

Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.

That was the week that I sustained a brain/ spinal injury I am still battling now –

21 months later.

That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’

But my confidence was misplaced.

I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.

I have been living with the consequences of that decision ever since.

In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….

But,
It’s OK!
I am fine!
A bit dazed!
A bit bruised!
No real damage done!

Or so I thought!!

So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,

I WAS DEFINITELY NOT OK!!!

Two days later I was diagnosed with a concussion.

“You should be better by next week.” they told me.  But I wasn’t….It got WORSE!!
So we went down to A&E.

“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.” they said.

No surely, not me.
Give it four weeks.
It can’t be that bad.
That is such a long time!!! (I confidently, yet naively thought!)
I’m sure I can bounce back like any other time I have been ill for a few days.

Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.

We head down to A&E for the third time since my fall.

I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.

I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.

I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,

It was probably due to a  SPINAL CSF (Cerebrospinal Fluid) LEAK!

This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.

So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.

Twenty One months after my fall.

I am still not better!

I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.

But since that fall I have never had one single day of being…

Fully
Symptom
Free.

Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.

But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.

stone wallRecently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.

There are many hospitals that really don’t know what to do with ‘these rare patients’ and this often makes delays in treatment an unfortunate reality for many.

I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.

Having someone tell you “I get it” whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.

We face the daily struggles together!

It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.

I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.

It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.

But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.

I cried so much watching it because myself and many other leakers have faced similar battles to hers.

I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;

‘We have got nothing left to offer you,’
‘Try your best to get on with your life’
‘Perhaps you should try and get out more.’

Which is just a slap in the face when you are literally stuck lying flat in bed!

And yet, it doesn’t need to be that way!

There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.

Peoples minds need to be opened.

Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.

  • Recently I have been thinking; how I can spread awareness?
  • How can I do my bit to help make the way clearer for those patients coming after me?
  • What skills can I offer the cause that might make a difference for both me and others?

One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.

“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.” Plumb

So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.

These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.

stone wallHere is a typical start to my day….

I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!

I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!)  – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.

I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.

My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.

I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.

So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).

FullSizeRender

The nausea is setting in.

I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.

This increases my symptoms.

I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).

Thankfully there is no one else in the lift with me!

I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.

So my husband says, “you’d better go and lie down.”

I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me! 

It’s 9:30am – I have been up two hours and can no longer function upright!!

I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.

That’s how it goes throughout the day every day although later on in the day the up times are often less and the down times can get longer.

If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).

So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.

I couldn’t even have a shower.

I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.

When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.

We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)

It’s an utterly debilitating condition. It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.

They do not seem to realise how impossible it is to live like that!

People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.

There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.

‘Manage the pain?’

I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.

My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’

(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!

IT’S REAL!
IT’S HORRIBLE!
IT’S DEBILITATING!
BUT – IT IS TREATABLE!

Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.

When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.

Those doctors will never be forgotten.

We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.

stone wall

In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.

Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.

I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.

I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.

It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.

Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.

But we can all play our part!

So today I want to ask sufferers and their families to think about;

  • How could you speak up and tell your story?
  • How can you be part of raising awareness too?

We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.

Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.

You never know, they might just take a look especially if you approach it well.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”  – Mother Teresa

Change will only come;
little by little,
step by step,
patient by patient,
doctor by doctor,
hospital by hospital.

By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.

Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.

That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.

Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson


For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

Here is the link again to Dr Carroll’s video.

Click here to read more about my spinal CSF leak recovery following my 4th blind lumbar 40ml epidural blood patch in September 2017 and subsequent ‘rebound into higher CSF pressure/ hypersensitivity to higher pressure’ following that treatment.