“Courage isn’t having strength to go on, it’s going on when you don’t have strength.” – Napoleon Bonaparte
Each of us has a story. Our life stories are unique to us. Lives, circumstances and even illness and injury are not often ‘text book’.
We are all individuals and our lives and bodies are complex.
I want to continue to share my own story, in the hope it might help you on your journey and also hopefully educate people about some of the complexities of these conditions.
I have chosen to write the post specifically with CSF leak and post concussion sufferers in mind. Which is why it is longer than my normal posts.
Over the months I have read about other peoples stories.
Some of them tie into my own experiences.
So I wanted to add my own story to those out there. Maybe you will relate to it. Maybe not. But I hope that it helps you regardless.
“Facing pain may require more courage than we’ve ever had in our lives.” – Samuel Chand
We all have days and times in our lives when we don’t want to get up in the morning. When life is busy, stressful and hard work. Times that you crave to be able to stay in bed all day read a book, watch TV or listen to music.
Then you get ill or injured and, for a time, staying in bed all day becomes your reality.
And it is far from easy.
If you have seen any of my previous blog posts you will know I fell off a ladder 9 months ago and sustained a concussion (mild traumatic brain injury) and was later diagnosed with post-concussion then 8/9 weeks later, a CSF Leak (Cerebral Spinal Fluid Leak). Which we assume is somewhere in my spine.
At the moment I am lying flat in bed writing this. I have spoken about lying flat in many of my blog posts, but what does this actually mean?
I mean my upper body and particularly my head has to be flat on the bed or sofa. Sometimes I can use a very thin pillow to support my head. Often even that lifts my head too high, so I tend to spend most of the day, and sleep, without a pillow. I can be on my back, side or even front.
But my head must be as flat as possible
When I was in hospital, both times, It would intrigue me that so many very ill people are propped up in bed with pillows and their beds raised up.
That concept is unthinkable for me at the moment. In fact the reality is that would just be a form of torture. It seems alien to me to be unwell and sitting propped up.
I have a routine now where I drink lying flat (even cups of tea) using straws. I eat all my meals and snacks (apart from dinner) lying flat. (I just eat dinner extra fast so I can lie down again quickly).
My first time in hospital the pain had got so unbearable that my husband would feed me dinner, so I could lie flat, because that is the only way I could manage the symptoms and the pain.
Nine months later, following a relapse, I have learnt to manage it a lot better. The main way to do this is just to avoid being upright for more time than absolutely necessary. Five or ten minutes is normally manageable. Beyond that is often unbearable.
You have no choice but to lie down because it reaches the point you literally just can’t function upright.
So I currently try to only get up when absolutely necessary.
When I lie flat I am almost symptom free. I say almost, because I still can feel weak and dizzy and get some aches and pains.
But lying flat I generally feel more like me:
I can write,
I can talk,
I can think.
I feel more normal!
Sitting or standing at the moment is a whole other issue. You would not believe how you can go from feeling mainly symptom free to feeling really very ill in a matter of minutes or even sometimes seconds of being upright.
Since I was diagnosed with a CSF Leak, I have caused the doctors and Neurologists a lot of confusion because my full set of symptoms are not fully in line with their normal experience of a CSF leak.
Most doctors experience of CSF leaks are mainly from epidurals that have gone wrong or lumbar punctures (LP’s/ Spinal Taps) where the hole in the spinal dura won’t close. Also people can obviously get cranial/ skull leaks from trauma, which can be seen through spinal fluid dripping out your ear or nose. These can be (but not always) easier to diagnose and often easier to treat.
Spinal leaks, whether spontaneous or through trauma (as in my case), often cannot be easily seen or proven. Which makes diagnosis and treatment problematic.
Mine also seems to be connected to the original post-concussion diagnosis. Which tends to confuse doctors because I often present at A&E with symptoms that are more in line with post-concussion syndrome/ post traumatic migraine.
The telling sign that there is probably a CSF leak, in the mix, is that I have the postural element of the injury. I am generally symptom free lying flat, but symptoms build when upright. If I am upright for too long the symptoms will also extend to lying down for a while after, but they always dramatically improve.
This has lead the Neurologists to conclude that they think I probably have a CSF leak that exacerbates post-concussion migraine symptoms. I will try and explain this to you further in the hope that it might help other people with similar issues.
A couple of weeks ago I was admitted to hospital following an almost total relapse of symptoms. There are a few things that were slightly better than last time I was admitted 6 months ago, but generally it’s the same thing. I think perhaps part of the difference now is that I know how to manage the injury better than I did before.
Here were my symptoms I was admitted with (in no particular order).
Speaking difficulties, including slurring of words and inability to fully express myself.
Drunk like behaviour.
Pressure in the head.
Neck stiffness & pain.
Pain at the lower back of my head.
Photophobia (light sensitivity)
Shaking and spasms.
These are actually almost the same symptoms I had every time I visited A&E since my injury (4 in all). The third visit I was in such acute pain in my head/ neck that they tried to give me morphine, which rather than take the pain away, made it worse and made me very sick so they decided to admit me for a brain MRI scan.
It was only through this first admission that I finally got to see a Neurologist who raised the possibility of a CSF leak due to the postural nature of my symptoms.
The consultant looked into two possible diagnoses: Post traumatic migraine from the concussion or a CSF leak.
Neurology then set about to investigate the CSF diagnosis which proved more problematic than we would have hoped.
If you read up on CSF leaks you will soon discover that diagnosis can be immensely difficult.
Unless you have recently had a lumbar puncture/ spinal tap, an epidural or spinal surgery and then present with postural headaches. Proving you have a leak and finding it can be a bit like looking for a needle in a haystack.
They firstly did an MRI brain with contrast which came back clear of Intracranial Hypotension or ‘brain sag/slump’. This is the condition that low CSF causes. Basically, because there is less fluid round your brain, your brain then falls in your skull, due to gravity, when you are upright. The pain and symptoms are due to the pressure this puts on this area of your head and the stretching/ squashing that occurs.
It is not unheard of for these scans to come back clear. And from what I have read, severity of symptoms do not necessarily correspond to these scan results.
So they attempted to find a leak site in my neck via MRI. This also came back normal. Which is again not unusual.
The leaks are often minute. Most imaging, even MRI, is not powerful enough to locate them.
They then did a lumbar puncture/spinal tap to look at opening pressure. Mine was a 7. They said they would consider it to be low if it was 8 or lower. Worse cases of CSF leak are often a 3 or below. (Normal is about 10-20).
So that supported the diagnosis but it was not a definitive diagnosis.
When they did the LP I knew it was the same sensation I felt. However, following the LP I had an additional headache which was even worse, again postural, and all my other symptoms increased too:
Instability walking etc.
My back also hurt a lot at the site of the LP.
These restored back to what they were before the LP a couple of days later.
I then had an MRI of my spine which came back clear.
The neurologists then decided to try a high volume blind epidural blood patch. Which is used to treat spinal CSF leaks when they can’t locate the leak site.
Usually if you have had an LP or an Epidural they know where the leak is so they can inject the blood patch into the same location in the lower epidural space in the spine. This is supposed to help seal the leak through the blood clotting and generally increase the spinal fluid pressure. These procedures have a high success rate.
It wasn’t easy for them to agree to get an anaesthetist to do a blind patch at first, because of the higher risks involved and lack of evidence to back up the diagnosis. Blind blood patches are a lot less effective than ones directed at the actual leak location.
The problem is we think, it is possible, that my leak might be in the upper or even cervical (neck) spine. To do a blood patch higher up the spine is very high risk because of the lack of space between the vertebra to reach the epidural space and because of the proximity to the brain.
Eventually a team of anaesthetists agreed to do a blind blood patch and they took me down to surgery to do it. I think they managed to inject 30ml of my blood, taken from my arm, into the epidural space in my lower spine.
The consultant anaesthetist then advised not to do a second blood patch, even if symptoms did not improve. When people have blood patches following an LP or epidural CSF leak, relief can often be quite instant. They will also often do a second or even third blood patch if the first one fails. In my case they were concerned about doing another high volume patch without further investigation.
I laid flat on my back for about 15 hours after mine, without moving, to help it to ‘take’.
When I was able to get up some things had improved, some things hadn’t.
I had the choice whether to be discharged or stay at hospital to pursue more investigations and treatment (which was not a simple route). I chose to go home (having been there 18 days) and work on my recovery and hope and trust that things would improve.
And things did improve, a lot. Within a few days I was back on my feet. I could walk on my own again outside, I could drive short distances. I didn’t have as much problem with head pressure and pain.
But it was still there.
I always put this down to the fact I had had a brain injury (concussion) prior to this and had been in bed for 3 months.
Surely things would just take time.
Symptoms improved gradually and I thankfully pretty much got back to normality.
But I still suffered with head pressure, head pain, spaced out symptoms, dizziness, back pain (from the blood patch) and neck pain.
I still found I could not get through a whole day without lying down flat. Life became about pacing myself. Staying positive and believing that things would keep improving.
Then I relapsed.
Perhaps I did too much.
Perhaps I took too many risks.
Perhaps it happened regardless of what I did.
Over the period of about 2/3 weeks things got progressively worse. I had to lie down flat more and more during the day to cope and compensate.
I went back to the GP, got a referral back to Neurology (which I would have to wait for an appointment for). Tried lying down for most of two days to see if that helped.
Then symptoms got overwhelming and we headed back to A&E for the fourth time this year. As I talk about in ‘Learning Patience’.
The thing that again confused the Neurologists was why did I always present with symptoms more in line with post-concussion syndrome/ post -traumatic migraine BUT the symptoms are obviously very postural.
Why did I not just present with an unbearable postural headache, as in ‘normal cases’?
I understood this dilemma myself because when I read about symptoms. Most people would talk about unbearable headaches, and even though I experienced headaches, they were not always fully in line with others descriptions.
In fact, other people’s descriptions were probably more in line with the additional headache I experienced during the couple of days after the LP. That headache was more distinctly a headache as well as increasing all my other current symptoms.
What I tend to experience is nothing like I had ever felt before.
I will try and explain the sensation I experience at its worst.
I sit up, almost instantly my head begins to cloud over and the pressure builds, that makes me feel dizzy and unstable on my feet. Each minute of standing this increases. It feels a bit like you have been whacked round the back of your head by a heavy object.
What feels like a stiffness in the upper neck then increases followed by what moves from an ache to an increasing pain at the bottom back of my skull.
After a bit it can feel almost like I am being strangled, from the back of my head. I can also feel a pressure behind my sinuses, it can make me cough and gag, the front of my neck gets tense. I struggle to think, can struggle with my words, increasingly struggle to walk without support and then if I am up too long I can end up twitching/ shaking and having small spasms.
You become consumed by doing what has to be done as quickly as possible and getting back to lying flat. I feel very irritable and shaky because I just physically and mentally cannot cope with being upright.
The longer you are upright, the worse it gets and the longer it takes to recover lying down. Once back lying flat it often can take a few minutes to recover from what can only be described as the trauma of being upright. (Occasionally it takes longer to recover).
The doctors always ask me ‘do you have a headache’? or ‘how is the headache’? But to me it’s not simply a headache.
It’s not just about a crazy ‘pain in my head’ it is more than that. It’s an intensity that is unrelenting and sets off various other symptoms. Pain is one of those but not necessarily the over riding symptom.
The overriding unbearable symptom is intense unrelenting and increasing pressure in my head that makes doing anything immensely difficult. Until I reach a point my body and mental processing cannot cope with it anymore and it begins to react accordingly by shutting down.
I just cannot function properly sitting or standing.
It is a headache, I guess, but nothing like headaches I ever had before my injury. I often feel the pain more in my upper neck than head. Previously, the very occasional headaches I had were always at the top front of my head and were completely different. There is no comparison. I think it’s perhaps more migrane like but I never had a migrane so I don’t really know.
Headaches are unpleasant. You lie down and they are still there. You take painkillers to get rid of them. (I have occasionally had a normal headache in addition since my injury – they don’t go away lying down).
These so called ‘headaches’ feel like you are being tortured. My body literally cannot handle being upright. Which is why when I have to sit up to travel to and wait in A&E waiting rooms, my symptoms always increase and I act like a drunk person. I cannot physically or cognitively cope with the strain put on my brain.
When eventually I get to lie down (usually before I see an A&E consultant) I am suddenly not quite as bad. Which is probably one of the reasons the first two times I was discharged as just having post-concussion syndrome.
We didn’t understand the relevance of posture at that time.
When I finally was admitted. I still didn’t fully understand the need to be fully flat. My bed was often at first a little raised. I used large pillows. I sat up to drink drinks, eat, get changed, use the bathroom, speak to people.
I now realise that is why the pain built up to be unbearable. I have learnt not to do that any more. Which means I have generally learnt to manage the pain, without medication.
As long as I lie flat pretty much for 24 hours a day.
It’s a part positive of the condition – I get relief from the torture.
But you obviously can’t live a normal life like that.
“When we face life challenges, we must find a way not only to survive them, but in time, to actually grow from them. We must find a way to keep on keeping on, no matter how hard or painful life becomes. As a result, we can avoid getting “stuck” and live life in spite of our circumstances.” – Kelli Horn
After a few days in hospital, after my relapse, they agreed to try another blind blood patch. Which was again the subject of great debate between the Neurologists themselves and the Anaesthetists (especially because they had initially advised only doing one).
So that is what I am currently waiting for. They said I could have it as an ‘outpatient’ so I get to wait at home rather than hospital. (One blood patch was already cancelled though because of lack of theatre time available and then a subsequent recovery bed).
Blind Epidural blood patches usually have a 50% success rate. Being a person of faith in God and optimism I am choosing to believe it will work and again get me back on my feet.
It did last time. We are trusting it will again. But this time we are praying that it fully heals and will never come back.
You don’t realise how precious a normal life is till it is snatched away from you.
“All the world is full of suffering. It is also full of overcoming.” – Helen Keller
I have and am learning a lot and developed more compassion towards others with long term health issues. Compassion means ‘to suffer together’. There is a beautiful thing that can happen if we allow our own suffering to develop our compassion towards others.
Humanity becomes more unified, gracious and loving as I wrote in ‘We Are All Messed Up’.
If you suffer with post-concussion or a CSF leak I hope that you find a way through, discover the strength you will need and that you will find doctors who understand and can help you.
Having a unusual injury or illness is hard, but let’s choose to keep holding on to hope for the future. Encouraging one another and hoping that doctors become more knowledgable and understanding of this debilitating condition.
There is always hope, there is always progress being made. Life may be hard but there is always something we can do and achieve.
Even amidst the pain.
“Your past mistakes, hurts & pain can help give someone else a future. Whatever we have gone through enables us to help others.” – Christine Cain
UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.
I would love to hear about your stories and experiences with concussion, post-concussion and CSF Leaks? Please do comment below. You never know you might help someone else in the process.
For more of my posts on this subject please see my first post here. You can see my ongoing series of posts by clicking on the CSF Leak and Concussion menu at the top of the page.
To read more about my ongoing story of living with 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.
A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospitals.
This is a wonderful 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 5 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.
This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.
9 thoughts on “Nine Months On: My Ongoing Journey Of Overcoming A Spinal CSF Leak. ”
What an informative blog. Thank you for sharing your story. I am diagnosed with CFS but have some symptoms that are in line with spinal fluid issues…not sure if hypo or hyper but hoping to look into it soon. I also have had multiple severe head injuries so that’s another potential issue.
I have many symptoms and perhaps I have more than one diagnosis ahead of me.
My top symptoms are:
Problems with balance and dizziness
Chronic head pressure that coincides with neck pain
Fatigue and weakness
I have many other issues
Thank you for your comment – those symptoms certainly sound familiar & its definitely worth investigating spinal CSF leaks. Interestingly if you have seen my last post ‘Butterflies in the Dirt..’ it explains I now have a new diagnosis that also stretches back to my original fall – arachnoiditis- which is inflammation of the arachnoid layer around the spinal cord & the spinal nerves. Since treating that all my symptoms improved. But I do also have permanent damage.
I think both conditions & high & low intracranial pressure all cause chronic fatigue. So there are many overlaps.
I hope that you do get some answers – they certainly do help!
Hi, thank you for sharing your story. I myself for over a year have been suffering from terrible headaches and eye pain along with sinus pressure. At first doctors kept saying it was sinus issues, then after scans on those they then said it was migraines. However, one day I was leaning forward picking something up and my nose started leaking clear liquid, then for weeks afterward the same thing, along with the headaches and strange taste in my mouth. Another 4 doctor visits and still “It’s your sinuses” although the scans said there was nothing wrong with those. One day, after several bouts of leaky nose fun I went to the hospital. I was seen and the doctor looked through my medical visits to the doctor etc and asked if I could provide a sample of whatever it was coming from my nose. I obliged and that’s where I am at right now. Waiting on the test results to see if the discharge is csf liquid. I can’t imagine how hard it is having to lay flat most the time, I know though that it’s people like you who still have the will to share their story with others is something very powerful. I truly hope you get better and I hope your symptoms ease as I have only experienced a tiny slice of what your going through and it’s unbearable at times so god bless you and keep going!
James, I am so sorry to hear about your headaches & battles to get answers – I hope you get answers soon. Cranial leaks (where you leak from nose/ ear etc) have slightly different symptoms to spinal leaks. General the symptoms are not as positional (get better lying down). And yet they have the added issue of an open pathway to the brain so can be a meningitis risk etc. Hopefully good testing of the fluid should provide more answers. I hope you find a good team of doctors to support you moving forward. Blessings, Becky
Hi, Thank you for replying. I have results from a LP and noting was found and good pressure also. I am still waiting on a result from the test of the suspected csf fluid from my nose, I would usually be in a state of constant anxiety during such waits for test results but am surprisingly calm which is new lol. I do hope you get a remedy and some restbite from your condition as I can only imagine the stress and unhappiness that must come with this affliction. I do host a podcast which discusses all things mental health if you would ever be interested in featuring i’d be honoured for others to be able to hear and learn your story if you do lease let me know. Stay strong and keep writing.
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It’s good the results of the LP came back clear. I know that good pressure readings don’t rule out spinal leaks (60% of people have normal pressure readings). But I am not sure how cranial leaks effect pressure readings. I hope you get something more conclusive soon. I wish you all the best in your podcast and hope that your own situation is rectified soon. Blessings, Becky