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Sandra's story: the pain in my head was unbearable
It took a while to get to the bottom of Sandra's symptoms, which included unbearable headaches, extreme tiredness and vomiting. A scan showed she had a subdural haematoma (a collection of blood between the skull and the brain), but after surgery the headaches remained. It turned out that cerebrospinal fluid was leaking from her spinal column, with the resulting low pressure (intracranial hypotension) causing her headaches.
After a blood patch procedure to fix the leak, Sandra is feeling much better and is starting to get her life back - read on to find out more.
A few minor symptoms
One year ago I started to suffer with a few minor symptoms. On waking in a morning I had a "thick" headache for a few days as if I'd slept too heavily and I had quite bad pain in the back of my neck with restricted, painful head movement. After a few days of this I misjudged my footing on the stairs and slipped a stair or two. A few days later I was on some steps and I again misjudged my footing and stumbled upwards. I didn't take this too seriously as I thought my mind had wandered and I'd just got clumsy.
However, one Saturday whilst out in town I noticed that my hearing was muffled. It was strange as I could hear people talking to me fine, but I could not hear traffic or some tones of music, yet in contrast, some sounds seemed unbearably loud and they made me startle. My neck was still hurting and I still had the dull headache on rising so I was a bit concerned. I decided to go into a walk-in centre as I am also a diabetic so can't afford to delay any treatment.
The doctor there suspected an inner ear infection as when they checked my ears, my eardrums looked grey, not pink and shiny as they should be. They gave me some antibiotics - and my GP gave me more antibiotics at an appointment the following week. This continued for a further 4 weeks, with the neck pain getting so bad that I could hardly turn my head and my hearing levels being affected most of the time.
Not getting any better
My hearing was still up and down and the neck and head pain had become so unbearable that I couldn't sit up straight away when I woke in the morning; I had to wait for painkillers to work before I could go to the bathroom, because if I lifted my head the pain was unbearable. I frequently fell asleep, no matter who was around, and spent most of my time lying down, which seemed to be the only way to ease the pain.
This did not seem to be getting any better, and the situation was now becoming unmanageable. Many times I was just so tired that I fell asleep in the armchair downstairs. One time my son said he found it difficult to wake me and was just starting to panic when my eyes opened and I asked him the time.
I went back to the doctor's to check out why I was so tired. I had taken paracetamol and codeine as prescribed but nothing seemed to be having any effect on the pain. I tried to explain what had happened but either they weren't listening or my words were jumbled. I was given a prescription for some even stronger painkillers and another change of antibiotics.
Unbearable pain
The next morning the pain in my head was unbearable, and for someone who doesn't "do" headaches I seemed to be making up for the lack of them throughout my whole life until now. As well as the pain, I had started to throw up when I ate, which was not a good sign as I have diabetes and need food to keep me conscious.
We called NHS Direct and I was given an emergency appointment with a diabetic specialist doctor. I had to go to the emergency surgery immediately but I could hardly stay awake as we travelled to the surgery. The specialist doctor examined me and advised that I should be at the Accident & Emergency (A&E) unit without delay, so we left for the nearby A&E Department.
Once at A&E I can't remember much except that I had a CT scan and was sick again as they sat me up when I came out of the scanner. The scan showed I had a Chronic Bilateral Subdural Haematoma - a collection of blood between the skull and the brain, which they suspected had been there for about 6 weeks. . The neurosurgeon who spoke to my husband explained that the blood was possibly a mixture of clotted blood and new blood. He thought this had been there for some weeks. As I had no head injury but was in and out of consciousness I was admitted to the Neurosurgical Unit as an emergency to be operated on the same day.
Burr hole surgery
I was to have burr hole surgery to drain the blood from both sides of my head. I was put on a drip for fluids as I was badly dehydrated, and insulin to control diabetes. I was admitted to the ward in the early hours of Friday 6th August.
The drugs and fluids that were going into my arm started to work and I started to feel a little better. I was given an MRI scan of the head and neck so that the surgeons could see where the blood was coming from. The scan took quite a long time but it was OK. The noise and lying still was probably the worst of it, but for a short time in the scanner, I would receive long term benefits for sure.
My surgery was carried out at 5.45pm and I was back on the ward at 8.45pm. I was told that I had to lie flat until the morning at least. I gratefully accepted that I could have a cup of tea and something to eat as I had not eaten for over 24 hours. I also had to wear some boots that contracted and relaxed all night to encourage good circulation in my legs. These felt like I was having a leg massage, quite novel really!
Suspected low intracranial pressure
After the surgery the surgeons talked about doing a lumbar puncture to take fluid from the base of my spine, but one of them suspected low intracranial pressure (pressure inside the skull) and he came to talk to me. He said that I was to refuse any lumbar puncture because this may cause a leak and I could not afford to lose fluid as he thought I had low pressure to start with.
The neurosurgeons kept asking me if I'd had a bump on the head, however slight, which might have caused the bleed, but I had not. One of the surgeons suspected that I had a fluid leak that had caused the bleed and was asking if I had hurt my neck or back at any time. I had not. They still suspected low intracranial pressure though, due to my headache being worse when in the upright position, so they ordered that I was to fully rest whilst any potential leak healed.
I was discharged from neurosurgery inpatients on Monday 9th August and given instructions for getting my staples removed from my head wounds.
Headaches and pain
I rested whilst recovery was happening. I got confused easily and was quite tired still. The headache was dull but not too troublesome so long as I rested a lot. But when I woke up on Wednesday 25th August (over 2 weeks after my burr hole surgery), the first thing that occurred to me was the pain - the headache was worse. Eventually, the painkillers allowed me to rise. After my lunch the rest of the day was a blur.
My husband brought me my tea and I started to eat. Within a few mouthfuls, I felt the need to sit up but the pain in my head was so bad. I called for a bucket and threw up the only few mouthfuls I had eaten. This was weird. There was no sicky feeling, no nausea, just pain, pain, pain, then sick. The rest of the evening was spent lying flat, drowsy. I took my painkillers and went to bed hoping this was just an “off” day and that tomorrow would be better.
Back to hospital
I woke the next day and it was very apparent that the day was going to be the same as yesterday. The pain was in my head as soon as I tried to sit upright. I took the 3 sets of painkillers on the side of my cabinet and lay back down for them to start to work.
Later in the morning I arose. I had breakfast and lunch and settled downstairs for the afternoon but comfort was not to be. The pain worsened and I dropped in and out of sleep for some hours. I started to eat my tea but within minutes the familiar "full" feeling made me want to sit up. Full of medication I again called for the bucket as I knew what was going to happen.
My husband was now worried again and couldn't cope with this any longer so he called for the emergency doctor. Within a moment I was talking to the doctor on the telephone who advised that she needed to come and see me.
She arrived and advised that I should be feeling better by now as the surgery was 2 weeks ago. The painkillers should have been reduced and not increased and I should not be so unwell. She recommended an ambulance and that I should be transported to A&E without delay.
We arrived at A&E very quickly and we were booked into admission. The neurosurgeons were called and another CT scan of my head was ordered.
The scan showed more bleeding to the right side of the brain and I was again admitted to hospital. Once on the Neurosurgical ward I was administered steroids to reduce inflammation around the area and I was made comfortable with painkillers. But only one set. Simple paracetamol was all it took.
Spontaneous Intracranial Hypotension
I arrived on the ward in the early hours of the morning and was on a painkiller drip and lying flat until I woke properly to go to the loo. On raising my head, the pain was back. They administered care and after a few attempts at getting up I was upright. I was scared and upset and couldn't remember the last few days.
Follow-up MRI scans were taken of my head, neck and spine and the Neurosurgeons said they could see a leak on my scan, showing "extra axial CSF collection between C7 and T4" (In other words, a cyst called a syrinx, filled with cerebrospinal fluid, had formed in the spinal cord). My diabetes levels were checked every hour around the clock because of the steroids affecting my sugar control. Although the sugars were very high I was not getting the high symptoms. All felt normal and there was no headache. I was, however, very hungry all of the time due to the steroids.
Each morning in hospital there was no headache on waking - it was a fantastic feeling. I was waking without lying in bed for a couple of hours waiting for headache to subside as it just wasn't there any more!
I was sent for another head, neck and spine MRI scan which showed that the bleeding was subsiding and it also showed that there was a definite leak on my spinal column between the base of the brain and the middle of my shoulders. I had never had an accident though, so it was described as spontaneous. I now had the diagnosis of Spontaneous Intracranial Hypotension and would be given treatment accordingly with rest, steroids and further scans to monitor my progress.
Discharged
Although the pain wasn't too bad, my memory seemed to be worse. I forgot everything. The bathroom I used every day couldn't be found sometimes, I left things around and couldn't find them, I forgot what I'd asked for and forgot to ask for what I wanted. I didn't recognise people who I'd seen before which could be embarrassing but I had not the capacity to be embarrassed! Although it could be frustrating at times nothing really bothered me too much. I don't think I had the capacity to be worried about anything. The days rolled into each other and the nights were quite sleepless. I was emotional to the extremes and cried at everything.
After 2 and a half weeks my final head scan showed that all the blood had gone and I was discharged. I was told to rest as much as possible and I would receive an outpatient's appointment for a check-up.
Headaches
For a week or so after stopping the steroids the headache was still not there. After this, though, it returned. It wasn't too bad first thing in the mornings but as the day progressed, the headache got worse. The only relief was to lie down at intervals throughout the day. I didn't get the sickness or the sharp pain, thankfully - both those symptoms were absent. My hearing was very sensitive though and I couldn't bear any high level of noise. It was painful.
After 4 weeks I went to the outpatient's appointment and was told that there was nothing else that neurosurgery could do for me and I was to be referred to a neurologist. I was to expect the appointment to come through in the next few weeks and in the meantime I was to rest as much as possible so that the leak in my spinal column would have a chance to heal.
I had good days and not-so-good days when the headache persisted more than usual. There were no days that were headache free unless I stayed lying down. I was still forgetful and confused at times with problems with my memory and my hearing, too. I visited my GP on a monthly basis for them to check my progress. I seemed to be doing quite well but was still very confused at times and could be quite depressed too. They explained that I could have some treatment for this if it became too troublesome, but I decided to wait a while to see if I could fight to bring myself forward. I am usually a very positive person with a strong mind so I had a good chance of putting up a fight.
Neurology appointment
My Neurology appointment time soon arrived and I went there not knowing what to expect. The first thing was a headache form with multiple choice questions. As I was struggling with this sort of thing I found it impossible to complete. One question asked if my headache was worse today than it was yesterday and as it occurred to me that I just didn't know I started to cry with frustration. The consultant was brilliant, though, and said that it didn't matter too much if the form wasn't complete. He also told me that he could help me.
I was admitted to hospital on the spot and I was told that I was going to have to be taken off painkillers and given intravenous caffeine immediately for the low pressure headache, another MRI scan to check what was happening and then to have an epidural spinal blood patch (a procedure where blood is taken from a vein in the arm and injected into the place in the spine where fluid is leaking. The blood then clots and stops the cerebrospinal fluid from escaping).
The leak would not heal on its own
I was taken to the ward and they gave me a headache chart on which I had to keep a record of the severity of my headache each hour of the day. I was given an electrocardiogram (ECG) to ensure my heart was in a good state to take the caffeine. Everything was OK, so the caffeine was started. I am not sure how long I was on the drip but I think it was around an hour. I didn't feel any effects at first but by night time I realised that I was not at all tired. My head felt so much better, though.
The next day I was taken for a head, neck and spine MRI scan and the results confirmed that the leak was still there. This confirmed that it would not heal on its own and that I would certainly need the blood patch. After 3 days the caffeine started to wear off and the head and neck pain started to come back again. My blood patch was booked for the next day.
Blood patch
On the day of the blood patch I was taken to neurosurgery where I was to lie on my side inside the CT scanner whilst the surgeon carried out the procedure. I was very nervous but the radiologists and the surgeon were so nice and they put me at my ease. The surgeon told me he had done this procedure many, many times with full success and he expected the same result for me.
I was able to watch what the surgeon was doing behind me on a large screen that showed where he was inserting the needle. They took the blood from my arm and injected it immediately into my spinal column to seal up the hole. I was asked to say what I was feeling as the blood went in. Although there were some very strange sensations, none of it was scary and nothing about it made me panic or upset me.
When it was all finished they took me back onto the ward where I had to remain lying down with my head lower than my feet at 30 degrees for 4 hours, as instructed by the neurosurgeon. It was a little uncomfortable staying that way, but I would potentially get lots of benefit when it was all finished!
After I was able to get up I noticed that my headache was about the same - dull and progressive relative to how long I was upright. The surgeons told me that they expected a slow improvement over the following days and they wanted to see me again in one month. I was discharged and told to rest completely for the next week to allow the blood patch to heal. After that I could start to get around a little but not to overdo it until I'd been seen again.
Headaches got better
One month afterwards at the outpatient's appointment, my headaches had got better and the change in how I felt was indeed a relief. The memory problems were certainly not as bad although they were still there, especially when I was tired. I got tired quite easily but I was now able to make it until teatime each day before I had to lie down. At my appointment I was told that I would need to be seen in 6 months' time. Until then they would expect a slow improvement as the leak healed and the pressure in the brain started to normalise. It was explained to me that sometimes blood patches need to be repeated and this would be reviewed at my next appointment.
I was then told that if I felt up to it I would be able to go back into work. I returned to work a month after the blood patch and coped with a steady increase in hours to reach my full-time target.
I'm so much better now
At 5 months post blood patch and 1 year post surgery, I am working, getting out and have very few times when my headache stops me. I find that exercise helps, too. If I sit for too long then my head does start to ache. I still get neck pain and sometimes it's worse than others, but its bearable. I rarely have to take painkillers now, as the headaches are mild and a lie down for half an hour usually does the trick. If I do have to take them, then a dose of paracetamol is enough and I don't need anything stronger. I'm so much better now than I have been for a long time. It's 14 months now since my first symptoms. To show for that time I have holes in each side of my skull, a headache that's nowhere near as bad as it has been, and I'm starting to get my life back due to the people who have helped me along the road to recovery.
Today I've had my 6-month neurology review and it went very well. I am to be seen again in another 6 months to enable them to monitor how I am progressing. I'm not back to the pre-illness brain capabilities, but I've definitely come a long way in the last year in working to get my brain to function quicker and more efficiently. I am now even able to identify the areas where I'm challenged and this wouldn't have been possible before. Now I know my challenges I can take them on and achieve them the best way I can.
I hope this helps anyone who is going through a Bilateral Chronic Subdural Haematoma or Spontaneous Intracranial Hypotension and their friends and relatives and I hope it encourages you to think positively. You will recover, it's only a matter of time until you start to get your life back. Something I wrote when I was at my lowest that put me in the right frame of mind to look forward and not back: "This is a temporary stop... normal service continues shortly."
Further information
If you have any medical questions about headache, subdural haematoma, intracranial pressure or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.
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