Since the end of May this year I have been experiencing an extreme increase in the intensity of the normal (well, my normal) 24/7 headaches. Fortunately I have only been getting these extreme headaches once a week but they are incredibly hard to deal with when they are here. When I have them the intensity of the pain comes in surges; it varies from moment to moment.
When I was first diagnosed with my brain tumour the only prominent side-effect of the tumour was headaches and a lack of energy. So I have lived with headaches for a very long time (20 years in October). However, there have been periods when these headaches have intensified. Generally when my shunt has blocked.
Because of where my brain tumour was, and a mound of scar tissue now is, there is a blockage of one of the main ventricles (or ‘pipes’) in the brain. Because of this cerebral spinal fluid wasn’t able to drain out of the brain and there was a huge amount of pressure in my brain (this state in the brain is called hydrocephalus). They put a shunt in and this functioned well until the late ‘90s when it started to block.
In 2000 the shunt blocked well and truly and they tried to remove it unsuccessfully. I had to have 6 lots of neurosurgery in 8 days as the brain had grown attached to the shunt and their trying to remove it caused haemorrhaging, clotting and, it is now thought many small strokes.
After all that surgery I had four years without any further blockage problems. My tumour grew and I had to have radiotherapy in 2002, but no shunt blocks. However, in September 2004 I had a bout of extreme headaches with visual disturbances and it was found that my shunt had blocked again. On the 14th of September I went in for surgery and came out of it well. They replaced the shunt and everything seemed to go according to plan. My vision came right and it seemed like I was out of the woods.
However I began to have severe headaches with visual disturbances again on the 20th of September. These increased and I was woken in the night by another violent headache that was an ‘off the radar’ headache (in terms of intensity) with extreme visual disturbances. I was briskly taken in to hospital where, because the only neurosurgeon able to do the best surgery was out of the country for another 24 hours, an external drain was put into my brain. The following day they put a clamp on the drain to cause the pressure in my brain to increase again (as, in order to do the surgery, there had to be an excess of fluid in it).
On the 23rd of September I was taken down to theatre to have a ventriculostomy done. In spite of its long and complicated sounding name, a ventriculostomy is quite easy to understand once explained.
Because there is very little room in the skull for anything other than the brain, the level of cerebral spinal fluid has to be kept stable. If there is excess CSF (cerebral spinal fluid ) in the brain this causes pressure in the brain, leading to intense headaches and visual disturbances. When this is the case a form of drain has to be inserted into the brain to drain the fluid. So on the 23rd of September Mr Law did a ventriculostomy.
In lay-man’s terms, a ventriculostomy, unlike a lumbar drain, is open all the time. It's connected (as with a lumbar drain) to a sterile, closed system. It's also connected to a levelling apparatus that in some cases is kind of fancy and in others involves, like, an old radio antenna and a marked pole.
The goal of my having this was to get the CFS in my system draining through this new, levelled system. I was watched like a hawk by a nurse to make sure that the ventriculostomy drain stayed at a particular level, ordered by the doctor. During this time it is monitored, to check that there wasn't too much or too little fluid draining out.
With this surgery there were similar risks as having a new shunt put in, meaning that it could block. The operation has a 60 – 70% success rate so there was a 30 – 40% chance a shunt would have to be put in again. I am so incredibly fortunate that the ventriculostomy didn’t block again but there is always the possibility that it could happen and that is why I find it frightening when I have a return of the symptoms of blockage.
After these 3 lots of surgery in 1 week in 2004, with 2 lots on consecutive days, I was pretty shattered. It all went well and was very straight- forward for the surgeons. However, after this surgery I had to be put onto a high dose of steroids to reduce the swelling in my brain.
I had to remain on steroids for several years and, well, my experience on steroids is a whole other blog. In short, I put on 40kg in 10 months on the steroids which adds another daunting factor to ever having to have this surgery again.
So even though to the outsider, what I have been experiencing of late just sound like mere headaches, their being a very distinctive type of headache carries with it many unpleasant associations and anxieties.
On Friday (the 5th of July) afternoon I had extremely intense head pain with the pain around my eyes becoming extreme in the evening. In reality, I should have headed to hospital then (as I had been directed by my neurosurgeon) but we had been in the city all day and were half way home in peak time traffic and I just couldn’t face it. I stated that I would do so if it was bad the next day. Yesterday it was bad again, but not as intense as on Friday night. We went into the hospital and I was eventually given a CT scan that didn’t show any abnormality. However, because a fluid blockage in the brain can drain very quickly I am still unsure as to whether it can be ruled out (I had many episodes of my shunt blocking in the evening, and then draining by the next morning when I was scanned before it was ‘caught’ blocked in a scan in 2000).
It has only been in meditating on God’s words in the Bible, and meditating on his promises for my life that I have been able to keep my anxieties about all this at bay.
The key verses that have really been feeding my spirit over these past few weeks have been these ones below.
Proverbs 3, verses 5 – 6 says “Trust the Lord with all your heart and lean not on your own understanding. In all your ways submit to Him and He will make your paths straight.” Trusting God is to me absolutely imperative as I can’t actually see what is going on in my brain. Whenever I try and work it out, I get it wrong and get anxious so in my mind it is only sensible to trust in God who does know and understand what is happening.
The second verse is one that has comforted me from the day I was diagnosed when it was given in a card to me and my family. It is Psalm 139 verse 16: “Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”
Knowing that God has known about what is new and frightening to me since before I was even born has always been a great assurance to me.
Jeremiah chapter 29, verse 11, I also find to be an incredible reassurance. It says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
And finally Psalm 91 verses 14 – 16: ““Because she loves me,” says the Lord, “I will rescue her; I will protect her, for she acknowledges my name. She will call on me, and I will answer her; I will be with her in trouble, I will deliver her and honour her. With long life I will satisfy her and show her my salvation.”
This chapter in the book of Psalms in the Bible was again given to me in a card when I was first diagnosed and has always brought me great reassurance. Knowing that God is with me when things get troublesome and hard, and knowing that He will deliver me has always given me a sense of peace during trials.
So even though things are, at times, scary with these current extreme flares in my headaches, neck and eye pain, and even though I am having recurrences of the symptoms that have led to trauma in the past, I am holding onto God’s word, God’s faithfulness to me in the past, and the hope that there is in that.