In August 2017, I was asked to have another Intracranial Headbolt in order to see what my pressure was doing. I really didn’t want to do this as you can imagine how uncomfortable it is, having a catheter inserted into your brain. But – I agreed as it was the only way to keep things moving and rule things out. It was put in under local anaesthetic, with heavy sedation but taken out on the ward. I won’t lie to you when I say that that part hurt! Unfortunately, it hadn’t sealed the next day when I sneezed – you can see the lump on my forehead where the brain fluid accumulated under my skin. On alerting the doctors, they reassured me after a quick scan that all was well and that it would reabsorb – which it did. It was a bit scary at first though but showed very little after having it in for 48 hours… just some unexpected high spikes of pressure.
It’s May 2018 now (8.5 years since this all started) and things are moving again with the focus on the large jugular vein in my head…
I have now been seeing both my neurologist (waiting for a decision to re-patch my dura or not and waiting to have a new DSM scan to look for any leaks) and my Neurosurgeon (investigating anything else he could think of to rule out and explain my symptoms) at Royal Stoke for a year now, ever since I was told I had a tumour, that now looks like a very enlarged jugular vein. No one can work me out…as although I look fine if you see me around and about, behind closed doors is another story…
I still have a bad, increasing daily headache, some foods make me spazzy to the point of needing help walking, sounds and lights make me jerky, spazzy or put me in a seizure, being upright affects me after a few hours and any exercise affects me to the point of jelly-like weak legs that make me look drunk. I still can’t shop for long, walk far, dance, sing, go to the cinema, go to a party, go to a wedding reception, etc, without limiting time extensively or just leaving. Flying is traumatic… I do it, but boy, does it hurt and that’s without discussing the embarrassment of non-verbal communication and odd ‘camel-like’ noises that erupt from my mouth – embarrassing for me and all around!
So – what to do…
I still want to work – I love it and it gets me up in the morning. If I spent all day flat or head down, I’d be fine – but it’s hard to teach like that! I will do anything I can to still go to work and have now built a website to promote my own business for English Consultancy. I am a part-time teacher-trainer and fit any training in with my limited diary where flat-time must be scheduled in. I’m so very grateful for my understanding family and colleagues who work with me on this. My symptoms have increased since the new year and I’ve increased any medication to counteract it wherever I can.
However, I think I may have been given a life-line!! Maybe. Possibly. We’re cautiously optimistic after 8.5 years but the optimism is there…
Last December, I was contacted by a doctor in Cambridge asking if I would be interested in seeing him as he had found the scans I sent there when they were investigating if I had a tumour or not. He said he thought he may be able to help me, but I would need some diagnostic tests first. Well, after making quite a nuisance of myself trying to get an appointment on the NHS and still failing after 4 months, I finally agreed to use some of the funding left-over from 2014 to start the ball rolling again. Last Saturday we went to Cambridge and met a wonderfully understanding doctor who totally understood why all my tests came back as clear. Every one. He has a theory and has already tested it to good effect. Here’s what he thinks…
An increase in pressure in the veins in my head, causes an increase in cerebral spinal fluid (csf) pressure. This in turn makes me feel poorly as the difference between my high and low pressures is very small (7-11). As the pressure increases, it can cause the cysts to rupture or leak csf fluid – sending me into low pressure – like a seesaw!! Blood patching helps temporarily as I pop them out again after a while. As I have a very thin vein on one side of my head, and an extremely large one (with a narrowing too) on the other, the veins may increase in pressure as a result of any trigger. This makes me poorly.
His theory is to open up the thin veins with a stent, maybe needing to cut away bone either side of it to allow room for it to expand. This should reduce any pressure that may arise and therefore keep the csf pressure more stable. This could give my dura/cysts the chance to heal themselves without being ‘burst’.
I have to book a venous catheter ‘pressure’ test next and after that he’ll decide on the best course of action. I really want to try the surgery as soon as possible now, as I’ve had enough of the stresses and pain of this for me and my family and am now excited again at the prospect of being helped – either partially or totally. Anything would be a bonus!
We’re preparing for surgery. The NHS list is long, and I can wait for it. But – I want it done as soon as possible – in the summer holidays if I can: then it won’t affect my job. The funds we raised have been used up now with the CT scan & catheter study so it’s likely we will try & fund raise again to meet the timescales. We may need to borrow the funds to get it done. I don’t know the costs until after the next tests but will know soon enough. My wonderful friends & colleagues at school have already started by planning to fund raise for me by completing a 5k fun run. I was humbled and amazed at how quickly they got this organised…I do know how lucky I am to work with such a wonderful group of people. I really do.
If this surgery works, it’ll open up a whole new avenue of investigation towards csf leaking and will hopefully support others with similar problems. I will make it my business to raise awareness for others at Royal Stoke and other hospitals and get others helped in a more-timely manner.
Here’s to the next few months!!
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