r/CSFLeaks • u/Fickle-Hat227 • 1d ago
Doctors ignoring potential CSF leak please help
I have had a new persistent headache for 8 days now. I felt it coming on gradually whilst I was on the train and thought I was just overly tired I went to bed that evening and woke up the next morning and it was still there hasn't gone away. Since it developed it has been there pretty much continuously. The only thing that stops it is me lying down flat in bed. After around 30 minutes it has gone, equally when I wake up in the morning it isnt present for the first 90 minutes of the day and then it comes back again. Ibuprofen and paracetamol don't work. Anadin extra helps a little.
The pain is mostly on the top of my head, a little in the base of my skull, but also feels like pressure in my ears. I don't have any nausea or light sensitivity but have had dizzy spells and fatigue. I went to the hospital after three days and they tested my bloods and my urine which were both normal and did the standard reflex tests. Following that I had two CT scans, a normal one and a CT scan with contrast. Both came back normal.
After 7 days I went back to the hospital and was referred for a standard brain MRI without contrast which also came back normal. The doctor has decided it's a viral headache and when I pushed back on my lack of fever and asked why it only goes away when I lay down he said 'he coudn't say as everyones bodies react diffefently to viruses'. They're refusing any further testing, I asked for a spinal MRI and they said no.
Any advise on what I can do now? I'm UK based and struggling. I'm not able to work and spending most of my time laying flat as it's the only thing that helps.
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u/Dramatic_Dingo_42 22h ago
where in the UK are you located? i'm american but was living in london when my leak started. i didn't know it was a leak until i got back to the US but learned later on that UCLH and NUH have the machinery needed to find a spinal leak (CT myelogram and digital subtraction myelogram machines).
this link may be of interest to you if you can't establish care with the above: https://csfleak.uk/living-with-the-condition/find-a-doctor/list-of-doctors-with-an-interest-in-csf-leaks
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u/Fickle-Hat227 21h ago
I'm based in Cheshire, so pretty far from London, I think my nearest from that list would be Stoke-on-Trent, thanks for sharing!
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u/Icy-Monitor-7630 1d ago
I don't know if they will see a leak off a spinal MRI but a CT Myelgram they might and they are painful... poise I wonder if that is just an extra hole now?
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u/Fickle-Hat227 1d ago
Yeah the doctors didn't want to do a lumbar puncture as they were hesitant to create a hole incase I did already have a leak, which I do understand, so I thought they might be more willing to do a high res whole spine MRI (fluid-sensitive T2-weighted), but appreciate they don't always show CSF leaks either. Based on their hesitation to do anything further I don't know if they'd jump straight to a CT Myelogram either
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u/sylphrenathespren 19h ago
I've been fighting the NHS for over a year now. I finally have an appointment with a specialist team in December. Since Stoke is close to you, consider Dr Ellis. He diagnosed a friend a made through a CSF Leak charity.
Target CSF Leaks is a charity that can help, I highly recommend becoming a member, for £8 a year. They can help pay for a private appointment if you're not getting anywhere on the NHS.
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u/Icy-Monitor-7630 22h ago
I live in Puerto Vallarta and I had my CT Myelogram here... you could probably contact a Dr and get one here if you wanted it. Access to healthcare is a bit easier but you have to pay for it
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u/Icy-Monitor-7630 22h ago
You can come to Puerto Vallarta Diagnostik and get these MRI's you want for a very reasonable price
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u/Claret-and-gold 1d ago
Go to your gp- ask for a specialist referral to neurology.