Yo. Long time no write. I hope you’re all as well as can be and holding up okay under what has been the most surreal start to a year. Brendan, Ciara, Dennis, The One-We-Unofficially-Named-Emily and Jorge have all gatecrashed our UK weather party and frankly overstayed their welcome. It’s a bit strange to have a weekend without a named storm, to be honest. We’ve waved goodbye to the EU (no I’ll never be okay with that and I still can’t believe it) and now Coronavirus is weaving its way through the world, triggering mind-boggling behaviour with people buying so much loo roll that you really have to wonder what the heck people are eating if they feel that 36 toilet rolls should be sufficient for a few weeks potential quarantine. All this and it’s not even the end of March yet.
Talk about timing…
Clearly my shunt has been feeling in need of the limelight too, so has decided, after nine years of near-perfect behaviour, to retire. At the best of times, this would be a drag. Expected eventually, yes, but still a bit of a drag. But to have it coincide with the single biggest health threat to the entire planet in decades is, to put it mildly, slightly inconvenient timing. Our beloved NHS has been struggling with bed and staff shortages from ten years of austerity cuts and now it has the seismic task of accommodating potentially thousands more seriously ill people. I am certainly not alone in my situation; I have joined the thousands-and-thousands-long queue of those whose operations have been cancelled and who are simply going to have to manage difficult symptoms as best they can until – well, who knows until when? However, my concerns now lie with the whole world staying the heck away from this virus. My close friend has been officially diagnosed and falls into the ‘high-risk’ category, having recently had a liver transplant. So what does he do? Skips off to Switzerland for a skiing holiday, falls over, breaks a rib and then contracts Coronavirus along with seven others out of his party of ten. Yeah…probably didn’t want to do that, bruh.
He called me last night after days of texting (he couldn’t speak for days) and it looks as though he’ll pull through without having to go into hospital. I cannot tell you how relieved I was to hear his voice. He said it was ‘really something you don’t want to go and get’. This from a man who was ill enough to warrant and go through a liver transplant. Noted.
So we high-risk or no, bro?
So – fellow shuntees and hydrocephalus people – you’ve probably also been wondering if being shuntees and hydrocephalus people places you at a higher risk of serious illness if you contract Coronavirus. And like me, you’ve probably been Googling for answers and coming up with – nothing, really. Underlying conditions are more risky. We have an underlying condition. But it’s not specifically listed. Therefore is it risky? And round and round we go.
To get some clarification, I contacted three members of the neurosurgery department at the National Hospital in London (one of them my own neurosurgeon). They all got back to me within three hours of each other. Honestly, you wait nine years before having to consult your neurosurgeons with problems again and then three call you up at once.
Here is what they all said. Of course, none of this is definite. It’s just likely, based on their wealth of experience and what they know of the virus so far – straight from the
horse’s neurosurgeon’s mouth:
- The shunt itself is highly unlikely to be affected by the virus.
- There is nothing about having a shunt which is likely to make a person more likely to catch the virus or be seriously ill if they did. Any serious complication would be likely to come from other underlying health issues, such as diabetes, heart disease or a lung condition which increases the possibility of pneumonia developing.
- Getting coronavirus is likely to make hydrocephalus symptoms worse (headache, tiredness) but those symptoms are unlikely to be dangerous. It still seems to be pneumonia causing lung complications which lead to serious cases.
Do read this article from the Hydrocephalus Association too: COVID-19 Information. It’s a good and reliable summary of information and advice.
Personally, I’m playing this situation on how I usually respond to getting a heavy cold or ‘flu; I’ve ended up in hospital twice from heavy colds gunking up the CSF and causing the shunt valve to pack up. Plus my head pressures get SO bad when I’m ill that I can imagine it’ll be the same if I get this virus. So I’m staying the heck away from people and in doing so, hopefully the heck away from a much-needed hospital bed. I recommend that if any of you are concerned, you contact your neurosurgeon. They are super-busy right now but they’ll get back to you. Mine reassured me with ‘we’re still here, Jordan. We can’t help you as soon as we’d like if you’re not a serious case but we will as soon as we can and we will if your condition becomes serious’. You can’t ask for more than that. This is why I love the team I have so much.
Ah, floor…how I’ve missed you.
So for the next 6 months or so, I’ll be lying flat a lot (seems I’m overdraining). At work, my colleagues were getting used to walking in on me a couple of times a day, lying flat on the floor like a sardine, doing emails.
Lying flat literally fills my head back up and then I’m okay for another couple of hours. It’s been nine years since I last had to do all this so although I’m a little out of practice, it’s all coming screaming back to me! Caffeine also really helps low-pressure symptoms so after the same nine years of not touching the stuff, I’m now having to drink about five cups of caffeinated coffee a day. To say I’m having the shakes a bit as my body gets used to it would be an understatement. Sorry, bod. You’re just going to have to keep up as best you can.
I know these are worrying times. Everyone has their own story. Every person has their own concerns about their loved ones, their job, their own health. We just have to muddle through this and look out for each other along the way. Today my brother, his girlfriend and I started a home shopping/delivery service for the elderly and vulnerable in our local area. I’m dropping the leaflets and taking the orders, my bro and Maxine are doing the shopping, I’m dropping it off to the villagers. All done with gloves, antibac gel, lots of distance and (where possible) washing of bought items before we deliver them. That may seem a little excessive but we’re not taking any chances. The couple we delivered to today had been panicking about what to do so check in (if you’re able to) with your neighbours. Alleviating worry can be so easy to do and mean so much.
Stay in touch, y’all. I have everything crossed that you and your loved ones will all be okay. And if it all gets a bit much, have a lie on your carpet, switch on yer Skype and let’s have a floor party.
Thank you, Jordan, for all your kind words, funny stories and informative life tips.
“ I’ll be down here if you need me”, has also worked very well for me. Nice to hear that I’m not crazy when I tell my family that this IS what my body needs .
Stay safe and healthy,
Hi Kat! Thanks for your kind words; I hope you’re staying safe and well during these strange times. Yes, I’m sure that some of the remedies for our symptoms can seem very strange to others! As long as they work for us though, that’s the key thing. Stay well! Jordan x
Good to see you are doing well Jordan. Obviously not that great as you are overdraining but overall no huge issues. And thx for sharing the answer from your neurosurgeons regarding the covid and hydrocephalus.
You’re welcome Valeria. Still overdraining but keeping on! I hope you’re doing okay. Jordan
I’ve followed your blog for a good while now, happy to see this latest post! I’m also overdraining and spend a lot of time lying flat. Surgical registrar recommended coffee and 2-3 litres of water a day. Consultant shrugged. It does seem a bit far fetched. But my thumping head responds well to it so what can I do?
Hi Laura, how are you doing? Are you still overdraining? Oh god, caffeine is a MIRACLE for low pressure! My surgeon always advises me to take it if I can. The problem I have with that is that I have insomnia regularly so can’t really drink it after midday or I don’t sleep. So it’s a combination of loads of water, caffeine in the early hours and lying flat for periods in the evening (and painkillers sometimes). If your head is thumping I’d speak to your surgeon about options. Mine thumps right now but I’m due a new shunt! If you’re overdraining badly it’s best to see if you can treat it. Take care and keep me posted. Jordan
Thank you, Jordan: I’ve just caught up with your blog and am thinking of you very much. You must be longing to lie on your bed again. I completely agree about caffeine: especially when the barometric pressure kicks in. I had my shunt valve replaced on 12th March and was advised to self-help for three weeks as the sound heals. I now have a Meithnke after a Sophysa which malfunctioned after just one year. I just wanted to ask my fellow shuntees if they still need excessive sleep? I can still sleep for days on end, even though the new shunt is definitely improving walking and memory deficits……
Covid has been so scary for everyone and I’m so glad your friend has made a good recovery. Praying your operation comes as soon as possible…..Take good care.
Hi Susie, well you seem to have what I want; excessive sleep! I suffer with bad insomnia so getting a good night is a constant battle. It makes sense to me that you may need more sleep with a shunt though. I feel tired quite often so have to watch my activity levels a lot which is a bit of a drag. The operation for me is months off yet, but we all just have to tick along as best we can right now. 🙂 Stay safe and take care. Jordan
Hey Jordan, Chris here and I just got my VP shunt in March, March 9th to be exact, in Seattle WA – COVID capitol! 2nd only to New York lol! This virus is from hell and I hope they find a vaccination soon, but i believe i had the virus from December 26th through January 1st when I traveled to my mother’s home and went through the Denver Colorado Airport. I couldn’t figure out why all these Asian people were wearing masks there and now I know why lol! All I know is I started running a high fever between 101 and 103 for five days and had to sleep sitting up or my lungs would fill up with fluid. I had panic attacks trying to catch my breath if I accidently slipped down and was laying flat. The cough was horrific and I truly thought I was going to not be able to breath at some points, but I made it through. Body hurt everywhere and I was sweating like crazy, had the window open in my room even though it was December! I also had horrific head pain with it, but just thought it was my brainstem tumor acting up (turns out I had a bleeding from my cavernous hemangioma on my brainstem which put a hole somewhere along that area and I started leaking csf everywhere). I now know that if I catch this virus (again because I think I had it) now then I dont think I will make it , there is no way at age 53 with hypertension and this damn shunt. Anyways, i just wanted to introduce myself and let you know that people are still reading your blog and the information is very helpful. Blessings and prayers for your health during this crappy time!
Hi Chris, blimey that sounds awful! Yes, the cough was terrible; I felt as though I was choking with it and would, like you, wake in the night gasping for breath. Horrible damn thing!! I’m also worried about catching it again but take comfort in the fact that new studies seem to be showing that those of us who have already had it can have around 80% immunity although we can of course still carry it and spread it. Keep on being as safe as you can and let’s pray that the vaccines reach everyone asap! My intention is to write more frequently now I’ve got some more time on my hands and am a little more recovered. Jordan
Hi from Japan! just stumbled upon your blog as Ive been googling to see what is causing my 8year old (w/shunt) to have pain below his left ribs and also says his shoulder hurts. My search brought me to one of your 2013 posts whiich mentioned stabbing pains. Did you have Xrays that confirmed that your tube was pressing into your diaphragm? Did those pains come and go? My son said it hurts when he sits so he wanted to stay home from school. Funny he can sit just fine at the table for snack;) Thank you for sharing your journey. I will def bookmark your page. I hope the past couple months have been ok for you.
Hi Aki, sorry for the huuuuge delay in replying (see my most recent post to see why). I have had x-rays when the pain has been terrible but the only thing that’s actually shown the shunt digging into something has been an ultrasound scan. Pain in the ribs and shoulder really sounds like the shunt irritating the diaphragm; the prenic nerve connects the shoulder with the diaphragm and often my shoulder pain has been worse than the pain in my ribs. I find that stretching my arms right up in the air can stop it; it probably dislodges the shunt end from whatever it’s rubbing against. If your son is still having issues, I’d have a chat with his neurosurgeon. All the best to you both! Jordan
First time reader but I am so happy I found your blog. I was diagnosed with hydrocephalus last year and its been one heck of a lonely journey. Your blog thus far has been a breath of fresh air. It’s the true experience of hydrocephalus and not always the sunshine happy version that can be told to us.
You’re welcome and I’m glad it helps! Sorry for the late reply; I got rather ill with ‘long Covid’ for 8 months and am only just resurfacing. I hope you’re managing the confusing world of hydrocephalus alright. There are more of us in the same boat than you know which is a comfort to me! Jordan