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Old 09-11-2018, 02:55 PM
laura.x laura.x is offline
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Join Date: Feb 2009
Posts: 3
15 yr Member
laura.x laura.x is offline
New Member
 
Join Date: Feb 2009
Posts: 3
15 yr Member
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Quote:
Originally Posted by fireturtle View Post
Hi, I’m new here but I’ve lurked over the years. I’m nineteen and have had hydrocephalus and a VP shunt since I was 4 days old. My shunt has been revised twice, once at 4 and once at 8. I was discharged from my neurologist team when I turned 18 and they told me that since my shunt had been working for eleven years, without need for further revision, it is unlikely to need replacing.

I had a bad experience when my shunt was revised when I was eight, as my ventricles didn’t present as swollen on the CT scan and the neurology team basically refused to revise the shunt. It took half a year of severe headaches seizures and vomiting for the neuro team to finally operate; on coming around afterwards they said that if I was left a day later, I would have died. Which is a great thing to tell an eight year old, huh?

But from this experience I get extremely anxious when I have headaches now, I have no neuro team to consult, and my mother is also an anxious woman who would want me in hospital at a sneeze - I have no one to calm me down in situations like this... so please help

I’ve been having headaches for the past few days, they seem ‘different’ to shunt headaches somehow as they’re quite mild but still there. On the occasions they are a bit more severe they are eased by painkillers but don’t totally fade. If they do fade, they come back a few hours later; I go to sleep and wake up with a headache. It’s been ongoing for about three days now.
I haven’t vomited, I don’t feel weak and my vision is fine. I live in the U.K. and it has been extremely humid and muggy meaning I have mild hay fever and I’m kinda stuffy.

So. Given that you have read that essay... it is unlikely that the shunt is failing, right? It’s definitely just hayfever, and I should stop worrying? I’m torn, sometimes I’m like, ‘it’s definitely not my shunt’ and then I’m like ‘what if it is!’ - someone tell me I’m being an anxious mess and put me out of my misery

Hey Fireturtle,

First off - welcome. It's nice to "meet" you, though would be better under different circumstances! I am so sorry to hear of what happened when you were 8 years old; that was extremely unfair and must have been quite the ordeal. It is understandable that the situation has resulted in high anxiety when headaches occur!

It's really not up to me to say "yes" or "no" to your question - you are the one that knows your symptoms best. With that, you've also clearly identified that these headaches don't feel the same and that there are other factors at play (ie: heat/humidity). I know that personally, heat, humidity, air quality issues (ie: smoke that we have been getting from Western province) and overall stress result in things like headaches, fatigue, trouble focusing, and difficultly falling asleep, staying asleep and getting RESTFUL sleep.

I can appreciate that it must be challenging to not have a clinician to turn to, and wonder if there's any type of "adult care" option for you. Here in Canada, when we "graduate" from the paediatric system, we are referred to a neurosurgeon in adult care; though adult care is not monitored as often, it means that there is still a clinician to consult. Might be something to look into...?

Try to tune in to the things you're noticing (or not noticing). Anxiety can take a toll on things, but I have a feeling that if you ever DO have a shunt problem, you'll know it!

Sending positive thoughts,
Laura
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