[fireturtle]

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

[kiwi33]

Welcome to NeuroTalk .

I know very little about hydrocephalus but hope that other members will offer you support and helpful suggestions.

Best wishes.

[laura.x]

Originally Posted by fireturtle

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

[HollyW]

Originally Posted by fireturtle

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

Hi

I had a second VP shunt fitted in March and I get headaches, too; I would suggest a cold forehead patch if tablets are not working.

I also find that Headspace (on my phone) or meditation/yoga videos on YouTube are all very good at helping with anxiety. I also use white noise, lavender spray and/or Rescue Remedy to help me sleep.


I hope this is helpful to you,


Holly

[knbourne]

Originally Posted by fireturtle

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

First off, I wanted to tell you that I have had hydrocephalus for 44 years with a VP shunt. I had my first shunt revision when I was 8 years old and until then I didn’t even know I had hydrocephalus. My parents kept me in the dark, trying to treat me as normal as possible. I know they meant well but this is a major no no because hydrocephalus should be checked once a year by a neurosurgeon not a neurologist. Until I was 12 my parents tried forgetting about it again, which then became a problem because once again I needed another shunt revision.

Neurosurgeons are hard to find and my parents had problems finding one right away. Finally a neurosurgeon who usually only takes on adults took me on as a patient but on one condition that I learn and know hydrocephalus better than anyone, including my parents. With that said, he taught me to never be scared to open up my mouth about any concerns I had and, he taught me to know the early signs, even if it ends being nothing. It is better to be safe then sorry.

With that said, trust your instincts. Also you should find a neurosurgeon as soon as possibly because you need to establish a medical relationship before an emergency occurs. Like I stated before neurosurgeons are hard to find so if you don’t look for one now, it could be an issue later on for you.

Also you should be checking it through a yearly CT scan. You should NEVER doubt yourself when it come to your hydrocephalus. If you feel there is something wrong make them listen. For example, I had fevers and really bad headaches with shunt line redness for three months, last year, before the neurosurgeon found that I had meningitis and that my shunt had to replaced. I’m not trying to scare you. I’m just telling you this because you have to trust your instincts and make the medical doctors listen.

[Faxelsson61]

Hi! I don't know if you still have issues with these headaches, but I think it'd be good if I shared my experience. Since I was three, I have had a shunt to combat Hydrocephalus, revised it a few weeks ago. The reason? I had been getting severe headaches, like when you don't drink enough water, for three months by then, cause the shunt was working 'too well' and causing too low pressure in the skull.

Not having a neuro team to consult sounds tricky, isn't there any clinic or so you can contact?