Hi guys, my name is Lisa and I'm totally new to this community. I'm really hoping to find some sort of explanation or something that could help me understand and cope better with what I'm experiencing at the moment. I'll give you all the background information that leads up to this point.

I had a VP shunt put in 26 years ago, as a result of hydrocephalus caused by an astrocytoma. In the whole time I have had the shunt I have never once had a shunt review. Around 10 years ago while seeing a neurologist for terrible migraines I’d been getting, I mentioned about how painful it was around the valve area of my shunt (it wasn't constant, only intermittent). She pushed the reservoir, said it had probably stopped working, and there was nothing they could do. Since then, the pain around the valve area, as well as the distal tubing, has become more regular.

8 weeks ago I went to see my local GP as I could feel a break in my distal tubing. Just above where the breakage was I could feel there was another bit of tubing which was also close to breakage. I doctor sent an urgent referral to my neurosurgeon. One week later I was back to see my doctor because the pain had increased and the breakage had become pronounced.

He sent me to the emergency department at Auckland Hospital where I was seen by a neurosurgeon registrar and later admitted to HDU in the neurosurgery ward. My first ever shunt series x-ray confirmed the breakage and a CT scan showed no hydrocephalus.
I feel it important to add that for a long period of time now I do believe I have been shunt independent and the reservoir of the valve has been completely hard with no movement for many years now.

As the neurosurgeons believed my shunt has stopped working for a lengthy period of time and with no signs of hydrocephalus, it was obvious that it was not life threating. Theyt prescribed me with Sevredol and Nortriptyline which gave me some relief of pain and helped me sleep. I was discharged two days later with an appointment to see my neurosurgeon again in 3 months’ time.

The pain has been increasing on a daily bases and 2 weeks after been discharged from hospital I was back seeing my doctor again as the valve has become dislodged from my head. My local GP again sent a urgent referral and we increased my medication.

As it stands today the pain is unbearable and the valve has clearly dislodged further. This movement the VP shunt is causing pulling on the distal tube which is causing me a debilitating pain.

I’m at the point where I can’t anything (my husband even typed this post for me – I can’t even do that), I have heat packs and medication to try and get through the day but to no avail.

While in HDU I was full prepped for surgery however the neurosurgeons on their morning rounds informed me that they weren’t going to go through with the procedure – instead they referred me to the pain clinic and discharged me.


Soooo.... – is there anyone here in this group who can relate to the debilitating pain caused by a broken distal catheter and the movement of the valve / resetting of the whole VP shunt system upon breakage?

Also – how can this be referred to a pain clinic and not straight into surgery?

I would love to touch base with anyone who has had a similar experience.

Kind Regards,
Lisa.